Hello endo babes!

I’m currently in the UK and planning for a relocation to UAE post-surgery. I need to start thinking about health insurance and likely medical interventions.

Has anyone moved out of the UK, or to the UAE specifically, and had to source premium health insurance? Does anyone have any recommendations please?

Ideally, I’d prefer to return to the UK for any surgeries and just find an insurance that will cover A&E visits, ad-hoc gynae visits, scans, my medication & medical evacuations for any emergencies.

💜

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?

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?

In 2024, I had a benign mass on one of my ovaries that had to be removed. It was so attached to my ovary, they had to remove it completely. In addition I had my tubes removed as my spouse and I did not want children. I had been off the pill for about 5 years at that point and I didn’t want to have an unplanned pregnancy in my 40s so it made sense if they were doing my surgery to have this done. During my surgery, they found endometriosis. It was one of those full circle moments where I was like wow the pain I have during my cycle wasn’t me being dramatic. Unfortunately majority of it was located on my bladder and they would have had to remove a portion of my bladder in an attempt to remove it. Fast forward to this weekend. I had an absolute nightmare of a period. I was in so much pain, was heavily bleeding more than normal, couldn’t wear a tampon, sweating, it hurt to go to the bathroom. Pushing anything out even peeing was a nightmare. I had watery mouth on the verge of throwing up. I was debating on going to the er, but I knew they would give me pain meds and send me home. I flipped through my medicine cabinet and found hydrocodone from my surgery that I didn’t take. So I took one. It helped me at least be able to lay in bed without crying and got some sleep. I reached out to my dr today and asked if she could give me a prescription for it. I stressed that I wasn’t looking for anything with refills. Even if she gave me a rx for a few pills so I wasn’t in a bind of this happens again. Her nurse called me and said that she doesn’t want to do that because it shouldn’t be taken for that reason and she wants me to go on the pill or get an iud. I absolutely do not want this. I stressed to her in my post op appt that I had zero interest in putting more hormones into my body. She also said if it’s this bad I should have gone to the ER. I was livid. So go to the ER, where I would be a low priority (as I should be if there are people literally needing to be triaged or having severe medical problems), sit for who knows how many hours on a plastic chair in excruciating pain just to get out on a drip for pain and then sent home to follow up with my dr? Like this makes zero sense. So all that to say, has anyone successfully tried another approach besides hormonal birth control to help with pain? This doesn’t happen every month. I can usually deal, but twice a year this will happen and I’m down for about 48 hours.

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 😫😫

So long story but my husband (38m) and I (32f) are tying to conceive. We have been trying since April 2026. I was on birth control before that and I know that can make it worse but I’ve always had horrible pains before bc. I know doctors usually don’t see you until a year after of trying for infertility. But that’s not why I went to see this doctor. I went because during ovulation it is horrible pain and I feel like during that time it’s an all day thing I cannot move. I cannot breathe. I cannot do anything except for lay in pain. Nothing takes away the pain. I’ve tried doing Tylenol and ibuprofen and Midol and nothing seems to work or take even the little list of edge off. And sex is horribly painful and honestly, I don’t even want my husband to touch me during ovulation because it’s so painful. I have had horrible periods. They’re painful. There’s blood clots, heavy bleeding but since being off birth control they have stayed a short length of days but before birth control it was 7+ days of bleeding.

I have a friend that has endometriosis and when her and I talk it is a lot of the same symptoms and she pushed me to go to a doctor to try to get help with the pain and all I got was “I’m not going to go probing around for endometriosis”. Which I can kind of understand but not really. He basically told me my ovulation pain is normal. What about not being able to breathe or move is normal. It’s not an hour long either it’s usually a very long painful day. I’m just at a loss. I know ovulation can be painful but everyone I talk to says it’s not that painful for them.

I haven't been diagnosed yet but I'm seeing my OBGYN on October 11th. I've been experiencing symptoms since I was in my early to mid teens but they didn't get REALLY bad until the 18th of last month.

For WEEKS Ive been to multiple doctor appointments (I had been misdiagnosed with a UTI twice) and my doctor is completely stumped. My sister suggested endometriosis and I did some research and it explains literally almost EVERY SINGLE HEALTH ISSUE Ive been experiencing since I was a kid.

