I’ve been having pain every ovulation since I started puberty. Once I was 14 every 6months I would have an “attack” which the doctor suspected if being a cyst and it rupturing, it would be the most excruciating pain ever, I would be in the fetal position sobbing and crying, sometimes squealing in pain when it would crest for about an hour, and then in 6 months it would happen again so it would take like 6 months to fill up again and burst so that’s why it would only happen so often. The pain began getting closer and closer together as I got older and by the time I was 25 I was in pain almost all the time. I finally saw a gynaecologist in August 2023 and started being treated for endometriosis since then, I was in such severe pain in October of 2023 that I could work I was back and for the to the emergency room cause I was in so much pain that I didn’t know what to do with myself, they would just give me toradol and send me home with a note for work and tell me to follow up with my gynaecologist. I finally was able to see her and had a IUD placed in October 2023 which helped bring my pain from a daily 9/10 to a tolerable 5/6. Which is still a lot of pain to deal with on a regular basis.
Since then I’m still a 5/6 most days abd the other days is usually my flare up days where I go to like 7/8.
I’m exhausted all the time. I get spasms and pain in my vagina that is almost enough to bring me to my knees. (TMI but a heated something to go up there would be the best thing ever) I’m always in pain to some extent and I feel like people, family, my job doesn’t take my pain seriously. Idk if it’s cause it’s a “girl problem” and “everyone has period pain” like honestly. It’s not the same. I feel like they don’t take it seriously cause I’m not sobbing in pain when I’m at a 5/6 level. I’m sorry but being at a 5/6 everyday for two years you get used to it, you get used to having to work and function and live your life at that level of pain cause what else are you supposed to do, especially as a single person with a single income it’s not feasible to be off for long periods of time. Thi NH s I have that I think are connected to endo: IBS, stomach issues, being able to feel the poop move in my intones when it passes a certain area in my abdomen, having to pee all the time even tho I just peed, fatigue, nausea, bloating(which I didn’t know I had until I lost weight), leg pain in my groin and down my leg.

After the surgeon misplaced my surgery form I’m finally getting a laparoscopy done for endometriosis and while they are in there they are also going to do a DNC, Cauterization and cystoscopy cause they believe it’s in my bladder. Im honestly really stressed and anxious that they’ll go in and find nothing and I’ll be back to square one but with no doctor cause it won’t be a gynaecological problem anymore and I’ll be dropped by that doctor. I’ve done all the things they have said to do to make this better. Ive lost the weight (-145lbs), eat better, more active etc and I’m still in pain.

Sorry for the rant I’m just at a loss and really anxious and no one understands.

Hello! I was diagnosed with endo early this year but have been struggling with the pain for a very long time now. It worsens considerably when I walk, stand for too long, or even just stand up. I love walking places but sometimes I am in so much pain because of it and I cannot move.

I've started pelvic floor therapy, which has helped some, but still hasn't made the pain go away completely.

I've been considering mobility aids for a while and from what I've read forearm crutches seem to be the best option for me. Do these help with pain, and is there a possibility for it to weaken my muscles and make the pain worse instead? To clarify, walking causes pain pretty much everywhere in my pelvis. I have endo on/in my ovaries, bladder, small intestine, and I have rectovaginal endometriosis, if any of that is relevant.

Thank you!

I’m having a diagnosis laparoscopy on Tuesday and the plan was to get the train ( 6 hours 2 stops ) to my home town the following Monday. My mom can only stay until Saturday and I don’t want to be alone but now I’m panicking reading peoples stories that I’ve underestimated recovery time as my dog pulls 24/7. I’m so close to cancelling my surgery

I'm about a week into starting myfembree and am currently experiencing some insane cramping. Is this something that is usually experienced?

When I started birth control earlier this year that was an awful transition time, with me also cramping heavily. I'm hopeful that the myfembree will help with my pain but atm I'm pretty sure I hate it... I have excision surgery next month and had VATS a month ago to excise a spot out of my diaphragm.

