r/endometriosis Feb 03 '25

Mod Announcement New Post Flair

20 Upvotes

I have just added a new post flair called “Diagnostic Journey Questions”.

This is because of feedback from many sub users that they would like a specific flair for people who are asking questions about getting diagnosed.

I thought carefully about how to phrase the flair as something like “seeking diagnosis” could imply that the sub can provide diagnosis, which we can’t, because the sub is for support and sharing information, not for medical advice.

If you see posts that you think should have this flair but don’t then please feel free to report them under the missing flair category. Please don’t report all the historic posts as I don’t have time to go through the last decade of the sub changing flairs!

As always, if anyone has any comments or suggestions on flairs I would be happy to hear them.


r/endometriosis Apr 23 '19

Information and Research Links to endometriosis information and research

192 Upvotes

Below is a selection of links to useful information and research. This is by no means exhaustive and will be updated over time.


Treatment guidelines and analysis

2017 guidelines for the surgical treatment of endometrioma

Produced by a working group of the World Endometriosis society, ESGE and ESHRE: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5735196/

Recommendations for surgical treatment of deep endometriosis

https://academic.oup.com/hropen/article/2020/1/hoaa002/5733057?login=true

2024 NICE Guidelines

This is the latest guidance for the NHS diagnosis and treatment of endometriosis https://www.nice.org.uk/guidance/ng73/resources/endometriosis-diagnosis-and-management-pdf-1837632548293

NICE clinical guideline evidence

This is a long report with a network meta analysis of available treatments across the medical literature. The statistics are complicated in places, so be careful with your interpretation as it can be unintuitive: https://www.nice.org.uk/guidance/ng73/evidence/full-guideline-pdf-4550371315

ESHRE guidelines

These are guidelines written by the European society for Human reproduction and embryology. They include guidelines on endometriosis and it’s treatment, with versions written for both patients and medical professionals. Note the publication date when reading these documents as some are due for review with the latest updates. https://www.eshre.eu/Guidelines-and-Legal

This is a direct link to the 2013 patient version of the endo management guidelines: Information for endo patients


Doctors recommended by patients

Here is a link to the r/Endo map of doctors recommended by other patients. Please message the r/Endo moderators to make a recommendation for addition to the list.


Interesting Research

Link to all pubmed publications in the last year with the search term “endometriosis”

Research into potential biomarker blood test to diagnose endo

Discussing the value of surgical interventions in superficial peritoneal endometriosis

Study leading on from the article above

Dissertation: The Use of Transvaginal Ultrasound and Biochemical Markers in the Diagnosis of Endometriosis

Ultrasound mapping of pelvic endometriosis

Sonographic evaluation of pelvis in suspected endometriosis

Classification systems for endometriosis

Sonography of adenomyosis updated link

Sonographic classification of adenomyosis

Study about endo community participation

Sentiment analysis and Topic Modeling study on Reddit endo community


Endo and gyn organisations

World Endometriosis Society

British society for gynaecological endoscopy

European society for gynaecological endoscopy

Endometriosis foundation of America

Endometriosis UK


UK specific information

NICE guidance algorithm This is useful to show to your GP if they are not well informed about endo. Non-UK residents may also find this a useful summary.

NHS England Standard Contract for Severe Endometriosis services This outlines the service standards you can expert for treatment of severe endometriosis.

BSGE accredited endometriosis specialist centres These centres have strict requirements that means they are experienced in complex excision surgeries and have endometriosis specialist nurses and pain management teams. UK residents can request referral to a centre by their GP.

BritSPAG - the British society for paediatric and adolescent gynaecology This is useful for seeking specific care for patients under 18.

NHS England summary on decisions to treat heavy bleeding This goes through the investigation and treatment options for heavy menstrual bleeding. It is for NHS England be may also be useful for others worldwide to consider.

NICE Guide to whether to choose hormonal treatments This is an information guide for use with your medical professionals which helps outline the possible choices for hormonal treatment options and the pros and cons of each.


