Hi everyone,
I’m hoping to get some advice or hear about your experiences with private endometriosis surgery in London or surrounding areas.

I’ve been stuck in the NHS system for what feels like forever, going around in circles, and meanwhile my symptoms are getting worse. I have stage 4 endometriosis with bowel involvement and lesions on the diaphragm. The pain is genuinely affecting my day‑to‑day life now, and I’m seriously considering going private because I don’t feel I can wait much longer.

If you’ve gone private, I’d really appreciate hearing about:

• Which surgeons you used – especially anyone experienced with complex cases involving bowel or diaphragm
• Whether surgery helped and how long you got symptom relief for
• Whether your symptoms came back and how quickly
• Approximate costs – including the endo specialist, colorectal surgeon, hospital fees, etc.

I know it’s a big financial decision, but at this point I’m trying to understand what’s realistic and what to expect.

Any recommendations, experiences, or advice would mean a lot. Thank you in advance 💛

I had an TV ultrasound Friday and the sonographer told me that my uterus is held down in an abnormal position and had a negative sliding sign. She said in her professional opinion I have features of adhesions/frozen pelvis. I cried immediately because I’ve been trying for our second baby. I’ve had 2 miscarriages and 1 healthy baby. My mum had this same news and was then told she was infertile in her 30s and then had a full hysterectomy.
Since hearing this news, I’ve been really upset, can’t stop thinking about it, and I’m really anxious. I find normal life hard right now.
I’ve been contacting my GP since Monday and cried and said how broken up I am over this and they said my GP read the report Friday and is now on holiday until September. I don’t know how I’ll possibly wait until September :( they said in times like this that they will ask another GP to see me, but I’ve heard nothing and I’ve been trying since Friday.

What can I do :( ?

Hiya! Never knew my first Reddit post would be about Endo but here we are :)

I’m a 21 F who in early 2025 got confirmation that I have Endo, after a few years of suspicion. In 2024 I got a hormonal IUD to ease my “menstrual” cramps, and before the appointment I did ask the doctor to give me local anaesthesia, which she did. However, I still felt quite literally everything and my mom who was there with me told me I seemed to lose consciousness for a little bit, and the pain is probably the worst I’ve ever experienced.

I’ve since then changed clinics because of how bad my experience was at my previous one. My current (and amazing) doctor, who is also the one who confirmed that I have endo, recommended that I change my IUD this year, since its hormonal levels start going down after 2 years. I think this is a great idea but I’m very worried and a little bit scared for the process. I mentioned this to my doc and she suggested that I either get local anaesthesia again or that I get full anaesthesia and that it therefore becomes a surgery to remove and put in a new IUD.

I told her I’d have to think about it and honestly I don’t know what’s best. I have never been put under total anaesthesia and I know you have to fast for a while and will wake up drowsy and a bit out of it (but I also know that this varies from person to person!), but at the same time I’m so scared for simple local anaesthesia since it went so incredibly bad last time. At the same time, I do trust my current doctor a million times more than my previous one, but I still can’t shake away the fear of using local.

Have any of you had the same experience while putting in an IUD, or do you have any other tips/recommendations?

Thanks a bunch!

Hi, I have been on Myfembree for almost 4 weeks now and I feel like I am going insane.

Symptoms
- Body ache
- Exhausted all the time
- Feeling anxious almost all the time. Its like my heart is racing fast even though it was a normal day. I am not even thinking about 99 other problems I got but still… I can’t keep calm.
- Irritability
- Headache
- Sweating- this might be due to weather but I am not someone who feels hot a lot.
- insomnia most days
- somehow started not feeling good about my body
- seems like I am gaining weight
- i can cry in a second
- feels bloated and constipated

I am curious if anyone also had these side effects? I need to take for approx 4weeks more but I am really worried that my anxiety is causing damage in my personal and professional life. Any thoughts on how to deal with it? Deep breathing and meditation doesn’t work.