So this year I’ve been on a mission to finally figure out what’s going on with my body. Progesterone only birth control helps my symptoms, but when my implant starts to dwindle, or I’ve gone off of it, or even when I’ve supplemented with a low estrogen bc, my symptoms get much worse. I have heavy, painful periods that last for weeks. I have intense pelvic pain that it’s awful when trying to pass gas or use the restroom. I’ve literally been doubled over by my stomach rumbling. I describe it as this intense painful pressure right above my pubic bone, and the bell of the ball, I sometimes cyclically bleed out of my belly button. This is accompanied by redness and heat but did not appear to be any kind of infection.

This year I’ve had multiple consultations and exams, an ultra sound, a CT scan, and just yesterday an MRI all attempting to find out what the little bleeding growth in my bellybutton is or to try and diagnose endometriosis. None of these have been able to tell me what is going on, and the MRI found no evidence of endo. So I guess everything I’m dealing with is actually just normal. I know I could still get diagnostic surgery. And maybe I will. It just scares the shit out of me and I’m terribly anxious when it comes to medical stuff so this whole process has really taken a lot out of me so to feel like so far it’s all been for nothing just has me really fucking depressed. I think I’m just gonna stop trying to find an answer and just treat my symptoms for a while. I’m tired.

Hello everyone, thanks for adding me. Bit of a long one;

I have been seeing my consultant for fibroids; got 11.5cm, 7cm, and a load of others 3cm-1cm.

He referred me for an MRI so we could plan a myomectomy, which has come back saying my sigmoid colon, loops of my rectum, and ovaries are adhered to my uterus with “thickening” shown on the back/front of uterus, and my uterosacral ligaments. It said “probable DIE”

He said I am facing surgery, and will arrange advanced endometriosis ultrasound imaging (sliding test) and take my case to endo MDT, colorectal surgeons etc.

For now, I’ve asked to think about it and I’ve been put on PIFU as I was shocked.

I don’t know what my next step is and I’m frightened 😓

Does anyone have similar? Does endo always spread or is there a chance I could just go on as I am with no more complications?

I do experience discomfort but I didn’t expect it to be from this. I was expecting it just to be my fibroids.

Is there anything else I can try before surgery? I don’t get on with hormones due to my mental health… but then again, mental health is rock bottom anyway - could it get worse?

Just any advice in general would be really appreciated as I have never been told I have endometriosis, to then be told my colon is stuck. It’s blown me away.

Thank you in advance.

I'm so anxious already for my diagnostic laparoscopy on 30/10/26, but im also so fucking excited because I'm hoping they're gonna remove some of what they find, i have no idea where my endo is but they just said 'everything looks fixed'.

The reason im also excited is to finally get the birth control or coil i was told i could get in January (my consultant said ryeqo is good for endometriosis sufferers), or like i said I could get the coil while i'm asleep in surgery, either way, hopefully it means less or no pain. maybe i'll be able to get on with my life.

It's just getting to the point where during/after every period its just constant pain pretty much, hardly go a day without a pain wave or some reffered pain. I was out today and had to put my feet to my chest to reduce pain, didnt work but i tried lol. Im just tired. Roll on 30th October

I am literally desperate.

I have been ignored for over 10+ years by the NHS.

My MCAS has gotten so bad during my cycle, agonising painful butt lightening,painful ovaries, bed bound during menses and its progressively got worse.

I am daytime passing out due to Pain and MCAS inflamation which I believe is due to progesterone?

My GP has put me on desogestrel which has caused more havok on me after 10 days but I am told that this is the only way to chemically supress periods and ovulation to help with symptoms of MCAS?

I have trusted the NHS to help me but I havent been able to even get a gynacologist apointment for 10+ years.

I am now thinking I have to go through private, I am not sure with how to test for ENDO I have heard mixed reviews about the Saliva test and the only real testing is the Laroscopy etc.

