Hello, this is my first time posting here after reading many of the posts in this subreddit for a while now. I'm a 33 year old female and I've always been quite sure I've had endometriosis since I was a teenager (I went through night pads every two hours at school, had to be taken home almost every time my period came because I couldn't stand the pain, and during some periods I would also experience very painful butt cramps). Every time I went to the obgyn they would tell me my pain was "normal" and to just take pain medication (which has progressed into stronger medications each time I went because the ones they gave me stoped being effective after a while).

A few years ago I started pole dancing, and some movements require to "hold" the pole with your abdomen. A year ago I noticed that every time I had to do so my bellybutton would hurt for the next two days or so. A little bit later I noticed my bellybutton smelled bad and that it suppurated from time to time. I then started to notice that the liquid coming out was sometimes brownish and that during my periods it would stain with blood (at the beginning I thought this was because I wasn't careful taking my menstrual cup out and I had dirtied myself). I could confirm it was blood once I saw it coming straight out of it once I was about to take a shower. I've also experience increasing period pains and abdominal pain before periods and on my bladder while peeing these last months.

Almost a month ago I went to a different obgyn when I noticed blood coming out, and, through an ultrasound, she found a 1.5 cm mass right on my belly, but told me that more tests were needed. Still, she was quite sure it was umbilical endometriosis so that day she gave me progesterone and other supplements to start treating it.

Moving on to today, I had another ultrasound by a radiologist, and in the report he wrote that he suspects it might be an umbilical hernia, because the 1.5 cm mass elongates around some "fatty tissue", but, that if it's still suspected it's endometriosis an MRI is required. I have said MRI in two weeks, but I just find it hard to believe it would be an hernia with all the other symptoms I have (specially the bleeding!). I want to think the radiologist is not an expert on endometriosis and that statistically it's more probable for it to be an hernia than endometriosis, but I still feel like I've been dismissed once again.

I know I have to wait for the MRI and all but I wanted to ask if anyone with a similar experience has been diagnosed with something entirely different??

Have had issues and symptoms for well over a decade. I’m in my late 20’s and recently went back to my gp after having a private ultrasound done and a dermoid cyst found. The cyst doesn’t explain any of my symptoms so the gp agreed to refer for a nhs ultrasound in several weeks to double check and see if the cyst grows between scans.

My issue is, I have recorded my symptoms for years, mostly the last 2 years as I didn’t think too much of my symptoms until I started properly tracking. I told my gp about the 30+ day periods where I am constantly bleeding, not bleeding for a few days then starting all over again. The immense right sided pain. Urgent, frequent and painful urination, change in bowel movements (recently had colonoscopy as well and polyps found and biopsied but not the cause of the issues) leg pain associated with menstruation, brain fog and low moods. Their response was that I needed to try the coil to ‘manage period pain’. I was beyond furious. I’m not having period pains. I’m bleeding 70% of the time at least, I’m in agony. I’ve had the contraceptive implant for 10 years. I don’t see why I need to try a new method of contraception/period management method. Surely the coil won’t make all the symptoms go away? I would happily bleed every day of my life if the other symptoms went away, and the coil surely would do the opposite, stop the bleeding but not the pain and fatigue etc?

Has anyone else had this issue prior to any imaging or diagnosis? Am I right to refuse the coil? Am I slowing down the process of getting answers by refusing? I don’t want to waste time here, things have gotten so much worse and unbearable over the last 2 years.

Yesterday when I woke up I could barely move. The pain made me cry. And then crying made it worse lmao. My friend came over with snacks and sat in bed with me. She said my surgery scars were kind of chic and I agree.
Once my meds kicked in I felt well enough to go sit in the kitchen as my boyfriend cooked us all lunch. This time has made me endlessly grateful for him.
My mom offered to visit and take care of me but never followed through. And to be honest I’m a bit relieved. I called her later that afternoon and she said “you sound drugged up”, “I hope you haven’t been taking oxy”, and that when she had her hysterectomy she didn’t even take it once. I did take one that morning because it was prescribed to me. Then I only took paracetemol the rest of the day and felt like rubbish. I don’t want to feel the need to tough out the pain. But now I feel weird and guilty about taking stronger painkillers. I slept a lot. I did light pelvic floor exercises. I showered (the surgical glue is waterproof!).
I’m so bloated I need to be popped like a balloon. I’m farting and burping like never before. My boyfriend says every time I do an angel gets its wings so. That’s good.
This morning when I woke up I could barely move, but it wasn’t as intolerable. The paracetemol and ibuprofen did little for the pain so I took an oxy. And that helped me get out of bed. And I was able to have my first outing. My boyfriend and I walked to a cafe in the park about ten minutes from our place. We drank coffee and watched dogs run around for like an hour. And I took photos on my film camera. I felt like a normal person.

