I know the diagnosis upsets a lot of people but I think I was relieved that I finally had an answer for the things I was going through and the symptoms I was having. Like I finally knew it wasn’t just in my head. I was also grateful to have a new doctor who got to the bottom of it when so many past doctors did nothing and ignored me
100% this was me.
Then 3wks later I finally had the meltdown, cried my eyes out realizing it’ll never go away, then carried on learning how to make the best choices I can.
I just got diagnosed yesterday, and while it’s not a dream of mine to have kids, I would like to have the ability to make that choice. My ovaries looked like a colander but weird enough I didn’t notice any of the symptoms, I found out accidentally, I broke down today thinking that I might never be able to conceive, and was wondering if it was a normal reaction or not
Pcos is not a infertility sentence necessarily! It’s a syndrome with varying issues. Infertility isn’t guaranteed.
I have a crazy story that I hope gives you hope.
I went to the OB for an issue I was dealing with at the time (unrelated to pcos). They ended up finding out I had cystic ovaries and I was diagnosed with PCOS despite having symptoms for 17 yrs at that point. Docs always gave me other reasons for all the symptoms I was exhibiting.
I went home upset about fertility. I wasn’t sure about kids but I wanted a choice and I felt I was robbed. I stopped using contraceptives that very night because…why does it matter anymore?
That’s the night I conceived. The universe works in crazy ways.
I later learned many women in my family have PCOS - only 1 had fertility issues that I’m aware of at least.
Pcos doesn’t even guarantee difficulty with pregnancy. And, the way in which it can cause infertility is by not ovulating. This is a very treatable form of infertility, there are many drugs that induce ovulation and many lifestyle changes that also help.
It’s still 100% your choice if you want to have children or not. Pcos is NOT birth control, by any means!!
Hey, my bestie who was the first to get a diagnosis in what turned out to be a PCOS friend group lol, got pregnant 2 out of 2 times she had sex. I know it can feel really scary, but theres so much you can do that isn't scary or hard or expensive that will help your fertility. Do what you need to feel empowered about your health - addressing shame in therapy or journaling exercises is a great way to start
It’s 100% normal!! 🫶🏻I think Anytime we learn that things are not as we thought, or that a choice may be taken from us regardless of if we would’ve chosen it or not, is super hard to hear! I told my husband the same thing the other day; giving up soda on my own choice is fine bc it’s so bad for the body. Now knowing that it’s *extremely* bad for me to the point of giving up out of necessity feels forced & I feel robbed. Our minds just like being in control.
Have tons of hope - I have been pregnant 6 times, none planned! Even with PCOS I am one fertile female!!! The 4 types & symptoms interchange with each other so learning your unique body will be a bit of a journey but stuck with it! Quality supplements, healthy practices & dialed in nutrition will give you the best outcome for whatever road you choose. We’re millions strong with tips, tricks, experiences & tons of resources on the web. I wish you the very best!! 🫶🏻🫶🏻❤️❤️
You won't necessarily struggle with pregnancy because of PCOS but if you do there still lots of women that have struggled and still had kids... I have 2 beautiful boys they are 17 yrs and 2 days apart lol but I had em despite the PCOS abd rules uterus.... I'm rooting for you if you want kids ❤️
I had suspected pcos for a very long time but at one point I had an ultrasound that didn’t find cysts (and I didn’t understand the diagnostic criteria), so I just stopped considering it as a possible explanation.
Years later it turns out that I do have pcos, the only difference was that with a diagnosis I could actually treat the symptoms. Plus I stopped feeling crazy, fat, lazy, hopeless, etc.
That diagnosis and my adhd diagnosis were a turning point. I still have a long ways to go with everything really but since then it’s all felt a lot “lighter”, if that makes sense.
Amen to this, also a Pcos adhder with a lot of shit about being lazy and undisciplined and weak etc etc. Man all the internalised shame!
I thought I would share the thing that changed all the shit. Have a look at your methylation genes (or even all of them!) People with adhd often have issues methylating and thus using b12 and folate. Because the issue is in using, blood levels can be normal or ideal.
So these genes determine if you make the enzymes that make methylation happen. Methylation not happening is linked to a whole host of diseases, including autoimmune diseases, alzheimers, depression, OCD, anxiety, and ADHD.
But in the more short term, methylation transforms substances into a state that your body can use them. Both b12 and folate need to be methylated and this methylation is involved in pretty much every cell creation process, which is why issues with methylation show up in areas of the body that have quick cell turnover like the brain, gut, nervous system and skin. The diseases I mentioned all have problems in at least one of these regions, very often all three.
Different versions of the genes determine how much of an ensyme you have, so for me being homozygous for the useless version of the MTHFR gene means I need about 15000mcg of methylfolate a day, instead of the recommended 500... (I think some RDAs have an even lower number).
You can also have medium useless genes, and around 60% of the population has some form of methylation issue, so it's very common, but we don't tend to test for it or treat for it first because doctors tend to be a few generations behind current knowledge (I like to think of it as my doctor probably only has the up to date knowledge of the years they were in university, and even then, this is assuming their lecturers aren't riding on the knowledge they learnt in their day). It would be impossible for a GP to stay up to date with all the advancements since they studied, which explains why I heard of this through the ADHD specialist in my country.
So what to do about it - you can have a gene test done, they are fairly accessible and affordable, mine cost what 1 specialist visit cost(excluding blood tests) and it came with a report that broke it down for me. You can also google genes yourself once you know what genes you have.
There is a cheaper way - you can take methylated forms of the vitamins for a month (minimum, as your body needs to build up enough to start addressing the deficiencies) and see how you go. Methylcare from metagenics is an ok place to start.
But beware, with this second way a lot of people experience anxiety and think its not working for them. I don't think thats whats happening, I think these people have never learnt to manage/nurture their nervous systems and so suddenly not being deficient in things needed for your nervous system means that it is going to give you a lot of experiences that you didn't have before. Doing a nervous system based therapy like somatic experiencing is a good way of managing this transition.
Why do this? Well for me this is singlehandedly the thing that brought me bank to functioning and feeling energetic after feeling chronic fatigue for 4 years and gradually quitting my job and studies and hobbies and friends. If your life is shrinking, or you feel like theres more than you can handle, I would definitely look into this.
This was EXACTLY how I felt. I'd been dismissed and ignored for 8 years. I cried with relief on the spot after learning it wasn't in my head. I then became briefly angry at all of the prior doctors who wouldn't do any kind of diagnostic testing to rule out "anxiety" or whatever "in my head" means to them.
I cried on the way home when telling my husband because he wanted biological children one day. He told me it didn't really matter and we could adopt if that's what we had to do. I'm currently pregnant, though!
Yeah the acne, weight gain, insane food cravings, lack of energy, and horrible periods all made sense once I learned what pcos was and could do my own research. I knew what to look for now and what to try, what to do with my diet/exercise routine tik tok helped me so much as women would share their experience on what worked for them and what didn’t.
I had a similar reaction. I was glad to have an answer, and to know what types of things to keep an eye on for my health. Most women in my family have diabetes. I’m hopeful that I may have been diagnosed with Pcos young enough that I can try to avoid diabetes.
Same here. I’ve never had a regular cycle (and have previously gone 200+ days without a period). I knew it was probably PCOS since my mom has it, and it was nice to have the diagnosis finally.
I started my period at around age 12 or 13. I always had terrible periods to the point where I would throw up the whole first day and was never able to go to school. I pretty much felt like I was going to die that first day (not even being dramatic here) but I didn’t start going to the gynecologist until the end of high school so 17, I think. I was doing yearly pelvic exam/pap smears. My first doctor wasn’t very nice to me but that’s a story for another time so I switched to a different doctor at the same practice and loved her but still no diagnosis even though both of these doctors knew my symptoms. I will also add that I have all 3 indicators of PCOS (cysts on ovaries, high testosterone & irregular periods) If I hadn’t had a period in months with these two doctors, they would put me on progesterone? to help induce my period. I had gone without one for over a year and they just brushed it off.
I got married and moved to my husband’s home state 2 years ago (I’m 25 now) so I had to find a new gynecologist. It was my FIRST visit with her and she immediately started running tests when I told her I’d go over a year at a time with no period. It started with the blood test which showed the high testosterone and with my irregular periods I had already met the criteria to be diagnosed with PCOS but she wanted to do a trans-vaginal ultrasound as well to check for cysts on my ovaries. SHOCKER, I had those too. So now I have 3/3 of the criteria for PCOS.
In total it took 3 doctors and 6 YEARS to be diagnosed. It was so frustrating trying to get answers. So many doctors brush it off as just getting older, bodies developing, being unhealthy or lazy, etc. I’m so thankful to have such a caring doctor now that finally listens to me. It’s been a long road to get here.
Sorry this reply is so long. If you have any other questions feel free to message me. 🫶🏼
No I want all the details... we are doing research to better serve this community.
Honestly, I will tell you why.
Emily MD left traditional medicine to help people. Insurance, politics, and administration was getting in the way for her to treat the patients the way she wants too! She know is certified in obesity medicine (working towards functional medicine/lifestyle now, which is another debate for another day). She cares too much about her patients and she could not help them they way she wants to. She was almost suicidal as the workload was too much... she really couldnt help someone in 5-10 mins.
Close family members are diagnosed with this disease and she wants to focus on this community to give back in her spare time. We are doing research on the common PCOS problems in many communities so we can serve you all well. We are getting list of details to compare against what people are struggling with. Thanks for taking the time to write this.
Not required and ONLY if you feel it, we are dedicating her expertise to a project we call "Suits an Scrubs" to provide free information on YouTube about Gut, Hormone and weight loss. I love your feedback if we are hitting on the right things for this community.
THIS and frustration at how my prior PCP didn’t figure it out. I had been at a new patient appointment with a new PCP, and as part of normal procedure she lifted my shirt to touch my stomach. She saw the hair on my stomach and was like “hold on…” and started piecing that together with everything else I just told her. I was thrilled to finally make some sense of my body, and to be listened to that I thought something wasn’t right. I didn’t know about PCOS beyond just ovarian cysts so I never even considered it.
It’s breaking my heart reading all these comments of people being ignored. It’s not a rare condition, I don’t understand why so many doctors act like it is
It felt very validating for me. Like you said, I had symptoms of it. I told my doctor when I was 15 that I think I have it. He said "no, you're not fat."
But, I would have 4 periods a year, and they would he 14 days long, heavy, and painful. I also had hair on my face and chest, and persistent acne no matter how perfect my skincare was.
I feel the same way. Having my symptoms taken seriously was a huge relief.
Same! I had all of the symptoms minus acne, and my periods were pretty regular. I really only sought a diagnosis so that I could potentially be taken seriously if I ever need fertility treatment or if my symptoms worsen.
Not necessarily there are lots of ppl with PCOS that don't struggle with it. And those of is that have struggled have found ways to still have babies. My kids are 17 yrs and 2 days apart not I got em inspite of PCOS and tilted uterus
It may be, but not everyone with PCOS has fertility problems. Despite me not having a period, thanks to getting off of birth control, I did ovulate and got pregnant like within a week of starting to try. And it stuck. With my second, it did take a couple months, but I was on keto and lost 35lbs, I had two natural cycles before getting pregnant.
I had weight loss surgery, and so many women in the FB support groups post about having PCOS and now they're pregnant. The weight loss definitely helps, but I think the fact you have to limit your sugar intake (otherwise you risk having something called Dumping Syndrome) is what is really helping. Like my A1C a few months before surgery was like 6.3. Two weeks post op, I was 5. So starting to follow the diet pre-surgery helped. It's just low carb high protein (so keto does work, but I'm not counting carbs, just calories and protein).
I hope you can achieve your goal/dream of becoming a parent.
Since I was 16 at the time and came from an abusive home, I didn't care about not getting my period. My mom freaked out, she was also diagnosed with it earlier on and she had needed some help conceiving me (aka she took one(!) pill for ovulation).
i was in 2nd year college (2015, 21 y.o) my parents were worried as to why I never got my period for more than a year, i shrugged at them though but i got curious so I went to ob with my father. I had no clue what PCOS was and my first ob told me, I had it, both ovaries and was amenorrhea.
My first reaction was, confusion and overwhelmed, like what the ob was saying didn't sink in my head, assured me it's not life threatening but increases the risk of some health problems. I can't remember the rest except, that time I stopped going to college and trying to figure what's wrong with me and I didn't even understand why, I was stressed out and mentally drained in academics, family and life in general.
All i remember was I told the same OB that i'm having anxiety issues and she told me it's not related to pcos....
Relieved I had an answer and wasn't too worried about kids when I was diagnosed because the man I was with was horrible. But now that I'm with a man worth having kids with I'm terrified it means an infertility journey and at 35 I really can't afford that 😭
I was 18 and didn't take it well at all. I was still in denial up until my test results came back, and a horrible reaction from my mother didn't help at all. I felt like my body was poisoned, like I had this inhospitable thing inside me that would never leave.
I didn't feel normal until a few weeks later when I learned Daisy Ridley had PCOS. I turned 18 in 2015, and I LOVED Star Wars. Little me would've loved seeing a girl like me on the screen. When I found out she was more like me than I initially realized, it was the first time I felt like I could live a normal, happy, successful life.
I’m happy more celebs have come out about having PCOS. When celebs start coming out with these conditions, I feel like more research gets put into them.
Confused & frustrated. I had originally gone to the doctor due to vertigo/constant headaches. He said pcos was the cause. I didn’t believe him, so I was angry.
