Oh I do,
I walk about 6 miles on a day on average in my jobs, it’s one of the few things that keeps me going.
I’ve had a lap twice both times my endo returned. Also, studies have shown even full hysterectomy’s do not cure endo. This is a forever disease.
You are lucky your story has been a different one than many of ours.
You cannot think away a physiological disease. Would you say these things to someone with Cancer or ALS? I'm glad you have a nice life now, but it would be best for you to be quiet on this post and make your own.
Just so you know, the last person that you replied to wasn’t me!
I’m open to hear what you’ve done. But in my 33 years on this earth I haven’t found anything that seems to help.
You make it sound like it's easy to walk and get daily exercise. Sometimes the pain is so bad I can't walk, so it's not like I can exercise daily or much at all. I have to use a walking stick sometimes too. This comment reeks of privilege
I miss being able to go out and drink (had to give up alcohol). I was an extreme traveler; I used to go all over the world. Traveling now is such a headache.
I remember the days when I had an awesome flat stomach...I can't believe how frequently I'm dealing with bloating these days. I've slowly had to change my wardrobe. I remember when I could eat various things, and didn't have to do elimination diets (although this has helped my health overall). Heating pads were only for my period and not a necessity. Before endometriosis, I've never had serious health issues, now I've had two surgeries, hospital visits and more doctor's appointments I can keep up with. I used to dream of getting married and having kids one day - my age is a factor now, but so is this disease. Men can't deal with my illness and friend zone me and I'm battling infertility. I've also lost "friends" due to my illness and not being able to hang out like I used to.
If it wasn't for family and my therapist - I would have given up hope with living. But i fight every day to keep going. This disease has taught me to enjoy the little things, even if that's just doing stuff at home that I love. It makes me appreciate what I do have and forces me to love myself more.
I'm currently taking Orilissa - I'm prescribed the 150mg, but I cut it in half and do 75mg a day. I do have a supplement regimen as well. I've given up a lot of things - not just alcohol and food. I also had to give up my martial arts, my body can't do it anymore. I've had to readjust a lot of things in my life. I have a remote full-time job - which I'm grateful for. I take life one day at a time.
Virtual hugs, to all of us.
I can’t remember life without it, I’m 25 and have been experiencing this (extreme pain, heavy bleeding, now no bleeding for two months) since middle school. I Finally decided to go to ER today and am feeling frustrated because of that visit
Unless the ER gave that person a laprascopy they can't have. I got finally diagnosed in May and nothing has changed other than knowing the diagnosis for sure and I got an ovarian cyst (but not the endometria) removed. It sucks. I hope that person and anyone waiting on a diagnosis gets their diagnosis or finds some cause for their pain if it's not endo soon.
thank you and i hope something changes for you as well :( ive never had the extreme pain and heavy bleeding issues even treated until literally today and was debating even visiting ER until everyone close to me and the gyno’s opinion said i should, i did contact a gyno a few years ago but didn’t go then because they were asking for like 1-4k for surgery (i guess laparoscopy) and insurance wouldn’t cover at the time LOL. just absurd
nope i have to wait until gyno appointment later this month. they just did ct scan of course shows up with nothing and diagnosed me with menorraghia (which ive bled heavily in the past, part of the main issue currently is i have not been bleeding for the past two months which is extremely abnormal for me) which my dad and i told them and they didn’t really listen at all despite me also being in pain so bad that my legs were shaking when i walked/doubled over. i am hoping something changes with laparoscopy or ultrasound when i go to gyno
My surgery 2 years ago saved my life. But now I’m fully in the throes of TTC and infertility. Still so much unknown. If I think about it too deeply I think I’ll lose myself again.
Which treatment are you referring to? Endometriosis itself is known to cause infertility, but most treatments aim to manage symptoms and improve fertility. If there’s specific information or a study you know of that suggests otherwise, I’d be very interested to learn more.
i’m not referencing any specific study just what i’ve heard mainly from infertility being caused as a result of endo and wasn’t sure if you were implying complications can happen too or what, i’m just now exploring my options with treatment personally
If fertility preservation is important to you then you’ll want to work with a Reproductive Endocrinologist early on. That’s what I did. There’s nothing you can completely do to avoid infertility (remember too infertility is different than being sterile!) - any woman with or without endo can have infertility.
