I have no friends anymore because I can’t leave the house except to go to work (barely).

I have nothing I am able to do right now except lay down with a heating pad. I’m so weak and so tired. All I do is complain.

I don’t recognize myself anymore. I miss who I used to be. I’m scared I will feel like this forever. I’m so alone. I have no one to talk to.

When i first got my period, i had zero pain but after a year or two instarted getting bad period cramps, my lower back would ache and it was to the point id cry even after trying ponstan or neprogesic. I now take panadene forte which is codeine and panadol and it helps with pain a lot but its a very strong tablet just for period pain. Im really struggling and unsure if it sounds like it could be endo and if its worth going to a doctor for it considering i hear its very hard to have a doctor listen to your concerns.

Provera/medroxyprogesterone
I have been on it for 7 years now, for endometriosis
Haven’t bled since and it has helped with the pain a lot, of course i have some pain but it’s manageable, and I don’t get endobelly anymore

I just got back from a 10-day trip abroad in a remote area of Italy and I was ovulating during this time. Every day, I ate organic, farm-to-table food. I had coffee with whole milk every morning, sometimes twice per day and even enjoyed white and red wine with dinner. I didn’t have a flare once while we were there. I definitely felt pain here and there on my right side where I always get it during ovulation, but it was nowhere near how bad it usually is.

Because of my endo, my family specifically planned the trip so we could stay mostly in one place, relax by the ocean, and not be constantly on the move. I ate everything: cheeses, prosciutto, ham, pasta every day. I was too scared to try regular so I had gluten-free pasta. One day, I even hiked a mountain with my family. I still took it slowly and stopped a few times, but I never gagged or threw up, which happens regularly back home just from walking up stairs or hills.

We ate in a touristy city once near the end of the trip, and that’s when I got sick, (a stronger pain) but still nothing as bad as it could be where I'm keeled over in agony. I’m not saying everyone will have the same experience, but I wanted to share what happened for me. I’m honestly heartbroken because this trip made me realize how much American processed food and stress contributes to my flares. Ten days, right through ovulation, without a serious flare. I still can’t believe it. And honestly, I’m really sad to be going back home where I will have to go back to watching what I eat and drink every day.

Please don't come at me for this post. I just wanted to share my experience.

But what I am going to take from this trip is that I am no longer going to allow work to stress me out and I am going to make an effort to read labels and eat cleaner, wherever able :(, in the states.

I'm sorry if this is TMI but i have been bleeding after every orgasm and i have not gotten periods in 2 years now. The bleeding started happening a few months ago but a few months before the bleeding started i can feel a "ball" inside my vagina that is on the left hand side of what feels like the wall. I had an orgasm last Thursday and immediately started bleeding. Today its worse and i feel worn down as if im getting sick, i feel hot, i am not hungryat all. I have lost weight, i have pain internally where my pubic hair is. Last time i went to the ER and the doctor that saw me was a man and he did absolutely nothing. No testing no labs. No physical exam. Last time it was affecting my heart beat which only started when the bleeding did. Its not this time though. When i had normal periods my periods never caused symptoms and i never needed a pad but that was 2 years ago. These are completely out of the realm of normal for me. I do have a subcentimeter intramural fibroid of the posterior uterine body which is on the left which might be that lump i feel and i have a Indeterminate, intrinsic T1 hyperintense focus within versus adjacent to the right anterior anus. Which scans could not determine if it was endometriosis or not. I have no idea if this is related to endometriosis or not or something new. I am told my progesterone is low and could be the cause of this. It doesn't matter which method i obtain an orgasm. I can just be in the shower and using the water for stimulation and i still bleed with orgasm from outer stimulation. I bleed multiple times in a month from the orgasms. Should i be more concerned about this? I feel like my doctors aren't taking this seriously. I didn't even realize i was still bleeding until today. I stood up and it felt like i pissed myself. The bleeding starts immediately after orgasm, its light pink then later changes to a different red not a normal red then very slowly bleeds with no symptoms, the bleeding isn't even noticeable then later a few days in it just comes out of nowhere. Its causing really bad pain right now and is radiating down my right inner thigh and over my pubic area and internally it feels hot.

