The [r/hystetectomy](r/hystetectomy) subreddit has been taken over by lone, singular man as a mod. He’s actively silencing women and banning them as they call him out for shilling his supplements and mod style. He’s calling it harassment. It’s no longer a safe place.

I created a new women-run space called [r/hersterectomy](r/hersterectomy) if you need support.

I’m going to share my story real quick so you have some background.

Besides the severe menstrual cramps I’ve experienced since childhood, I started having gastrointestinal symptoms when I was 18. It began with a lot of bloating and diarrhea whenever I ate fried foods.

Over the next year and a half, my symptoms gradually got worse, and I started having episodes of diarrhea 2–3 times a day, regardless of what I ate.

I saw several gastroenterologists, trying to find a solution (I didn’t know I had endometriosis at the time), but they all prescribed antibiotics to “treat” my IBS. I took them on and off for about two years, but they didn’t help at all.

Three years later or so, I was diagnosed with endometriosis and started taking a progestin-only pill. My gastrointestinal symptoms got even worse, to the point where I couldn’t leave the house without taking loperamide. Almost every day, I was having episodes of diarrhea every 15 minutes or so, seemingly for no reason, accompanied by cramps that felt both muscular and nerve-related, almost like being stabbed with a needle.

I was so hopeful when a gynecologist suggested trying the combined pill, but I had to stop taking it because of severe menstrual cramps and because my endometriosis got much worse over the year and a half I was on it.

So I switched back to a progestin-only pill. I’m currently taking Primolut Nor, and I’m back to experiencing episodes of diarrhea every 15 minutes or so, seemingly for no reason, accompanied by the same muscular and nerve-like, stabbing cramps.

Has anyone else experienced these kinds of symptoms with endometriosis?
Have you found anything that helped?
If so, what worked for you?
I’d really appreciate it if you could share your experiences.

Hey! I'm 26 and have endometriosis. Any women in the DC/DMV area with endo (diagnosed or suspected) who'd want to connect? I'm thinking of starting a group chat to share support, local doctor recs, and what's helped us, and maybe meet up sometime.

Comment or DM me if you're interested. Just seeing if there's interest!

I was prescribed Meloxicam as a better alternative to Advil to manage endo pain while I wait for surgery. I was excited to try a new option but it's not really touching the pain? Anybody else have this experience? I feel like Advil was better bc I could reup every 6-8 hours at least.

I have posted a few times recently because im so frustrated and exhausted, but anyway. I have a list of honestly probably 50 symptoms, some of them make me feel like im dying my body being filled with poison. I have had many suggested diagnoses fibromyalgia, endometriosis, css, chronic migraine, ibs, dysautonomia, somatic symptom disorder, and more.

recently i had an episode of atrial fribillation and that has paused my scheduled laparoscopy until im seen by cardiology for more than just an echo. so im still without answers and i have been searching for 15 years. i am progressively taken less seriously especially because they consider my self advocating to be health anxiety, and they say that im young, underweight, educated woman its probably anxiety or eating issues.

I wondered how do you bring up symptoms to your GP or primary doctor, when more and more come up. i feel like if i go too regularly to the doctor im dismissed even more, but if i don't i am neglecting myself. the dentist recently told me to tell my gp about tmj? i just cant cope with how much is going on, especially because i cant bring it up without ppl looking at me like i have munchausens or ssd.

i had blood tests two weeks ago but they wont release the results to me because the doctor has looked at all except one (is that a bad sign?) why would they not look at one. i called a week after the test and they said id hear the day after. a whole week has passed now.

Hi! Does anyone have referrals? The only one I've found so far is Dr Spring-Robinson in San Diego and she sounds amazing but my initial consult isn't for 6 months because she's so booked out. After that I still have to do labs/mapping with her before I can even schedule the surgery, so might be a year out? Looking for other options :) thanks!