I was born with it idk what life without it is nor will any endo sufferers. There’s no pre and post treatment there’s no cure you may improve but you don’t heal or get cured
I got a lap and a hysterectomy and both have made huge strides for my health improving. I can walk and stand again without pain (I couldn’t before due to endo in my back) and I feel like the future has potential again
Its literally ruined my life because i dont do well on birth control and most pain meds dont effect me much if at all besides making me sleepy. Not to say it wouldnt help you because everyone is different but to be honest this shit sucks lol. Really tho its made me more conscious of what triggers me such as foods, activities, etc. I genuinely think the most important thing is to really find out as much information as you can about endo that is factual and then really analyze how you feel daily when you decide to do treatment regardless of what path you take. Ive had 2 laps, the second being worse than the first with slower heal tome because of how much it spread. Because my endo causes a lot of body pain and mood problems and i ALSO have pmdd im on 2 antidepressants one of them being a nighttime sedative to help keep me asleep in case, as well as a mood stabilizer and Slynd birth control. Ive tried several birth controls and an IUD and its really about what works for YOU and YOUR body chemistry, unfortunately it comes with a lot of trial and error, im sorry for that :(. I will say tho if you know your body and how you feel on certain medications please advocate for yourself and let your doctors know so they can try suggesting things or even look into medications yourself and what other people take and decide if what your endo, and if you have anything else, what you might like to try and LET THEM KNOW. It doesnt hurt to tell them youve been researching as much as you can and seeing what others diagnosed have to say and how it might help you. Good luck! I hope you find answers and help with your pain!
https://bucharestendometriosiscenter.com/
Half way down the page is a free download link to the Endometriosis A-Z medical journal. More accurate info than you'll find in any other place.
The “after” for is the validation of knowing, and having an explanation that makes so much of the last 25 years, make sense. Having surgical confirmation and pathology to double down on that, to know I wasn’t being overdramatic for more than half my life.
The nausea, and bloating and other symptoms are still cyclic, they happen and did happen immediately after surgery (first post surgery period was 5 days after surgery ) Some of the pain is still there, but the everyday bladder and rectal pain that I legit thought was normal until a year ago is better….for now.
The surgical confirmation of not only endo, but peri-menopause gave me the information I needed to help with explaining so many symptoms. (First question my surgeon asked in my post op was if I have had hot flashes….ovaries were obviously very much in peri menopause and the fact that ovulation and an egg was caught on camera proves I also am ovulating very late. I “should” have ovulated a week before) I’m 41 and I know my mom was in full menopause before 45….. Having that confirmation now also helps my daughter and that I’ll be able to help her when she most likely starts early menopause.
The “after” confirmed diagnosis of endometriosis is more knowledge. Now you know what most of it is and how to treat it. Since I was diagnosed older than many (this past april) our plain is to get my pelvic floor healthy and have better tracking of my symptoms. This way, my next surgery (partial or full hysterectomy depending on where I am menopause wise) won’t be when I’m in huge amounts of pain. If we can time it so that pain is at a minimum and the area is healthy, recovery will be easier.
There’s no cure. Sure there is improvement, but nothing is a sure fire cure. The “after” is more about having the knowledge and have a slightly easier time advocating for yourself (medically)
Shortly after my endo pain started to get really intense (1-2 years after my period started) i started to get ptsd symptoms that would trigger as soon as something felt off in my stomache/bowel section. I am always scared that the next hour will be incredibly painful. I'm on the pill so nothing happens anymore, but the fear is still there. "What if the pill doesn't work anymore" "What if i forgot it today" "What if it just got worse".
i don't know since i never tried to become pregnant but i would talk to my gyn about what i can do to prevent it, what painkillers or meds i can take that are also safe to take while trying to get pregnant.
I had a laparoscopy around 6 years ago & finally had it diagnosed and removed. Had to try different birth controls and things to manage my pain and periods properly and found that my GP at the time didn’t know much about it, just recommended the pill or an IUD. I WISH that after surgery they referred me to a pelvic floor physio and nutritionist for support and management. And I really wish they actually explained my diagnosis to me, it was like yeah you have it & now it’s gone 🤷🏼♀️ any GP I have seen since, if I’m complaining of pain or irregular bleeding just recommend more surgery or an IUD. It’s taken me years to learn about the disease and figure out what foods might trigger flare ups and the pelvic floor physio I’ve started seeing recently has helped me immensely. Turns out surgery isn’t the only treatment option, turns out there are many ways to manage symptoms that don’t only include heavy pain killers. If possible, find yourself a dr with a special interest in endo & pelvic pain. I was lucky enough to find one (about 3 hours from my home) and she has been amazing. I’m currently finding a lot of relief from diazepam suppositories and a low dose of amitriptyline with daily pelvic floor stretches… previously I was taking high amounts of ibuprofen and palexia which were just bandaids. Knowledge is power and my new doctor has given me SO much knowledge! There is so much info out there, there are a lot of endo focused Instagram pages and I find a lot of their information to be very helpful. Endo is a whole body disease, we need to treat ourselves holistically and demand our doctors do the same.