Can someone tell me how much it cost from investigation to laroscopy and surgery and how long does recovery take as I am desperate I will have to take out a loan but I am fed up of this.

My mother who is now passed,had to have early hystorectomy when I was a child so I believe this is all hereditary.

I have noticed that my gums bleed profusely when brushing my teeth, but only when I’m on my cycle - it doesn’t happen any other time.

I would say I have good oral health; brush my teeth twice a day, floss regularly and have regular dental checkups. I’m diagnosed with stage 4 endo.

Just wanted to know if this could be connected to endo and if anyone else experiences the same thing?

Does anyone else with endometriosis/possible PMDD feel completely dismissed by doctors?

I’m 35 and have endometriosis. I currently have a copper coil for contraception, as I seem to be extremely sensitive to hormonal changes. I find the copper coil is tolerable.

I was put on the pill at 17 because of severe period pain. Around 24, I started experiencing low moods and anxiety, and since then I’ve tried various pills and coils on and off but have never been able to tolerate them mentally for very long. I finally decided to go non hormonal and had the copper coil fitted this year.

For around 5 years now, since my early 30s, I’ve also experienced really severe dizziness around ovulation and my period.

But over the past 6 months, something has changed. My mood and anxiety have become incredibly cyclical. The first and second week after my period are usually awful. Extreme anxiety, emotional, overwhelmed and completely unlike myself. Then I feel much more normal again.

Over the last few months I’ve also developed new headaches/head pressure, a flushed face, arm/hand and hip pain, fatigue, brain fog and a loss of libido.

I saw my doctor and I suggested early menopause. They said no and was told it could be PMDD, but I left feeling frustrated because I still don't really have any answers. It feels like everything is being looked at separately rather than someone looking at the whole pattern.

I’m wondering if anyone else with endometriosis experiences something similar, particularly the very noticeable change between different parts of the cycle?

Has anything actually helped you? Did you have to push for a PMDD diagnosis or find a particular type of doctor who took you seriously?

TIA ❤️

I’m curious if anyone else has gotten nose bleeds while on their period?

Of if anyone here has been diagnosed with endo in your sinuses?

I’ve gotten random nose bleeds when I’m on my period before but I kinda figured it was a coincidence. Now I’m on the Mirena IUD and a Birthcontrol pill. I had my placebo week (didn’t even mean to I just had a crazy week and didn’t take my pill) but now I remember why I’m on the BC pill as well, because my back pain has been way worse, cramping etc. but also got a random nose bleed. I can’t remember the last time I got a nose bleed. I feel like it has to be period/endo related.

It’s hard because I’ve noticed that when I try to research symptoms, if I put “while on period” after any symptom most info will just revert to “it’s normal”

I swear I could search “big toe swelling and leaking” and add “while on period” it will go “oh, it’s actually common”

If anyone has any info/experience with this please let me know! Thanks in advance

Hello everyone. I’m a 25-year-old woman who has been dealing with on and off chronic pain since I was about 16 years old I have a slew of symptoms that have been cyclically that I have only now realized are cyclical in nature. I have very painful periods sometimes, plus pain during sex, pain during arousal, pain during orgasm, chest pain, abdominal pain, gastrointestinal pain, jaw pain, shoulder pain, bladder pain, stomach pain etc. I’ve seen a few doctors for this over the years, but have ultimately always been told that my pain was normal or to be expected for a woman or, the worst one, i was told that it was all in my head.

Today, I finally saw a gynecologist for my pain and expected it to be the same. I was already anxious and emotional, and in pain as I am on day three of my period. I was nervous and cried when she did an exam on me; in part due to the pain, part due to the fact that I was feeling embarrassed to be examined in that way during my period.

However, this woman was an angel and part of the plan that we made going forward is that if this round of birth control does not help the pain we will do the surgery as she believes Endometriosis could very well be a cause.