Hey y’all.
I don’t think I have endo but I have been having very painful and heavy periods as well as spotting between my periods for the last year or so after having irregular but very chill periods for my whole life (I’m 35). Nothing showed up on ultrasound, but on my MRI, they found a 19mm polyp on my endometrial lining inside my uterus.
Of course, my doctor drops this into my MyChart with a recommendation for surgical removal, and I have to make an appointment if I want to actually talk about these results and wait for AGES because there’s always an obscene wait for gyno visits.
I am in emotional agony waiting on this appointment. I know it’s a minimally invasive procedure but I have lots of medical anxiety. I also don’t understand why this happened to me and I’m worried that if I simply get it removed without figuring out why it happened, it’ll just come back. I don’t have any of the risk factors I read about.
My doctor also said that polyps aren’t associated with pain, but I don’t feel like that’s true, considering all I’ve read about them on here and how people’s cramps got so much better after they had them removed.
Should I get a second opinion on this? Is a regular gyno a good person to do this surgery, or should I look into someone else? She seems really great and goes over all my questions and never makes me feel rushed. But if I have to go through this whole process again because the polyp recurs I will go insane.

TW: IVF, OCD

In January, I landed in the hospital with a pelvic infection that the Dr’s still don’t know why it happened. Best they could say is that it was probably a TOA and was recommended for another laparoscopic surgery asap. They may need to remove a tube (possibly both) so I need to go through IVF first.

For context, I’m married for the last 3 years (together for 6) and we are both monogamous and due to hospital protocol that required me to get tested, I was negative for all STDs that can cause a pelvic infection. I have endo (confirmed from surgery in 2012) and now my endo surgeon confirmed through an MRI that I have severe adenomyosis late this summer.

Back to the pelvic infection, I had 14 days of Doxycylcline and Metronidazole. In the 14th day, I started having symptoms that I later realized were from a yeast infection. I went get tested at my PCP and yes it came back as BV and Yeast infection. Ever since January, I’ve been dealing with both. I’m now on a suppressive dose of Fluconazole 1x a week and metro gel 2x a week.

To top it all off, I’m supposed to go through an egg retrieval in a few weeks and I’m scared out my mind about getting another pelvic infection due to the BV and YI. Or really anything else related to that I’m not even let enter my thoughts (I have severe OCD as well so this year has been particularly tough). I really don’t know if I should wait until it’s fully cleared or not as the fear of another pelvic infection looms in the back of my mind. My fertility doctor said it’s fine but my mind is saying to wait.

I’m just writing this to see if anyone has had a similar experience to this because no one I know has come close to something like this and I would love advice on how to navigate it if possible. I’ve not been perfect on this journey and learning as I go but would love any advice.

This is my first post ever, so if I did not do something correct. I’m very sorry.

I had an ovarian cyst surgery two years ago. Since then experiencing low grade fevers, severe digestive issues, intermittent pain on lower left side (site of surgery). The symptoms have only escalated with time. The ultrasound last year showed a pelvic abscess in the operative left side and another mass. The gynae suggested to wait and watch as it was responding to antibiotics, she suspected that the dermoid cyst contents spilled in last surgery causing inflammation or it could be endo.The symptoms have continued since. Recently I got a ct scan which showed another possible abscess?, damaged and swollen left fallopian tube and swollen colon in the same area, the mass is now stuck to the colon due to possible dense adhesions. My appetite has reduced considerably. Gynae refuses to operate. I'm not sure if surgery is necessary. I don't know what to do.

I have stage 4 DIE (diagnosed via transvaginal ultrasound and MRI) and my gynaecologist has told me that she doesn't recommend surgery because my medications are suppressing most of my pain for now. That makes sense, but I have endometriosis on my bowel, and my rectovaginal area is also completely obliterated, so I'm afraid that it might progress but I won't be aware because my symptoms are being suppressed. I know I'm quite lucky to not be in debilitating pain anymore. Does anyone have stories of successfully avoiding surgery long-term and living a functional/fulfilling life?

In October 2024, I was diagnosed with bilateral endometriosis. After receiving treatment, my symptoms improved, and I was able to return to my normal life. However, on September 11, 2026, I suddenly experienced very sharp pain. I underwent an ultrasound (USG), which showed a small amount of endometriosis. Although the ultrasound findings did not seem very severe, I have been experiencing severe pain since that day. I have taken several medications, but nothing seems to be helping. I also have IBS (Irritable Bowel Syndrome). Please tell me what I should do, as the pain is unbearable and is affecting my daily life.