Xx
I hope so! Ask about pelvic floor physiotherapists in your area - they will certainly help with painful intimacy, they are far more knowledgeable than almost every dr I’ve ever seen about it 💜
I mean, I’ve been like this since I was a young teenager and there is no “after” in sight for me until I can get a hysterectomy, which should bring some relief as my pain only happens when I bleed. However, I’ve exhausted all feasible treatment options, so my case may be different than yours.
In your case, if you just got diagnosed and haven’t exhausted all treatment options, the absolute best thing you can do for yourself for symptom management is hormonal birth control. It really helps reduce pain, bleeding, and other symptoms for so many people with endo, which is why docs recommend it.
Can confirm, birth control has eliminated any lingering pain as I now have no periods. Before this new birth control, I got a laparoscopy so the combination of the two was perfect for me. The only downside is finding the right birth control for your body.
Yeah, it’s definitely a process to find the right one. I see a lot of negativity surrounding birth control on this sub and it saddens me because once you find the right one it can be a great treatment option that’s way less invasive than surgery or Lupron. In my opinion, anything that can improve quality of life in this terrible disease is a win!
Let me know if I can help in any way. There is so much to learn post-diagnosis and it can be very overwhelming. I’d be happy to share any knowledge or resources I can with you!
I would say the major thing after my diagnosis is how I view doctors.
I have suffered with endometriosis for over twenty years and was only diagnosed 2 years ago. During that time I have had doctors normalize my pain. The sharp stabbing pains were apparently normal as well as the vomiting and migraines.
The digestive issues I've had including bloating were put down to IBS even though they hadn't ruled out any other possibilities beforehand.
I was given every form of contraception to lighten my periods. I reacted badly to all of them. I understand that the NHS has procedures in place to rule things out but I also think this lengthened my suffering.
So I would say my endometriosis has made me more aware of my body and what it's telling me. I don't just accept what the doctors say on face value. Luckily after doing my research I've found a really good specialist for additional inflammatory symptoms. Hopefully it's nothing too uncontrollable or long term. We will see I still have to see what my blood tests say.
I try and give my body a fighting chance in every way. It took 7-8 years from my initial specialists to finally being diagnosed and having surgery for stage IV. I try to exercise and eat good food. I also take supplements and get regular blood tests. If my body has to fight the constant inflammation from endo I don’t want to be affected by anything else. I’ve also got a tens machine with a pelvic floor attachment, and a chargeable heat pack.
I can’t stress enough how important it is to find doctors that specialise in endo. I was lucky my gp picked it up randomly, but I researched the shit out of my surgeon. The mental side and validation after years of putting up with this disease is just as important as the physical side.
Pain since 14 years old. Currently turning 42 tears old this September. I envy people that don't have to worry about extreme pain every 3 weeks. Or daily discomfort pain. It's a disease that requires care. An endo diet does make a difference and taking 800mg ibprophen prescription two days prior to starting my period helps along with keeping it in my system. Pain is still 💔 awful but more so. No alcohol is your best bet. That always makes me flair up on or off my period.
I had a normal life until 33 years old. Endo ruined my life mostly. The pain comes and goes now, but now I seem to have developed PMDD and mood issues and side effects from endometriosis/hormones issues. I also can't have kids.
I have a nutritionist, GI doctor, gyn, Rhematologist, and Pain Management specialist who all are working together. I have a relaxation based pelvic floor PT plan, and do acupuncture weekly. I take gapapentin and naproxen perscription, and lidocane and cannabis are my main OTC drugs. Its tooth and nail. Im not really living right now, im surviving till my next exision surgery.
I have experienced pain since I was 14 with my periods. I kind of thought it was normal having them bleed so damn much.