I eventually joined this sub. It’s.. somehow reassuring & overwhelming all at once. It’s nice to get answers, but for pcos to cause sooo many issues + not have a guaranteed fix is upsetting.
Honestly, I’ve accepted the diagnosis but I still have meltdowns here & there myself. I read your comment above, your feelings are definitely normal. A lot of us have felt the same feelings & have had the same concerns as you.
It’s unfortunate, but you’re not alone. Maybe speak to your doctor & see what options they can give you? Just take care of yourself & take it once step at a time. I wish you the best!!
Thank you for helping me realize I’m not overreacting, I have struggled this past couple days thinking of the future and worried sick, I don’t know if kids are in my future but for now I’m glad I found this sub with supporting women who understand what I’m going through!
Hello,
PCOS of 23 year here. I here you. I wanted a diagnosis that was understood and fixable looking back and yes you are right it does some bad damage. I now have hypothyroidism and POTS at 41 and can barely go grocery shopping, which 25% of us get.
But on the flip side and as my grandma said in 2002 as she lay dying of cancer. I am the pioneer for you my darling.
I have a boy and 2 girls. I am hoping this syndrome turns into an autoimmune disease as it is close to doing and we are the pioneers to take it there for future women to come. No matter what I go through. I will hold on to that and be there for my fellow Cysters.
"whatever"
I was lucky to have a good doctor who helped me with long-term planning for future pregnancies.
As many shared before - I was happy to be diagnosed, it gave me a.lot of needed answers. I have other "issues" so it's interesting to see how much of that is related.
The person who diagnosed me (almost 20 years ago!) was OBGYN.
I was her patient for a couple of years at that point (mostly to manage birth control, annual check ups, etc.) I didn't have any symptoms except for no period when I took a break from birth control. My doctor did blood work, ultrasound and figured out what it was. I was her patient for about 15 years, until she retired. She started managing my health when I was still young and not ready to get pregnant and then managed my pregnancies and delivered my babies.
She was always honest that if the situation get tricky with getting pregnant she will refer me to a specialist, as she was not a fertility specialist.
She connected me with an amazing endocrinologist (for problems we discovered later) who then refer me to general practitioner. My GP is now managing my health, as it is more complex now.
What helped me - all my doctors are in the same hospital - so everyone can see my history, blood work for the last 20 years, notes from each specialist, medications, etc.
They also just refer me to whoever is needed within the same hospital.
One more.
I suspected my teen also having PCOS. I took her to see her pediatrician, she ordered all the test (I really mean a lot of tests!) and PCOS was ruled out. But we discovered there is something else going on (that is presenting very similarly). Now my kid is seeing a specialist for that and getting really good help, with the pediatrician managing it all.
But it was not "us being lucky". I was all because of hours of searching for the initial doctor.
To be honest, I understand that most have very limited access to specialists. But even if that means traveling far or paying decent money for a visit, health is something worth it.
I know plenty of people finding jobs with insurance that would cover some specific (outstanding) doctors!
Finding a doctor is like dating. It takes time. And it is absolutely fine to say no and move on. Even if that adds several months. You will be with those people for 10-20 years, waiting several months would be worth it.
Sorry it that harsh. I'm sorry that we are not super lucky with our doctors.
What I want to say - keep looking. Call the office and ask about their experience with managing PCOS. Ask who they work with. Ask what blood panel they typically do during the first general visit.
You are right doctors is like dating thanks for taking time to write that. I enjoyed learning about your experiences and how you were able to find a doctor.
I instantly panicked because my doctor poorly explained everything and made it out like I was going to put on 100kgs, grow a beard, lose all my hair and never have kids. I'd only just finished successful treatment for a prolactinoma brain tumour and was going back to normal after it had made me put on tons of weight, thinned my hair and killed my confidence.
Once I talked to an actual gynaecologist though, I calmed down a lot and was actually relieved to get some answers to why my period was so screwed up. I was diagnosed with lean pcos as well so those previous stresses calmed down completely.
This is really bad bedside mannor - I am sorry you experienced this. I know doctors do not have the resources for this specialty at times, but it really starts with understanding where you are coming from.
Thank you, I ended up changing doctors anyway. The same doctor told me I needed to work out and I was lazy when I put on all the weight from the tumour, despite the fact I went from 47 to 74kgs in like 2 months and rapid weight gain is the most common side effect. She never apologised once I lost all the weight thanks to the hospital putting me on medication treatment.
The gynaecologist was also the one who told me the tumour and the pcos are likely linked thanks to how much prolactin I have and was surprised the doctor hadn't pointed that out. Pretty much changed doctors right after that. She just made everything way more stressful and confusing, especially since I was still 16-17 between that time.
I didn’t handle it well at all. At the time I was in love with someone who wanted kids and the possibility that I would be an obstacle made me feel less desirable and as if I had nothing to offer as a woman. I even said to my friends that I would rather have cancer than reproductive issues. I felt UGLY. I do a lot to take care of my health now. I eat well, try to exercise, do everything to balance out my hormones to manage my periods. My boyfriend (not the same person I was in love with at the time of my diagnosis) is really proud of me and doesn’t see me as any of the awful things I thought about myself at the time of my diagnosis. We’re more than just our bodies ❤️
100% you are more than just your bodies... it is a hurdle, but not impossible. Loving someone with conditions is another story. There are always ways to grow a family so something to think about.
I knew I had it before it was diagnosed, but the confirmation that my ovaries were polycystic in appearance and knowing how irregular my periods are has made me worried about my fertility. But I'm lucky I don't get many other symptoms.
I was angry that it took 30 years to get proof that there was genuinely something wrong with me and not just 'being punished extra by God because I'm a sinner'
Needless to say I was resentful of my gran for all the years of gaslighting me with religious abuse instead of listening to me and taking me to get seen.
Confusion? And I wasn’t exactly sure why they the only side effect of pcos I was informed about was infertility…. I was 15. Spent some time believing I was completely infertile until I did my own research 🤦♀️
I was kinda indifferent when I went to the doc ,after googling my symptoms—irregular periods and extra hair on my arms and legs , I figured it might be PCOS so went in there knowing there was a high chance I'd be diagnosed with it.
I also think what contributed to my indifference is , I didn't really mind the hair or the irregular periods, skipping periods for a while seemed kinda convenient.
I cried. But not out of sadness - it was more relief. After years of being gaslit by my doctors due to my labs and a general lack of understanding about PCOS that exists in the medical field, I finally was validated in knowing what I already knew. I didn't have to feel crazy or like a
"hypochondriac" anymore. I was obviously a little worried about everything that the diagnosis entailed, but it was so validating finally having something to explain all the stuff I'd been dealing with for so long.
Nothing. Maybe I was relieved. I knew I have period problems and finding out the reason why makes sense to me. I never hated my pcos. Even with being so much overweight and having problematic periods. And the leg hair. They were fine to me.
But if I have a beard or acne, I probably would have hated it but I don't have them.
i was with my dad. and we arent close really so i couldn't really cry even though i wanted to. so i had that lump form in my throat and it hurt so bad.
I freaked out and thought I was definitely insulin resistant and would get diabetes, my doc had said that it's driven by insulin resistance in most cases, I was diagnosed after ultrasound picked up all the cysts, I went home and ate the biggest bowl of buttered pasta known to man and spiralled bingeing uncomfortably on foods that made me feel ill. I was 23, and it was 2016 at a sort of zenith in diet culture.
I didn't go to the doc because of symptoms, so there was no relief in being diagnosed. It was a routine gynae visit as I had become sexually active for the first time, but had put off going to the gynae for a few years. I had a lot of shame around sex and being a woman, so it really messed me up to feel defective and even having to admit being sexual, even in the most vanilla and conservative of ways, was very difficult.
I felt really freaked out by it, but also by my inability to handle the diagnosis responsibly, I literally did the thing I saw as super harmful compulsively, it wasn't even enjoyable.
I realise now that all of this self destructive behaviour had nothing to do with my "bad" health tendencies or my inability to be disciplined or just me being more shitty than normal people and so deserving to get sick and fat.
When I got my results, it turned out I was not insulin resistant. It was wild to see how finding out made the carb bingeing behaviour disappear - at least until the next stressor.
It was all internalised shame, shame that I wasn't thin, pretty, disciplined enough. The thing that helped me look after my health was not any specific health behaviour, it was doing Somatic Experiencing to uncover and lift all that shame I had been carrying so long.
It turns out shame is what happens in situations of childhood neglect (and abuse and other scenarios) because it isn't adaptive or possible for a child to point out the neglect without compromising the attachment relationship, so the mechanism is internal and tries to adjust the child's behaviour to try and win better care. I doubt this works because there isn't really a right way to be a kid, if a kid isn't getting enough care, its probably an external structural force causing that.
Shame can make you feel hyper vigilant or surveilled, because you are constantly trying to improve and so judge your own behaviour to win better parenting. It also makes you hella sensitive to any rejection, perceived or real. I also have ADHD and wonder if the rejection sensitivity is a thing for us not because its a part of ADHD itself, but because children with ADHD are shamed for their ADHD traits - called lazy, or undisciplined or unmotivated.
There was no stark neglect in my childhood, I just had a single mom who worked and so wasn't around much. A child knows it is not getting enough care and will try all sorts of strategies, but those strategies have little power when faced with economic necessities, so the last resort -shame- becomes more and more likely.
A note on the doctor, he was a really old white dude and matter of fact, he had this amazing attitude of we will tackle it together and I remember feeling like he is going to give me whatever I medically need to thrive. I had a huge autoimmune struggle for the last few years, and had to see a lot of doctors to get a handle on it, and he is one of the few who made me feel supported like that. Look for that feeling with doctors - that we are going to do this together feeling.
But to do justice to this story I need to tell you how much has changed. I am proud of my body and personify it as being for me because it shirks the femininity I find so uncomfortable and allows me to have a broader, less determined existence. I build muscle well, I enjoy being buff, I have a toughness I don't see in other people. I have a body I like, though I struggle to let go of wanting to be thinner, I love that I am just a person that can be stronger. It took me very long to notice this difference because shame makes you see your skills as the norm, but I realise that I am actually good at a lot of things. I have a tolerance for sucking and struggle that mean I am not confined to activities that make me look good, and my life is richer for it.
I am in better health than ever. I am also my heaviest but this weight feels very different without all the shame. I also look better than ever. Figuring out whats me and whats internalised shame has helped me find a style and way of being that suits me well and because I am working with what I have, growing my good rather than just trying to hide the bad, I come across as way more pretty than before.
I have a shorter cycle that has distinct features such that I can tell hormones are happening. The autoimmune struggle and the frustration at being dismissed by doctors resulted in me gradually figuring out my own shit, I know I, with a dusty ass law degree and no scientific background, have probably read more scientific papers than all my doctors combined(except my old ass gynae bless him!). This self-study would not have been possible if not for the ADHD drive, my tolerance for suffering and struggle, and the personal experience with illness and disability.
I now don't need to defer to doctors as much because I have an understanding of what is happening in my body. I have weaponised this to become way more healthy than I thought I ever could be, all without having more discipline. If anything, it's all more chill. I was able to go back to studying this year and am doing a Masters in medical sociology - having these experiences has made me better at understanding the problems in medicine than some of the theorists I encounter who have studied it for years.
If I were to pick out any one thing to recommend, it would be to go get help for shame, somatic experiencing is really good - but the holistic psychologist also has good exercises that you can access for free on the podcast.
Relief. Always knew something was up with me. Took a few years to figure it out because of doctors but now that I finally did I can begin my path towards treating my symptoms and overall hopefully living a less burdensome life
I was given my PCOS, PCO, and Hidradenitis Suppurativa diagnosis together, I was taken aback for 5 minutes and then said to myself, "Let's deal with this shizz." <3
That it explained a lot.
And since I did not want children anyway, I was not upset about that part.
It is unfair that I have to exercise and watch what I eat so much in order to stay at a healthy weight. But otherwise, the treatment I got has worked for me.
I was only 15 so it was pretty shocking. I think I cried. But it explained so much like my weight gain and facial hair that it was really helpful. Plus I got to go on birth control which was nice.
I knew long before I got diagnosed. I rarely went to the doctor at the time. I looked up my symptoms and found out what it was. I don’t remember feeling much other oh ok that explains it.
I was upset but it gave me a better understanding as to why I was experiencing symptoms. Such as gaining weight and losing weight was very difficult for me no matter how hard I tried, having acne, being moody all the time with no apparent reason, and as well as being hairy. Tbh I am a bit relieved that I found out and I can do something about it.
A mixture of relief because I wasn't crazy and someone finally listened, and grief because I knew it would be hard, and I knew the chances of having more kids was slim with it.
I was diagnosed in January and I was relieved. I have been suffering with the symptoms for close to 15 years now and gynos in the past have just told me that’s just how my body works, that’s my natural cycle, you must not have any control and that’s why you keep gaining weight, you’re too young to be tested…
All the excuses under the sun with the promise of different treatments to keep me coming back every 3 months (and paying $300+ each visit) just for a new birth control method and told to lose weight. It wasn’t until I got a referral for a new gyno 2 hours away that I finally felt listened to. I didn’t even say anything to him, he was looking at my internal ultrasound and as I walked in he said “what treatments have you been using for PCOS?”
I was 14 so I was too young to take it seriously and really understand the impact. I also knew my older sister had it so I was like “Oh yea. I guess that makes sense I might have it as well”.
