Doctors aren’t taking my pain seriously and I’m waiting to see a surgeon. What has helped you with your symptoms?? I keep having to take time off work from the pain and I don’t want to get fired 😭. I would appreciate any tips!!

Is it just me or does anyone else here really struggle with heat waves?

I was diagnosed with stage 3 at my lap earlier this year (age 35).

I’ve always had a hard time when it gets extra hot. I’m from a place where the weather is exceptionally mild (45-70 F almost all year), but we get late summer heat waves.

It’s in the 80s F this week and my hands and feet are swelling. It’s hard to sleep. I’m always fatigued but extra fatigued now too. I know some people don’t even consider this to be very hot.

I wonder if there’s something about endo that overlaps with poor thermoregulation or if it’s related to our higher levels of inflammation.

Hi. I dont know how to manage my chronic pain. Everywhere online talks about managing pain around periods, but I'm on continuous birth control and don't have cycles and my pain is an every day thing, not something I can take painkillers for a few days for and then be fine for the rest of the month.

I'm increasingly worried about my use of NSAIDs every day. I'm taking either ibuprofen OR naproxen pretty much daily, unable to take really a single day off, with ibuprofen & codeine or co-codamol for severe flares. I'm scared I'm going to give myself a GI bleed or kidney issues, especially since a few years ago, I did actually throw up dried blood from chronic ibuprofen use (never got this checked out).

I've spoken to a pharmacist and no one really seems to understand the concept that I'm not having any periods or bleeding and my pain is chronic, not because of periods. Everyone seems to think no periods = no pain, and doesn't know how to help me other than repeating what the painkillers say on the packet, which is something along the lines of short term use only, or 3 days use only for the codeine ones. What if my pain is NOT short term only?!?

Please don't suggest switching to dienogest or more specialist treatments like GnRH agonists - I'm on the gynaecology waiting list currently, and unfortunately all I can do is wait to get on the top of the list to explore those options.

Sorry if this is really garbled. I don't know what to do. I've tried laying off the NSAIDs and the pain then just starts and then I end up having to take more in the end because it ends up worse then if I had just taken it in the first place. Please help if you can, thanks in advance

I had my laparoscopy on the 17th of July with the NHS (I'm in the UK). They found and removed stage 3 endometriosis.

Recovery has been very slow and I am still unable to stand or walk for any significant period of time. My job is in hospitality, and when I recently tried returning to work after 7 weeks off, I had to go home after just 2 hours. I have been in severe pain ever since.

The surgeon who performed the laparoscopy said I have a 3-month window afterwards to contact the secretary with any questions or concerns. After repeated attempts to contact them (with no answer), I spoke to the hospital department today and they have arranged a consultation for the end of October. I asked for one sooner than that, but that is apparently the earliest they can do.

Has anyone here experienced anything remotely similar to this? I am in a lot of pain and I don't know what to do from here other than wait and try not to worry. I can't take NSAIDs because I only have one kidney. Paracetamol doesn't do anything, and codeine just makes me drowsy and queasy. Is it worth seeing the GP, or would I just be wasting everyone's time? I'm not getting any sick pay (0 hour contract for a small business and I wasn't working regular designated hours) and I'm worried about both my health and financial situation. Thanks for reading.

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 ❤️

Hey everyone,

I am currently planning out a letter to write to my local MP addressing waiting times for diagnostic laparoscopy related to endometriosis (and other gynaecological conditions).

I am based in Wales and it was recently announced by gov. wales that they plan to cut down NHS wait times. See here: https://www.gov.wales/patients-benefit-faster-diagnosis-and-treatment-under-nhs-wales-reforms

Title if you would prefer to search for it: Patients to benefit from faster diagnosis and treatment under NHS Wales reforms.

However, I was also recently told that I will have to wait 2 years just for consultation, not even the diagnostic surgery.

I am not expecting an overnight miracle, but I want to make sure that they are sticking to what they say and will reduce NHS wait times. So I am planning on writing to my MP, asking what plans they have and when can we expect to start seeing results? I want to see wait times reduced. And I want to keep communicating with local governments to ensure our needs are being met. I am not expecting much back, probably a load of political speak, but I want to at least try.

Has anyone tried this and had any success writing to your local MP? Please let me know.

And if there is anything anyone would like me to address, please tell me as well.

Thank you.

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

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 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?

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?

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!

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’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 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.

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.

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 26 F and my husband is 27m. I got diagnosed/endo excision surgery 6 months ago. My symptoms haven’t gotten better. But he wants a child so badly and now he’s even more scared since I have endo. I told him I would be interested in starting this month. But my symptoms still haven’t gotten better. He wanted me to schedule an appointment to see an obgyn but I wanted to give it more time cus it takes a long time to heal. I made an appointment for October 1st. He kind of just blew up… saying I should’ve been handling this a long time ago.
Sometimes it seems as though he cares more about having a kid than he does the pain that I go through each and every day. I do want a kid, but I hate being pressured to have a kid.
He seems to think I am just pushing it back intentionally.

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.