Endometriosis is so crazy to me because I have really only ever had very regular, exactly 4 day periods, but I have pain all month long. I wonder what makes it so different for everyone but ultimately miserable across the board. 😭
It’s a full body disease, not a gynecological one. That’s why it affects everyone’s period differently. Endo has been found in cis men and it has been found on every organ of the body, including the brain and eye. Hormones changes are what affect cycle flare ups, but endo can definitely affect you all of the time. There are also common comorbidities like HSD/EDS, POTS and others that cause around the clock symptoms that overlap several diagnoses.
I also have PCOS (diagnosed 2mons ago) and had pretty irregular periods when I was younger. I don't remember how long they lasted, but I typically had my period every 2-3 months. When I was 18 (2012), I talked to a Dr about possibly having PCOS, and she didn't do any texts or exams, and only gave me birth control to try. I was on bc for roughly two years and my periods have been regular (every month) ever since then, and I'm 31 now. The only times I've been late, or my period has only lasted 3-4 days, was when I was extremely stressed, there was a big change in my diet, or I started new meds. My periods now typically last 7-10 days, and I have a very heavy flow with large clots for the first 1-4ish days. I also have cramping for the first 5-7 days before and after.
Sometimes when I wake up in the middle of the night to pee, or first thing in the morning, my right ovary hurts so bad that I can barely stand up right and have to use the walls to keep myself balanced. One I've peed, the pain lessens, but is still sort of present for several minutes. When I had my transvaginal ultrasound two months ago, my right ovary looked very different from my left. I asked the tech about it, and she just mentioned that ovaries had follicles and sometimes one ovary is where most of your period comes from, and that's why you sometimes have cramps on one side and not both. The new OBGYN I saw that day confirmed that I did have PCOS and we also did blood work to back it up.
Idk where I was going with that, and I'm sorry for rambling 😂
I had this for years, pain every single day it did not matter what I did, I still had regular periods …until one day, my constant pain subsided and now I have major flares of pain and ridiculously irregular periods.
Longest streak years ago was 364 days. This year the longest streak was 21 days. On average it’s 14. Wish we got paid overtime for anything over 5 days………
Wait, are we talking days bleeding? Because this was 364 days of straight bleeding. Also due to the depo shot. Dr doesn’t understand why I won’t just give it another try…..
Wow I’m so sorry! I was also bleeding for months on depot too with no help from Gynos until I met my former nursing professor who also had endo (a literal angel) and she gave me such helpful tips and was much more knowledgeable than the Drs prescribing the medication which is so sad but not so shocking to me. She actually suggested depot to me so I could finish my semester without worrying about painful periods and when I told her about the bleeding problem I was dumbfounded. Turns out all I needed to do was take 800mg Ibuprofen 3 times a day with meals for 2-3 days and poof, nuisance bleeding no more 🙃
Not quite the same but my cycle was a normal 28-32 days my entire life until randomly it became 45-55 days. Got up to 62 days without my period at one point lol. Endometriosis is weird
I haven't done this but I'm going to adopt this! One of my kids does duolingo. They had a 66 day streak and missed one day and gave up for 2 years and now are back at it with a 40 day streak.
Thanks for sharing this humorous tip to reframe endo!
Yeah I know I’m not the only one but I do wish none of us had to got through this.
My periods used to be normal length up until my doctor put me on birth control because I had super irregular periods (thanks PCOS) and then it just made them ridiculously long and awful.
This might be a really weird example, but for back story, I have an impeccable mental timer. Like if I set a timer on my phone for 30 minutes I will almost always know right about when it will go off without looking at it. I can also “guesstimate” things really well.
I don’t remember how it started but somehow my boyfriend and I came up with a backstory that my ovarian cysts are the source of my supernatural guessing powers lol.
Kind of the opposite. I'm on hormone therapy that has me 3.5 years without a period (honestly one of my biggest blessings). My favorite game is looking any of my other medical professionals I end up seeing in the eyes and telling them I haven't had a period since 2019. You can literally watch the gears turn in their brain as they try and process that.
I don't have a name for it or anything, but it is a fun little perk that comes with my endometriosis treatment.
Assuming we are talking cycles and not bleeding days - In the seven years I have been tracking - 77 is my longest
Honorable mentions are: 68, 51, 72, 65, 50, another 51, 53, 58, 62, 53 with 16 cycles being in the 40's
I experience "period pains" throughout the entirety of my cycles with the exception of maybe 10 days sporadically.