Recently told my mom who has been dying for grandkids and already has one through my sister, that I am not having kids. Also have endometriosis and adenomyosis and have had 2 surgeries. She asked if I am leaning towards removing everything when yes, I have told her multiple times I want a total hysterectomy. I am tired of being in pain, tired, and not feeling myself. Her face was one of clear disappointment and she didn't day anything but made a point to ask my husband if this is also what he wanted. Ummm hello? It's my body? My husband has been supportive and said that he wants me to be healthy. I feel very alone and don't have family support. My husband is great but I wish my family was more understanding. They don't seem to really get what I'm going through and are medically "ignorant." Nowadays with the internet and chatgpt they could easily Google what I have and try to understand. I am choosing to be childfree and feel that in my family and culture it's all about having kids but life is much more than that. Recently was really nauseous which has been happening a lot lately and was also on my period and my mom's comment was "maybe you're pregnant." How many times do I have to explain nausea is a symptom of endometriosis and I am on my period and don't want kids? My patience is running thin with family and I really wish it wasn't that way.

I was diagnosed with endo this last wednesday - and although i’m blessed to have answers I feel a little out of place.

I have PCOS, PMDD, and adeno as well. GLP-1 has significantly helped my inflammation and I am down from my highest weight of 350, to 290 - I would love to lose 50-75 more pounds.

What do you guys do for diet and exercise? I felt my best doing pilates but can’t afford it anymore.

Just got my results from my larcrosopic surgery and far out I'm exhausted.

The person on the phone spoke very quickly and not very clearly but their end point was that they did not find any endo in surgery. They found something? They tested and was apparently not endo.

I don't know what is happening I'm in pain and all my symptoms are like spot on endo. They said it could be pelvic floor issues and I'm just sitting here thinking it could be anything. It could even be endo but not in my pelvis. I'm so . I'm trying not to give up hope I just have no idea where to go from here.

Thank you for listening to my surgery rant

Has anyone else had this symptom before?? I have PMOS and suspected Endo, have been suppressing periods for a few years now and have introduced ozempic in the last four months to manage pmos symptoms.

For the most part getting on a GLP-1 has taken care of all my symptoms... until today. Was locked in to work tasks when it started to feel like my uterus was on fire. THAT's a new one for me. Felt almost like a period cramp except it was continuous for maybe a half hour and burned instead of cramping, then just kind of faded away. Is this a common issue with the endo girlies cause now I'm a little concerned that I'm not managing this as well as I thought I was lol!

Looking for insight from OB/GYNs and anyone diagnosed with endometriosis! ❤️

My husband and I have been trying to conceive for over a year. Within the past year, I’ve experienced one miscarriage at 8 weeks and two chemical pregnancies. We are currently pursuing letrozole/medicated cycles, and progesterone support during pregnancy has been discussed.

Today, my ultrasound revealed a new cyst on my left ovary that was not present on previous ultrasounds, including one just 1–2 months ago. My doctor mentioned that its appearance could be consistent with an endometrioma and plans to monitor it for now.

I’m attaching my ultrasound report for additional context. Given my fertility history, this finding caught me off guard, and I’d love to hear from anyone who has experienced something similar.

Has anyone been diagnosed with endometriosis after an ultrasound finding like this? Did it affect your fertility or treatment plan? If you experienced recurrent miscarriages or chemical pregnancies, did your doctor discuss a possible connection?

I’d especially appreciate insight from OB/GYNs or fertility specialists on whether this finding warrants further evaluation while pursuing fertility treatment.

Thank you for sharing your experiences! ❤️

Hello! I am having to have my marina coil removed next week as I have started HRT medication to manage endo symptoms. I have had my coil for 5 years now so coming to end of its cycle anyway. It was such an awful experience getting it installed. Does anyone have any advice around removals? Anything to do afterwards or before to make it easier?

Idk what category to be put in or what community should I reach, but this is a thing I'm struggling to process and want help from a long time now.

The chat is a screenshot from my ex and she is chronically ill and asking directly money from strangers or even me is not a thing for her so she keeps on fighting for her life on her own everyday.

We are separated for many months now and lot of things happened, mistakes, situations and whatever that lead to the seperation, and we were in relationship for only few months, and there was a long term relationship before that of her and mine with other different people obviously.