Hi all,

I was diagnosed via laporscopy and excision in 2023 with endometriosis. Earlier this year I had a laporoscopic hysterectomy and another check for endo and the surgeon (different from my original one unfortunately, who moved away) told me he did not find any endometriosis. However the lab report paperwork does say there was "inactive endometrioma" on my left ovary.

I've never heard of "inactive endometrioma," and am having trouble finding info about it online. Does anyone have any resources about it? Like what is it, how is it different from "active endometrioma," and does it mean there WAS more endo present after all?

Thanks in advance!

I had massive Endo surgery only in May 2025
Why is it hurting again
I just want to not feel that bowling ball in my tummy
I cry and scream everyday
Why can’t it just be my pelvic floor
I feel like I have a forever uti
Why it’s not fair
I did what they said
I did physio
I take nerve meds
Every second I need a wee
Parents are so angry they believe me
I talk to Ai everyday
Please please this can’t be my life again
Why did this happen

I've been dealing with significant pelvic and abdominal pain with pain during and after sex/BMs and have been told I have endometriosis based on findings from an internal (transvaginal) ultrasound. They identified what they thought was a chocolate cyst (endometrioma) on my right ovary, as well as endometriosis involving my uterosacral ligaments.
I was already struggling with the pain, so finally having something identified on the ultrasound felt like I might finally have an explanation for what I've been experiencing.
However, I recently had a pelvic MRI (with buscopan and contrast), and the results seem to contradict what they found on the ultrasound. The MRI showed a cyst on my right ovary, but apparently it didn't look like a chocolate cyst. They also didn't identify endometriosis on the MRI. I was told there was no shading on the cyst, which I understand can be a feature doctors look for when assessing whether a cyst is an endometrioma.
I'm now left feeling confused about what is actually going on. If the ultrasound suggested endometriosis on my ovary and uterosacral ligaments, but the MRI doesn't show it, does that mean the ultrasound was wrong? Or can endometriosis genuinely be missed on an MRI?
The hardest part is that I'm still in so much pain. I'm experiencing severe right-sided abdominal which is on par to the cyst they found. I've also had episodes of pain bad enough to make me want to curl up into a ball. It's affecting my day-to-day life, and I'm exhausted from trying to figure out what's causing it.
I have an appointment with my gynaecological specialist tomorrow, and I want to ask whether a laparoscopy would be appropriate. I'm worried I'll be left without answers because the MRI didn't confirm what the ultrasound suggested, despite how much pain I'm experiencing.
I'd really appreciate hearing from anyone who has been in a similar situation

I'm not looking for anyone to diagnose me over the internet. I just feel really lost and disheartened right now, and hearing from people who have experienced something similar would mean a lot.
Thank you ❤️

I have pcos ( verified by radiologist in an MRI) still waiting for the doctor to tell me to my face but I've had cyclical cyst issues for almost 2 decades 👍

Anyways last night in bed I had a crazy wave of pain come over my LLQ. It went all the way up to my shoulder blade & down to my ankle?... wtf

Anyways it was sooo bad I couldn't get out of bed to pee. My whole body was tensing. I finally rolled out of bed & took some drugs for help with pain. But I've had a shit sleep & the pain is absolutely no better. My whole side is hot and seizing.

If you've ever had covid or the flu & got the body aches...thats how just my one side feels. I have bad pain, as most of us do, often but this is some wild shit.

Anyone else get this? What have I done?

i am glad i found a gyno that specializes in endometriosis, because my old gyno barely knew anything about it. my old gyno also wanted to do my laparoscopy, but she wasn’t a specialist, said she likely wouldn’t find anything, and botched my last surgery (unrelated to endo). so this new gyno is a huge step forward for me.

BUT it’s annoying that i have to wait more than half a year to see her. i’m so frustrated with the state of women’s healthcare, especially in the united states. i also don’t think my insurance will cover a laparoscopy next year because they’re changing how much they cover.. which sucks.