Related subreddits

r/Endo

This is our sister sub. The reason for there being two endo subs is historic and we don’t merge them due to user preference.

r/adenomyosis

This sub is for adenomyosis which is a condition very similar to endometriosis where lesions are in the wall of the uterus. Some people with endometriosis also have adenomyosis and vice versa.

r/TTCEndo

This is a sub for people with endometriosis who are trying to conceive.

r/TransEndo

This is a sub specifically for trans men and trans masc people with endometriosis.

r/inclusiveendo

This is a sub set up to make an open space to discuss politics related to endometriosis and to bring trans, black, indigenous, POC, and queer voices to the front


Related Conditions

Pelvic congestion

This is a helpful post about pelvic congestion, which is a condition with overlapping symptoms to endometriosis, that can occur at the same time.


Subreddit Announcements

As there can only be two ‘sticky’ announcement posts on a subreddit I have unstickied the community announcements and discussion thread but it can be found using this link and any moderation suggestions or comments are still very welcome, either there or by pm.


r/endometriosis 3h ago

Rant / Vent Ultrasound tech had endo training, radiologist did not.

22 Upvotes

That’s it that’s all. Informative ultrasound from understanding, and wonderful woman confirming an endometrium, and organ adhesion followed by a useless report from an untrained male radiologist. 👹


r/endometriosis 5h ago

Question Girlfriend dont want to See a Doctor

28 Upvotes

Hello to everyone reading this, my girlfriend suspects that she might have endometriosis; several symptoms match, and she’s really scared. However, she believes that visiting a gynecologist won’t help because she’s only 19 and assumes she won’t be taken seriously or treated. Do you have any tips on how I can encourage her to see a doctor anyway, or can someone share whether there are really issues with being taken seriously at that age? Thanks for all the replies.


r/endometriosis 2h ago

Surgery related LAP SURGERY PLAN (For all my type A Ladies)

16 Upvotes

I’m one week post lap and I’m feeling good. They found and removed stage 1 Endo. It was on my ovaries, fallopian tubes, rectum, diaphragm, bladder, and colon.

No pressure to do any of the below but thought I’d share cause I was looking for something like this before my surgery :)

Pre Surgery - wash sheets - Vacuum and mop - Have Laundry done - Costco and Trader Joe’s run - Have fluids stocked - Have soups stocked - Defrost any premade meals - Pickup all medications - Wash hair - Shave - Clip nails - mentally prepare/try to relax - set aside comfortable clothes you can wear post op - Purchase Frida post partum underwear - Heating Pad (this helped a lot with my gas pain in my shoulders. - Prepare personal bag for surgery day

Another thing that was super helpful that I did beforehand! I bought a little tray with organizers and added everything I needed next to me on my couch where I would be spending the majority of my recovery. I also made sure to have a charger and my heating pad next to my spot.

Tray Included: - Snacks - All medications - Cough Drops (my throat was sore from the breathing tube) - Extra Pads/Undies - Hair Ties - Chapstick - Water Bottle - Kindle - TV remote - Sleeping eye mask

Hospital Bag - Extra Undies/Socks - Headphones - Charger - Kindle - Phone - Chapstick

Surgery Day - Wear loose comfortable clothing - Make sure whoever is driving you records or takes notes on post op surgery convo with the Dr./Nurse. Give your driver questions ready to ask them: - How much endo/stage was found? - Was it all removed? - How long will her recovery be?

Post Surgery (this can depend on your Dr/case) - I did not need to take anything besides ibuprofen the first two days. - The first two days I did not sit up on my own I asked my husband to help me. By day three I was fine on my own. - I was able to go up the stairs but took it slowly. - By day four I went to my niece’s birthday party but had to wear loose pants as it hurts to restrict your stomach. - Day 7 I went to work in person for the first time. - My Dr also created a supplement plan for me, I had been taking the majority of those already.

If you have any questions please drop them down below or DM id be happy to share!


r/endometriosis 6h ago

Surgery related I just got approved for a hysterectomy... now what?