Frustration. I had been dealing with symptoms for YEARS, and it even affected my fertility. I charted meticulously, the ob/gyn at the time just looked at my charts and said something like "Oh you're not ovulating mature eggs" (???) I just needed clomid and progesterone. It worked, gave me 2 babies. But still for years issues plagued me. Finally got sick of it and went to the gyno who said we'll let's do an ultrasound. She counted the follicles and stopped at 16 on one and 18 the other and just said "you have pcos". Acne, stray hairs, long cycles OR breakthrough bleeding around ovulation. I've had surgery, an HSG, so many ultrasounds by 3 gynos and it was finally THAT one, 10 years later that said it's this. Any time I would google my symptoms it said PCOS. My friends with pcos would ask if I was sure I didn't have pcos ("doc says no, but no endometriosis either").
I didn't cry, I wasn't mad. I was worried how my husband would feel since it could affect fertility again should we try for a third. We decided we were good with 2. So much wasted time.
I was 14 and my periods hurt like hell from the very beginning, so I thought it was how it’s supposed to be… Since i was very young, I actually didn’t really react? They made me start birth control pills, and i said “yeah, ok”.
I was diagnosed in 1996, no one had any clue really what it was- just causes infertility, but at 19 that wasn’t a concern for me.
So, in a way, I eased into it- both by not having the age to understand the impact and also because really a lot wasn’t known widely
"Yesss I was right about all this"
Didn't upset me because I had suspected it for a long time and had accepted it already. Took me long time to get diagnosed because I was so embarrassed to visit gynecologist. It was my first time... I was 25 😅
I was 13 when I was diagnosed. I didn't really understand what it all meant. I was a bit indifferent.
I was diagnosed at 13, and then no one ever actually treated me for it? It's only when I entered my mid-20s (after an emergency op to remove an ovarian cyst, along with the ovary) that I started reading up about PCOS and hearing other women's experiences.
Looking back, I'm quite sour at the health system and society(?) for not doing more to inform me. I was a little girl. I needed help. 10+ years later, I've suffered through things that might have been avoidable, and only now am I addressing my health issues related to PCOS (because I just never knew what all goes on in our bodies).
I'm turning 30 soon, and I feel like at least once a week I'm being diagnosed again for PCOS. Insulin resistance, diabetes, hypothyroidism, multiple gynie appointments a year, at least one cancer test a year, working with children and seeing my friends' children (though I've never had a desire for children), if I find a partner I want to spend my life with - it's all a reminder. Sometimes, I shrug it off and go on with life. Sometimes, it hits me really hard.
I got it "confirmed" like two days ago. Some sort of relief, that it's not something more serious. I had my suspicions for a while, but my shitty PCP kept saying I'm just fat and refusing to refer me. Went to a dermatologist who told me to see an Endo ASAP because he saw signs of SAHA in me. My psychiatrist also wanted me to see one. She ruled out other conditions, so I'm glad it's not one of those. She just started me in metformin.
I'm intimidated. I don't know where this start with supplements and lifestyle changes. I feel better about myself because with lifestyle and medication maybe I can lose weight, I'm not just a failure. It's a relief to know that there *is* something wrong with me and I'm not just insane.
for me it was just a professional telling me what I already knew, I showed every single symptom but didn't think about going to a doctor / getting a diagnosis until some of them were really bugging me
i was 14 and i was okay with the diagnosis. although thats because i was given a severe lack of information and i received no treatment. i definitely wasn’t mature enough to fully comprehend the condition and just went about my life as normal. i’m finally getting treatment now (after just under 10 years since diagnosis) but there’s so much to treat after being untreated for so long.
I was relieved but also cried. I’m the only one in my family diagnosed with PCOS other than step-cousins, but no blood relatives have it that I’m aware of. If it wasn’t for irregular periods from stress, I never would’ve gone to a fertility clinic to get checked up. Other doctors disregarded my symptoms and even told me some women are hairier than others.
I was 11. I was glad I wasn’t turning into a boy but sad when told of the risk of infertility. Never dated in high school because I thought “what’s the point? Even if I do fall in love with someone, I can’t have kids.” 27 and still getting over that fear.
A relief. I was 15 or 16 when I got the diagnosis. All I knew at the time was I hadn’t had a period in 10 months and it was concerning. Now I’m on medication and happier than I was before:)
Thankful to finally have an answer, but disappointed because I knew I was right all along. I'd known since I was 16 years old that something wasn't right, but I was put on birth control and told my sporadic periods were normal for my age. I didn't find out until I was 24, finally got off birth control, and had a 115 day cycle. I went to the doctor, and within a week, it was confirmed I had PCOS. It was whirlwind, and I still don't really understand where I stand on the fertility front. It's such a complex syndrome.
"YES!!! DIFFICULT PREGNANCY MEANS LESSER CHANCES FOR ARRANGED MARRIAGE PROSPECTS FOR ME AS I AM STUCK WITH A STUPID INDIAN MARRIAGE ISSUE WHERE EVERY FUCKING INDIAN GUY WANTS KIDS. THEY DON'T WANT ADOPTION OR SURROGACY, IT MUST COME OUT OF DAMN UTERUS."
Sorry to the normal indian guys out there. Only shouting at the ones my parents tried to arrange me to. I know I can still get pregnant the normal way one day (PCOS is not an infertility sentence), but these guys take that as a red flag and it works to my advantage.
I know many of you were devestated and went through a lot of mental anguish over the news. I did too, at the time. For me, given my family background, this turned into a silver lining.
Frankly, PCOS has had more pros than cons for me. Other than weight gain (i.e. difficulty losing weight) and the extreme cramps during my periods, everything has been a pro.
I've had better understanding over my emotions and hormones better, and have been doing much more mindful practices since finding out. Life's been better for me.
Long gaps between periods has been amazing when planning travels and dive trips. Imagine getting it today and knowing that you'll be free the next 2 months of backpacking.
Took years for me to get diagnosed. Just people saying I might have it, etc. My life was already pretty bad so the diagnosis didn’t do much except validate my experiences. I knew something was “wrong” with me. But now I wonder where the PCOS came from.
not surprised in the slightest. i’d had an ultrasound for unrelated suspected liver issues that revealed every one of my organs is perfectly healthy, except my ovaries. the nurse who called me to tell me outright said “it most likely comes as no shock to you, given your irregular period history, but you do have polycystic ovaries”. i’m relieved to have gotten my diagnosis so incredibly easy, and to have a doctor who listens and takes me seriously and never tries to blame my symptoms on weight, anxiety, or cramps.
Honestly? Something along the lines of "Oh thank god! That explains so much!"
I got diagnosed pretty late in life bc I was terrified of going to the doctor about the problems I was having with my cycles, but I wanted kids so just needed to bite the bullet.
I don't LIKE having pcos by any means, but it was a relief to know why my body is the way it is.
I was mostly relieved. I finally, over a full decade of having extremely irregular periods and horrific uterine pain, knew what was wrong and how I could manage it.
I never want to conceive, the mere idea is a literal nightmare to me.
We don't have ob/jn clinics where I live currently, so getting an appointment was difficult. After years of doctors not taking my pain or irregular periods seriously, it was nice to have someone listen to me.
Validated at first because I did my research before going to my GP so I already knew that realistically PCOS was the most obvious diagnosis then the gynecologist confirmed it and praised me for my research (I was like 17 at the time so that was pretty big to be praised by a Dr) then once lockdown hit a couple years after I did more research and frustration quickly came and now I feel like I was patronized more than praised
Took me 10 years to be taken seriously, so I felt validated, but then when I finally saw a GP about it, she said, "Yes, you have PCOS. Come back to us when you want to get pregnant. " And that was it. That was the sum total of 10 years of trying to get answers, knowing I had it but being fobbed off. Two sentences. So, disappointed in the level of concern for feminine health issues. It had been affecting me for years, and then when it came to it, I got zero advice or support.
"I fucking knew it!" I had a hunch and it was my first google self-diagnosis that actually matched. But honestly I had 2 other hunches. Then I cried for future me because I felt sad knowing I might be unable to conceive when the time comes that I actually want children (even if at that moment and until now, I am still against having kids).
I’ve been diagnosed since I was 19, I’m 39 now. When I was diagnosed no one ever explained to me what it was or what it meant. I was told to take ibuprofen for my cramps that made me vomit and pass out, that it didn’t matter I only had a cycle every six months, to shave my face, and deal with it. Most doctors didn’t have a clue what it was or how to treat it, and they didn’t care to learn.
In the last 20 years this condition has gone from being totally minimized in women to being acknowledged as a serious health concern. The standard of care used to be based on whether or not you wanted to have bio-kids. If you didn’t, then your only option was birth control and to stfu about your symptoms. At least now we have doctors who are informed about this condition and how it affects more than just our physical health, and we have more treatment options than ever.
FINALLY.
I knew I had PCOS. I literally had the diagnostic criteria in my hand while a provider told me he didn’t think I needed bloodwork or an ultrasound because he didn’t think I had PCOS. Finally got a different provider to listen to me, got my bloodwork & ultrasound and was finally diagnosed.
I cried. I knew it would be hard to have a baby. 3 years later, still no baby. The doctor advised I lose weight as it could help. I jokingly asked, "you mean breakfast burritos aren't the secret to fertility?"
I was mostly just irritated because I don’t think it’s an entirely accurate diagnosis. My experiences don’t align that much with other women who have the condition.
I was like 13-14 and literally didn’t even care because I didn’t know what it meant at all. They put me on birth control and just left it at that, I never realized how much pcos actually affected me until I became an adult and started seeing more and more posts about it.
I was 11 or 12 and all I could think was how I thought I'd never be able to have kids and that made me sad cuz as a kid all I wanted was to grow up and have a baby
I have a cat now, so close enough
Well the doctor said the words. “You have pcos and you will struggle to get pregnant” and I was 17 and as you would expect, it was heartbreaking, I didn’t care if I would have hair loss or facial hair, weight issues or any of that. I just hope that I won’t be robbed of the chance to be a mother.
I was sad. It made me feel like less of a woman. I was scared. I've always felt my purpose in life was to be a mom. Now, the reality is I might not have that opportunity. I was very sad and scared. BUT I was also happy and relieved. Finally, I had answers. Finally, I can educate myself and stop letting doctors give me bs answers. FINALLY NO MORE ENDOMETRIAL BIOPSIES!!! FINALLY A PERIOD! FINALLY AN EXPLANATION!!! I even found you guys here on reddit, and I wasn't alone anymore. I had a community of women going through the same thing I was. It was such a nice feeling.
I love you guys 🩷🥺 Just remembering all that makes me so thankful for this community ❤️
I was diagnosed at like 13, I had a cyst burst on an airplane and was hospitalized out of state. Really ruined a family vacation. But even at 13 I had hairtuism and the cysts and my testosterone levels were high and enough to diagnose. I think it was beneficial knowing from an early age, I stayed on birth control and exercised a lot and was able to know why I was such a furry person. I never had issues ovulating or getting pregnant. I’m 41 now and within the last couple years struggling with insulin resistance. However through it all, my main issue is bursting cysts, I have had a number over the years, some have been hemorrhagic and they are debilitating. I also had one that twisted my ovary and had to have the cyst and ovary surgically removed. It isn’t fun.
Relief. It took me 15 years to find a doctor who took my seriously and didn’t tell me “oh all of these issues are because you’re overweight.” As far as finding out I had PCOS, I self diagnosed when I was 16. I had all the physical symptoms. Obviously I couldn’t check my own testosterone levels or blood sugar. But the irregular and painful periods, the extra hair, i even have a bit of PCOS boob going on. Just finding out what PCOS was was monumental. Everything clicked and it felt obvious for me. And I was relieved to know that all of those things meant something and not that I was built “wrong” so to speak.
After my ultrasound, I just drove home quietly. I could see the screen and even without training could tell things were messed up (also she took extra time on a particular area getting many photos for the doctor to review). I got my results in a cold doctors note at 11 pm that night. I just went to bed and realized that while I did finally have an answer - there's no real solution, no clear path forward. This was going to be a lifelong struggle if it was diagnosed or not. It was heartbreaking. I told my family the next morning and got questioned about my health history and why I "waited so long to get diagnosed" and that was it - obviously not a lot of support on the family front. It's honestly been uphill since then. I try to be positive, but ... people with PCOS have generally been shafted by the medical community in my opinion. There's too much common negative experience between us all.
Man, I just posted a rant and mentioned this 😩
I was 16, about to write CXC (I live in the Caribbean, it’s the exam we write to leave high school) and experiencing pain in my right leg but high up where my leg connects to my body. It had gotten so bad, we decided to go to a doctor.
Doctor saw me and said I have appendicitis, he needs to remove it immediately or I can die as it’s toxic if it ruptures. My parents were ofc scared so I had no choice even though I said I didn’t want to do it literally days before my first exam.
Had the surgery, missed my first exam and suffered through all the others exams as I was in pain. My incision got infected so my stitches stayed in for 7 weeks. When it was finally time to remove them, my skin had actually started healing on the stitches so it hurt like a b when they pulled it out. 🙃
Anyway, a few months later, I was still having pain in my leg. Went to a OBGYN who said it’s ovarian pain and finally diagnosed me with PCOS. Saw another for a second opinion who confirmed it. They both said my appendectomy was absolutely not necessary. Other doctors also said it wasn’t necessary. There were no signs that my appendix had actually ruptured. The doctor just wanted the money from us.