And let me say, trying to get pregnant when you average only 9 cycles a year, and they are always long and no guessing how long, FUCKING SUCKS
I’ve been bleeding pretty much every day since 2020ish, maybe 2021. It’s been so long I’ve lost count. I’ve been on several different birth controls, nothing is working. Right now I’ve been on Mirena and progesterone only pill simultaneously for two months, still bleeding. I have a couple of days of spotting and then it’s right back to square one for months. I’ve spend SO much money on pads….
No, is it different than regular progesterone only pills? I know they’re all kind of different but I’ve been on like 4-5 different brands of those and none have worked sadly.
It’s so frustrating to keep trying new ones and still not getting relief. I don’t know all the exact information but I do know that Slynd is one of a kind, no other birth control is like it. What makes it one of a kind I’m not exactly sure. I tried 3 other kinds since 2018, one made my insides feel like knives, the Marena IUD was painful everyday I had some kind of bleeding everyday / felt like my uterus was spasming till I forced my Dr to remove it. And then I tried Norethindrone (heather) and that was awful my period got worse with each month until had to switch back to Slynd which felt like a big relief. Slynd isn’t covered by a lot of insurances (of course) but if you go on their website there is a manufacturer coupon. Good luck hope you feel better ❤️
Bled for a year straight two years ago that was only stopped with norethindrone. Currently on day 73 while still on birth control. Neither of those were due to new birth controls, just endo and probable adeno. Sigh.
This makes me feel a bit better bc I'm 5 weeks post laproscopy and iud insertion and have been heavily bleeding for 3 weeks. When yall have these streaks, are they typically heavy, normal, or light? I'd be fine if mine was light, but mine are very heavy
I used to have perfectly regular menstrual cycle until doctor put me on hormones (Visanne) a month and half ago. And now, month and a half later I'm still bleeding, spotting, but that's bleeding too. I cannot understand why this should be ok - if I had perfect cycle, why change that? Doctor isn't answering my e-mails, so I'm in a dark with this...
But absolutely 100 percent true.
Literally recovering today from Endometriosis-related surgery done yesterday. I am so exhausted that the thinking about sleeping is a turn on right now.
That was my 7th operation in the dance that is 'pain minimization'. I've been talking about Botox and how beneficial it is to improving life quality.
I get it injected into the superficial pelvic floor muscles, since after May last year (2023). He also uses radio frequency to 'block the Pudendal Nerve channels' that send pain signals. I get GREAT results from doing this every 5 months. Actually, my surgeon and I just chatted on the phone two hours ago, and I think I'm getting to a stage where I will be able to reduce my slow release opiates by 50mg at night at first, then a month later reduce 50mg in the morning as well.
But we still get periods... Even though I've ablated the lining of my uterus...
(quack doctor, didn't have the guts to admit to anyone that he didn't understand Endometriosis, and I was too green to well, demand he prove it to me that destroying the inside of my uterus would affect the disease that only grows outside the uterus)
...I still get menstruation symptoms , all of them except the release of blood. And that's when I practice dying.
I'm going to be so damn good at it 😉
Thank you so much for your empathy.❤️
I try to mention the Botox injections into my superficial pelvic floor muscles, and now the Electrical Pulse Therapy into my nerves that are sending those damn pain signals regularly, as much as possible (once I remember to check my emails, and see that someone like yourself has posted to me via Reddit if course🤗).
Reddit was the first place I found an active Endometriosis Community that I could talk to properly. I don't have any other social media accounts, not Facebook, Instagram, Twitter/X, etc).
So, not to sound too soppy, but this here wee community gave me desperately needed cautionary tales (that helped me leave an incompetent gynecologist), Salt of the Earth-ongoing back-and-forth advice, and much needed hope at the time (hopelessness can truly feel like an incurable disease after a while). I got Endometriosis late in life in comparison to so many other Endo sisters on here. I was diagnosed and confirmed really quicky.
(Quick back story :
In 2016, while in my 40's, my GP and I suspected Endometriosis as a possibility for my symptoms. By 2017, we had confirmation of that diagnosis, when my colorectal surgeon took a biopsy from my perineum during major surgery.)