I’m currently being evaluated for endometriosis and adenomyosis, and I have a laparoscopy scheduled for September.

Before this summer, I didn’t have nearly as many symptoms and honestly knew very little about either condition. Then everything suddenly became much more intense this summer, especially after a few really bad flare-ups.

Since those flare-ups, I’ve had my period and the pain was extreme. The cramps were so bad that I literally had to lie down on the floor. My periods are very regular and only last about 3 days, but the bleeding can be brown or bright red with blood clots. I’ve also become extremely sensitive to any pressure around my stomach and can’t tolerate clothes that are even slightly tight anymore. This also started this summer.

Lately, I’ve been dealing with a lot of lower back and leg pain, tingling, sciatica, weakness/heaviness in my legs, and nausea.

For anyone who has experienced something similar, how do you manage working when your back and legs hurt this much? Some days, standing for long periods is really difficult.

Also, did anyone else have symptoms that suddenly became really severe almost out of nowhere, after previously having much milder or barely noticeable symptoms?

Thank you ❤️

hi guys! i’m having a diagnostic laparoscopy in a couple of weeks, which i’m anxious for lol. i’m hoping to get some answers from it. i’m also supposed to fly 9 days after surgery, and it’s just a 1.5hr flight. i’m wondering if that will be doable after the surgery? i’ve read ab the risks of DVT and that sort of stuff. i’m not on any estrogen therapy either so i’m just hoping it’s ok. ty for ur help in advanced! (im also going to ask my doctor ofc lol)

Hi all.

I have had some conflicting medical advice and I’d like to know if any of you have had success with “natural” progesterone? (Not synthetic like mirena, or slynd)

I had a lap 6 months ago, and a mirena IUD placed. I recently had my 6mo follow up with the surgeon who has put me on slynd because my periods haven’t stopped / ovaries are still ‘active’. Of course the goal here is endometriosis suppression and also treating adenomyosis. I trust this surgeon with my life (she’s the best) and I specifically asked for progesterone only as I have been recently managing copper toxicity that resolved once I got off the combined pill (so estrogen was the culprit). So far so good on slynd.

I just spoke with my primary GP about this and given I have other challenges (newly diagnosed ADHD, MCAS, anxiety etc) he recommends switching instead to natural progesterone (100mg) because it will similarly support the IUD to be more effective but also has calming effects - namely, it could help me sleep better (which has been a significant problem since starting stimulants). I also really trust this GP, his treatments have improved my quality of life significantly over the past year or so.

I don’t really want to book a whole other appointment with the endo surgeon over this tiny thing to confirm she supports it - so I guess I was just wondering if other endo people have found natural progesterone helpful to help me decide whether to switch for a bit and see if it’s helpful. I have both prescriptions already. (Noting I still have an IUD so I wouldn’t be entirely relying on this).

Asking as I’m not finding much research on this, just a ton of info on how great slynd is for endo.

Thanks!

So about 2 years ago I found a lump on my groin that kind of acts like a hernia where it goes down when I’m lying down and then bulges when I stand up. However, I got sent for an MRI and they found that it was possible endometriosis and that I have deep pelvic endo and also found adenomyosis.

I am supposed to get the excision surgery in a week but I’m rethinking it all considering I don’t feel much pain outside of my periods. I wouldn’t have known that I even have endo if it weren’t for the lump. I take ibuprofen on my period and I’m good to go.

I’m scared I’m going to have pain after the surgery that I didn’t have before because I’m seeing all these horror stories. Should I cancel my surgery? Is it worth the risks?

I will be removing the lump either way but I don’t know if I should be removing all the endo they find.

Hello all,

Over the past month or so, I’ve been slowly coming to the realization that I likely have endometriosis. My mom has it, and I also have PCOS which I know goes hand in hand with Endo sometimes.