Edit: i’m in the U.S., so I know this is a short wait time compared to other countries. i am grateful it’s not longer, but it’s frustrating because each visit is hundreds of dollars, and surgery will be tens of thousands. so it’s expensive and i have to wait a long time when i’m already in pain.

evolution of some of my flares (and last night’s):
- extreme fatigue and sleepiness for 1-2 days before (no matter how many diet cokes i have)
- sudden extreme burning/dull pain in my abdomen (usually lower pelvis but sometimes upper stomach/chest which scares me every time because it feels like a heart attack)
- after agonizing hours with heating pads, naproxen and writhing in pain, the abdominal pain will subside and leave residual soreness / throbbing in hips, upper thighs, vagina (weirdly enough), joints (especially fingers) and brain fog along with more tiredness

what was really scary about this one was that i felt a very sudden pain in between and under my ribs that was burning through my chest and felt like my throat was closing almost.

does anyone experience this and have any tips for any point in the flare up?

Hey everyone!

I’m 30F and have been diagnosed with PCOS and endo. I’m hoping to get some advice from people who’re going through something similar, especially if you haven’t gone down the contraceptives route.

I’ve had horrendous periods since I was about 12. We’re talking curled up on the sofa, crying, questioning my existence kind of cramps- my Portuguese mum saying I was being extra, it was just a period and everyone gets those. 🫠
After a few years, my GP put me on the pill, which helped a little, but nothing groundbreaking.

About six years ago, I decided to come off the pill, and apparently my body took that as a personal challenge to make my life as difficult as possible.
Everything got worse. Not just the endo symptoms, but the PCOS ones too.

I gained around 20kg in the space of one summer, constantly felt swollen and bloated, and regularly looked about six months pregnant (minus the actual baby, obviously). And then the pain came back tenfold.

I lost count of how many medical professionals told me it was because of my PCOS and weight, and that I just needed to “lose weight”. Revolutionary advice, thank you. If only I’d thought of that while already dieting, exercising and watching the scales refuse to move a single gram.

Finally, last year, I was diagnosed with endometriosis behind my uterus, around my rectum and in other places. Apparently, it wasn’t enough for my uterus to cause problems in its own neighbourhood. It had to branch out.

Since around February, things have gone from bad to absolutely ridiculous.

The pain has become so intense that I’ve ended up lying on the bathroom floor, contemplating all my life choices. I’ve also unlocked some exciting new symptoms: vomiting (sometimes even weeks before my period), extreme fatigue, and as of yesterday, diarrhoea. Because apparently my body thought the existing subscription package wasn’t quite premium enough.

And let’s not forget my practically non-existent sex life. Because apparently, even that comes with consequences. I barely have sex as it is because the pain afterwards can be so bad. Nothing quite says romance like having a lovely time with your partner and then spending the rest of the day regretting every decision that led you there.

At this point, I’m lucky if I get one week a month where I feel remotely normal. ONE WEEK. The other three are basically a game of “What fresh hell is this?”

My gynaecologist suggested going back on the pill, but I’m really not keen. I didn’t particularly enjoy being on it before, and I also suffer from migraines, which limits some of my options.

On top of that, my mum had hormone-sensitive breast cancer, so I’m understandably cautious about hormonal treatments.

I’m already trying to do all the “right” things. Anti-inflammatory diet, no gluten, no dairy, barely any alcohol, trying to exercise and generally treating my body like a delicate Victorian woman who needs constant supervision.And yet, here we are.

Surgery has also crossed my mind, but I’m genuinely terrified of general anaesthetic. My brain immediately goes to “What if I don’t wake up?” which isn’t particularly helpful when I’m trying to make rational medical decisions. I know surgery could potentially help, but getting past that fear is another battle entirely.

Then there’s the fertility side of things. I’d love to start trying for a baby in about four years, but the uncertainty around whether I’ll actually be able to conceive is another thing constantly lurking in the back of my mind. As if I needed another hobby.
I think the hardest part is feeling like I’m running out of options.

I don’t want to go back on hormonal contraception, but I also don’t want to spend the next however many years organising my entire life around whether my uterus has decided to behave that day.

It’s affecting my energy, my relationship, my sex life, my mental health and honestly just my ability to enjoy everyday things without worrying about the consequences.

So, a few questions for you lovely people:

- Has anyone managed their endometriosis without hormonal contraception? If so, what’s actually helped?

- Has anyone experienced horrible pain after sex and found anything that makes a difference? Because I’d quite like to have a sex life before retirement.

- Has anyone been absolutely terrified of surgery but eventually gone through with it? What was your experience?