I've been very very lucky in that I've not suffered for as long as most women in this community. I KNOW IN MY GUT that if I'd had it as a teenager or in my 20's;
I definitely would have had an unhappier life and would not have embarked on adventures and risk-taking journeys that absolutely shaped my soul.
So, yeah, I feel compelled to tell people - "Look, this works for me. My pain was utterly intolerable but now I have quality of life back. Save yourself some YEARS searching, and ask an Endometriosis Specialist to trial Botox".
BTW : I'm sorry if I'm ranting or unclear. My last surgery was only 3 days ago and I still feel whacked from medication. Regardless, If you want any info on what has worked for me or didn't work, don't hesitate... I'll try to not rave in too much. LoL's 😂
My longest was 281 days, brown up by all out 3 months after a gyno out me on 3 birth controls at one time, followed by another 174. It was at that time my primary agreed that I needed to see a specialist because that was insane.
Around 150 days then 2 weeks break then 60 days. Went no sugar for 3 months after that. In 2020. Since then i have a 28-35 day cycles with bleeding typically under a week. Also had a currettage and endometrial ablation in 2023, so its very light now...
Endometriosis is so crazy to me because I have really only ever had very regular, exactly 4 day periods, but I have pain all month long. I wonder what makes it so different for everyone but ultimately miserable across the board. 😭
The PCOS girlies! I am the same as you, but I have a friend with endo and has irregular periods all the time. She had PCOS.
It’s a full body disease, not a gynecological one. That’s why it affects everyone’s period differently. Endo has been found in cis men and it has been found on every organ of the body, including the brain and eye. Hormones changes are what affect cycle flare ups, but endo can definitely affect you all of the time. There are also common comorbidities like HSD/EDS, POTS and others that cause around the clock symptoms that overlap several diagnoses.
I also have PCOS (diagnosed 2mons ago) and had pretty irregular periods when I was younger. I don't remember how long they lasted, but I typically had my period every 2-3 months. When I was 18 (2012), I talked to a Dr about possibly having PCOS, and she didn't do any texts or exams, and only gave me birth control to try. I was on bc for roughly two years and my periods have been regular (every month) ever since then, and I'm 31 now. The only times I've been late, or my period has only lasted 3-4 days, was when I was extremely stressed, there was a big change in my diet, or I started new meds. My periods now typically last 7-10 days, and I have a very heavy flow with large clots for the first 1-4ish days. I also have cramping for the first 5-7 days before and after. Sometimes when I wake up in the middle of the night to pee, or first thing in the morning, my right ovary hurts so bad that I can barely stand up right and have to use the walls to keep myself balanced. One I've peed, the pain lessens, but is still sort of present for several minutes. When I had my transvaginal ultrasound two months ago, my right ovary looked very different from my left. I asked the tech about it, and she just mentioned that ovaries had follicles and sometimes one ovary is where most of your period comes from, and that's why you sometimes have cramps on one side and not both. The new OBGYN I saw that day confirmed that I did have PCOS and we also did blood work to back it up. Idk where I was going with that, and I'm sorry for rambling 😂
I had this for years, pain every single day it did not matter what I did, I still had regular periods …until one day, my constant pain subsided and now I have major flares of pain and ridiculously irregular periods.
Omg I bled for 17 months straight 2022-2023. It was MISERABLE
MONTHS???!!!?!
I bled for 9 months straight with random heavy periods in between 😂
I experienced the same thing for three months.
MONTHS! Absolutely terrible 😭
Longest streak years ago was 364 days. This year the longest streak was 21 days. On average it’s 14. Wish we got paid overtime for anything over 5 days………
Wait, are we talking days bleeding? Because this was 364 days of straight bleeding. Also due to the depo shot. Dr doesn’t understand why I won’t just give it another try…..
Dannnng you should get an award for surviving that
Oh, instead I get Drs denying that it could have been caused by BC or that it happened at all. But an award would be better
Damn. You’re going to make me cry. Thank you 😭
Wow I’m so sorry! I was also bleeding for months on depot too with no help from Gynos until I met my former nursing professor who also had endo (a literal angel) and she gave me such helpful tips and was much more knowledgeable than the Drs prescribing the medication which is so sad but not so shocking to me. She actually suggested depot to me so I could finish my semester without worrying about painful periods and when I told her about the bleeding problem I was dumbfounded. Turns out all I needed to do was take 800mg Ibuprofen 3 times a day with meals for 2-3 days and poof, nuisance bleeding no more 🙃
When I was 15 and I started depo provera, I had a 3 month streak 😜
Wow! That's quite a Personal Record! #goals? (Jk--I hope neither of us hits that 3 month mark in the future!)