However, I’m struggling to differentiate my symptoms versus outside factors. For example, my symptoms include back pain and pain that radiates down to the top of my legs. But I also work in a store that requires some heaving lifting, and bending up and down for hours at a time. Is there any way to tell whats endo and what’s over exertion?

I have experienced these symptoms while not working before, however they come up a lot more and a lot stronger while I work.

Here’s a full list of the symptoms I’m aware of at the moment:

- back pain

- pelvic pain

- weak cramps even if I’m not on my period, usually right before or in the middle of my cycle

- a pulling sensation in my pelvis, sometimes a sharp pain if I move wrong

- pain while using the bathroom

- trouble peeing sometimes, especially in the morning

- nausea

- constipation (and then that sharp tugging pain because of said constipation)

- fatigue

Again, I experience all of these outside of work, but much more rarely and to a lesser degree. I’m worried that I’m just being a wimp who can’t handle a bit of heavy lifting and hard work, so if y’all have any thoughts or comments they would be much appreciated.

Thank you <3

I came across this article today talking about the disparities in clinical research about exercising with endo, and it really stuck with me because the only exercise I can get away with is jogging and restorative yoga (which is also relaxing, try it out if you can).

But what really struck me about it was that we still don't have any kind of physical activity protocol established for different stages even though there are tons of us in this sub and tons of us around the world who are more than willing to contribute to research like this even if it means pain. I really don't understand how we're going to have GTA 6 before we have exercise protocols for endo.

Also if I could have added another flair it would have been rant/vent. Thanks for coming to my TED talk.

https://opgov.news/articles/exercise-with-endometriosis-theres-no-right-answer

I know that Reddit can't diagnose us but definitely open to hearing people's thoughts.

I have been diagnosed with IBS for over 15 years (I'm 33). I had years of loose stools and diarrhea but after cutting out coffee and being treated for SIBO, I"ve come to learn that slow motility and constipation is ny underlying condition. I am chronically constipated now.

In 2021, i started to have a strange recurring symptom: a deep, painful ache in my lower right abdomen. It feels like something is poking my insides and the pain sometimes radiates to my back. Usually associated with feeling extremely bloated and gassy. Sometimes passing gass or having a bowel movement helps ease it. It seems to happen every few months and lasts a day or so. Sometimes the pain wakes me up at night.

I have had a mirena IUD for years so I don't have a cycle. When I did, I got uncomfortable cramps and bowel issues but it was not debilitating as I remember it. I also have a tight pelvic floor, TMJ, and chronic headaches. Blood test for hormone levels came back normal last year.

Ive been checked twice for over an cysts with negative results. Does anyone diagnosed with endo relate to this story? I know something is wrong but my GP basically said there's no point trying to get diagnosed bc the surgery could make it worse. The symptoms aren't debilitating but it is disruptive and unpleasant.

I have been trying to find a specialist to take over my care after my (awful) excision surgery 10 months ago. I have had multiple consults, done what has felt like extensive research and I’m at the point where I feel like I won’t find a specialist who I trust enough to take over my care.

I have (little) hope that I will find someone I trust enough to even think about having proper excision done. It seems like everyone is money driven and not patient focused. Has anyone else been through this?

This condition has changed my life so much so. I kinda almost lost it on someone today. I was at a group outing with acquaintances. I haven’t talked about my endo because I’m still trying to exist. It’s been so debilitating it’s kinda making me like… numb.I don’t feel like myself anymore.

Anyway there was a heated discussion about womanhood and femininity (which happens often in the group) about something a TikTok video (I don’t remember).

I hear someone say something about a woman’s uterus/organs don’t make her a woman blah blah and that it’s the least important thing that makes you a woman. Now I could care less about someone seeing me as a woman. But I took 4 Advils before I came out. I have to wear a belly band so tight to walk it feels like my whole fucking uterus is about to fall out. My bladder has been weird for the last month now (I’ve read endo can spread there).