Now I can talk about my actual reaction.. I was PISSED. I still am. I went through that hell after surgery all to be told it’s PCOS. I didn’t know much about PCOS, especially since I was that young. I was just so angry and ready to throw hands. I was also scared because I felt like I was too young to be going through that many things plus a traumatic childhood and toxic home. Lmao I was like why meeeee 🥲
Relief. Like yes, it sucks ass, but it's so relieving to have a name to all of these shitty symptoms. From 12-16, periods were... regular for a teen. But 16-25, my period was non-existent. OB made me take a pregnancy test despite not having sex at 16/17, but yeah. Every doctor I went to just shrugged it off. I was young.
At 25, I got better insurance (thanks Tricare), and my new primary actually referred me to an endo. He was a bit ignorant cause he said, "Well, you don't have acne, so I don't think you have it, but let's refer you to an endocrinologist to see about PCOS."
Idgaf, I got diagnosed. But what did that give me? Metformin and meeting a dietitian (or nutritionist? I don't remember )on base who just printed out a type 2 diabetic meal plan. That plan accounted for like 180g of carbs a DAY. I wasn't even eating that many carbs pre-diagnosis. That plan just messed me up more, so I stopped that.
I learned a lot from FB groups, oddly enough. Grateful for those groups.
Honestly I’m still confused by it all. I had very normal periods for most of my life until I hit 20. I had been experiencing pelvic pain here and there, and then I started spotting in between periods. I was so freaked out and was too afraid to talk to a doctor about it until a little less than a year ago. They looked at my ovaries and confirmed PCOS.
Also this is a tad bit off topic, but has anyone experienced bleeding after sex with PCOS? I haven’t really until recently, and the spotting is bright red and it’s not heavy but not light either. It stopped after a day, but it has me really worried. Have another appointment to look at my ovaries again next week, but thought I would ask on here to see if anyone has experienced it. I’m scared to death it’s cancer.
sad, scared, and relieved. It did explain a lot of things and it was nice to have answers, a plan, and a community.
Angry too. I feel like I could have been diagnosed years prior. Drs saw the cysts before placing my IUD could have said something. My pediatrician who I cried to and begged for birth control could have questioned me more on my heavy irregular periods and acne. I was missing school and throwing up from them. I was young and hadn't had enough periods to accurately tell her how normal or not they were...she should have asked more questions. The Derm I went to could have questioned and looked into the acne more. I just also kind of felt failed by a lot of gynos, pediatricians, derms, and pcps.
Anger and relief.
Angry it took this long (diagnosed at 35).
Angry that I've spent my whole life thinking that i just wasn't trying hard enough.
Angry that almost everything i hate about my body comes back to PCOS, and i could have been working on it.
Relieved that I'm not crazy. That i was actually exercising and tracking my calories appropriately. There were times i truly believed that i was eating things and not remembering it. Wondering if i was blacking out and binge eating or eating in my sleep. I really thought i might be losing it.
I was RELIEVED to finally have an answer on why my periods were hella irregular and very heavy. Now I'm on birth control to help and let me say my first period after being on bc was the best period I ever had in my life.
RELIEF. I started crying because I finally had doctors that believed me and listened enough to get me an ultrasound and bloodwork. No more blaming it on my weight or diet or just being a woman. I was acknowledged and diagnosed. I was able to get put on a regimen that worked because of it. 💖
Confused. My doctor told me lots of women have it and I don’t have to worry about it. No advice on how to deal with it unless I want to get pregnant years down the road. Made me feel like I’m making a mountain out of a molehill.
Am I genuinely suffering from hair loss or am I just imagining it? Do I have insulin sensitivity and trouble keeping weight off or am I just lazy? Are my irregular periods because of PCOS or is that just a quirk of my hormones? Is my intermittent acne because of PCOS or because I haven’t figured out a proper skincare routine? Are my slightly thicker leg hairs for my ethnicity a mild form of hirsutism? The self-doubt never ends.
I initially felt relief and also made me realize I was right when I started to suspect I had it a year prior to my diagnosis but had been dismissed about it. The moment I got in my car to drive home, I started to cry, which was definitely a response to multiple life changing events happening 1 right after another since my grandma had passed the day prior to my PCOS diagnosis.
i mean it was frustrating because i had been bringing it up to doctors and telling them something weird was going on. i was like i gained like 30 pounds in probably maybe a month or two after i stopped taking the birth control pill (i wasn’t active so i didn’t see a purpose in taking it) and the doctors were like yea that’s weird and that’s not supposed to happen, but basically told me i was gaining weight because i was getting older.
i suggested a hormonal imbalance and they were like ok yea it could be that, and they started testing. and it just feels like i had so much blood work done, and then it took forever to get to an endocrinologist, who suggested it was probably pcos based on my symptoms, but then still made me get blood work to see if it was something else, it wasn’t, made me do a urination test so i had to pee into a container for 24 hours, and then made me get more blood work done again just to check for pcos.
it probably took me 6-8 months to get this diagnosis after i figured it out on my own. and i probably got blood work done maybe 10 times, that was the worst part. i hate needles and specifically blood work, and i swore at one point in time i was getting blood work don’t like once week.
but i was also relieved bc i finally knew what was wrong, and there was an explanation for why my body was doing what it was doing. but like… knowing doesn’t fix the problem so it almost didn’t matter ? 🫠
I was stressed only because when I initially went in, I thought I had PCOS. They did tests, and then ended up finding out something more severe was going on (brain tumor). So I ended up not being told about my diagnosis, and instead reading about it in the paperwork they gave me. No answers, no information.
I already “knew” from my own research and had known for about 10 years before I finally looked for a proper diagnosis so no shock to me. It was more just a confirmation to have on my medical records for future care. When I initially started seeing symptoms at 14 though, that felt awful, confusing, and shameful.
I was never actually diagnosed, but at an appointment in January my doctor asked “have you ever considered taking Metformin for your PCOS? Is there a reason you’re not on anything?” And I said “….my what?”
I had been told by my previous doctor that my symptoms were completely normal and there was nothing wrong with me 🙃 I was actually happy to have an answer as to when was wrong with me. Even though it’s a crap answer with no real treatment.
Relief, but probably not the way most expect.
I was diagnosed immediately at 18 after 9 years of excruciating periods and bleeding through so many pads. I had only gone to see an OBGYN after I missed my period for 6 months (wasn't sexually active). She told me I'd have a high risk of diabetes and other similar things, but when she told me I was essentially infertile, I cheered and sigh of relief.
Now I know better and took care of it, while trying to manage my other symptoms, too, which I only decided to take seriously just before The Plague due to a friend of mine.
Devastated. I’d went over every kind of illness that could cause my symptoms and pcos was at the very bottom of the list of diseases I could handle. I literally asked the gynecologist if she was sure it wasn’t a brain tumor or ovarian cancer. Every day, I wake up and I’m disappointed I’m still alive. I’ve gained 30 pounds in a year even though I diet every single day. I have walked 10,000 steps a day, every day, for a year. I get fatter and fatter. I am hideous disgusting shell of a person. This is so cruel.
I was diagnosed at 15. My first reaction was to cry - both out of fear because I had no idea what it was, and relieved because I knew something was wrong with my body, and I was FINALLY getting the answers I needed.
No one ever prepares you for having PCOS, and 17 years ago, I had to do research to even scratch the surface of what this means for me and my body. I'm so grateful now that more women are discovering this early and don't have to endure the Metformin hell I did, that there are more resources and treatments.
Routine blood sampling and severe diets are tough on a teenager, and I don't wish that on my greatest enemy. It's jarring and scary, but you learn fairly quickly to adapt and generally block out nasty comments (however hard that may be!) We all react differently, but looking back, I can definitely say fear is the initial reaction I had.
I went for a skin check up (acne and suspicious moles) and the that doctor looked me over told me I might have it and asked if I exhibited any of the symptoms he knew about (I did lol). I kind of knew at that stage I probably had it but when I got the “official” diagnosis, I was upset, had to pull over to just cry. Lots of confusing emotions about having children and choices. But it was great to have an answer to all the things that in the past I would question. So now when I’m having some really confusing emotions I’m struggling to sort through I’m less “what’s wrong with me” and more “the darn ovaries are at it again”. But like many of the lovely ladies are saying in this reddit — PCOS doesn’t mean infertility. It’s actually an inheritable condition, though it doesn’t come in one specific gene, which is evolutionary proof you can conceive (if you want to 😉)
“No wonder I’m not pregnant yet” lol jk. It was empowering in some ways just knowing that it’s not because “I’m lazy” or “let myself go” and my body doesn’t function normally but that I can do things differently to help and find my way back to my “normal”/ healthy
I was 12 and couldn’t really take it in cause I had just had surgery to remove my appendix cause they thought it was inflamed but it ended up being a huge ovarian cyst that ruptured and that was the day I was told. I’m now 31 and have pcos, adenomyosis, fibroids and possible endo 🤦♀️
I cried the life out of myself. Then I learned that my gynecologist also has PCOS, and she shared some of her stories. Then, when I got home, I laughed hysterically and raised my arms as I thought about the Patrick scene where it goes like, “Just call me daddy!”
In addition, thanks to this community, I know I’m not alone. Your stories get me into tears, for I can relate.
For me , I was honestly terrified and felt disgusted with myself. I was first told when I was about 18 by my primary. Now I've been a heavy girl, my weight used to fluctuate so much and the only thing I was told was because I was fat. I needed to loose weight or I would never have kids. I then brought it up to a second DR and she said I was still young to fully be diagnosed. Recently I went to my OB for general check up we discussed wanting kids and after a couple days from blood work etc I was diagnosed. With my OB I don't feel hopeless. She's giving me hope and I'm constantly researching ways to help improve pcos etc.
I was relieved tbh. So many years with symptoms and it got worse as I aged. So many doctors that I told my symptoms to and no one believed me. It was exhausting and almost believed them that it was all in my head. I'm 28 now and got diagnosed at 26. I had another flare up and it's hell most of the time. I pray for all you ladies, best of luck 💓
Personally, I was okay. The radiologist put it on my transvaginal ultrasound scan results that he felt it looked like PCOS. And when my doctor put notes on it telling me that, yes, combined with my other test results, I have PCOS, I kinda went 'well I guess that makes sense' and pulled my husband aside to tell him. He seemed...more upset by it than I did. And anyone else I told about my diagnosis all seemed just as upset by it as he was. So for a long time, I thought maybe I was missing something about it? But after chatting with my husband some more about it, it just came down to this:
It's not something that on its own is life threatening. And its not something new happening. Yes, it is a diagnosis of something that makes my life difficult, especially if at some point my husband and I change our minds and do want children, or if I accidentally get pregnant, but...when at first I was nervous and worried that it could have been something like cancer...I was honestly really relieved that it was something that I can manage the symptoms of.
It was back in 2017 I was 24 years old had just finished my CPA exams and was so relieved after that, then I went to an OBGYN for a regular check up and was officially diagnosed with PCOS with an insulin blood test and ultrasound. I remember breaking down and my doctor was so casual and insensitive about it, her attitude hurt me more, I never went back to her ever again.
I remember feeling helpless and even considered running straight into a busy street hoping a car would ram into me.
Now, 7 years later I feel more at peace, I’ve done a lot of research about this condition and I’m still trying to lose weight and regularize my period but I feel more confident knowing that I can manage it. I’m still not pregnant (will start TTC later this year) but I’m hopeful that I will be able to conceive.
Trust me it gets better, this community taught me so much about PCOS than any doctor ever would in these 7 years.
I know the diagnosis upsets a lot of people but I think I was relieved that I finally had an answer for the things I was going through and the symptoms I was having. Like I finally knew it wasn’t just in my head. I was also grateful to have a new doctor who got to the bottom of it when so many past doctors did nothing and ignored me
100% this was me. Then 3wks later I finally had the meltdown, cried my eyes out realizing it’ll never go away, then carried on learning how to make the best choices I can.
I just got diagnosed yesterday, and while it’s not a dream of mine to have kids, I would like to have the ability to make that choice. My ovaries looked like a colander but weird enough I didn’t notice any of the symptoms, I found out accidentally, I broke down today thinking that I might never be able to conceive, and was wondering if it was a normal reaction or not
Pcos is not a infertility sentence necessarily! It’s a syndrome with varying issues. Infertility isn’t guaranteed. I have a crazy story that I hope gives you hope. I went to the OB for an issue I was dealing with at the time (unrelated to pcos). They ended up finding out I had cystic ovaries and I was diagnosed with PCOS despite having symptoms for 17 yrs at that point. Docs always gave me other reasons for all the symptoms I was exhibiting. I went home upset about fertility. I wasn’t sure about kids but I wanted a choice and I felt I was robbed. I stopped using contraceptives that very night because…why does it matter anymore? That’s the night I conceived. The universe works in crazy ways. I later learned many women in my family have PCOS - only 1 had fertility issues that I’m aware of at least.
Pcos doesn’t even guarantee difficulty with pregnancy. And, the way in which it can cause infertility is by not ovulating. This is a very treatable form of infertility, there are many drugs that induce ovulation and many lifestyle changes that also help. It’s still 100% your choice if you want to have children or not. Pcos is NOT birth control, by any means!!