But what I have seen her is she had been battling with (all diagnosed) IBS, endometriosis, blood pressure related issues, and a lot other things for which she had to have a plethora of medications which is very unusual for a 26 year old girl.

And despite all of this, she had the courage and will to fight all by herself, not play any victim card, not give any excuse. She worked somewhere else before our relationship and during and starting of our relationship she joined a BPO to get herself own funds for everything and stay independent as much as she can. And every day she would get ready with everything and do night shifts as was allotted to her by the company.

Somethings happened we seperated, but still with whatever sore heart i had, I tried to help her with everything I could, giving away things from my own place, giving money, doing things for her, but ultimately my sore heart and all other things my family my job, my mental health couldn't allow with her to re-unite and settle with her again.

But as a person I cannot just let her go like this, it hurts me so much to let go of her and you all can trust me I have tried helping her with whatever i could even after separation and keeping my family and everything in a non-alarming state.

Now the thing is, she doesn't have much money left, or I would say none left and she's falling sick every other day and cannot attend office, which she wants at any cost to go, I have seen her in absolute fever and stomach pain, and extremely high period blood flow, pain, she has completed her office shifts. But she cannot do it anymore.

I am unable to help by money from this month and she has not been able to buy essential medicines too.

I need suggestions, I need people to help her with funds, I need connections.

And before anyone suggests going to a doctor, We have seen doctors, medicines, done tests, but this is chronic issue, we have seen not so much help because more studies are not done on this, like endometriosis. And doctors need huge amount of money, it is so sad.

Medicines we have seen, for IBS, medicines that is getting prescribed is just to make her drowsy so that she stays calm, this is not the way to treat someone right.

There is a huge amount of money already burned for doctors, medicines, tests, lifestyle everything.

We need money to stay alive and we need health to earn money, what if we have none. And about families, she had been separated from her father's side from childhood because she was a girl child, so there's history of emotional abuse, childhood trauma, it's much like they didn't wanted her to live at all, but somehow she bloomed.

Idk and idk, anything i write to explain the current situation for her and her past situations is less. I want people who can help, any genuine females who can relate to these chronic issues connect with her, any organisation that can help her, any remote job she can do and earn her living(she is a BBA graduate from a reputed college in kolkata and had science background and even pursued core science stream from a very well known college but couldn't continue because of her health), anything.

I'm very emotional and tired so maybe I am not able to structure the texts and situation. But please anyone help.

I’m 22 years old female, and my symptoms first started in January 2026.

I got my period, and everything seemed normal at first. A few hours later, I started vomiting. Initially, I didn’t think much of it because I used to take a lot of pain medication during my period, which often made me nauseous and sometimes caused me to vomit multiple times during the first or second day.

However, this time was completely different. The vomiting wouldn’t stop, and I was throwing up approximately every 2–5 minutes. This continued for eight days.

I was admitted to the hospital, where I underwent numerous tests, including an upper endoscopy. The examination and biopsies showed no significant abnormalities. All my other tests also came back normal. The doctors tried multiple medications to stop the vomiting, but nothing worked.

The following month, the exact same thing happened again when I got my period. I began vomiting uncontrollably, and my doctors started suspecting that the episodes might be related to my menstrual cycle.

After undergoing further investigations, I had an imaging study of my small intestine using contrast material, which revealed that I have superior mesenteric artery (SMA) syndrome. My aortomesenteric angle was measured at approximately 13°.

My doctor explained that the SMA syndrome needed to be treated through nutritional rehabilitation and weight gain. However, I was also advised to see a gynecologist to investigate why these episodes seemed to be triggered by my period.

The gynecologist prescribed me a combined oral contraceptive pill containing both estrogen and progestin. He initially instructed me to take it normally, including the placebo week, so we could see whether the vomiting would recur during the withdrawal bleed.

Unfortunately, when I finished the 21 active pills and had the withdrawal bleed, the vomiting happened again. I lost a significant amount of weight and became extremely weak.

My gynecologist then instructed me to take the pill continuously, skipping the placebo pills to prevent withdrawal bleeding. The idea was to prevent my periods and hopefully avoid these episodes.