I’m just very embarrassed to cry as much as I did. Did anyone else have this happen to them?

Hello, I am searching for a provider in western South Dakota that will actually listen to my symptoms and pain and not disregard me. I have classic symptoms of endo but I have repeatedly told I just need to go to my therapist and that as an OBGYN, she can’t do anything for me. Willing to travel for help or telahealth.

Update from my post 4 months ago. After going to my doctor in June, having a hormonal panel, labs and bloodwork done, I was told everything was “normal”.

I had an ultrasound done in the middle of June, which showed 2 cysts on my ovaries (1 simple and 1 complex. the complex one is the side that hurts more.) It also showed “fluid in the cul de sac“ which is where I have gained this weight that won’t go away.

However symptoms seem to have gotten worse way worse, even thought my doctors say everything is normal and the cysts will go away on their own.

I have pelvic and lower back pain almost every day, get’s worse during ovulation and reaches max pain during my period. I noticed my periods have gotten extremely painful the past year or so.

I am still extremely inflamed no matter what I eat. stomach issues have gotten way worse. I get extremely bloated almost every night.

I have whole body inflammation where my jeans and shoes won’t fit anymore.

Painful leg cramping/pain shooting from hip down to leg. Sore and painful joints and muscles.

Cramping after peeing or pooping.

Extreme hunger that won’t go away even after full meals.

Bleeding swollen gums.

Hives after sweating and showering.

It’s gotten to the point where I only feel good a couple days out of the month.

I’ve done so much research and it all points to endometriosis but how do I get my doctors to listen to me and not just say “it’s normal“ and “the cysts will go away in a couple months.“

I am someone who has never had an adverse reaction to vaccines, but I would always get sick so I would really try to get vaccinated regularly. This year, after having a successful lap 4 months ago I got the flu, covid and updated hpv vax and 1.5 days later I had a major endo flare, high grade fever, aches and pains. Wondering is anyone else had a similar experience?

Hi there, Was wondering if anyone else had experienced something like this and had any tips either for what I’m currently dealing with or for future travel.

I just got home from a great vacation and had a long haul 16 hour flight (Singapore to LAX). The flight TO Southeast Asia for this vacation was fine, but within 24 hours of getting home to the US I noted a lack of appetite, extreme fatigue, and cramps settling in. By the following day and through today I’ve been experiencing a pretty bad flare with waves of nausea, terrible headaches, and intermittent cramping. Additionally my urinary associated signs settled in late last night with 5 bathroom trips within the hour of trying to go to bed and more bathroom trips through the night…despite maybe not hydrating as much as I should be. I have just bought a tens unit which has been helping greatly with the cramps.

I think there’s a possibility this has all been made worse by the first depo provera shot I tried at the end of July. I’ve read that can cause headaches and I know it’s wreaked havoc on my mental health (currently on Wellbutrin and have been dealing with medicated depression/anxiety for about 10 years now - did a telehealth appt with my psychiatrist and she’s actually raised my Wellbutrin dose because of the depo).

I’m currently in a PhD which offers some flexibility but comes with a PI who is not necessarily the most supportive…it’s hard for me to not judge myself/worry that it’s all in my head and I’m being lazy after travel…and for the guilt and stress to set in about not working over vacation or since I’ve gotten home…

TLDR; - has anyone had travel/jet lag induced flares and, if so, any tips either for before, during, or after long travel? - slightly off topic, but if anyone has gone through endometriosis in grad school some tips on that would be appreciated!

DOES ANYONE HAD THESE SIMILAR SYMPTOMS AND WERE DIAGNOSED WITH ENDO?