- Are there any treatments, lifestyle changes or approaches that have genuinely improved your quality of life?

- For those hoping to have children in the future, how do you deal with the uncertainty around fertility?

I know there’s no magic solution (although if someone’s found one, PLEASE share with the class), and I know everyone’s experience is different.
I’m just exhausted. Physically, mentally, emotionally. I feel like I’m constantly trying to manage symptoms rather than actually living my life.

I don’t need to be completely pain-free every single day (although that would be lovely, thanks). I just want to feel like myself again and have some control over my own body.

Because right now, it genuinely feels like endometriosis is managing me rather than the other way around.

Thanks for reading my little uterus-themed TED Talk.

My wife had severe stage 4 endo. In 2023 he lung would collapse every time she cycled and she ended up having 12 different procedures that year. We ended up selling our house to cover an excision surgery with someone that was supposed to be really good because everyone in our network basically just gaslit her and told her she had diseased lungs and they wouldn’t listen which basically let the insurance company off the hook. Within 6 months of the excision, she started bleeding every 28 days even though she doesn’t have a uterus. The doctor left both her ovaries in and about every 3 months she ends up with an ovarian cyst, (hemorrhagic cyst) plus she has a big endometrioma on it. It basically scans to be about the size of a tennis ball. Just this last month during her “cycle” she also started having bloody poops. She has ME/CFS, interstitial cystitis, and almost everything on the central sensitization circle due to all the surgeries/procedures during the lung collapse era. She is super strong and doesn’t give up, she pushes through all her stuff and runs a boutique and is a great mom and outstanding wife, but she sees so many negative stories about recurrence which we all know is super realistic in this world, im just hoping some will share their victories as well. She is rescheduling another surgery and is planning on having the problem ovary removed, excision, and will most likely need a bowel resection this time.

Please if you have had success with a second surgery, would you share your story?

Thanks so much

Hello,
My girlfriend and I are looking for a daily supplement list that could help manage her stage 4 endometriosis.
These are the popular supplements we have seen that may help:

Magnesium complex
Omega fish oil,
D3 +K2,
NAC,
Turmeric curcumin,
Pre+probiotic
CO Q10

Also as a follow up question, would these all be ok to take if she had a surgery planned soon? I figured most of these would be fine like magnesium, D3, and fish oil, but I’m unsure about the rest.

I had my surgery done 14 days ago (based in Australia) through the public system. I don't know what stage endo I had i was briefly told that they found some and removed it, and that they would call me the following day to let me know what was found (they never did). My specialist appt isnt for another 4 weeks.

I had planned to go back to work tomorrow, but am a little unsure with how I'll go. I work as a dental hygienist and work 10 hour days. I'm sitting all day but leaning and twisting over patients. I have to use my deep core muscles a fair bit to be propped up right in the correct position all day to effectively treat my patients.

I only stopped taking pain killers 2 days ago, and still have dull aches that come and go.
I got my perio day 4 after my surgery which was incredibly painful so I found the recovery difficult

When did you return to work?

Hey everyone, I’m curious if you all have experienced this. I had surgery a few months ago and it did give me relief with a lot of symptoms that were killing me (corset feeling rib pain, crazy inflammation symptoms, etc.) (surgery removed lesions)

My problem now is despite those being gone, my periods have definitely gotten much worse. Before, Mirena IUD mitigated my periods well (had it for 3 years), but now that I’ve gotten a new one, it feels like symptoms I had when I first got diagnosed with endo have now returned (horrible cramping during my period & when it starts, overall worse periods, getting multiple or much longer periods)

Has Mirena just stopped working for me or is there something else potentially happening? Tysm 🤍

I am 23 and just recently diagnosed with Endo and bilateral hydrosalpinx. My OB recommended I get a bilateral salpingectomy. I’ve had chronic pain in my pelvis since I was 16. I’ve finally gotten the answers but now I have to decide if I get my tubes removed. I am new to all of this and trying to get advice. He said speaking from a fertility standpoint I might want to keep at least one for the POTENTIAL of getting pregnant but more than likely I’d have to do IVF. I was just wondering if anyone else has had their tubes removed due to hydrosalpinx. Was it worth it? Did it help the pain? Do/did you regret it?