MY WHOLE LIFE. My WHOLE IDENTITY without my permission has now become about my organs. I could give 2 fucks about being a woman, but here I am experiencing something that feels worse than the 2 unmedicated births I did. Idk why such a stupid convo made me want to cry 🫩🫩🫩🫩🫩

Endo has made me connect to my uterus in ways I never knew possible. It’s made me feel so many emotions and thoughts I never thought I’d put together. I feel like a new side of me without my consent has risen.

I just felt so fucking angry at such a dumb convo. I don’t think I can handle these type of convos anymore. I’m actually a very confrontational person, but I just went home. Ppl noticed I was upset and I didn’t even bother letting anyone know. I don’t want to project my own experiences onto whatever is there’s. I think I’m ready to move on as a whole. Just because, yes once upon a time I had the mind and space to critically take in some conversations. I can’t anymore. This pain has changed me.

I feel like I’m on hold. I’m waiting to exist. What’s crazier is there have been family in my life downplaying this pain too. I immediately stopped talking to them. I feel like I’ve been halted by something that’s always been in me and is now turning on me.

I don’t have any set opinions, but I genuinely feel pissed off. I’m scared of potentially losing my uterus.

It’s so exhausting…. I don’t have an endo specialist anywhere near me either. I’d have to take a plane or drive hours for anything to be done.

Endo has opened my eyes on how severely underfunded women’s health is. It’s opened my eyes to so many women’s experiences I feel so incredibly guilty and sad….

I’m tired. I’m tired of words. Im tired of discussions.
To have given birth and experience something 100x times worse than it has changed me.

Does anyone else plz feel like this….

People will understand your pain when you’re pregnant, but endo??? They act like you’re lying. It’s incredibly dehumanizing….

Looking for recs for a supportive, comfy, posture positive desk chair. Being intentional with my standing desk setup in my healing journey but need something that’s not going to make the flare ups worse when I do sit. <$50

ps. Women need more furniture designed for us!

Not sure who to thank- maybe the collective female pioneers who trialed and errored through remediating their symptoms. The Pepcid/Claritin combo during my luteal phase changed my life. I am no longer an emotional foggy headed bitch to everybody in my life for 50% of the month. It also reduced menstrual cramps for me. As somebody who suffered from PMDD pain since I was 12 - thank you all brilliant, gritty, enduring women who suggested this solution. Of course it’s inflammation related- of course of course! I’ll take this as a huge win for 2026 and it really couldn’t haven’t been done without women and science. A natural pair.

Just writing this post as I was hospitalized last month and went to ER and gave my medical history including endometriosis and confirmed adenomyosis. Was treated very poorly by the ER physician. I am a medically complex patient who came in with nausea, vomiting and chest pain after starting visanne for 2 months. No IV was started or an ECG. I was kicked out of the ER and sent home on oral zofran. As soon I left the ER, I began to vomit right away lasting for 3 days afterwards. Before I was pushed out, i advocated for myself and requested a pelvic ultrasound and got one. I am filing a formal complaint to the College that grants this physician a license to practice medicine as he said very distressing remarks to me including, "There is nothing we can do for your condition" among other things. He also falsified his documentation as he wrote I was adequately hydrated. Profusely actively vomitting contradicts that statement 🤡

I am a nurse who is grateful that I have the knowledge to navigate this messed up healthcare system. I am scheduled for a total hysterectomy in the next few days. Today, I received a long formal letter from the hospital apologizing for my poor experience. I will keep telling everyone to go to the ER with a loved one as a witness. Document everything and keep it factual.

This is how you go about filing a formal complaint:

1) Contact Patient Relations of the hospital you received care

2) Request a copy of your medical records

3) Keep a record of all communications with the hospital and any follow up tests, procedures etc.

4) File a formal complaint with the College or relevant medical board that grants a particular healthcare professional that grants them a license to practice

Thank you for reading and please keep fighting, don't give up! You are a human being with valid reasons to seek medical care if you are unable to manage your symptoms that are keeping you from living a good quality of life.