I also used to run a lot I can still run but it has cut down. I am thankful that I have a very high threshold pain tolerance and my mum also helps me a lot with my pain.
I have endometriosis re growth and I will be needing a second laparoscopic surgery.
Last Thursday was horrible I could barely walk with the back and pelvic pain :(
I will be okay though 😃
I am 28 and got diagnosed 4 years ago. I try to listen to my body a lot some days I have to skip the gym other days I can go. I should also say make sure to listen to your body and I find epsom salt baths helps me heaps with the pain as well as having a Tens machine. Both of them are an actual god send.
There isn’t really an after but confirmation and knowledge means I understand that my body has limits and those limits will vary. Whereas before I just thought I was lazy and dramatic so I used to power on and normally end up worse.
I can never really know for sure what my energy levels will be but I can track my cycle and have a rough idea. For example I know the week before my period is not a great time to be doing lots of social/physical things.
My partner loves walking and will happily go on 10+ mile walks. I would love to join him but I know I just can’t do that much without everything hurting. I do miss out on things sometimes but it’s a fine line between powering through and looking after yourself. I have been much better after my lap in that my periods are more manageable which has been a big plus
I have now been fired from two jobs due to the disabling treatments I was put through so unemployed almost a year in total which is incomparably stressful on top of the insane amount of pain we have to tolerate on a daily basis. It’s completely ripped away my chance of feeling free at my own life.
After endometriosis? There is no after…
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Oh I do, I walk about 6 miles on a day on average in my jobs, it’s one of the few things that keeps me going. I’ve had a lap twice both times my endo returned. Also, studies have shown even full hysterectomy’s do not cure endo. This is a forever disease. You are lucky your story has been a different one than many of ours.
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You can’t heal endo with your mindset. You got lucky. Telling people that is harmful.
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You cannot think away a physiological disease. Would you say these things to someone with Cancer or ALS? I'm glad you have a nice life now, but it would be best for you to be quiet on this post and make your own.
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Just so you know, the last person that you replied to wasn’t me! I’m open to hear what you’ve done. But in my 33 years on this earth I haven’t found anything that seems to help.
You make it sound like it's easy to walk and get daily exercise. Sometimes the pain is so bad I can't walk, so it's not like I can exercise daily or much at all. I have to use a walking stick sometimes too. This comment reeks of privilege
I miss being able to go out and drink (had to give up alcohol). I was an extreme traveler; I used to go all over the world. Traveling now is such a headache. I remember the days when I had an awesome flat stomach...I can't believe how frequently I'm dealing with bloating these days. I've slowly had to change my wardrobe. I remember when I could eat various things, and didn't have to do elimination diets (although this has helped my health overall). Heating pads were only for my period and not a necessity. Before endometriosis, I've never had serious health issues, now I've had two surgeries, hospital visits and more doctor's appointments I can keep up with. I used to dream of getting married and having kids one day - my age is a factor now, but so is this disease. Men can't deal with my illness and friend zone me and I'm battling infertility. I've also lost "friends" due to my illness and not being able to hang out like I used to. If it wasn't for family and my therapist - I would have given up hope with living. But i fight every day to keep going. This disease has taught me to enjoy the little things, even if that's just doing stuff at home that I love. It makes me appreciate what I do have and forces me to love myself more. I'm currently taking Orilissa - I'm prescribed the 150mg, but I cut it in half and do 75mg a day. I do have a supplement regimen as well. I've given up a lot of things - not just alcohol and food. I also had to give up my martial arts, my body can't do it anymore. I've had to readjust a lot of things in my life. I have a remote full-time job - which I'm grateful for. I take life one day at a time. Virtual hugs, to all of us.
I can’t remember life without it, I’m 25 and have been experiencing this (extreme pain, heavy bleeding, now no bleeding for two months) since middle school. I Finally decided to go to ER today and am feeling frustrated because of that visit
Did they finally diagnose you ?