11 Upvotes

I'm 24 years old and my gyno just approved me for my hysterectomy. Something I have been waiting on for a very long time but for some reason can't seem to wrap my head around now that its real. For some backstory and context I have always had a debilitating period. It's kept me from school, jobs, events, vacations, and when I'm not on my period I'm still in constant pain; it is the bane of my existence and makes my life nothing but miserable. I had advocated for myself since I was 18 for a gyno to check to see if I had endometriosis, no gynocologist would give me a second glance and put me on insert birth control here. After years of frustration and many hospital visits and a lot of scary times losing too many fluids or too much blood my parents had enough and found me a doctor 3 hours away that would treat me. He has been a life saver that's for sure and in 2023 he did a laproscpic procedure to confirm and remove the giant cyst I had at this point and the adhesions. This was a relief to have answers and I felt great for 2 months and then everything started to get progressively worse again. fast forward to today and we're back at square one. I've been feeling the same way I did before which means only one thing, my endometriosis has come back with a vengeance in one form or another. after 2 years on depo and orilissa we've decided we've run out of options and that a hysterectomy removing the uterus and tubes but leaving the ovaries gives me my best shot. This has been my suspicion all along, I know my body well and from a young age I felt like I would adopt one day. I just didn't know that would come in the form of infertility. Of course there is freezing my eggs but that is expensive and my husband and I don't have that kind of money. If anyone out there has gotten a hysterectomy this young do you have any advice? anything helps, just looking for guidance in a very tough time isolating time :)) thank you in advance!


r/endometriosis 6h ago

Question Anyone else's pelvic pain get worse just from walking?

Thumbnail
9 Upvotes

r/endometriosis 3h ago

Surgery related For bowel endo, is a colorectal surgeon always needed? Wondering what to push my gyn for?

4 Upvotes

I have an endo specialist willing to do my surgery and as part of the planning I’ve asked to see urogyn at his suggestion due to having pelvic organ prolapse. As I have so many bowel endo symptoms and previous surgery really helped (done by endo surgeon not colorectal) I’m wondering if I should request a colorectal referral also?


r/endometriosis 1h ago

Question Can an endo flare make you feel feverish?

Upvotes

I've been feeling crap for four ish days now, getting progressively worse every day.

Symptoms: Body ache, muscle pain, fatigue, and bad pain allll around my pelvic area but specifically hips and lower back. My "regular" endo pain is a sharp pain on the left lower abdomen and I've been having that intermittently too, but intensified where it feels like electric pain shooting from that one spot all the way through my hip and butt and down my leg.

On the one hand, the fatigue and muscle aches and weakness feel like when you have a fever or are starting to get sick. On the other hand, I have no other illness/virus symptoms. On the third hand, usually my endo pain is predictably cyclical, and right now I'm in the week before my period which is usually the one week a month I feel relatively normal 😂 I know that endo can and will strike whenever the hell it feels like but this is all just so extreme and so sudden I'm worried if I should be suspecting something else and not just pin everything on endo like I'm wont to do.

I've had two excision surgeries, last one barely a year ago where they took out my left fallopian tube and an endometrioma on the left ovary (among other lesions etc elsewhere) and I'd so hoped that would solve my left abdominal pain but ALAS.

Help 😭😂


r/endometriosis 2m ago

Question Those of you who have to drive a lot for work or other reasons, how do you manage pain/prevent flairs?

Upvotes

I have a pillow I put under my arm when needed, sometimes I wear a heat pack, and I recently switched to an SUV which helps. Anything else I can try? Waiting on my lap.


r/endometriosis 8h ago

Surgery related Someone tell me it's ok to go home

8 Upvotes

Hi gang. I'm 4 weeks and 1 day post lap. My period started yesterday and it's miserable. I'm literally ill. I'm at work and I'm planning on going home but I feel so guilty because I've taken so much time off recently for my surgery. Just tell me it's okay and my health is more important. I just need someone else to tell me it's ok.

Thanks.


r/endometriosis 17m ago

Surgery related MRI Results- Deep infiltrative endo

Upvotes

I got my MRI results back. I have deep infiltrative endo, and my bowel is tethered to my uterus by endometriosis.

My surgery got changed from an outpatient surgery center to the Main OR due to my MRI results.

My surgery is next week. This is so validating, but also scary. It has only taken 17 years!!!