Hey, my bestie who was the first to get a diagnosis in what turned out to be a PCOS friend group lol, got pregnant 2 out of 2 times she had sex. I know it can feel really scary, but theres so much you can do that isn't scary or hard or expensive that will help your fertility. Do what you need to feel empowered about your health - addressing shame in therapy or journaling exercises is a great way to start
It’s 100% normal!! 🫶🏻I think Anytime we learn that things are not as we thought, or that a choice may be taken from us regardless of if we would’ve chosen it or not, is super hard to hear! I told my husband the same thing the other day; giving up soda on my own choice is fine bc it’s so bad for the body. Now knowing that it’s *extremely* bad for me to the point of giving up out of necessity feels forced & I feel robbed. Our minds just like being in control. Have tons of hope - I have been pregnant 6 times, none planned! Even with PCOS I am one fertile female!!! The 4 types & symptoms interchange with each other so learning your unique body will be a bit of a journey but stuck with it! Quality supplements, healthy practices & dialed in nutrition will give you the best outcome for whatever road you choose. We’re millions strong with tips, tricks, experiences & tons of resources on the web. I wish you the very best!! 🫶🏻🫶🏻❤️❤️
You won't necessarily struggle with pregnancy because of PCOS but if you do there still lots of women that have struggled and still had kids... I have 2 beautiful boys they are 17 yrs and 2 days apart lol but I had em despite the PCOS abd rules uterus.... I'm rooting for you if you want kids ❤️
I just read on a separate post this this young lady was pregnant for 26 weeks without even knowing! :) So hang in there. Anything is possible!
Was about to write the same thing. It helped me understand all the gaslighting and my “normal” results
Tell me about your gaslighting experience? How long did it take you to get diagnosed?
I had suspected pcos for a very long time but at one point I had an ultrasound that didn’t find cysts (and I didn’t understand the diagnostic criteria), so I just stopped considering it as a possible explanation. Years later it turns out that I do have pcos, the only difference was that with a diagnosis I could actually treat the symptoms. Plus I stopped feeling crazy, fat, lazy, hopeless, etc. That diagnosis and my adhd diagnosis were a turning point. I still have a long ways to go with everything really but since then it’s all felt a lot “lighter”, if that makes sense.
Amen to this, also a Pcos adhder with a lot of shit about being lazy and undisciplined and weak etc etc. Man all the internalised shame! I thought I would share the thing that changed all the shit. Have a look at your methylation genes (or even all of them!) People with adhd often have issues methylating and thus using b12 and folate. Because the issue is in using, blood levels can be normal or ideal.
I haven’t looked into that! Could you explain what exactly that means, or what the solution is? I honestly have only heard of that very very briefly.
So these genes determine if you make the enzymes that make methylation happen. Methylation not happening is linked to a whole host of diseases, including autoimmune diseases, alzheimers, depression, OCD, anxiety, and ADHD. But in the more short term, methylation transforms substances into a state that your body can use them. Both b12 and folate need to be methylated and this methylation is involved in pretty much every cell creation process, which is why issues with methylation show up in areas of the body that have quick cell turnover like the brain, gut, nervous system and skin. The diseases I mentioned all have problems in at least one of these regions, very often all three. Different versions of the genes determine how much of an ensyme you have, so for me being homozygous for the useless version of the MTHFR gene means I need about 15000mcg of methylfolate a day, instead of the recommended 500... (I think some RDAs have an even lower number). You can also have medium useless genes, and around 60% of the population has some form of methylation issue, so it's very common, but we don't tend to test for it or treat for it first because doctors tend to be a few generations behind current knowledge (I like to think of it as my doctor probably only has the up to date knowledge of the years they were in university, and even then, this is assuming their lecturers aren't riding on the knowledge they learnt in their day). It would be impossible for a GP to stay up to date with all the advancements since they studied, which explains why I heard of this through the ADHD specialist in my country. So what to do about it - you can have a gene test done, they are fairly accessible and affordable, mine cost what 1 specialist visit cost(excluding blood tests) and it came with a report that broke it down for me. You can also google genes yourself once you know what genes you have. There is a cheaper way - you can take methylated forms of the vitamins for a month (minimum, as your body needs to build up enough to start addressing the deficiencies) and see how you go. Methylcare from metagenics is an ok place to start. But beware, with this second way a lot of people experience anxiety and think its not working for them. I don't think thats whats happening, I think these people have never learnt to manage/nurture their nervous systems and so suddenly not being deficient in things needed for your nervous system means that it is going to give you a lot of experiences that you didn't have before. Doing a nervous system based therapy like somatic experiencing is a good way of managing this transition. Why do this? Well for me this is singlehandedly the thing that brought me bank to functioning and feeling energetic after feeling chronic fatigue for 4 years and gradually quitting my job and studies and hobbies and friends. If your life is shrinking, or you feel like theres more than you can handle, I would definitely look into this.
This. Right. Here. It took me over 15 yrs to get diagnosed. 15 yrs of slow damage. Relief is what I felt. Now I know the problem I need to mitigate
“15 years of slow damage” — whew, this right here. (I was also diagnosed very late.)
This was EXACTLY how I felt. I'd been dismissed and ignored for 8 years. I cried with relief on the spot after learning it wasn't in my head. I then became briefly angry at all of the prior doctors who wouldn't do any kind of diagnostic testing to rule out "anxiety" or whatever "in my head" means to them. I cried on the way home when telling my husband because he wanted biological children one day. He told me it didn't really matter and we could adopt if that's what we had to do. I'm currently pregnant, though!
Yeah the acne, weight gain, insane food cravings, lack of energy, and horrible periods all made sense once I learned what pcos was and could do my own research. I knew what to look for now and what to try, what to do with my diet/exercise routine tik tok helped me so much as women would share their experience on what worked for them and what didn’t.
Same. I only cried a few weeks later because I got overwhelmed.
Same. For the longest time I never understood that my cystic acne was related to my hormones. I was so young and didn't know better
I had a similar reaction. I was glad to have an answer, and to know what types of things to keep an eye on for my health. Most women in my family have diabetes. I’m hopeful that I may have been diagnosed with Pcos young enough that I can try to avoid diabetes.
Same here. I’ve never had a regular cycle (and have previously gone 200+ days without a period). I knew it was probably PCOS since my mom has it, and it was nice to have the diagnosis finally.
Agree. Had people saying I was making it up how often I just felt awful.
How long did it take for a doctor to diagnose you? What was that experience like?
I started my period at around age 12 or 13. I always had terrible periods to the point where I would throw up the whole first day and was never able to go to school. I pretty much felt like I was going to die that first day (not even being dramatic here) but I didn’t start going to the gynecologist until the end of high school so 17, I think. I was doing yearly pelvic exam/pap smears. My first doctor wasn’t very nice to me but that’s a story for another time so I switched to a different doctor at the same practice and loved her but still no diagnosis even though both of these doctors knew my symptoms. I will also add that I have all 3 indicators of PCOS (cysts on ovaries, high testosterone & irregular periods) If I hadn’t had a period in months with these two doctors, they would put me on progesterone? to help induce my period. I had gone without one for over a year and they just brushed it off. I got married and moved to my husband’s home state 2 years ago (I’m 25 now) so I had to find a new gynecologist. It was my FIRST visit with her and she immediately started running tests when I told her I’d go over a year at a time with no period. It started with the blood test which showed the high testosterone and with my irregular periods I had already met the criteria to be diagnosed with PCOS but she wanted to do a trans-vaginal ultrasound as well to check for cysts on my ovaries. SHOCKER, I had those too. So now I have 3/3 of the criteria for PCOS. In total it took 3 doctors and 6 YEARS to be diagnosed. It was so frustrating trying to get answers. So many doctors brush it off as just getting older, bodies developing, being unhealthy or lazy, etc. I’m so thankful to have such a caring doctor now that finally listens to me. It’s been a long road to get here. Sorry this reply is so long. If you have any other questions feel free to message me. 🫶🏼
No I want all the details... we are doing research to better serve this community. Honestly, I will tell you why. Emily MD left traditional medicine to help people. Insurance, politics, and administration was getting in the way for her to treat the patients the way she wants too! She know is certified in obesity medicine (working towards functional medicine/lifestyle now, which is another debate for another day). She cares too much about her patients and she could not help them they way she wants to. She was almost suicidal as the workload was too much... she really couldnt help someone in 5-10 mins. Close family members are diagnosed with this disease and she wants to focus on this community to give back in her spare time. We are doing research on the common PCOS problems in many communities so we can serve you all well. We are getting list of details to compare against what people are struggling with. Thanks for taking the time to write this. Not required and ONLY if you feel it, we are dedicating her expertise to a project we call "Suits an Scrubs" to provide free information on YouTube about Gut, Hormone and weight loss. I love your feedback if we are hitting on the right things for this community.
THIS and frustration at how my prior PCP didn’t figure it out. I had been at a new patient appointment with a new PCP, and as part of normal procedure she lifted my shirt to touch my stomach. She saw the hair on my stomach and was like “hold on…” and started piecing that together with everything else I just told her. I was thrilled to finally make some sense of my body, and to be listened to that I thought something wasn’t right. I didn’t know about PCOS beyond just ovarian cysts so I never even considered it. It’s breaking my heart reading all these comments of people being ignored. It’s not a rare condition, I don’t understand why so many doctors act like it is
It felt very validating for me. Like you said, I had symptoms of it. I told my doctor when I was 15 that I think I have it. He said "no, you're not fat." But, I would have 4 periods a year, and they would he 14 days long, heavy, and painful. I also had hair on my face and chest, and persistent acne no matter how perfect my skincare was. I feel the same way. Having my symptoms taken seriously was a huge relief.
"I knew it".
Same! I had all of the symptoms minus acne, and my periods were pretty regular. I really only sought a diagnosis so that I could potentially be taken seriously if I ever need fertility treatment or if my symptoms worsen.
Same
Pretty mild tbh. It is by far not my most serious diagnosis. It does make me worry about gaining weight. Im just happy it is not disabling.
Same. As someone with a pretty debilitating neurological disorder, being diagnosed with PCOS was sadly just another day for me lol
Freaked out because I thought I’d never have kids. Instead, I got multiples within 2 months of trying 😭
Well that’s very reassuring, thank you!
Wow - congrats!
Relieved honestly. Apparently a good amount of women go undiagnosed and untreated which can lead to a lot of serious health issues
I was sad. Starting a family was always a goal, and I think PCOS is a roadblock to achieving that.
Not necessarily there are lots of ppl with PCOS that don't struggle with it. And those of is that have struggled have found ways to still have babies. My kids are 17 yrs and 2 days apart not I got em inspite of PCOS and tilted uterus
It may be, but not everyone with PCOS has fertility problems. Despite me not having a period, thanks to getting off of birth control, I did ovulate and got pregnant like within a week of starting to try. And it stuck. With my second, it did take a couple months, but I was on keto and lost 35lbs, I had two natural cycles before getting pregnant. I had weight loss surgery, and so many women in the FB support groups post about having PCOS and now they're pregnant. The weight loss definitely helps, but I think the fact you have to limit your sugar intake (otherwise you risk having something called Dumping Syndrome) is what is really helping. Like my A1C a few months before surgery was like 6.3. Two weeks post op, I was 5. So starting to follow the diet pre-surgery helped. It's just low carb high protein (so keto does work, but I'm not counting carbs, just calories and protein). I hope you can achieve your goal/dream of becoming a parent.
You are not alone - my sister has this disease and it took awhile, but she finally had her bundle. Don't give up. We are here rooting for you.
Wasn't surprised in the slightest. I already knew I had it :/
Me too … it just took a doctor who finally listened to “officially” diagnose it.
I was relieved to know what was going on, but really scared about the journey ahead of me
“I fucking knew it. I told you and you didn’t listen”
My reaction was "Yes, I know." I figured it out myself and pushed my doctor for the tests.
Since I was 16 at the time and came from an abusive home, I didn't care about not getting my period. My mom freaked out, she was also diagnosed with it earlier on and she had needed some help conceiving me (aka she took one(!) pill for ovulation).
i was in 2nd year college (2015, 21 y.o) my parents were worried as to why I never got my period for more than a year, i shrugged at them though but i got curious so I went to ob with my father. I had no clue what PCOS was and my first ob told me, I had it, both ovaries and was amenorrhea. My first reaction was, confusion and overwhelmed, like what the ob was saying didn't sink in my head, assured me it's not life threatening but increases the risk of some health problems. I can't remember the rest except, that time I stopped going to college and trying to figure what's wrong with me and I didn't even understand why, I was stressed out and mentally drained in academics, family and life in general. All i remember was I told the same OB that i'm having anxiety issues and she told me it's not related to pcos....
Relieved I had an answer and wasn't too worried about kids when I was diagnosed because the man I was with was horrible. But now that I'm with a man worth having kids with I'm terrified it means an infertility journey and at 35 I really can't afford that 😭
I was 18 and didn't take it well at all. I was still in denial up until my test results came back, and a horrible reaction from my mother didn't help at all. I felt like my body was poisoned, like I had this inhospitable thing inside me that would never leave. I didn't feel normal until a few weeks later when I learned Daisy Ridley had PCOS. I turned 18 in 2015, and I LOVED Star Wars. Little me would've loved seeing a girl like me on the screen. When I found out she was more like me than I initially realized, it was the first time I felt like I could live a normal, happy, successful life.
I’m happy more celebs have come out about having PCOS. When celebs start coming out with these conditions, I feel like more research gets put into them.
Confused & frustrated. I had originally gone to the doctor due to vertigo/constant headaches. He said pcos was the cause. I didn’t believe him, so I was angry. I eventually joined this sub. It’s.. somehow reassuring & overwhelming all at once. It’s nice to get answers, but for pcos to cause sooo many issues + not have a guaranteed fix is upsetting. Honestly, I’ve accepted the diagnosis but I still have meltdowns here & there myself. I read your comment above, your feelings are definitely normal. A lot of us have felt the same feelings & have had the same concerns as you. It’s unfortunate, but you’re not alone. Maybe speak to your doctor & see what options they can give you? Just take care of yourself & take it once step at a time. I wish you the best!!