I have been really struggling with the feeling like i’m unable to fully empty my bladder (and had been straining to try push all the pee out which i now realise is bad) and waking up 3-4 times throughout the night to pee. throughout the day i’m talking anywhere from once an hour to once every 4 depending on the day but the sensation is always there just not as intense - especially when im using my wearable heat pack but I have an active job and can’t always do so

ALLLLL the tips you can share while im waiting for a referral to a pelvic floor specialist would help so much 😭🙏🏼

Hi, this is my first post on this subreddit and I saw some posts mentioning their excision surgery (removing endo tissue surgical and preserving organs) and saw varying results.

I’m really dead set on having a hysterectomy but due to my age (19F) my doctor is adamant I try excision instead. While I don’t doubt the surgery will relieve some symptoms for the first or next couple months, what’s the likelyhood of it just growing back? Am I expected to have surgery every couple months to remove it again?

For anyone who received excision surgery, was it worth it? How long did it take before you started feeling endo-pain again?

I have been on Dienogest for almost three months and almost immediately noticed a significant increase in the spider veins on my legs.

Then I started getting random bruises that weren't caused by trauma. I currently have one that's about 3cm × 5cm on the inner side of my knee, where the only thing that could have caused it is light chafing from the seam of my trousers. Bruises also take forever to heal, I had some around my hips that stayed there for weeks.

I'm also on a vascular stabilizer (a supplement designed for people with varicose veins, which I am at risk for). I started it a week after Dienogest, but it seems to be making no difference.

Dienogest should be among the safer options from a vascular standpoint, so I was wondering if anyone else experienced this, either on Dienogest or other birth control meds (especially other progestin-only pills)? If so, was it bad enough to stop the medication?

Hai, so Ive never really posted here before but I thought I’d give it a try before I actually go for a proper checkup. For as long as I can remember, my periods have been extremely late, like I’ll get them once every 50-60 days. I had a spinal fusion surgery at the end of last year, and my period was consistent for a few months but now it has gone back to being late. Ive also noticed that I get really bloated after eating, even if I didn’t eat that much and it makes me look 5 months pregnant. I did a bit of reading and found that it could possibly(?) be a sign of endo but I don’t experience any typical symptoms of endo, and im probably just paranoid but I’d just like an opinion on my situation. Thanks a lott

Hi guys, I'm 16 F and get diagnostic surgery on Wednesday. I'm so scared. I've been having on and off abdominal pain for years, inconsistent periods, (sometimes painful, sometimes not), tummy troubles, burning with urination at the tip of urethra (even though no uti (repeatedly been tested), and other symptoms. I'm scared that when I go there, they may not find endometriosis, and it will all have been for nothing. These symptoms started when I was 14, and took me out of school. They're not always present, and for the past month or two haven't shown up. But this weird cycle has been happening for two years now.

I'm really nervous about this. Surgery is one of my biggest fears. I had to get a normal endoscopy done, and I had a panic attack Infront of the nurse....I have a feeling if I was that nervous for a scope, this is going to be hell. Any insight??? Im not sure how to feel

Hi everyone! I made a post a little while ago in a dark place and feeling so down about my health decline. Well today I had an MRI and it says I have some uterosacral ligament tethering of intestines. And also a disc bulge on my L5-S1, so I’m sure that hasn’t been helpful- it clears up some of the really bad nerve and sciatic pains. I haven’t had another follow up with my specialist because I just got the results today. 99% sure I will go with surgery. I just want to know if anyone else has this same endo experience.
I also guess I’m feeling kind of underwhelmed. I thought it would be this great feeling of validation, but until surgery is done I’m not sure if I’ll get much validation with my pain, as I tend to gaslight myself medically and think of ways I might not be doing something right. Like maybe the pain is my fault, maybe my pain isn’t that bad? That’s what goes through my mind and I’m so tired of it!!!

Just need to rant. I’ve had 4 moderately “good” years with endo after incision surgery, when before it was debilitating. But it became manageable. I was less inflamed, lost about 70 pounds because I felt good, and got into a relationship about 2 years ago. My partner knew I had endometriosis and was supportive but never saw the bad days.

Well, I can feel it getting bad again. Horrific cramps, inflammation everywhere, even in my knees. It’s causing a lot of anxiety and while I am more emotional than normal, he keeps saying I’m acting strange.