There are a few other details about the episodes that I think are important:

They generally last between 5 and 9 days.
I experience fever, extreme pain and become extremely sensitive to external stimuli, particularly light and sound.
I vomit even when my stomach is completely empty.
I cannot keep any food down during these episodes. Even a single sip of water can trigger immediate vomiting.
I become so dehydrated and weak that I need IV fluids to get through the episodes.

What I find particularly confusing is how closely these episodes seem to follow my menstrual cycle, especially considering that I also have SMA syndrome. I don’t know whether the two conditions are connected or whether something else is contributing to these episodes.

One last note, i’ve now been taking the birth control pill continuously for the past six months, skipping the placebo pills to suppress my periods. However, I still experience occasional breakthrough bleeding. Whenever this happens, I feel extremely unwell and nauseous. It seems that any bleeding, whether it’s a natural period, withdrawal bleeding, or breakthrough bleeding, is associated with significant nausea and feeling very sick.

Has anyone encountered a case like this or have any ideas about what could explain the connection between my menstrual cycle and these episodes of extreme vomiting? Are there other conditions or possible explanations that I should discuss with my doctors?

Hello beautiful souls,
I was just hoping to see does anyone else get horrific pain from their ovaries down there leg then later on excruciating pain right before or between bowel movements.

I have a really high pain threshold (as I believe we all do!) as I've had viral meningitis 8 times and dealt with endo for the past 20 years. But oh my goodness the pain I had last night I nearly passed out. I can't fathom how painful it was. I also had volatern ibuprofen and tramadol 2 hours prior and still was so extremely bad.

When I had my lap they said my bowel was inflamed but they found no endo.. but it wasn't a specialist was a horrible experience and they didn't even do biopsy's like I requested. I do believe I have endo or adenomyosis and im getting surgery by a endometriosis specialist next year through private health.

Can anyone relate 💗

Hi all,

I apologise for the rant / ramble, but I am so lost and I'm just looking for any guidance.

I'm currently 2 weeks post lap excision. I didn't have a conversation with my surgeon after surgery (She was too busy?), and I was given 9 photos of my insides that I can't decipher and sent on my way. I do not have a booked follow up appointment with the surgeon (patient initiated follow up scheme for if you have complications) but have received a letter and according to the letter should get another letter when they have lab results.

In the letter the surgeon has advised they removed endometriosis from 'either side of the rectum (pararectal spaces)' and involving the uterosacral ligaments. The surgeon also states my uterus was popping a wheelie (tilted backwards) and 'bulky with changes suggestive of adenomyosis'

This is my second surgery, I was previously diagnosed with endometriosis in 2019 via lap, this surgery was to help with symptoms.

The adenomyosis mention was a surprise however, not that I can say they've given me a diagnosis of this, because in this letter they give me nothing. I wanted this surgery to try help my pain but also to try and get answers to why things hurt. But now I just have even more questions.

I don't know what stage my endo is because I've never been told, I dont know if I need to explore an official adenomyosis diagnosis or what this means, does the endo being found in my pararectal spaces mean it's impacting my bowels and can explain symptoms I'm having? Is my endo classed as D.I.E?

I feel like strangers have rooted around inside of me, and yet I'm the last one to know what they've found, has anyone ever had similar answers or just advice?

hi everyone, I've been a long time lurker. I am not officially diagnosed with endo but I've been experiencing certain symptoms for almost 5 years now and my gynecologist mentioned endo as a potential cause at our first appointment. I had a trans abdominal ultrasound but that all seemed fine. I was put on meleya birth control in the meantime, which I've taken for one cycle so far. made my periods significantly lighter and more manageable ! which was great

however I am here today because I noticed that I am cramping today, and also experiencing some chest pain & tightening near my heart. this makes it difficult to breathe, it almost feels akin to the physical symptoms of a panic attack but I am perfectly fine (I do have panic attacks at times and this experience happened outside of them lol) my doctor is also speculative of PMDD, if that provides any context. I am not officially diagnosed with anything because I had a lapse in healthcare in the last 2 years and prior to that, my physicians and parents were dismissive of all my experiences, mental and physical

I only started tracking my cycles again late September, as I used to but stopped after some of the apps were cautioned against for how they used the data. missed lots of valuable tracking & cycles in the meantime.

anywho, the symptoms I described above (the non-period cramping and heart pain) seems to have aligned with my ovulation ! this is the first day I am ovulating of my current cycle. I had never put the two pieces together, but I guess it makes sense now. my question is if this could point towards endo? I've seen others report similar symptoms in here before, which is why I recognized the connection. furthermore, I am unsure why or how the heart pain could relate to my cycle but it really seems to line up. I know people have had endometriosis on their heart before, which sounds scary. not to say that is what's happening, but just trying to understand it all. curious and open to hear anybody's thoughts !