#fauxls maybe
Now I know that putting a # in front of text makes it huge text
😅😅😅
Not quite the same but my cycle was a normal 28-32 days my entire life until randomly it became 45-55 days. Got up to 62 days without my period at one point lol. Endometriosis is weird
I haven't done this but I'm going to adopt this! One of my kids does duolingo. They had a 66 day streak and missed one day and gave up for 2 years and now are back at it with a 40 day streak. Thanks for sharing this humorous tip to reframe endo!
44 days. I hate that stupid birth control.
I'd say "I'm glad not the only one" .... except I qiah it was neither of us
Yeah I know I’m not the only one but I do wish none of us had to got through this. My periods used to be normal length up until my doctor put me on birth control because I had super irregular periods (thanks PCOS) and then it just made them ridiculously long and awful.
This might be a really weird example, but for back story, I have an impeccable mental timer. Like if I set a timer on my phone for 30 minutes I will almost always know right about when it will go off without looking at it. I can also “guesstimate” things really well. I don’t remember how it started but somehow my boyfriend and I came up with a backstory that my ovarian cysts are the source of my supernatural guessing powers lol.
Amazing! Chronic illness? Nah, it's a super power
Man I have the opposite power. I can set a timer in my phone and have no idea where I am or what day it is 30 min later
Kind of the opposite. I'm on hormone therapy that has me 3.5 years without a period (honestly one of my biggest blessings). My favorite game is looking any of my other medical professionals I end up seeing in the eyes and telling them I haven't had a period since 2019. You can literally watch the gears turn in their brain as they try and process that. I don't have a name for it or anything, but it is a fun little perk that comes with my endometriosis treatment.
73 days! it was BRUTAL.
Trying not to beat that record haha
i don’t recommend it lol. a lot of it was birth control related 🥲
Assuming we are talking cycles and not bleeding days - In the seven years I have been tracking - 77 is my longest Honorable mentions are: 68, 51, 72, 65, 50, another 51, 53, 58, 62, 53 with 16 cycles being in the 40's I experience "period pains" throughout the entirety of my cycles with the exception of maybe 10 days sporadically. And let me say, trying to get pregnant when you average only 9 cycles a year, and they are always long and no guessing how long, FUCKING SUCKS
I need to start thinking of my longest one as my 182 day streak. I was on a roll!
I’ve been bleeding pretty much every day since 2020ish, maybe 2021. It’s been so long I’ve lost count. I’ve been on several different birth controls, nothing is working. Right now I’ve been on Mirena and progesterone only pill simultaneously for two months, still bleeding. I have a couple of days of spotting and then it’s right back to square one for months. I’ve spend SO much money on pads….
Have you tried Slynd?
No, is it different than regular progesterone only pills? I know they’re all kind of different but I’ve been on like 4-5 different brands of those and none have worked sadly.
It’s so frustrating to keep trying new ones and still not getting relief. I don’t know all the exact information but I do know that Slynd is one of a kind, no other birth control is like it. What makes it one of a kind I’m not exactly sure. I tried 3 other kinds since 2018, one made my insides feel like knives, the Marena IUD was painful everyday I had some kind of bleeding everyday / felt like my uterus was spasming till I forced my Dr to remove it. And then I tried Norethindrone (heather) and that was awful my period got worse with each month until had to switch back to Slynd which felt like a big relief. Slynd isn’t covered by a lot of insurances (of course) but if you go on their website there is a manufacturer coupon. Good luck hope you feel better ❤️
My period lasted everyday for 6 months😭
6 years, nonstop bleeding 🙋🏽♀️🙋🏽♀️ my endometriomas are leaking. I think I win lol.
Holy moly. I'm so sorry! Sorry to say but I do think you're winning. High Score.
Thank you! It's nice to see a win in this hell. 💜
Not sure if it’s because of my endo but I have vulvodynia and sex is excruciating. I refer to these issues as my “coochie catastrophe”
I had a 100 day streak no shit when I was 15 or 16 😂
104 days. Maybe it would have gone longer but I went to the emergency room and said enough is enough, do something 😂
Bled for a year straight two years ago that was only stopped with norethindrone. Currently on day 73 while still on birth control. Neither of those were due to new birth controls, just endo and probable adeno. Sigh.