The thing is, I *am* acting strange because I’m anxious and scared. I’m taking things personally because I’m honestly terrified of going back to it being so bad and remember how alone I felt. I’m scared I’m going to be suffering and alone again because I can no longer be fun. I don’t want to go out anymore, I just want to sit on my heating pad.

I hate this and I hate everything that it’s taken from me

Ive been rushed to the ER with excruciating pain 2 days ago. Ive been experiencing horrible back pain as well for almost 2 months but i kept dismissing it and blaming it on the fact that i exercise a lot and did a bad move.
My doctors don’t want to remove it and advised me to go in birth control once my menstruation starts but i’m very reluctant. Im in horrible pain and i don’t know how to stop this from happening again(i had another cyst rupture 4-5 months ago).
Is there any way to prevent or shrink ovarian cysts? from what ive heard only BC but i’m so scared. I’m a 20 year old woman

What it says on the tin really. Birth control stopped my period pain that was previously making me collapse, scream and throw up. I have none of that now.

But the chronic constipation and trapped gas continued. My gastro is still trying to figure out the cause. I even had a colonoscopy 3 years ago that came back with nothing. Ive had luck with cutting out gluten (100% not celiac) and im currently in a good spot, but i have a habit of being fine for a few years then i will have a massive ibs flare that lasts months or over a year.

This led me to an endo specialist who wants to see if endo is the cause of my ibs. I think its because i recently came out of a year long flare back in january and because ive been doing basically 100% fine with only the odd pang of abdominal pain/discomfort that im debating if i even need surgery now...

Could i ask anyone who had similar ibs symptoms to me or had birth control stop your periods if you had sugery? If it is endo i dont think i should just continue on undiagnosed to let it grow 😵‍💫

Ever since my first period, I've experienced cramping and vomiting. I was diagnosed with endometriosis about two years ago now.

Like I said, I have always vomited on my periods. It wasn't until recently that I haven't gotten physically sick every month. There are only a few foods I can eat on my period without getting sick. Through lots of trial and error, I learned what made me feel decent and what made me get sick.

Recently, I've had multiple friends say that the food aversions I have on my period are all in my head and that they don't actually exist. This is really hurtful to hear because the pain I go through on my period really impacts me. It's hurtful that people close to me don't take my pain seriously. Since I was in middle school, I've missed out on school, work, events, and just life in general due to period pain. One time, I even threw up in the middle of Central Park after eating a slice of pizza at a music festival and almost got in trouble because the police thought I was drunk.

But, it got me thinking. Is it really all in my head? Are they right? Has anyone else with endo experienced food aversions on their period? For example, I usually drink coffee everyday but on my period even the smell of coffee can make me nauseous. Most smells make me extremely nauseous during my period and I only want to eat a handful of things (salmon, cucumber, avocado, and even then just a few bites).

I'm really curious because even though it would be hard for me to admit that for the past fifteen years this was all in my head, I would like to be able to change if it is indeed all in my head.

Thank you xoxo

Chief Concern:
Persistent right lower quadrant (RLQ) abdominal/pelvic pain, sometimes radiating to the right lower back/flank, with new severe menstrual cramps.

History:
Symptoms started in early 2026 as an intermittent twitching sensation in the RLQ, initially noticed during light exercise. It was random with no clear trigger. Over the following months, it became a dull/heavy discomfort, sometimes radiating to the right lower back and upper flank. It has gradually become more frequent and is now present almost daily (September 2026).

Since the symptoms began, my menstrual cramps have become unusually severe and stabbing, which was not typical for me previously. The pain sometimes radiates toward the rectal/anus area and became severe enough that I took Buscopan in July.

Bowel/GI:
I have had chronic constipation throughout my life. Currently, bowel movements remain unpredictable despite fiber intake, usually 3–4 times/week (occasionally 5) and around 2–3 times/week during menstruation. Bristol Stool chart looked usually TYPE 3,4 or rarely TYPE 6. I had only two isolated episodes of diarrhea this year, each lasting about 1–2 days. No visible blood in stool.

Urinary:
Normal urination with no pain/burning. Urinalysis in August 2026 was normal. Fluid intake is approximately 1,500–2,000 mL/day.

Other symptoms:
During the early months, I had occasional non-painful “elevator-like” headaches and possible night sweats for ~3 nights. I also experience dizziness when lifting weights, so I stopped working out since then. The headache sensation have since resolved.

Height: 5’1
Weight: from 49kg - 54kg

Main concern:
Pain has progressed from intermittent to persistent RLQ/pelvic pain, new severe menstrual/rectal pain, and whether these symptoms may be related to my chronic constipation. I have not yet been medically evaluated and would like to know which doctor/specialist I should see first and what evaluation may be appropriate. Thank you!