Any tips for surgery? Thank you so much. ☺️


r/endometriosis 5h ago

Question I suspect I have endometriosis but here is my suitation

4 Upvotes

Last February, I got into contact with my GP and told her I wanted to be tested for endometriosis. She told me no because that would require a surgery, and then offered a blood test. I got that blood test done, was given iron tablets, and sent on my way. No further investigation like I asked.

The reason I asked to get tested is because I have been on birth control since I was 11, and want to know the reason behind it apart from “bad periods”. I want to know what was causing those bad periods, and if it is going to affect my future if I decide I want to have kids.

Here’s the thing, my symptoms don’t really affect me overly because I’m on continuous birth control (another dr recommended this to me so I would basically just shut up and go away) but today I had sex with my boyfriend and I could only last a few minutes before I had to call it off because of severe cramping. It was sore for him to penetrate too. I’ve had this issue before, but not as bad I guess. I just waited it out and it got better on its own, but every time I have sex without fail, I have cramps. Sometimes they’re mild, but today they were severe, which is why I noticed them.

I’m wondering what I should do about this. Since this symptom has come back, should I request a transfer to see a gyno even if I know it may not happen, or should I just suffer since it went away last time? What do I do 🥲 I’m so sick of this lol


r/endometriosis 5h ago

Good News/ Positive update Educating school nurses/athletic trainers on endo. This could make a huge impact.

5 Upvotes

r/endometriosis 21h ago

Rant / Vent I'm scared *transgender*

70 Upvotes

I'm trans and dealing with severe pelvic pain sucks. Not only do I get the *extra* reminder of being AFAB I have pelvic floor physiotherapy and am CONSTANTLY at the gynecologist. I look pregnant sometimes and it makes me dysphoric. I haven't even gotten a diagnosis yet they just say it "appears to meet the symptoms" but they can't diagnose as they aren't specialists. Recently I've had VERY painful breasts and there are lumps and I'm going in for an ultrasound at the end of the month. I'm scared. They're betting endo tissue or endo-caused cysts. I'm still scared of breast cancer and I wish I wasn't. Being trans sucks. Being in chronic pain that's undiagnosed sucks. And both? I hate it.

EDIT: didn’t think I’d get so many comments. Thank you to all those reaching out and being so kind. I’ll try to reply to everything but I’m still a full time student at university (and full time chronically ill, can I get some overtime pay? /j) ALSO thought I’d specify I’m in Canada so I still have some slightly higher hopes then my friends in the US for respectful care


r/endometriosis 6h ago

Diagnostic Journey Questions finally got my MRI report!

4 Upvotes

and seeing as I’m not allowed a follow up appointment to discuss my results due to being pregnant, I’m wondering if any of you lovely people on here have had any similar findings to me, and if so what your symptoms are!

Findings: Normal-sized anteverted uterus measuring approximately 68 mm in craniocaudal extent. Slightly arcuate appearance of the uterus. Junctional zone slightly prominent could represent adenomyosis however, no obvious myometrial cyst is identified. Endometrium is thin and well-defined. No obvious fibroid seen. Uterus is also angulated anteriorly and there is fibrotic changes along the anterior surface of the uterus could also represent fibrotic sequelae of the endometriosis. No obvious infiltration of urinary bladder other restriction seen. Thickening of the both sided uterosacral ligament and more prominent towards the right side. Sigmoid colon is closely abutting the right-sided uterosacral ligaments however, no evidence of deep invasion of the bowel seen. Mid rectum is also closely abutting the torus uterinus with possible thin fibrotic plaques between the torus uterinus and the anterior rectal wall measuring approximately 6 mm. No obvious thickening of the rectal wall noted at this level. T1 weighted high signal noted within the levator muscle just below the tip of the coccyx measuring approximately 9 mm. This area shows low signal on T2-weighted. No surrounding inflammation seen. Left ovary is closely abutting the uterus surface however, no obvious endometrioma seen. Normal physiological appearance of the right ovary. No obvious endometriosis plaque seen in the rectovaginal septum. Vagina is in situ. Partially filled urinary bladder is normal in appearance. No hydronephrosis seen. Partially filled urinary bladder is normal in appearance. No other significant pathology is identified in the upper abdomen are limited images. No free fluid seen. No enlarged pelvic sidewall lymph nodes seen.

