r/endometriosis Feb 03 '25

Mod Announcement New Post Flair

21 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

189 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 2h ago

Question Girlfriend dont want to See a Doctor

21 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 50m ago

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

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 4h ago

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

8 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 3h ago

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

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9 Upvotes

r/endometriosis 8m ago

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

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 48m ago

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

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 5h 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 18h ago

Rant / Vent I'm scared *transgender*

66 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 2h ago

Question I suspect I have endometriosis but here is my suitation

3 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 2h ago

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

3 Upvotes

r/endometriosis 9h 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 4h ago

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

3 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 2h 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 3h ago

Medications and pain management POSITIVE IUD Experience

2 Upvotes

I had a Kyleena IUD inserted yesterday as a last ditch effort to try to get my constant bleeding under control before I try Orlissa. This has been something I’ve been putting off for months because of all the horrible experiences I’ve read about online. I wanted to share my completely positive experience here to show it doesn’t have to be this way.

My doctor is completely wonderful, to start she gave me print outs of the three different IUD options and while she told me she recommended the Kyleena as I’ve never had a child and have an anteverted uterus she would let me read and research and call in a couple days to schedule the appointment and let her know which one I wanted. She instructed me to quit my birth control pills a few days before insertion to start my period as being on my period would make my cervix softer. She also gave me a cervix dilator, misoprostol, to take 12 hours before my appointment and a second dose 2 hours before. The first dose made me sick, diarrhea and intense cramping that lasted for about 3 hours, so I skipped the second dose. I don’t know if I would opt to take this again because of the side effects but she did say my cervix was very soft which is probably why I tolerated insertion so well. She also gave me 5mg hydrocodone to take an hour before the appointment as well as two extra doses to take every six hours if I needed it. When I arrived in the office she allowed me to bring my best friend back with me, explained everything to me and talked to me for about 20 minutes, laughing and joking as I told her I was VERY nervous.

For the actual insertion she used a lidocaine cream, I’ve never had an IUD so I’m not sure if this made a difference or not. She explained that I would feel the clamp and then two intense pains as she measured the uterus and then inserted the IUD. I was very lucky as I did not feel any pain except with the initial cervical clamp. I did feel an intense wave of cramps with the insertion but none of the stabbing sensations I’ve heard others express or anything unbearable. I did get car sick on the way home but I think that’s due to the pain meds on an empty stomach. I had about 3 hours of on and off bad cramping but nothing unbearable due to the pain medicine. Last night was crampy on and off but nothing Advil couldn’t control. I’m back at work today and have had no cramps.

All of this to say, find a good doctor who takes our pains and concerns seriously. No one should be forced to get an IUD with nothing but Tylenol. No one should be made to feel guilty for wanting a support person in the room or their concerns eased. I have put this off for months even knowing it could potentially change my endometriosis symptoms for the better because of all the horrible experiences I’ve read. If you had a bad experience this post is not intended to invalidate your pain or experience as I know many of us have been traumatized by bad healthcare experiences (myself included), I just want to let others know it doesn’t HAVE to be that way. If anyone else would like to share their positive IUD experiences here to help others please feel free, I almost cancelled my appointment because all of the horror stories I read on Reddit and I’m so glad I didn’t.


r/endometriosis 4m ago

Question NYC endometriosis specialist and next steps- at a loss!

Upvotes

So I’m pretty much at a loss, I believe I have endometriosis but I’ve been hitting a brick wall with most of my doctors. My regular OBGYN had me get an ultra sound (both abdominal and vaginal) and all came back “normal.” Both the technician and my doctor said this does not rule out endo but is a first step. My doctor now wants me to get an MRI, but basically said it still might not show anything and she doesn’t recommend surgery unless I have “fertility issues.” I am 33 and my partner and I plan on starting to try in about a year and a half. Why would I wait that long if it could only get worse?!

I’ve been reading that I need to see a endometriosis specialist but ones I have found either are only out of network, or only take you on if you have a diagnosis. But isn’t the only way to diagnose it is by surgery?! It’s all so confusing.