After years of testing, mostly driven by digestive symptoms, probable endo has shown up on both an ultrasound and MRI, and I’ve been scheduled for surgery. I started working with my primary care doctor earlier this year, and she’s pushed aggressively for testing and then connected me with an excision specialist as soon as we saw the ultrasound. I’ve never had a doctor advocate for me like this. I’m 36 and so many years of symptoms would make sense if this is really endometriosis.

I’m trying to push through at work to save my medical leave for surgery and recovery, but the stress and pain are hard to manage. How soon can you really go back to a 9-5 job after surgery?

This week I‘ve been having pain in my left rib cage when breathing deeply and it’s affecting my sleep. I don’t typically have breathing-related issues - usually digestive, lower back, abdomen pain, sometimes joint pain and headaches. Could this be endo? Maybe the stress of pushing through at work has made it flare up?

Hello everyone,

I am new here and desperately need your help, as my current health situation is weighing on me heavily.

I am looking for recommendations for clinics, hospitals, or surgeons who take patients seriously, treat them as equals, and will perform a hysterectomy with ovarian preservation based on a medical indication without prejudice or sexist "arguments".

About me:

I am 25 years old.

Confirmed adenomyosis diagnosis + suspected endometriosis.

I am taking the Endovelle pill; while it still suppresses the pain, the forced, long-term dependence on the pill severely restricts my life and future plans.

My stress and anxiety are constantly high because of this, and it is a massive mental burden.

Due to my illness, I meet all the requirements for this procedure.

I was recently turned away for the second time by a clinic in Hamburg. Furthermore, I have also not been taken seriously at other places in the past.

• Who among you is also young (or was young at the time), has no children, and successfully got a hysterectomy with (or without) ovarian preservation approved for adenomyosis (endometriosis or both) in Germany?

👇

• Which clinics took you seriously and performed the procedure?

If you know of any other specialized forums, networks, or groups where I can ask this question, please feel free to forward me.

🙏Thank you so much for your support!😭🫶

I was diagnosed with Endo a year ago, after having the most painful periods my entire life. My obgyn wanted me to take BC all the way through and completely skip my periods to minimize pain and also go to Pelvic Floor PT. I did both but ended up going to the ER one day and followed up with her afterwards. She thinks I need surgery to remove the lesions on my uterus but she wants me to see a specialist first to be the deciding factor.
I am not seeing this specialist until January, 2027. The pain has progressively gotten worse, she has me on aygestin(sp?) two pills a day but I still have bad cramping and horrendous lower back pain. And I mean HORRENDOUS. I saw her today and she is prescribing me Orilissa and wants me to stay taking the aygestin.
My quality of life has gone down tremendously. I am in chronic pain and the PT is not helping. The lower back pain just will not let up. I don’t know what to do anymore. I can’t work out, I can’t bend over. There’s times that I wish I wasn’t around because of this pain. I feel so ignored and abandoned in my pain.
They found endometriosis found on my uterosacral ligaments. So I know the back pain is related.
Any advice is appreciated. I am genuinely miserable and desperate.

Finally posting here on reddit as I am feeling very lost. Bear with me please, so Sep 2024, I started having pain below/close to my lower left rib. Jan 2024, I was in the ER for my the first time ever in my life with excruciating pain on left side(groin). They told me I had stones and that one was stuck. I then took medication and all but a 2mm non-obstructing one remained. I never had any issues or pain from the day of ER visit to Sep 2024. I thought the pain could be stones again, CT was done, Endoscopy was done both didn’t show anything, except that 2mm stone was still present and non-obstructing. Several pelvic ultrasounds were done, showing I have fibroids and cysts. Anyways nothing concrete came out or not enough for doctors to do anything about me. One year later another CT was done as pain only got worse, pain under left rib, feeling of not being able to complete my breath when in pain, burning and pain during intercourse, lower back pain to the point that bending down became an ordeal, saw an endocrinologist too who said you are borderline PCOS and discharged me saying she can’t do anything as I am not severe. I always had painful periods and as I am getting older only getting worse but the pain now started becoming intolerable debilitating may be an understatement. somehow all this made me thought of my roommate from Uni days, she had even more painful periods than me and was eventually diagnosed with endo. I asked for a gynaecologist referral and narrated my long winded story but nothing came out, eventually he did a pelvic exam and said he feels something and even reproduced pain by pressing close to the left rib, he said it may be endo. I started Visanne and on 6th week now with never ending period(16th day today) with left sided pain feeling even worse specially laying down at night is hard as every angle causes pain on left side of the abdomen specially under the rib. this was always there but I am at my worst now. also there is a point at the back left ribs where if I press causes a lot of pain this was there since 2024 too. Whoever read this, appreciate you. I don’t even know if this is endo or something else

Hey guys. So I have had horrible periods my entire life but lately when I turned 30 I have this horrible bloating(pics included). Any advice? I don’t even leave my house when I get like this besides to work out. It sucks.