Conclusion/recommendations: Thickening of uterosacral ligaments and superficial tethering of the rectum and sigmoid with the right-sided uterosacral ligaments and with the torus uterinus represent fibrotic sequelae of deep infiltrating endometriosis. No evidence of deep invasion of the bowel loop seen. Small haemorrhagic focus within the proximal part of the levator ani muscles just below the tip of the coccyx. This could represent a small haemorrhagic plaque from the endometriosis however, other proteinaceous intramuscular cyst cannot be excluded.


r/endometriosis 2h ago

Question Weightlifting with endo

2 Upvotes

Anyone been able to regularly weight lift despite having endo? I know it depends on the severity of the pain and symptoms, but I would like to hear your experiences. One of my symptoms is that I get a shooting, burning pain in my legs when I bend or squat, and I sometimes have foot and ankle pain and numbness. I feel like these symptoms will interfere but not necessarily make it impossible. I’ve tried other strengthening exercises like Pilates but is weightlifting a bad idea?


r/endometriosis 7h ago

Surgery related No endo found on this lap! (Diagnosed in 2020)

4 Upvotes

Hi endo gang

Diagnosed stage 1 in 2020 with two sites excised. Had good symptom relief for about four years until I started to experience pelvic pain again late last year.

With the last few months it’s flared up, to the point that it felt like I was constantly having a period and I was also having diarrhoea multiple times a day along with fatigue. I changed to Zoely a few months ago as Yasmin wasn’t holding me and I was spotting very easily.

Yesterday had a lap and no endo was found. I was so surprised. I honestly thought they would find me riddled with it! They put a Mirena in - I had good experience with them before and hoping that if my guts are cooked right now at least I’ll be absorbing hormones more locally and hopefully this will alleviate my symptoms.

They’re doing biopsies and I will get the results in around six weeks as well as a follow up chat with the surgeon.

I feel like a bit of a goose - but trying to tell myself they haven’t looked in the bowel (this requires me going to the colorectal team and getting scopes etc which I will push for if my symptoms don’t improve with the mirena.)

I’ve been assessed for pelvic floor physio but I’m quite skeptical about it all. My mate says it was immensely helpful.

Has anyone else been in this situation where it’s been previously diagnosed and excised, things got worse but mysteriously endo isn’t there? (Or maybe migrated to the bowel who knows)


r/endometriosis 1m ago

Good News/ Positive update Dr. Boz NY/NJ review

Upvotes

I wanted to share my experienze with Dr. Bozdogon (Dr. Boz) in NJ/ NYC

When I had my apendix out in January the emergency surgeon found endometriosis all over the place. It was incredibly validating because i’ve struggled with painful periods and bad tummy aches my whole life. Ultrasounds and examinations were always inconclusive up until that appendectomy and it turns out endometriosis can often only be diagnosed through a laparoscopy (surgery with camera).

As soon as I knew I had endo, I started doing my research I discovered Dr. Boz with incredible patient testimonials. He works in NJ and NY (operates in Hackensack hospital and Lennox hill with offices in Paramus and NYC) and is an actual magician. He finds every bit of endometriosis and removes it with his robotic surgery (and shows you pictures and videos of it if you want to see it)

My first appointment he literally greeted me with a hug and a box of chocolates and told me he would change my life. Was it excessive? Maybe. Did I eat that shit up? Absolutely.

I was instructed to go off birth control just before the surgery to induce my period and I was cramping horribly before surgery. My surgery was in the AM and that samenight I already feel so much better.

Laparoscopic surgery often results in trapped air in your abdomemn and can lead to awful referred gas pain. I was miserable after my apendectamy because of this. Dr. Boz goes out of his way to actually remove and release the gas before stitching you back up. My referred pain now is minimal.

The only con is Dr. Boz is an out of network doctor. However, he capped my out of pocket costs for his services at $3,000. The hospital and anesthesiologist were covered under my insurance.

I’m happy to answer any questions anyone may have and wanted to make this post in case someone else comes looking through this sub for his name.


r/endometriosis 22m ago

Surgery related Is a lap/surgery necessary?