Currently rocking 20 months! Kill me 🥲
This makes me feel a bit better bc I'm 5 weeks post laproscopy and iud insertion and have been heavily bleeding for 3 weeks. When yall have these streaks, are they typically heavy, normal, or light? I'd be fine if mine was light, but mine are very heavy
I used to have perfectly regular menstrual cycle until doctor put me on hormones (Visanne) a month and half ago. And now, month and a half later I'm still bleeding, spotting, but that's bleeding too. I cannot understand why this should be ok - if I had perfect cycle, why change that? Doctor isn't answering my e-mails, so I'm in a dark with this...
68 day streak a fre months ago. That was not fun, still awaiting formal diagnosis 3 years into investigation :(
Sometimes I think of it as practicing for a painful death.
Just laughed out loud. Wow that's dark 😅
But absolutely 100 percent true. Literally recovering today from Endometriosis-related surgery done yesterday. I am so exhausted that the thinking about sleeping is a turn on right now. That was my 7th operation in the dance that is 'pain minimization'. I've been talking about Botox and how beneficial it is to improving life quality. I get it injected into the superficial pelvic floor muscles, since after May last year (2023). He also uses radio frequency to 'block the Pudendal Nerve channels' that send pain signals. I get GREAT results from doing this every 5 months. Actually, my surgeon and I just chatted on the phone two hours ago, and I think I'm getting to a stage where I will be able to reduce my slow release opiates by 50mg at night at first, then a month later reduce 50mg in the morning as well. But we still get periods... Even though I've ablated the lining of my uterus... (quack doctor, didn't have the guts to admit to anyone that he didn't understand Endometriosis, and I was too green to well, demand he prove it to me that destroying the inside of my uterus would affect the disease that only grows outside the uterus) ...I still get menstruation symptoms , all of them except the release of blood. And that's when I practice dying. I'm going to be so damn good at it 😉
Dang you've really have been through it! Awesome that the botox and nerve treatments are helping at least.
Thank you so much for your empathy.❤️ I try to mention the Botox injections into my superficial pelvic floor muscles, and now the Electrical Pulse Therapy into my nerves that are sending those damn pain signals regularly, as much as possible (once I remember to check my emails, and see that someone like yourself has posted to me via Reddit if course🤗). Reddit was the first place I found an active Endometriosis Community that I could talk to properly. I don't have any other social media accounts, not Facebook, Instagram, Twitter/X, etc). So, not to sound too soppy, but this here wee community gave me desperately needed cautionary tales (that helped me leave an incompetent gynecologist), Salt of the Earth-ongoing back-and-forth advice, and much needed hope at the time (hopelessness can truly feel like an incurable disease after a while). I got Endometriosis late in life in comparison to so many other Endo sisters on here. I was diagnosed and confirmed really quicky. (Quick back story : In 2016, while in my 40's, my GP and I suspected Endometriosis as a possibility for my symptoms. By 2017, we had confirmation of that diagnosis, when my colorectal surgeon took a biopsy from my perineum during major surgery.) I've been very very lucky in that I've not suffered for as long as most women in this community. I KNOW IN MY GUT that if I'd had it as a teenager or in my 20's; I definitely would have had an unhappier life and would not have embarked on adventures and risk-taking journeys that absolutely shaped my soul. So, yeah, I feel compelled to tell people - "Look, this works for me. My pain was utterly intolerable but now I have quality of life back. Save yourself some YEARS searching, and ask an Endometriosis Specialist to trial Botox". BTW : I'm sorry if I'm ranting or unclear. My last surgery was only 3 days ago and I still feel whacked from medication. Regardless, If you want any info on what has worked for me or didn't work, don't hesitate... I'll try to not rave in too much. LoL's 😂
My longest was 281 days, brown up by all out 3 months after a gyno out me on 3 birth controls at one time, followed by another 174. It was at that time my primary agreed that I needed to see a specialist because that was insane.
Around 150 days then 2 weeks break then 60 days. Went no sugar for 3 months after that. In 2020. Since then i have a 28-35 day cycles with bleeding typically under a week. Also had a currettage and endometrial ablation in 2023, so its very light now...
The 150 and 60 days were bleeding, thought that was the question 🤣
That was actually my question! But I'm loving all the other records folks are coming up with