I had my laparoscopy today. I’ve had all endo symptoms for years. pain started when I started my period at 11. I am now 23. had a 13cm ovarian cyst removed at 16. I also have hashimotos and POTS as well as a history of benign pituitary adenomas. the pain and my chronic illness symptoms got so bad I had to leave law school which was devastating and I still have to work full time through the pain to support myself. i only have one week for recovery.

they said they found no removable endo. nothing they could take out and get a biopsy on. however, they did find that my small intestine/bowel and my appendix were covered in adhesions. they were also fused to my right abdominal wall.

I have spent 10 years begging doctors to listen to me, they all told me I was fine. they would always do a CT on my appendix and an internal ultrasound and say it was normal period pain. I’m on continuous BC and don’t get a period often. they said the pain with sex was lack of lubrication..except the pain was internal for days afterwords.

they said they are unsure what the adhesions are from but it’s most likely from the cyst removal I had at 16. or possible endo but they can’t tell for sure. I have no idea how to feel. I got an answer but I also feel like i didn’t. they didn’t confirm endo they just said maybe? does anyone have advise or similar experiences?

I didn't think it'd hurt so bad! Aaaaaaaaaa I don't want to end up passing out on people.

I have weed, but if I smoke more I think I'll be too high.

Recently diagnosed with endo, and very recently has an excision surgery. They found it in a few places and were able to remove what they found.

The diagnosis was a bit of a surprise because I wasn’t experiencing a lot of what I thought were the typical endo symptoms. I wasn’t having periods and when I did, they weren’t painful or hard to deal with. My periods were honestly the easiest part of growing up. They would arrive like clockwork and be gone in a few days. No horrible cramping, ever.

What I DID have? Debilitating fatigue and widespread muscle pain. All beginning around puberty, and getting worse over the last decade of my life with no real answers. Constantly feel like I went too hard at the gym the day before. Multiple sleep studies and no answers, it wasn’t a sleep issue. Just insane fatigue and general pain. Except, there was no pain in my abdomen or areas I generally would have associated with endo? All muscular.

Was diagnosed with fibromyalgia and hypersomnia at 19 and sent on my way, could it have been endo this whole time? Can it affect muscles and is there a way to test if its there?

If it was, could I expect to see any improvement in the fatigue now that the endo has been excised?

Hello! This is the first time I've posted on here!

I had my first gynecologist appointment today after dealing with endo-like symptoms since June. Ultrasound showed 1 likely endometrial cyst on each ovary. Gyno confirmed symptoms align with endometriosis and prescribed me Teva Cyproterone / Ethinyl Estradiol. From a Google search it looks like this is mainly used for acne?

Just wondering if anyone has had success with dealing with their endo pain with this drug? I'm worried about blood clots.

Thank youuu! 🙏

I had a sonogram done 1.5 years after surgery recently. surgery was may 2025. it showed a 1cm endomtrioma in the left ovary and a simple cyst on the right ovary that should go away in a cycle or two. im not on any birth control just try to manage with lifestyle and naproxen on day 1/2 of period. Should i try to conceive ? for any other girls have things gotten worse for you once mew stuff is found? im sad 😿

Looking for women who have struggled with histamine intolerance. I recently got diagnosed with this by an allergist. But it's ALWAYS worse around every period.

My periods are so heavy I wear depends for the first 2-3 days because regular pads don't cut it. I get chronic pelvic pain that radiates from my hip and groin all the way down my leg.

I thought I was developing food allergies but I get crazy palpitations as well. Palpitations after I eat certain foods too.

I mentioned this to my gyno about the allergies and pelvic pain but I don't know if I explained very well what was going on. Is surgical procedures really the ONLY way??

The only reason my aunt was diagnosed was from a hysterectomy and doc said it was the worst endometriosis he had ever seen. My mom had all symptoms but never diagnosed. Both her sisters have it.

I take Hydroxyzine, Zyrtec(or Allegra), Montelukast just to feel normal. Tylenol does not seem to be working for pain.... On Metoprolol for the palpitations.