I will be sure to bring these up to my gynecologist as well & have more data for them, but our next appointment is in December. I've only had one period since I saw them and I want to get on top of tracking my symptoms, managing the experience, etc. thank you all 🤗

My wife is going in for a myomectomy and endometriosis incision surgery next week, and as she'll be pretty out of it afterwards I'll be the one talking to the doctor. I want to make sure I have every possible bit of information we need, so I'm wondering if you all have any advice on the sorts of questions I should be asking.

I imagine things like asking what was found, what was removed, and what was left behind are probably the focus, but any thoughts or advice would be very much appreciated.

Thank you!

I had my stage 4 DIE excised 5 months ago and it anything touches my abdomen, I immediately start bloating. I’ve gone up 1-2 sizes and it doesn’t help, and I’m 2 months into pelvic floor therapy 😭

Hi everyone! I was newly diagnosed with endometriosis and adenomyosis, living in Bay Area. I just wanted to reach out and see if there are others in the Bay Area going through something similar.

I have surgery scheduled for December and I'm trying to get my support system in place beforehand. I'd love to connect with local women who get it — whether it's venting, sharing tips, or just knowing someone nearby understands.

I'm also actively looking for recommendations for:

A knowledgeable OB/GYN in the East Bay or SF area

A functional medicine doctor who has experience with endo/adeno

Any suggestions would mean the world. Thanks for being such a supportive community!

Hi everyone. I have been diagnosed with Endo and adenomyiosis but I’m still awaiting either a new MRI or surgery date. I have been in pain for years but the pains have been to an extreme where it completely took over my life. I sometimes cant sleep for days and I lost so much weight my parents cry anytime they see me. I havent been able to work for months either and I feel so extremely ashamed of myself that I cant bring it togheter to work and pick my life up as I’m not even 30 yet 🥺 is anyone else here having the same struggles? I feel so alone in the medical world 😭

I’m having my surgery in January and I know it’s recommended to get either low rise or super high rise underwear that won’t irritate your incisions and stomach. I’m personally thinking I’d rather low rise so nothing is touching them. Does maternity underwear work or does it not fit cuz it’s meant for pregnant women with a large belly? I know sometimes it’s also recommended to wear diapers or disposable underwear, and I do have a few leftover from my colonoscopy. Just wanted to know what you guys recommend from experience.

I’ve got a weird collection of symptoms and wonder if Endo could be causing them, so I thought I’d post here and see if anyone has had similar experiences and found an explanation! To be clear I have not been diagnosed with Endo. I have had an ultrasound that appeared normal, blood tests with slightly low ferritin but ok hemoglobin, no apparent thyroid concerns.

So the symptoms… they’ve been getting progressively worse over the past year ish. Every month I get such intense fatigue and brain fog around ovulation and luteal/menstrual. Which is so much of the month 😭. I also have random twinges of pain in various spots in my pelvis and where I presume my uterus and ovaries to be, which can also manifest as general hip pain or more intense pulling, stabbing, or squeezing cramps. Usually these get more concentrated and severe around menstruation and ovulation. The windows of when these symptoms come up seems to keep widening as well. I’ll also get random nausea round these times, tension headaches, hot flashes, night sweats, and sore breasts. My cramps during my period are generally just kind of deep and achey and honestly pretty mild but there is usually a 30min-1 hr period in which I get a crazy wave of squeezing cramps throughout my whole pelvic area. This has also happened a couple of times around ovulation, leading me to feel like I was going to pass out, not even from the pain bc those times it wasn’t as intense but still so scary !

Ive always had a slightly variable cycle but it’s pretty predictable within a like 5 day window every month. I’ve been working with a GYN to try and figure this out and we’re in the early stages so I’m still a bit lost at sea with no clear answers coming through the testing so far.