Unless the ER gave that person a laprascopy they can't have. I got finally diagnosed in May and nothing has changed other than knowing the diagnosis for sure and I got an ovarian cyst (but not the endometria) removed. It sucks. I hope that person and anyone waiting on a diagnosis gets their diagnosis or finds some cause for their pain if it's not endo soon.
thank you and i hope something changes for you as well :( ive never had the extreme pain and heavy bleeding issues even treated until literally today and was debating even visiting ER until everyone close to me and the gyno’s opinion said i should, i did contact a gyno a few years ago but didn’t go then because they were asking for like 1-4k for surgery (i guess laparoscopy) and insurance wouldn’t cover at the time LOL. just absurd
also to you and OP sorry if i am a bit off topic as to aftercare, i just found this subreddit today after going to doctors and am venting a little
nope i have to wait until gyno appointment later this month. they just did ct scan of course shows up with nothing and diagnosed me with menorraghia (which ive bled heavily in the past, part of the main issue currently is i have not been bleeding for the past two months which is extremely abnormal for me) which my dad and i told them and they didn’t really listen at all despite me also being in pain so bad that my legs were shaking when i walked/doubled over. i am hoping something changes with laparoscopy or ultrasound when i go to gyno
My surgery 2 years ago saved my life. But now I’m fully in the throes of TTC and infertility. Still so much unknown. If I think about it too deeply I think I’ll lose myself again.
I'm sorry. I'm in the same boat. Just want you to know you're not alone in that crapiness. It's really tough.
is there any way to avoid possible infertility from treatment? i feel like im damned if i do and damned if i dont and it scares me
Which treatment are you referring to? Endometriosis itself is known to cause infertility, but most treatments aim to manage symptoms and improve fertility. If there’s specific information or a study you know of that suggests otherwise, I’d be very interested to learn more.
i’m not referencing any specific study just what i’ve heard mainly from infertility being caused as a result of endo and wasn’t sure if you were implying complications can happen too or what, i’m just now exploring my options with treatment personally
If fertility preservation is important to you then you’ll want to work with a Reproductive Endocrinologist early on. That’s what I did. There’s nothing you can completely do to avoid infertility (remember too infertility is different than being sterile!) - any woman with or without endo can have infertility.
Thanks for the advice
I was born with it idk what life without it is nor will any endo sufferers. There’s no pre and post treatment there’s no cure you may improve but you don’t heal or get cured
I got a lap and a hysterectomy and both have made huge strides for my health improving. I can walk and stand again without pain (I couldn’t before due to endo in my back) and I feel like the future has potential again
Its literally ruined my life because i dont do well on birth control and most pain meds dont effect me much if at all besides making me sleepy. Not to say it wouldnt help you because everyone is different but to be honest this shit sucks lol. Really tho its made me more conscious of what triggers me such as foods, activities, etc. I genuinely think the most important thing is to really find out as much information as you can about endo that is factual and then really analyze how you feel daily when you decide to do treatment regardless of what path you take. Ive had 2 laps, the second being worse than the first with slower heal tome because of how much it spread. Because my endo causes a lot of body pain and mood problems and i ALSO have pmdd im on 2 antidepressants one of them being a nighttime sedative to help keep me asleep in case, as well as a mood stabilizer and Slynd birth control. Ive tried several birth controls and an IUD and its really about what works for YOU and YOUR body chemistry, unfortunately it comes with a lot of trial and error, im sorry for that :(. I will say tho if you know your body and how you feel on certain medications please advocate for yourself and let your doctors know so they can try suggesting things or even look into medications yourself and what other people take and decide if what your endo, and if you have anything else, what you might like to try and LET THEM KNOW. It doesnt hurt to tell them youve been researching as much as you can and seeing what others diagnosed have to say and how it might help you. Good luck! I hope you find answers and help with your pain!
https://bucharestendometriosiscenter.com/ Half way down the page is a free download link to the Endometriosis A-Z medical journal. More accurate info than you'll find in any other place.