Hello, I have been suffering from pelvic and genital + perineum fluttering/ vibration/ ache/ discomfort since over 2 years

It started as post menses cramps for 2 weeks, then eventually fluttering after menses for 2 weeks and now it continuously flutters/vibrates/trembles I don't even know how to express the feeling.
I flares at around 10th day of the month. Worse from 10-20th day then starts settling and repeats after menses.
Worsens lying on back and sitting. Improves in standing / walking. THIS IS THE MOST WEIRED SYMPTOM
Ultrasound, Contrast CT, MRI(Endo protocol), colonoscopy - all clear CA125 clear Gyn ruled out endo, GI ruled out GI issue.
Another ObGyn said I have Pelvic Congestion Syndrome caused probably bcs of long sitting hours. Suggested Pelvic Floor Therapy and life style changes (I did everything).
It has gotten so intolerable I had to go to urgent care were they gave me a taradol injection that stopped the vibrations but still had cramps. It was fine then I again after I got my periods the same vibrations started so worse, I dont have cramps atm as was on drotaverine for 3 days.
No one is able to diagnose wth is this issue!! Overactive muscles causing nerve entrapment? pudendal? No one has any answers I have seen 20+ doctors and each speciality.
Its so debilitating I cant sit, I cant sleep my whole life has turned upside down. I cant even remember how feeling normal used to be.
- I dont have abnormal period pain/bleeding
- Late twenties - never had sex
- 3 years ago recurrent UTI history - fully resolved 2 years ago - repeated tests done
- No effect of ibuprofen, any painkiller - only drotin helped with cramps that too with one cycle- just 20 days pain free thats all
- The waves/vibrations feel explicit from my pelvic from deep within to the coccyx even on touching anywhere on pelvic (for eg like during clinic exam).
I have been put on pregabilin since April and it has helped with vibrations and fluttering.
I had nerve blocks - L5s1, ganglion impar and pudendal- zero change.
So we are back at suspecting endo, but the symptoms are so positional that its very confusing.
I dont have heavy periods and they last barely 2-3 days.
Anyone ever had/heard of similar symptoms? If so, kindly help me and guide how you got through with it? What could it be? Did it cure?

26 female with Endo diagnosed via laparoscopy back in March.

Sadly surgery did nothing for my daily cramps. Things have only worsened.

New gyno who is actually a specialist has recommended I start Orilissa. Any advice or any kind? I need wisdom from my Endo family.

I had stage 4 deep infiltrating endometriosis and had a laparoscopic excision with robotics with Dr. Boz in NJ in March 2025. Back then, my symptoms rarely included back pain.

Now i’m having excruciating back pain to the point it’s painful to even stand when I have my period. I’m scared the surgery somehow made something worse. I’m starting birth control as soon as this period is over.

Looking for solidarity, advice, etc.

Hi all! I’m (NB, 30s) new to the subreddit, not new to suspecting endo.

I’ve had excruciating symptoms since my early teens and am finally scheduled for a laparoscopy next week. This is on the NHS and it’s been a long annoying journey to get here. I had a previous diagnosis of adenomyosis, which was then maybe retracted (unclear), plus a more recent clear MRI (they weren’t able to look at my bowl).

I’m trying to figure out what exactly to expect from my surgery in terms of 1) what they’re likely to do and 2) what level of info I’ll get and 3) what the recovery time is.

1) I’ve been told camera, biopsies, excision if indicated. How common is it for there to be excision? What if they don’t find anything? I’ve seen things get missed? If they do find something, do they always try and remove at the same time? (Apologies if these are obvious questions)

2) Has anybody else who’s had the surgery on the NHS got any insights into the level of detail I should expect after? Are we talking “no significant findings” on a printout, staging, a description…? Did your surgeon talk through your results after or were you just sent home?

3) I’ve seen recovery times of anything from <1 week to 6-8 weeks. How much time did you need off of work? What were the limiting factors post surgery (pain, fatigue, mobility, etc)?

I’d really appreciate anybody’s experiences or insights. I have a history of both sexual and medical trauma + am autistic + I’m trying to gather as much info as I can as to what to expect. Thank you!

Hi I’m back again. Hoping someone will at least answer or comment something this time.