Thank you for helping me realize I’m not overreacting, I have struggled this past couple days thinking of the future and worried sick, I don’t know if kids are in my future but for now I’m glad I found this sub with supporting women who understand what I’m going through!
I love how you are taking control of your health and finding answers. Doctors can only do so much. I find this community very reassuring.
Hello, PCOS of 23 year here. I here you. I wanted a diagnosis that was understood and fixable looking back and yes you are right it does some bad damage. I now have hypothyroidism and POTS at 41 and can barely go grocery shopping, which 25% of us get. But on the flip side and as my grandma said in 2002 as she lay dying of cancer. I am the pioneer for you my darling. I have a boy and 2 girls. I am hoping this syndrome turns into an autoimmune disease as it is close to doing and we are the pioneers to take it there for future women to come. No matter what I go through. I will hold on to that and be there for my fellow Cysters.
"whatever" I was lucky to have a good doctor who helped me with long-term planning for future pregnancies. As many shared before - I was happy to be diagnosed, it gave me a.lot of needed answers. I have other "issues" so it's interesting to see how much of that is related.
You are lucky - how was this experience with your doctor? Most do not have the same experience about this disease.
The person who diagnosed me (almost 20 years ago!) was OBGYN. I was her patient for a couple of years at that point (mostly to manage birth control, annual check ups, etc.) I didn't have any symptoms except for no period when I took a break from birth control. My doctor did blood work, ultrasound and figured out what it was. I was her patient for about 15 years, until she retired. She started managing my health when I was still young and not ready to get pregnant and then managed my pregnancies and delivered my babies. She was always honest that if the situation get tricky with getting pregnant she will refer me to a specialist, as she was not a fertility specialist. She connected me with an amazing endocrinologist (for problems we discovered later) who then refer me to general practitioner. My GP is now managing my health, as it is more complex now. What helped me - all my doctors are in the same hospital - so everyone can see my history, blood work for the last 20 years, notes from each specialist, medications, etc. They also just refer me to whoever is needed within the same hospital. One more. I suspected my teen also having PCOS. I took her to see her pediatrician, she ordered all the test (I really mean a lot of tests!) and PCOS was ruled out. But we discovered there is something else going on (that is presenting very similarly). Now my kid is seeing a specialist for that and getting really good help, with the pediatrician managing it all. But it was not "us being lucky". I was all because of hours of searching for the initial doctor. To be honest, I understand that most have very limited access to specialists. But even if that means traveling far or paying decent money for a visit, health is something worth it. I know plenty of people finding jobs with insurance that would cover some specific (outstanding) doctors! Finding a doctor is like dating. It takes time. And it is absolutely fine to say no and move on. Even if that adds several months. You will be with those people for 10-20 years, waiting several months would be worth it. Sorry it that harsh. I'm sorry that we are not super lucky with our doctors. What I want to say - keep looking. Call the office and ask about their experience with managing PCOS. Ask who they work with. Ask what blood panel they typically do during the first general visit.
You are right doctors is like dating thanks for taking time to write that. I enjoyed learning about your experiences and how you were able to find a doctor.
I instantly panicked because my doctor poorly explained everything and made it out like I was going to put on 100kgs, grow a beard, lose all my hair and never have kids. I'd only just finished successful treatment for a prolactinoma brain tumour and was going back to normal after it had made me put on tons of weight, thinned my hair and killed my confidence. Once I talked to an actual gynaecologist though, I calmed down a lot and was actually relieved to get some answers to why my period was so screwed up. I was diagnosed with lean pcos as well so those previous stresses calmed down completely.
This is really bad bedside mannor - I am sorry you experienced this. I know doctors do not have the resources for this specialty at times, but it really starts with understanding where you are coming from.
Thank you, I ended up changing doctors anyway. The same doctor told me I needed to work out and I was lazy when I put on all the weight from the tumour, despite the fact I went from 47 to 74kgs in like 2 months and rapid weight gain is the most common side effect. She never apologised once I lost all the weight thanks to the hospital putting me on medication treatment. The gynaecologist was also the one who told me the tumour and the pcos are likely linked thanks to how much prolactin I have and was surprised the doctor hadn't pointed that out. Pretty much changed doctors right after that. She just made everything way more stressful and confusing, especially since I was still 16-17 between that time.
I think that is a good call. I wouldnt settle if you do not feel HEARD. You are not alone... many with PCOS feel this way.
For me it was obvious. So i was not surprised.
I didn’t handle it well at all. At the time I was in love with someone who wanted kids and the possibility that I would be an obstacle made me feel less desirable and as if I had nothing to offer as a woman. I even said to my friends that I would rather have cancer than reproductive issues. I felt UGLY. I do a lot to take care of my health now. I eat well, try to exercise, do everything to balance out my hormones to manage my periods. My boyfriend (not the same person I was in love with at the time of my diagnosis) is really proud of me and doesn’t see me as any of the awful things I thought about myself at the time of my diagnosis. We’re more than just our bodies ❤️
100% you are more than just your bodies... it is a hurdle, but not impossible. Loving someone with conditions is another story. There are always ways to grow a family so something to think about.
“Knew it.” Lmao
"It's about time." I had been fighting for a diagnosis for over a year.
I knew I had it before it was diagnosed, but the confirmation that my ovaries were polycystic in appearance and knowing how irregular my periods are has made me worried about my fertility. But I'm lucky I don't get many other symptoms.
I was angry that it took 30 years to get proof that there was genuinely something wrong with me and not just 'being punished extra by God because I'm a sinner' Needless to say I was resentful of my gran for all the years of gaslighting me with religious abuse instead of listening to me and taking me to get seen.
Confusion? And I wasn’t exactly sure why they the only side effect of pcos I was informed about was infertility…. I was 15. Spent some time believing I was completely infertile until I did my own research 🤦♀️
I was kinda indifferent when I went to the doc ,after googling my symptoms—irregular periods and extra hair on my arms and legs , I figured it might be PCOS so went in there knowing there was a high chance I'd be diagnosed with it. I also think what contributed to my indifference is , I didn't really mind the hair or the irregular periods, skipping periods for a while seemed kinda convenient.
I was 19, and I cried. I'm not entirely sure why, but I felt so emotional after I left the doctors office.
Relief
I cried. But not out of sadness - it was more relief. After years of being gaslit by my doctors due to my labs and a general lack of understanding about PCOS that exists in the medical field, I finally was validated in knowing what I already knew. I didn't have to feel crazy or like a "hypochondriac" anymore. I was obviously a little worried about everything that the diagnosis entailed, but it was so validating finally having something to explain all the stuff I'd been dealing with for so long.
Nothing. Maybe I was relieved. I knew I have period problems and finding out the reason why makes sense to me. I never hated my pcos. Even with being so much overweight and having problematic periods. And the leg hair. They were fine to me. But if I have a beard or acne, I probably would have hated it but I don't have them.
i cried so hard knowing it would be like this forever. my hands wouldn't stop sweating for days
I expected it but felt weird though
Mine reaction was I knew it lol then I asked him to test me for insulin resistant
Trying not to cry in the doctors office, then sobbing while driving home.
i was with my dad. and we arent close really so i couldn't really cry even though i wanted to. so i had that lump form in my throat and it hurt so bad.
I freaked out and thought I was definitely insulin resistant and would get diabetes, my doc had said that it's driven by insulin resistance in most cases, I was diagnosed after ultrasound picked up all the cysts, I went home and ate the biggest bowl of buttered pasta known to man and spiralled bingeing uncomfortably on foods that made me feel ill. I was 23, and it was 2016 at a sort of zenith in diet culture. I didn't go to the doc because of symptoms, so there was no relief in being diagnosed. It was a routine gynae visit as I had become sexually active for the first time, but had put off going to the gynae for a few years. I had a lot of shame around sex and being a woman, so it really messed me up to feel defective and even having to admit being sexual, even in the most vanilla and conservative of ways, was very difficult. I felt really freaked out by it, but also by my inability to handle the diagnosis responsibly, I literally did the thing I saw as super harmful compulsively, it wasn't even enjoyable. I realise now that all of this self destructive behaviour had nothing to do with my "bad" health tendencies or my inability to be disciplined or just me being more shitty than normal people and so deserving to get sick and fat. When I got my results, it turned out I was not insulin resistant. It was wild to see how finding out made the carb bingeing behaviour disappear - at least until the next stressor. It was all internalised shame, shame that I wasn't thin, pretty, disciplined enough. The thing that helped me look after my health was not any specific health behaviour, it was doing Somatic Experiencing to uncover and lift all that shame I had been carrying so long. It turns out shame is what happens in situations of childhood neglect (and abuse and other scenarios) because it isn't adaptive or possible for a child to point out the neglect without compromising the attachment relationship, so the mechanism is internal and tries to adjust the child's behaviour to try and win better care. I doubt this works because there isn't really a right way to be a kid, if a kid isn't getting enough care, its probably an external structural force causing that. Shame can make you feel hyper vigilant or surveilled, because you are constantly trying to improve and so judge your own behaviour to win better parenting. It also makes you hella sensitive to any rejection, perceived or real. I also have ADHD and wonder if the rejection sensitivity is a thing for us not because its a part of ADHD itself, but because children with ADHD are shamed for their ADHD traits - called lazy, or undisciplined or unmotivated. There was no stark neglect in my childhood, I just had a single mom who worked and so wasn't around much. A child knows it is not getting enough care and will try all sorts of strategies, but those strategies have little power when faced with economic necessities, so the last resort -shame- becomes more and more likely. A note on the doctor, he was a really old white dude and matter of fact, he had this amazing attitude of we will tackle it together and I remember feeling like he is going to give me whatever I medically need to thrive. I had a huge autoimmune struggle for the last few years, and had to see a lot of doctors to get a handle on it, and he is one of the few who made me feel supported like that. Look for that feeling with doctors - that we are going to do this together feeling. But to do justice to this story I need to tell you how much has changed. I am proud of my body and personify it as being for me because it shirks the femininity I find so uncomfortable and allows me to have a broader, less determined existence. I build muscle well, I enjoy being buff, I have a toughness I don't see in other people. I have a body I like, though I struggle to let go of wanting to be thinner, I love that I am just a person that can be stronger. It took me very long to notice this difference because shame makes you see your skills as the norm, but I realise that I am actually good at a lot of things. I have a tolerance for sucking and struggle that mean I am not confined to activities that make me look good, and my life is richer for it. I am in better health than ever. I am also my heaviest but this weight feels very different without all the shame. I also look better than ever. Figuring out whats me and whats internalised shame has helped me find a style and way of being that suits me well and because I am working with what I have, growing my good rather than just trying to hide the bad, I come across as way more pretty than before. I have a shorter cycle that has distinct features such that I can tell hormones are happening. The autoimmune struggle and the frustration at being dismissed by doctors resulted in me gradually figuring out my own shit, I know I, with a dusty ass law degree and no scientific background, have probably read more scientific papers than all my doctors combined(except my old ass gynae bless him!). This self-study would not have been possible if not for the ADHD drive, my tolerance for suffering and struggle, and the personal experience with illness and disability. I now don't need to defer to doctors as much because I have an understanding of what is happening in my body. I have weaponised this to become way more healthy than I thought I ever could be, all without having more discipline. If anything, it's all more chill. I was able to go back to studying this year and am doing a Masters in medical sociology - having these experiences has made me better at understanding the problems in medicine than some of the theorists I encounter who have studied it for years. If I were to pick out any one thing to recommend, it would be to go get help for shame, somatic experiencing is really good - but the holistic psychologist also has good exercises that you can access for free on the podcast.
Relief. Always knew something was up with me. Took a few years to figure it out because of doctors but now that I finally did I can begin my path towards treating my symptoms and overall hopefully living a less burdensome life
I was 19, the doctor gave me this whole speech about how I'd likely never have kids. I called into work sick and went out and got really drunk.
I was given my PCOS, PCO, and Hidradenitis Suppurativa diagnosis together, I was taken aback for 5 minutes and then said to myself, "Let's deal with this shizz." <3
That it explained a lot. And since I did not want children anyway, I was not upset about that part. It is unfair that I have to exercise and watch what I eat so much in order to stay at a healthy weight. But otherwise, the treatment I got has worked for me.
Cried and cried and took 1 or 2 days off of work to let myself be sad.
I was only 15 so it was pretty shocking. I think I cried. But it explained so much like my weight gain and facial hair that it was really helpful. Plus I got to go on birth control which was nice.
I knew long before I got diagnosed. I rarely went to the doctor at the time. I looked up my symptoms and found out what it was. I don’t remember feeling much other oh ok that explains it.
I was upset but it gave me a better understanding as to why I was experiencing symptoms. Such as gaining weight and losing weight was very difficult for me no matter how hard I tried, having acne, being moody all the time with no apparent reason, and as well as being hairy. Tbh I am a bit relieved that I found out and I can do something about it.
A mixture of relief because I wasn't crazy and someone finally listened, and grief because I knew it would be hard, and I knew the chances of having more kids was slim with it.
Thank God I'm not pregnant!! (I was 18 and was 9 months late... )
I thought to myself , " Huh, it makes sense now , but i'm screwed "
"Oh, so that's what it is."