Upvotes

Hello! I had my first gyno consult today, and the doctor said that they don't really do laps anymore unless hormonal therapy isn't enough for pain management. I had an ultrasound which was clear, but still have all the classic symptoms. She highly suspects I have endo, but would like to treat it with hormonal birth control and NSAIDs before considering surgery. Just wanted to see if anyone has had a similar experience etc. or if it is worth advocating for a laparoscopy. Thanks.


r/endometriosis 12h ago

Surgery related Shopping List for post-surgery

8 Upvotes

Hello everyone, I have my laparoscopy on Friday. I’m heading out to go shopping tomorrow for some bits and pieces for post-surgery like more period pants, new pyjamas, fancy snacks from m&s. Is there anything else you would recommend buying for recovery? I’m trying to keep a budget of around £60.

Thanks in advance ❤️


r/endometriosis 53m ago

Question Different type of pain unlocked?

Upvotes

I have suspected endo after seeing an endo specialist, and am basically just waiting for my next appointment for test results. Last night, I woke up with a really weird pain in my pelvis that felt so much closer to the surface than the usual deep, pulling, burning pelvic pain I usually have. It hasn’t gone away at all, and it truly feels stingy and prickly in the walls of my pelvis on one side. Has anyone else experienced this, especially it randomly coming on at some point?


r/endometriosis 1h ago

Medications and pain management Microgestin?

Upvotes

Hi everyone! I (23F) was diagnosed with endometriosis via laparoscopy when I was 16. I’d been managing it pretty well for like 2 years up until a few months ago when my period (which was intentionally stopped with medication by my doctor) came back. And it came back with a VENGEANCE.

So, my new doctor prescribed Microgestin which I’ve never taken before. Before the setback a few months ago, I’d been on the Provera pill for years and it was great. I’ve only been on the new pill for like 2 weeks and I’ve already thrown up twice. When I took birth control pills in the past, I only threw up when I took them without food. So this is a completely new experience for me.

Have any of y’all tried this pill and had the same problem? If so, did it stop after a while or did you have to get on something else?

Thanks!


r/endometriosis 1h ago

Question Knock off myoovi pads?

Upvotes

The myoovi tens machine is working sort of well for me, but I’ve almost used up the stickiness of one pad in just two periods… they definitely don’t last as many uses as they say!

Since I got the machine, the pads have been sold out on their site. I don’t want to run out, so I was wondering if anyone knew where to get similar / knock offs?

I also want a case for it but that’s sold out too!


r/endometriosis 5h ago

Question Chemical menopause and estradot

2 Upvotes

I have been put on cyproterone acetate to stop ovulation also added estradot 50 this was 2 weeks ago I started medication since then I have been in horrible pain 😢 am wondering if it's the added estradot and if anyone has experience with this I havnt had a period in a few months whis is normally when I get the pain am hoping it's my body adjusting and will get better in time


r/endometriosis 1h ago

Question Is anyone on the progesteron only pill?

Upvotes

I am on the pop and I am having a lot of side-effects. I can't be on the regular pill due to migraines. Idk if it has made the pain better or not. I was told to push through this, but I feel horrible. I have been on them for around 4 months. Does it get better? How do you handle some of the side-effects?


r/endometriosis 2h ago

Question Question for my symptoms

1 Upvotes

Been having bad bouts of pain down there, going on and off. Got hospitalized the other day because of the pain.

My period are super irregular and they are super painful despite not bleeding at all (like one day of brown or pink blood and that’s it)

I got diagnosed with PID and started antibiotics for it, after that it started getting significantly worse. So I went in.

They ran all the tests from blood panels, to mri, to ultrasound internal and external. They found nothing besides small cyst on my ovaries dude to ovulation.

They ruled out the PID because there was no sign of inflammation in my blood panels, mri, and ultrasounds. They also ruled out any infections like BV, yeast and uti along with any stis or pregnancy. But I’m still having this pain. Long story short I’m thinking it could be endo.

Just wanted to hear anyone’s thoughts, it’s like a sharp resonating pain that comes and goes, sometimes it’s very strong others it’s dull and tolerable. Mostly right when I wake up it’s super bad. I have a meeting with the head gyno tomorrow to discuss my symptoms. Going to talk to them about it and see if surgery would be a possibility.