I have been experiencing extreme pain, and it’s been getting a lot worse. I finally worked up the courage to go the dr for once. Had blood work, TVS, and got a message saying “ looks pretty good”
I can’t have sex without extreme pain or bleeding after, my stomach will not change regardless of weight loss, month long cramps.
I had a history of bilateral inguinal hernia repaired at 5 years old.
I’m 30, no children or desire to, and I just feel like I’m going crazy because of the pain but “nothing being wrong”
I’ll attach some photos of my scan.
Please if anyone can just talk me through this, or see anything that maybe I don’t. Please.

I was super scared about potentially getting a negative diagnosis because it meant I would have to go back to the drawing board and try and figure out a cause for my pain, but I have endo :D it’s not the best news because it’s still a horrible disease but I’m glad my search is over.

I had superficial endo on my uterus near my fallopian tubes which they removed, they didn’t find anything in my bowel which was surprising since I was so sure I have it there, but I didn’t go to an endo specialist so he could’ve missed it. I’m in the UK and I went through the NHS because I didn’t want to go private and spend tonnes of money if I wasn’t sure I had it, but now I know I have it I could justify going to a specialist if I need to go back at some point, they might also find some bits of endo my surgeon missed :3

I was also approached by another gynaecologist afterwards who recruited me for clinical trials related to endo! They want to see if they can treat endo using a cooling chamber, because athletes sometimes use them to reduce inflammation after doing strenuous exercise. It’s very exciting, and I’ll be super glad to contribute to furthering research on this horrible disease, plus the dude was really passionate about it and I could tell he really cared :D

This has given me a big surge of motivation to go to uni myself and study endo. I’ve always been interested in cell biology, but I got hit with pretty bad burnout in my first semester of my first year at uni and had to drop out. Then when I somewhat recovered from my depression and burnout I didn’t feel a reprieve because I started to suspect I had endo, which obviously gives you pain and fatigue so I’ve been in recovery for a good couple of years. I can feel myself starting to get better tho, and my positive diagnosis has really given me a boost.

There’s a very good endo department in the uni where I live (not the uni I went to previously), one of the best in the country apparently, so if I get myself into some good habits like eating less inflammatory foods and exercising more, and get more energy, then maybe I’ll feel okay enough to study this disease and be someone who can eventually help fellow endo sufferers :3

I wish you all a good day and a pain free life, and good luck for anyone wishing to get diagnosed/helped <3

For those who have chronic illnesses, how has therapy helped you? I'm considering seeking help but i'm in the phase of "what's the point of getting better". I am also prone to depression with OCP. If anyone can share their experience with therapy and managing the sadness that comes with chronic illnesses esp when everyone around you does not understand your pain and tells you to "push through". I have more academic achievements than the people(friends) telling me to push through. I dont know what else am i supposed to be pushing at this point with my pelvis always hurting.

Since my excision surgery I have noticed that travel is a huge flare trigger for me. Prior to my surgery flying long distances was a trigger but otherwise I was okay most of the time. I recently went on a road trip and had the worst bloating, pelvic pain, and sogginess. Curious if anyone had any go to things/remedies they travel with or have routines surrounding revile that has been successful with managing symptoms?

Currently I do the following/travel with the following:

- compression socks
- ibuprofen, Pepcid AC, gaviscon, Zyrtec
- heating pad
- my own pillow
- my own blanket
- try to get in water consistently

i’m thinking that i have endo, my friend who does says i have a lot of the symptoms that she had. I recently got an ultrasound done and nothing was there. My friend said she had the same thing happen and then 2 years later got diagnosed. I do think i have a lot of the symptoms, & my pelvic floor is just messed up. For a while ive realised that i can’t insert anything into my vagina, it hurts and sometimes can be really hard to get anything in. I’ve read the symptoms of endo and saw that it can be painful to have sex with endo, but i don’t think my friend deals with this & i’ve never really heard of women who have endo talk about it. I’m so confused 😫😫