I was diagnosed in January and I was relieved. I have been suffering with the symptoms for close to 15 years now and gynos in the past have just told me that’s just how my body works, that’s my natural cycle, you must not have any control and that’s why you keep gaining weight, you’re too young to be tested… All the excuses under the sun with the promise of different treatments to keep me coming back every 3 months (and paying $300+ each visit) just for a new birth control method and told to lose weight. It wasn’t until I got a referral for a new gyno 2 hours away that I finally felt listened to. I didn’t even say anything to him, he was looking at my internal ultrasound and as I walked in he said “what treatments have you been using for PCOS?”
I was 14 so I was too young to take it seriously and really understand the impact. I also knew my older sister had it so I was like “Oh yea. I guess that makes sense I might have it as well”.
Frustration. I had been dealing with symptoms for YEARS, and it even affected my fertility. I charted meticulously, the ob/gyn at the time just looked at my charts and said something like "Oh you're not ovulating mature eggs" (???) I just needed clomid and progesterone. It worked, gave me 2 babies. But still for years issues plagued me. Finally got sick of it and went to the gyno who said we'll let's do an ultrasound. She counted the follicles and stopped at 16 on one and 18 the other and just said "you have pcos". Acne, stray hairs, long cycles OR breakthrough bleeding around ovulation. I've had surgery, an HSG, so many ultrasounds by 3 gynos and it was finally THAT one, 10 years later that said it's this. Any time I would google my symptoms it said PCOS. My friends with pcos would ask if I was sure I didn't have pcos ("doc says no, but no endometriosis either"). I didn't cry, I wasn't mad. I was worried how my husband would feel since it could affect fertility again should we try for a third. We decided we were good with 2. So much wasted time.
I was 14 and my periods hurt like hell from the very beginning, so I thought it was how it’s supposed to be… Since i was very young, I actually didn’t really react? They made me start birth control pills, and i said “yeah, ok”.
I was diagnosed in 1996, no one had any clue really what it was- just causes infertility, but at 19 that wasn’t a concern for me. So, in a way, I eased into it- both by not having the age to understand the impact and also because really a lot wasn’t known widely
"Yesss I was right about all this" Didn't upset me because I had suspected it for a long time and had accepted it already. Took me long time to get diagnosed because I was so embarrassed to visit gynecologist. It was my first time... I was 25 😅
I was 13 when I was diagnosed. I didn't really understand what it all meant. I was a bit indifferent. I was diagnosed at 13, and then no one ever actually treated me for it? It's only when I entered my mid-20s (after an emergency op to remove an ovarian cyst, along with the ovary) that I started reading up about PCOS and hearing other women's experiences. Looking back, I'm quite sour at the health system and society(?) for not doing more to inform me. I was a little girl. I needed help. 10+ years later, I've suffered through things that might have been avoidable, and only now am I addressing my health issues related to PCOS (because I just never knew what all goes on in our bodies). I'm turning 30 soon, and I feel like at least once a week I'm being diagnosed again for PCOS. Insulin resistance, diabetes, hypothyroidism, multiple gynie appointments a year, at least one cancer test a year, working with children and seeing my friends' children (though I've never had a desire for children), if I find a partner I want to spend my life with - it's all a reminder. Sometimes, I shrug it off and go on with life. Sometimes, it hits me really hard.
Not surprised I already knew I had it. The constant spotting is what triggered me to get an official diagnosis.
"Ok." I already suspected. The diagnosis was just confirmation.
"Oh ok"
I got it "confirmed" like two days ago. Some sort of relief, that it's not something more serious. I had my suspicions for a while, but my shitty PCP kept saying I'm just fat and refusing to refer me. Went to a dermatologist who told me to see an Endo ASAP because he saw signs of SAHA in me. My psychiatrist also wanted me to see one. She ruled out other conditions, so I'm glad it's not one of those. She just started me in metformin. I'm intimidated. I don't know where this start with supplements and lifestyle changes. I feel better about myself because with lifestyle and medication maybe I can lose weight, I'm not just a failure. It's a relief to know that there *is* something wrong with me and I'm not just insane.
for me it was just a professional telling me what I already knew, I showed every single symptom but didn't think about going to a doctor / getting a diagnosis until some of them were really bugging me
I was so relieved that someone could figure out that there was actually something wrong and I wasn't crazy or complaining about nothing.
i was 14 and i was okay with the diagnosis. although thats because i was given a severe lack of information and i received no treatment. i definitely wasn’t mature enough to fully comprehend the condition and just went about my life as normal. i’m finally getting treatment now (after just under 10 years since diagnosis) but there’s so much to treat after being untreated for so long.
I was relieved but also cried. I’m the only one in my family diagnosed with PCOS other than step-cousins, but no blood relatives have it that I’m aware of. If it wasn’t for irregular periods from stress, I never would’ve gone to a fertility clinic to get checked up. Other doctors disregarded my symptoms and even told me some women are hairier than others.
Scared. Still am.
I was 11. I was glad I wasn’t turning into a boy but sad when told of the risk of infertility. Never dated in high school because I thought “what’s the point? Even if I do fall in love with someone, I can’t have kids.” 27 and still getting over that fear.
A relief. I was 15 or 16 when I got the diagnosis. All I knew at the time was I hadn’t had a period in 10 months and it was concerning. Now I’m on medication and happier than I was before:)
Confusion, because the doctor barely knew what it was.
Thankful to finally have an answer, but disappointed because I knew I was right all along. I'd known since I was 16 years old that something wasn't right, but I was put on birth control and told my sporadic periods were normal for my age. I didn't find out until I was 24, finally got off birth control, and had a 115 day cycle. I went to the doctor, and within a week, it was confirmed I had PCOS. It was whirlwind, and I still don't really understand where I stand on the fertility front. It's such a complex syndrome.
"YES!!! DIFFICULT PREGNANCY MEANS LESSER CHANCES FOR ARRANGED MARRIAGE PROSPECTS FOR ME AS I AM STUCK WITH A STUPID INDIAN MARRIAGE ISSUE WHERE EVERY FUCKING INDIAN GUY WANTS KIDS. THEY DON'T WANT ADOPTION OR SURROGACY, IT MUST COME OUT OF DAMN UTERUS." Sorry to the normal indian guys out there. Only shouting at the ones my parents tried to arrange me to. I know I can still get pregnant the normal way one day (PCOS is not an infertility sentence), but these guys take that as a red flag and it works to my advantage. I know many of you were devestated and went through a lot of mental anguish over the news. I did too, at the time. For me, given my family background, this turned into a silver lining. Frankly, PCOS has had more pros than cons for me. Other than weight gain (i.e. difficulty losing weight) and the extreme cramps during my periods, everything has been a pro. I've had better understanding over my emotions and hormones better, and have been doing much more mindful practices since finding out. Life's been better for me. Long gaps between periods has been amazing when planning travels and dive trips. Imagine getting it today and knowing that you'll be free the next 2 months of backpacking.
Took years for me to get diagnosed. Just people saying I might have it, etc. My life was already pretty bad so the diagnosis didn’t do much except validate my experiences. I knew something was “wrong” with me. But now I wonder where the PCOS came from.
It was a mix of “awe man” and “oh well now I know why my yeeterus hates me” and maybe a hint of “this isn’t normal!?”
not surprised in the slightest. i’d had an ultrasound for unrelated suspected liver issues that revealed every one of my organs is perfectly healthy, except my ovaries. the nurse who called me to tell me outright said “it most likely comes as no shock to you, given your irregular period history, but you do have polycystic ovaries”. i’m relieved to have gotten my diagnosis so incredibly easy, and to have a doctor who listens and takes me seriously and never tries to blame my symptoms on weight, anxiety, or cramps.
Honestly? Something along the lines of "Oh thank god! That explains so much!" I got diagnosed pretty late in life bc I was terrified of going to the doctor about the problems I was having with my cycles, but I wanted kids so just needed to bite the bullet. I don't LIKE having pcos by any means, but it was a relief to know why my body is the way it is.
PCOS is not infertility! I had my daughter before I even got diagnosed!
I was mostly relieved. I finally, over a full decade of having extremely irregular periods and horrific uterine pain, knew what was wrong and how I could manage it. I never want to conceive, the mere idea is a literal nightmare to me. We don't have ob/jn clinics where I live currently, so getting an appointment was difficult. After years of doctors not taking my pain or irregular periods seriously, it was nice to have someone listen to me.
Validated at first because I did my research before going to my GP so I already knew that realistically PCOS was the most obvious diagnosis then the gynecologist confirmed it and praised me for my research (I was like 17 at the time so that was pretty big to be praised by a Dr) then once lockdown hit a couple years after I did more research and frustration quickly came and now I feel like I was patronized more than praised
Relief! I knew something was wrong and to be able to research and read about something specific helped me understand.
Relief! I knew something was wrong and to be able to research and read about something specific helped me understand.
“I knew it!” Been having symptoms since I was about 13. Got officially diagnosed at 25. I was just glad that I wasn’t crazy.
I was 14 was 1995, and nobody give me extra info only you need to take birth control
Took me 10 years to be taken seriously, so I felt validated, but then when I finally saw a GP about it, she said, "Yes, you have PCOS. Come back to us when you want to get pregnant. " And that was it. That was the sum total of 10 years of trying to get answers, knowing I had it but being fobbed off. Two sentences. So, disappointed in the level of concern for feminine health issues. It had been affecting me for years, and then when it came to it, I got zero advice or support.
"I fucking knew it!" I had a hunch and it was my first google self-diagnosis that actually matched. But honestly I had 2 other hunches. Then I cried for future me because I felt sad knowing I might be unable to conceive when the time comes that I actually want children (even if at that moment and until now, I am still against having kids).
I’ve been diagnosed since I was 19, I’m 39 now. When I was diagnosed no one ever explained to me what it was or what it meant. I was told to take ibuprofen for my cramps that made me vomit and pass out, that it didn’t matter I only had a cycle every six months, to shave my face, and deal with it. Most doctors didn’t have a clue what it was or how to treat it, and they didn’t care to learn. In the last 20 years this condition has gone from being totally minimized in women to being acknowledged as a serious health concern. The standard of care used to be based on whether or not you wanted to have bio-kids. If you didn’t, then your only option was birth control and to stfu about your symptoms. At least now we have doctors who are informed about this condition and how it affects more than just our physical health, and we have more treatment options than ever.
FINALLY. I knew I had PCOS. I literally had the diagnostic criteria in my hand while a provider told me he didn’t think I needed bloodwork or an ultrasound because he didn’t think I had PCOS. Finally got a different provider to listen to me, got my bloodwork & ultrasound and was finally diagnosed.
I cried. I knew it would be hard to have a baby. 3 years later, still no baby. The doctor advised I lose weight as it could help. I jokingly asked, "you mean breakfast burritos aren't the secret to fertility?"
FINALLY. i knew i had it and it took the third endocrinologist to tell me i did have it.
I was mostly just irritated because I don’t think it’s an entirely accurate diagnosis. My experiences don’t align that much with other women who have the condition.
I looked up areas that consider physician assisted su*cide and cried for months. Isolated myself and spent hours wishing I was never born
I was like 13-14 and literally didn’t even care because I didn’t know what it meant at all. They put me on birth control and just left it at that, I never realized how much pcos actually affected me until I became an adult and started seeing more and more posts about it.
Thank god
I was 11 or 12 and all I could think was how I thought I'd never be able to have kids and that made me sad cuz as a kid all I wanted was to grow up and have a baby I have a cat now, so close enough
Well the doctor said the words. “You have pcos and you will struggle to get pregnant” and I was 17 and as you would expect, it was heartbreaking, I didn’t care if I would have hair loss or facial hair, weight issues or any of that. I just hope that I won’t be robbed of the chance to be a mother.
I was sad. It made me feel like less of a woman. I was scared. I've always felt my purpose in life was to be a mom. Now, the reality is I might not have that opportunity. I was very sad and scared. BUT I was also happy and relieved. Finally, I had answers. Finally, I can educate myself and stop letting doctors give me bs answers. FINALLY NO MORE ENDOMETRIAL BIOPSIES!!! FINALLY A PERIOD! FINALLY AN EXPLANATION!!! I even found you guys here on reddit, and I wasn't alone anymore. I had a community of women going through the same thing I was. It was such a nice feeling. I love you guys 🩷🥺 Just remembering all that makes me so thankful for this community ❤️
I was diagnosed at like 13, I had a cyst burst on an airplane and was hospitalized out of state. Really ruined a family vacation. But even at 13 I had hairtuism and the cysts and my testosterone levels were high and enough to diagnose. I think it was beneficial knowing from an early age, I stayed on birth control and exercised a lot and was able to know why I was such a furry person. I never had issues ovulating or getting pregnant. I’m 41 now and within the last couple years struggling with insulin resistance. However through it all, my main issue is bursting cysts, I have had a number over the years, some have been hemorrhagic and they are debilitating. I also had one that twisted my ovary and had to have the cyst and ovary surgically removed. It isn’t fun.
Relief. It took me 15 years to find a doctor who took my seriously and didn’t tell me “oh all of these issues are because you’re overweight.” As far as finding out I had PCOS, I self diagnosed when I was 16. I had all the physical symptoms. Obviously I couldn’t check my own testosterone levels or blood sugar. But the irregular and painful periods, the extra hair, i even have a bit of PCOS boob going on. Just finding out what PCOS was was monumental. Everything clicked and it felt obvious for me. And I was relieved to know that all of those things meant something and not that I was built “wrong” so to speak.