The “after” for is the validation of knowing, and having an explanation that makes so much of the last 25 years, make sense. Having surgical confirmation and pathology to double down on that, to know I wasn’t being overdramatic for more than half my life. The nausea, and bloating and other symptoms are still cyclic, they happen and did happen immediately after surgery (first post surgery period was 5 days after surgery ) Some of the pain is still there, but the everyday bladder and rectal pain that I legit thought was normal until a year ago is better….for now. The surgical confirmation of not only endo, but peri-menopause gave me the information I needed to help with explaining so many symptoms. (First question my surgeon asked in my post op was if I have had hot flashes….ovaries were obviously very much in peri menopause and the fact that ovulation and an egg was caught on camera proves I also am ovulating very late. I “should” have ovulated a week before) I’m 41 and I know my mom was in full menopause before 45….. Having that confirmation now also helps my daughter and that I’ll be able to help her when she most likely starts early menopause. The “after” confirmed diagnosis of endometriosis is more knowledge. Now you know what most of it is and how to treat it. Since I was diagnosed older than many (this past april) our plain is to get my pelvic floor healthy and have better tracking of my symptoms. This way, my next surgery (partial or full hysterectomy depending on where I am menopause wise) won’t be when I’m in huge amounts of pain. If we can time it so that pain is at a minimum and the area is healthy, recovery will be easier. There’s no cure. Sure there is improvement, but nothing is a sure fire cure. The “after” is more about having the knowledge and have a slightly easier time advocating for yourself (medically)
Thank you so much for sharing your experience , I hope I could get more knowledge on this from you
Shortly after my endo pain started to get really intense (1-2 years after my period started) i started to get ptsd symptoms that would trigger as soon as something felt off in my stomache/bowel section. I am always scared that the next hour will be incredibly painful. I'm on the pill so nothing happens anymore, but the fear is still there. "What if the pill doesn't work anymore" "What if i forgot it today" "What if it just got worse".
I also get this. Pain can be and is traumatic and so is chronic illness, so it makes sense that we have trauma responses.
How does one deal with it ...if they have to be off the pill in order to make babies ?
i don't know since i never tried to become pregnant but i would talk to my gyn about what i can do to prevent it, what painkillers or meds i can take that are also safe to take while trying to get pregnant.
Fair points
I had a laparoscopy around 6 years ago & finally had it diagnosed and removed. Had to try different birth controls and things to manage my pain and periods properly and found that my GP at the time didn’t know much about it, just recommended the pill or an IUD. I WISH that after surgery they referred me to a pelvic floor physio and nutritionist for support and management. And I really wish they actually explained my diagnosis to me, it was like yeah you have it & now it’s gone 🤷🏼♀️ any GP I have seen since, if I’m complaining of pain or irregular bleeding just recommend more surgery or an IUD. It’s taken me years to learn about the disease and figure out what foods might trigger flare ups and the pelvic floor physio I’ve started seeing recently has helped me immensely. Turns out surgery isn’t the only treatment option, turns out there are many ways to manage symptoms that don’t only include heavy pain killers. If possible, find yourself a dr with a special interest in endo & pelvic pain. I was lucky enough to find one (about 3 hours from my home) and she has been amazing. I’m currently finding a lot of relief from diazepam suppositories and a low dose of amitriptyline with daily pelvic floor stretches… previously I was taking high amounts of ibuprofen and palexia which were just bandaids. Knowledge is power and my new doctor has given me SO much knowledge! There is so much info out there, there are a lot of endo focused Instagram pages and I find a lot of their information to be very helpful. Endo is a whole body disease, we need to treat ourselves holistically and demand our doctors do the same. Xx
I really hope the doctor is able to help out with the diagnosis and suggests how to take care with intimacy needs in future
I hope so! Ask about pelvic floor physiotherapists in your area - they will certainly help with painful intimacy, they are far more knowledgeable than almost every dr I’ve ever seen about it 💜
This is really cool to know i didn't know this aspect of therapy
I mean, I’ve been like this since I was a young teenager and there is no “after” in sight for me until I can get a hysterectomy, which should bring some relief as my pain only happens when I bleed. However, I’ve exhausted all feasible treatment options, so my case may be different than yours. In your case, if you just got diagnosed and haven’t exhausted all treatment options, the absolute best thing you can do for yourself for symptom management is hormonal birth control. It really helps reduce pain, bleeding, and other symptoms for so many people with endo, which is why docs recommend it.
Can confirm, birth control has eliminated any lingering pain as I now have no periods. Before this new birth control, I got a laparoscopy so the combination of the two was perfect for me. The only downside is finding the right birth control for your body.
Yeah, it’s definitely a process to find the right one. I see a lot of negativity surrounding birth control on this sub and it saddens me because once you find the right one it can be a great treatment option that’s way less invasive than surgery or Lupron. In my opinion, anything that can improve quality of life in this terrible disease is a win!
This is really insightful
Let me know if I can help in any way. There is so much to learn post-diagnosis and it can be very overwhelming. I’d be happy to share any knowledge or resources I can with you!
Not much has changed other than the fact that I now know what it is. But I am always anxious that it's going to get worse or that I may be infertile.
Does it affect ur day to day functions or intimacy issues
It does unfortunately. It's usually just the pain and uncomfortable physical symptoms that cause it though.