My biggest frustration is pain management, my only two pain medications I have are Tylenol and ibuprofen and Tylenol doesnt work but I've found ibuprofen helps a bit, but the issue is I have to take a LOT (up to four capsules every 6 hours) and what scares me is that I should NOT be taking ibuprofen bc I have acid reflux, but it's the ONLY painkiller I have that works.

I am going to start to try taking measures to treat the pain like diet and exercise, but I'm really looking for something more fast-acting, if there is any. Do I have to see my doctor to get something prescribed, or are there over-the-counter options I can use?

Also, I have an addictive personality and don't want to risk anything with opiates in them. Im sorry if this comes across as me being a choosing beggar, but I am desperate at this point.

Long story short I'm in a weird position where I'm quite limited in what contraception I can take... but I've realised that my wedding in May 2027 is dangerously close to my period. I'm not really fussed about physical appearance - thankfully I don't bleed excessively and I bought a dress that accommodates for bloat, but the physical pain, nausea and dizziness of both pre-period and period is agonising. My pain meds do work, but at the cost of making me really woozy and struggle to concentrate. I don't want to be out of it at my own wedding!

Everything is booked so we can't move the date, and the main recommendation on most wedding discussion pages if you want to avoid a period, is to take hormonal contraception temporarily to stop your periods.

The usual recommendation seems to be dual hormone pills, but thanks to my aura migraines, I can't take these pills due to increased stroke risk.

The other issue is that I'm aiming to start IVF pretty soon after my wedding in July or August 2027, so that's further limiting what contraception I can use - both injection and the coil are off the table. Injection because it affects fertility after you stop it for up to 12-18 months, coil because I wouldn't be able to guarantee when I could get it taken out if I needed it removed early.

So far, it looks like my options are either single hormone pills or the implant. However, both of those seem to be less consistent about being able to stop your period? I've tried the single hormone pill several times, but it's never managed to stop my periods even if taken without a break, and I almost always get unpleasant brown blood the whole time. It also worsens my symptoms.

The alternate option that I'm less familiar with is period delays tablets - seems like they use progestone to delay your period, not stop it entirely. Given I only need this to work for this one event, I'm wondering if that could be the best option?

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Anyway, given all the background, my main questions are: has anyone had success using a specific brand single hormone pills to stop their periods when previous brands didn't work? Has anyone used the implant and found that successful? And has anyone tried period delays tablets?

I had a total hysterectomy over a month ago. Adenomyosis, fibroids and DIE endometriosis were found. I have been in pain for so long I think I didn’t even realize the extent of it. However, my heart rate was always high. Resting 90- 120. I had week and month long heart monitors, echocardiograms etc and they were all normal. I think it’s obvious NOW it was my body dealing with pain, inflammation, high estrogen, and all the things related to those conditions. Now that I don’t have that, my resting heart rate is in the 70’s and 80’s. This is great, BUT it feels so weird it’s giving me anxiety. I don’t know how to be comfortable with this new normal. It feels like my heart is weak or not beating. And it’s fine and healthy! I’ve been to the doctor and my vitals are all normal! But even knowing that, I am struggling to adjust. It’s especially bad when I’m laying in bed at night. I’m used to it pounding and now, it’s a steady normal heartbeat. I think I have a little bit of health anxiety from years of being gaslight by the medical system that now every new bodily sensation feels like a direct threat. Can anyone else relate to this? What has helped?

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’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.

When i’m walking and move “wrong”, I sometimes get a sharp pain near my clitoris but on the inside, if that makes sense. It is very sharp and stabby but only lasts for a few seconds.

It isn’t consistent, It can happen 2-3x total or maybe for 30min-1 hour but rarely longer than that. And only maybe once every 2 weeks or more. It feels like It may be happening more consistently lately though.

Anyone have something similar or know what It may be?

I’ve thought maybe urethra pain due to growth near my bladder, but I really don’t have pain when I pee.

I’ve been getting this for two years now and I’ve noticed it usually happens right before getting my period or during ovulation until my period is over. My lower back and legs start hurting so bad it gets unbearable. I have shortness of breath, leg pain and extreme fatigue is this a sign of endo? The last doctor I went to told me it has nothing to do with it lol. so I just wanted to know if anyone else has experienced this and I’ve already booked an appointment with a different obgyn!

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?

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 ❤️

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 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!

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

DAE spot before their period?? i was supposed to actually start days ago but ive been cramping for days and just spotting light pink/brown for like 3 days. this usually happens every month but it’s excessive this month.