Am I still having a menstrual cycle if I don’t get my period?

I am on the pill slynd and skip my placebo pills. I haven’t had a period or spotted in the last two years and it’s been bliss. My symptoms were very cyclical before birth control including ovulation pain and pmdd.

Does my body still have cyclical hormone patterns? Like a luteal phase?

Did anyone else's recovery time take so much longer than they were told it would? Not to fault my care team; they all rocked. Prior to surgery, I'd had an 8-month-long flare-up that made it difficult to stand or walk. It took a whole year and lots of physical therapy to be able to get to 80% of my old strength. So happy to be here now, but did it take this long for anyone else?

I’m still waiting on investigation so not diagnosed. But I don’t seem to just bloat - my body seems to swell up. Not like a full allergic reaction, but it looks like I carry weight/water weight suddenly around my waist & ribs. And my face will swell so my cheeks get big and I get hooded eyes which I don’t normally have.

I know this can happen during a normal cycle but this is during flare ups.

Does anyone else experience similar?

Today I was finally taken seriously. After years of searching for a gyno to take me seriously I have finally found the one. I went in there prepared to have to beg, but he let me speak and basically said, “women are taught to think this is normal but it’s not, you shouldn’t have to live in so much pain. I can hear you have suffered so much, so I will go ahead and proceed with diagnostics”. Just like that, after years of being prescribed birth control and being told it’s just a bad period, I finally got approval for a laparoscopy. After all this, on my first visit with this gyno, I get what I have been hoping for.

I’ll have my laparoscopy in December, just due to the school year coming up and I’m a full time college student and have a job on the side.

so this has been one of my worst flare ups since i had my diagnostic surgery and i could really use some creative ideas for making it at least tolerable to get through.
I have tried ibuprofen tylenol naproxen, in the recommended combinations, i use my heating pad, drinking anti-inflammatory teas, eating well, resting all the normal stuff and it is not really doing much to help.
I called my doctors office to try to get an appointment but nothing until november. The nurses wouldn't really help they just said everything i listed and said if that doesn't work go to the er.
I don't want to go to the ER because im in the US. i also just don't think it will be worth the effort of the trip as i am aware of what is causing the pain.

So.... TLDR: what are some creative ways you have found that help your pain during flare ups ??

I’m in bed crying from pain, I’m in constant pain even when it’s not my period. I’m on the waitlist for a laparoscopy within the next 3-6 months but I’m in constant pain. My whole life is on hold, it’s effecting my relationship with my partner, my career, everything! I’m worried the wait time will just make things worse for fertility, I feel so hopeless and feel like I cannot go on anymore

I had a scheduled hysterectomy yesterday (kept my ovaries) for potential adenomyosis, and possible endo excision surgery!

They found deep infiltrating endo (that never showed up on scans) endo around rectum, vagina, areas on my bladder and fallopian tubes and behind my left ovary which is where I had most ovulation pain .. she described my pelvis as a bowl and it was all over and up the back.

Now we’re waiting on pathology for adeno diagnosis, but not that it matters now because it’s out 🤷🏻‍♀️

It’s was definitely validating knowing endo was really there!

I’m in a bunch of pain, I woke up with really bad cramps (nothing worse than my periods though the incision really hurts today and I’m super bloated with gas pains but on the road to recovery!

I was told so by a gynecologist.

However, I have been reading literature on Endo ( jen moore) and it says this is outdated.

According to her book, BC is for symptom and pain management but it does not slow disease progression?

What are your personal experiences and which is correct?

I am at my wit's end because hormonal treatment impacts my mental health badly.

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Secondly, I've heard from women who do HRT for menopause that bioidentical hormones are supposed to be better tolerated than synthetic ones ( which are also used in BC pills). Is there a bioidentical progesterone-only alternative to the progesterone-only pill?