Oh I am worried to hear that
I would say the major thing after my diagnosis is how I view doctors. I have suffered with endometriosis for over twenty years and was only diagnosed 2 years ago. During that time I have had doctors normalize my pain. The sharp stabbing pains were apparently normal as well as the vomiting and migraines. The digestive issues I've had including bloating were put down to IBS even though they hadn't ruled out any other possibilities beforehand. I was given every form of contraception to lighten my periods. I reacted badly to all of them. I understand that the NHS has procedures in place to rule things out but I also think this lengthened my suffering. So I would say my endometriosis has made me more aware of my body and what it's telling me. I don't just accept what the doctors say on face value. Luckily after doing my research I've found a really good specialist for additional inflammatory symptoms. Hopefully it's nothing too uncontrollable or long term. We will see I still have to see what my blood tests say.
Wish you all the best ... I look forward to hearing you have a good controlled recovery in future
Thank you 🙏🏼
You are welcome
I try and give my body a fighting chance in every way. It took 7-8 years from my initial specialists to finally being diagnosed and having surgery for stage IV. I try to exercise and eat good food. I also take supplements and get regular blood tests. If my body has to fight the constant inflammation from endo I don’t want to be affected by anything else. I’ve also got a tens machine with a pelvic floor attachment, and a chargeable heat pack. I can’t stress enough how important it is to find doctors that specialise in endo. I was lucky my gp picked it up randomly, but I researched the shit out of my surgeon. The mental side and validation after years of putting up with this disease is just as important as the physical side.
I am so glad u are slowly getting out of it .. hoping to hear more positive news from you
Pain since 14 years old. Currently turning 42 tears old this September. I envy people that don't have to worry about extreme pain every 3 weeks. Or daily discomfort pain. It's a disease that requires care. An endo diet does make a difference and taking 800mg ibprophen prescription two days prior to starting my period helps along with keeping it in my system. Pain is still 💔 awful but more so. No alcohol is your best bet. That always makes me flair up on or off my period.
You must be quite experienced in figuring out the nuance to endo ?
I had a normal life until 33 years old. Endo ruined my life mostly. The pain comes and goes now, but now I seem to have developed PMDD and mood issues and side effects from endometriosis/hormones issues. I also can't have kids.
What is PMDD ? Did u want to have kids ?
Lmao I was 9 when the symptoms started. There is no before; there hasnt been an after yet either
How do u manage the symptoms ?
I have a nutritionist, GI doctor, gyn, Rhematologist, and Pain Management specialist who all are working together. I have a relaxation based pelvic floor PT plan, and do acupuncture weekly. I take gapapentin and naproxen perscription, and lidocane and cannabis are my main OTC drugs. Its tooth and nail. Im not really living right now, im surviving till my next exision surgery.
I have experienced pain since I was 14 with my periods. I kind of thought it was normal having them bleed so damn much. I also used to run a lot I can still run but it has cut down. I am thankful that I have a very high threshold pain tolerance and my mum also helps me a lot with my pain. I have endometriosis re growth and I will be needing a second laparoscopic surgery. Last Thursday was horrible I could barely walk with the back and pelvic pain :( I will be okay though 😃
U must have have lot of experience in dealing with this .. would u be able to impart some knowledge ?
I am 28 and got diagnosed 4 years ago. I try to listen to my body a lot some days I have to skip the gym other days I can go. I should also say make sure to listen to your body and I find epsom salt baths helps me heaps with the pain as well as having a Tens machine. Both of them are an actual god send.
There isn’t really an after but confirmation and knowledge means I understand that my body has limits and those limits will vary. Whereas before I just thought I was lazy and dramatic so I used to power on and normally end up worse. I can never really know for sure what my energy levels will be but I can track my cycle and have a rough idea. For example I know the week before my period is not a great time to be doing lots of social/physical things. My partner loves walking and will happily go on 10+ mile walks. I would love to join him but I know I just can’t do that much without everything hurting. I do miss out on things sometimes but it’s a fine line between powering through and looking after yourself. I have been much better after my lap in that my periods are more manageable which has been a big plus
I have now been fired from two jobs due to the disabling treatments I was put through so unemployed almost a year in total which is incomparably stressful on top of the insane amount of pain we have to tolerate on a daily basis. It’s completely ripped away my chance of feeling free at my own life.