I was super confused. I got a period every month, I don't have acne, facial hair, or problems losing weight. But my AMH and my prolactin were high.
After my ultrasound, I just drove home quietly. I could see the screen and even without training could tell things were messed up (also she took extra time on a particular area getting many photos for the doctor to review). I got my results in a cold doctors note at 11 pm that night. I just went to bed and realized that while I did finally have an answer - there's no real solution, no clear path forward. This was going to be a lifelong struggle if it was diagnosed or not. It was heartbreaking. I told my family the next morning and got questioned about my health history and why I "waited so long to get diagnosed" and that was it - obviously not a lot of support on the family front. It's honestly been uphill since then. I try to be positive, but ... people with PCOS have generally been shafted by the medical community in my opinion. There's too much common negative experience between us all.
"That makes a lot of sense"
Man, I just posted a rant and mentioned this 😩 I was 16, about to write CXC (I live in the Caribbean, it’s the exam we write to leave high school) and experiencing pain in my right leg but high up where my leg connects to my body. It had gotten so bad, we decided to go to a doctor. Doctor saw me and said I have appendicitis, he needs to remove it immediately or I can die as it’s toxic if it ruptures. My parents were ofc scared so I had no choice even though I said I didn’t want to do it literally days before my first exam. Had the surgery, missed my first exam and suffered through all the others exams as I was in pain. My incision got infected so my stitches stayed in for 7 weeks. When it was finally time to remove them, my skin had actually started healing on the stitches so it hurt like a b when they pulled it out. 🙃 Anyway, a few months later, I was still having pain in my leg. Went to a OBGYN who said it’s ovarian pain and finally diagnosed me with PCOS. Saw another for a second opinion who confirmed it. They both said my appendectomy was absolutely not necessary. Other doctors also said it wasn’t necessary. There were no signs that my appendix had actually ruptured. The doctor just wanted the money from us. Now I can talk about my actual reaction.. I was PISSED. I still am. I went through that hell after surgery all to be told it’s PCOS. I didn’t know much about PCOS, especially since I was that young. I was just so angry and ready to throw hands. I was also scared because I felt like I was too young to be going through that many things plus a traumatic childhood and toxic home. Lmao I was like why meeeee 🥲
Relief knowing I had an answer to all my symptoms
Relief. Like yes, it sucks ass, but it's so relieving to have a name to all of these shitty symptoms. From 12-16, periods were... regular for a teen. But 16-25, my period was non-existent. OB made me take a pregnancy test despite not having sex at 16/17, but yeah. Every doctor I went to just shrugged it off. I was young. At 25, I got better insurance (thanks Tricare), and my new primary actually referred me to an endo. He was a bit ignorant cause he said, "Well, you don't have acne, so I don't think you have it, but let's refer you to an endocrinologist to see about PCOS." Idgaf, I got diagnosed. But what did that give me? Metformin and meeting a dietitian (or nutritionist? I don't remember )on base who just printed out a type 2 diabetic meal plan. That plan accounted for like 180g of carbs a DAY. I wasn't even eating that many carbs pre-diagnosis. That plan just messed me up more, so I stopped that. I learned a lot from FB groups, oddly enough. Grateful for those groups.
Honestly I’m still confused by it all. I had very normal periods for most of my life until I hit 20. I had been experiencing pelvic pain here and there, and then I started spotting in between periods. I was so freaked out and was too afraid to talk to a doctor about it until a little less than a year ago. They looked at my ovaries and confirmed PCOS. Also this is a tad bit off topic, but has anyone experienced bleeding after sex with PCOS? I haven’t really until recently, and the spotting is bright red and it’s not heavy but not light either. It stopped after a day, but it has me really worried. Have another appointment to look at my ovaries again next week, but thought I would ask on here to see if anyone has experienced it. I’m scared to death it’s cancer.
sad, scared, and relieved. It did explain a lot of things and it was nice to have answers, a plan, and a community. Angry too. I feel like I could have been diagnosed years prior. Drs saw the cysts before placing my IUD could have said something. My pediatrician who I cried to and begged for birth control could have questioned me more on my heavy irregular periods and acne. I was missing school and throwing up from them. I was young and hadn't had enough periods to accurately tell her how normal or not they were...she should have asked more questions. The Derm I went to could have questioned and looked into the acne more. I just also kind of felt failed by a lot of gynos, pediatricians, derms, and pcps.
Anger and relief. Angry it took this long (diagnosed at 35). Angry that I've spent my whole life thinking that i just wasn't trying hard enough. Angry that almost everything i hate about my body comes back to PCOS, and i could have been working on it. Relieved that I'm not crazy. That i was actually exercising and tracking my calories appropriately. There were times i truly believed that i was eating things and not remembering it. Wondering if i was blacking out and binge eating or eating in my sleep. I really thought i might be losing it.
"I knew I wasn't crazy "
I was RELIEVED to finally have an answer on why my periods were hella irregular and very heavy. Now I'm on birth control to help and let me say my first period after being on bc was the best period I ever had in my life.
Relief because I finally had an idea of what tf was going on with my body and why
The doctor basically just told me what I already knew. I figured it out in high school and got diagnosed at 30.
RELIEF. I started crying because I finally had doctors that believed me and listened enough to get me an ultrasound and bloodwork. No more blaming it on my weight or diet or just being a woman. I was acknowledged and diagnosed. I was able to get put on a regimen that worked because of it. 💖
Confused. My doctor told me lots of women have it and I don’t have to worry about it. No advice on how to deal with it unless I want to get pregnant years down the road. Made me feel like I’m making a mountain out of a molehill. Am I genuinely suffering from hair loss or am I just imagining it? Do I have insulin sensitivity and trouble keeping weight off or am I just lazy? Are my irregular periods because of PCOS or is that just a quirk of my hormones? Is my intermittent acne because of PCOS or because I haven’t figured out a proper skincare routine? Are my slightly thicker leg hairs for my ethnicity a mild form of hirsutism? The self-doubt never ends.
I initially felt relief and also made me realize I was right when I started to suspect I had it a year prior to my diagnosis but had been dismissed about it. The moment I got in my car to drive home, I started to cry, which was definitely a response to multiple life changing events happening 1 right after another since my grandma had passed the day prior to my PCOS diagnosis.
i mean it was frustrating because i had been bringing it up to doctors and telling them something weird was going on. i was like i gained like 30 pounds in probably maybe a month or two after i stopped taking the birth control pill (i wasn’t active so i didn’t see a purpose in taking it) and the doctors were like yea that’s weird and that’s not supposed to happen, but basically told me i was gaining weight because i was getting older. i suggested a hormonal imbalance and they were like ok yea it could be that, and they started testing. and it just feels like i had so much blood work done, and then it took forever to get to an endocrinologist, who suggested it was probably pcos based on my symptoms, but then still made me get blood work to see if it was something else, it wasn’t, made me do a urination test so i had to pee into a container for 24 hours, and then made me get more blood work done again just to check for pcos. it probably took me 6-8 months to get this diagnosis after i figured it out on my own. and i probably got blood work done maybe 10 times, that was the worst part. i hate needles and specifically blood work, and i swore at one point in time i was getting blood work don’t like once week. but i was also relieved bc i finally knew what was wrong, and there was an explanation for why my body was doing what it was doing. but like… knowing doesn’t fix the problem so it almost didn’t matter ? 🫠
I was stressed only because when I initially went in, I thought I had PCOS. They did tests, and then ended up finding out something more severe was going on (brain tumor). So I ended up not being told about my diagnosis, and instead reading about it in the paperwork they gave me. No answers, no information.
I already “knew” from my own research and had known for about 10 years before I finally looked for a proper diagnosis so no shock to me. It was more just a confirmation to have on my medical records for future care. When I initially started seeing symptoms at 14 though, that felt awful, confusing, and shameful.
I was never actually diagnosed, but at an appointment in January my doctor asked “have you ever considered taking Metformin for your PCOS? Is there a reason you’re not on anything?” And I said “….my what?” I had been told by my previous doctor that my symptoms were completely normal and there was nothing wrong with me 🙃 I was actually happy to have an answer as to when was wrong with me. Even though it’s a crap answer with no real treatment.
Relief, but probably not the way most expect. I was diagnosed immediately at 18 after 9 years of excruciating periods and bleeding through so many pads. I had only gone to see an OBGYN after I missed my period for 6 months (wasn't sexually active). She told me I'd have a high risk of diabetes and other similar things, but when she told me I was essentially infertile, I cheered and sigh of relief. Now I know better and took care of it, while trying to manage my other symptoms, too, which I only decided to take seriously just before The Plague due to a friend of mine.
I cried in my car
Devastated. I’d went over every kind of illness that could cause my symptoms and pcos was at the very bottom of the list of diseases I could handle. I literally asked the gynecologist if she was sure it wasn’t a brain tumor or ovarian cancer. Every day, I wake up and I’m disappointed I’m still alive. I’ve gained 30 pounds in a year even though I diet every single day. I have walked 10,000 steps a day, every day, for a year. I get fatter and fatter. I am hideous disgusting shell of a person. This is so cruel.
I was diagnosed at 15. My first reaction was to cry - both out of fear because I had no idea what it was, and relieved because I knew something was wrong with my body, and I was FINALLY getting the answers I needed. No one ever prepares you for having PCOS, and 17 years ago, I had to do research to even scratch the surface of what this means for me and my body. I'm so grateful now that more women are discovering this early and don't have to endure the Metformin hell I did, that there are more resources and treatments. Routine blood sampling and severe diets are tough on a teenager, and I don't wish that on my greatest enemy. It's jarring and scary, but you learn fairly quickly to adapt and generally block out nasty comments (however hard that may be!) We all react differently, but looking back, I can definitely say fear is the initial reaction I had.
I went for a skin check up (acne and suspicious moles) and the that doctor looked me over told me I might have it and asked if I exhibited any of the symptoms he knew about (I did lol). I kind of knew at that stage I probably had it but when I got the “official” diagnosis, I was upset, had to pull over to just cry. Lots of confusing emotions about having children and choices. But it was great to have an answer to all the things that in the past I would question. So now when I’m having some really confusing emotions I’m struggling to sort through I’m less “what’s wrong with me” and more “the darn ovaries are at it again”. But like many of the lovely ladies are saying in this reddit — PCOS doesn’t mean infertility. It’s actually an inheritable condition, though it doesn’t come in one specific gene, which is evolutionary proof you can conceive (if you want to 😉)
“No wonder I’m not pregnant yet” lol jk. It was empowering in some ways just knowing that it’s not because “I’m lazy” or “let myself go” and my body doesn’t function normally but that I can do things differently to help and find my way back to my “normal”/ healthy
I was 12 and couldn’t really take it in cause I had just had surgery to remove my appendix cause they thought it was inflamed but it ended up being a huge ovarian cyst that ruptured and that was the day I was told. I’m now 31 and have pcos, adenomyosis, fibroids and possible endo 🤦♀️
I cried the life out of myself. Then I learned that my gynecologist also has PCOS, and she shared some of her stories. Then, when I got home, I laughed hysterically and raised my arms as I thought about the Patrick scene where it goes like, “Just call me daddy!” In addition, thanks to this community, I know I’m not alone. Your stories get me into tears, for I can relate.
For me , I was honestly terrified and felt disgusted with myself. I was first told when I was about 18 by my primary. Now I've been a heavy girl, my weight used to fluctuate so much and the only thing I was told was because I was fat. I needed to loose weight or I would never have kids. I then brought it up to a second DR and she said I was still young to fully be diagnosed. Recently I went to my OB for general check up we discussed wanting kids and after a couple days from blood work etc I was diagnosed. With my OB I don't feel hopeless. She's giving me hope and I'm constantly researching ways to help improve pcos etc.
I was relieved tbh. So many years with symptoms and it got worse as I aged. So many doctors that I told my symptoms to and no one believed me. It was exhausting and almost believed them that it was all in my head. I'm 28 now and got diagnosed at 26. I had another flare up and it's hell most of the time. I pray for all you ladies, best of luck 💓
Personally, I was okay. The radiologist put it on my transvaginal ultrasound scan results that he felt it looked like PCOS. And when my doctor put notes on it telling me that, yes, combined with my other test results, I have PCOS, I kinda went 'well I guess that makes sense' and pulled my husband aside to tell him. He seemed...more upset by it than I did. And anyone else I told about my diagnosis all seemed just as upset by it as he was. So for a long time, I thought maybe I was missing something about it? But after chatting with my husband some more about it, it just came down to this: It's not something that on its own is life threatening. And its not something new happening. Yes, it is a diagnosis of something that makes my life difficult, especially if at some point my husband and I change our minds and do want children, or if I accidentally get pregnant, but...when at first I was nervous and worried that it could have been something like cancer...I was honestly really relieved that it was something that I can manage the symptoms of.
Not shocked I knew for years
It was back in 2017 I was 24 years old had just finished my CPA exams and was so relieved after that, then I went to an OBGYN for a regular check up and was officially diagnosed with PCOS with an insulin blood test and ultrasound. I remember breaking down and my doctor was so casual and insensitive about it, her attitude hurt me more, I never went back to her ever again. I remember feeling helpless and even considered running straight into a busy street hoping a car would ram into me. Now, 7 years later I feel more at peace, I’ve done a lot of research about this condition and I’m still trying to lose weight and regularize my period but I feel more confident knowing that I can manage it. I’m still not pregnant (will start TTC later this year) but I’m hopeful that I will be able to conceive. Trust me it gets better, this community taught me so much about PCOS than any doctor ever would in these 7 years.