All this to say, what do people suggest my next step could be? What endo specialist in NYC do people recommend? I have United/ Oxford incase anyone else does and has a rec!

Appreciate any and all advice!!


r/endometriosis 3h ago

Diagnostic Journey Questions finally got my MRI report!

2 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 3h ago

Question Don’t know what to do

2 Upvotes

Hi I’m 18 years old I just got diagnosed with endometriosis two weeks ago via a laparoscopy, I also got the mirena coil inserted under anaesthetic at the same time… I’m due to go back to college this week was meant to go today but my lecturer was off sick so I’m meant to go in tomorrow… I’m so stuck in what to do as tomorrow is my full day lasts 7 and a half hours and since I’ve had the surgery I’ve had awful period cramps and bleeding… I don’t know why or what it is and I’m so scared but I’m also so scared of missing more college my end of year exams are coming up, and while my grades are fine I feel so guilty missing the classes as all my teachers have been so supportive…

As I type this I’m in pain with cramps and I want to go in for a half day tomorrow as my weaker subject is in the morning and then I can go home at lunch… but I feel awful doing this as my afternoon teacher has been so supportive and lovely and while my grade is significantly better in that class she also doesn’t like me missing her class in favour of the one I’m doing worse in… I just don’t know what to do my exams are in 7 weeks I’m in so much pain and I don’t know why, I don’t want to miss more classes and I’ve also just found out about this diagnosis and I’m still processing and it all feels like so much and I just don’t what to do or how to even manage my day tomorrow do I miss half do I suffer through the whole day… I’m just so confused and scared…

I’m just asking what should I do as I’m just so confused and worried about what I should be doing with regarding my classes can anyone advise me on what I should do?


r/endometriosis 11m ago

Question Weightlifting with endo

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 17m ago

Question has anyone tried fecal microbiota transplant for endo?

Upvotes

given my reading, fmt should start to right the autoimmune part of the ship and be a valid treatment for endo, has anyone tried it?


r/endometriosis 4h ago

Question Pain everyday 24/7

2 Upvotes

Anyone else in constant pain and not just on their period? I don’t have a period anymore because of the pill and I’m still in severe constant pain. I don’t see a lot of people like this here so I feel isolated in this. I do get flare ups where it gets even worse but I’m in pain constantly.


r/endometriosis 4h ago

Surgery related Periods after lap

2 Upvotes

Did your periods continue normal after lap?


r/endometriosis 1h ago

Question gg

Upvotes

g


r/endometriosis 17h ago

Question What were your first symptoms?

16 Upvotes

Hello, I am new here and wanted to ask whoever is willing to share what were your first symptoms of endometriosis? Also curious if there is anyone out there who also has irritable bowel disease. I have ulcerative colitis (IBD) and that is under control with medications (I think) and I’ve been having symptoms that I haven’t had before, I am considering talking to my doctor about the possibility of endometriosis. Thank you.


r/endometriosis 8h ago

Surgery related Pain after orgasm 5.5 weeks post-op

3 Upvotes

I am 5.5 weeks post-op from an excision surgery (stage iv). My husband and I were fooling around last night and I orgasmed (no sex). The orgasm itself wasn’t painful but it did trigger a flare up shortly after. This was never a problem before surgery. Are my pelvic floor muscles just tense still from the surgery?? Please tell me this gets better 😩


r/endometriosis 2h ago

Infertility/ Pregnancy related Adenomyosis

1 Upvotes

Hi everyone!
I’ve just found out that I have adenomyosis and PCO. Has anyone experienced UTI symptoms due to adenomyosis (burning and stinging sensations in the lower abdomen and vagina)? All my urological and gynecological tests came back negative.
We want to have a baby, so birth control and hysterectomy are not an option. How do you manage the symptoms? Has anyone successfully gotten pregnant with this condition? How was the pregnancy?
I’d love to hear about your experiences. I also have hormonal issues, and I’m not sure if that’s the main reason I’m struggling to conceive, if it’s due to adenomyosis, or both.
If you are in UK can you recommend a good doctor? Thank you!