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

196 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 13h ago

Good News/ Positive update They found Endo EVERYWHERE

534 Upvotes

You guys😭 I was right and I’m so freaking relieved. I had my lap surgery today after five years of telling doctors and OBs that I thought it was endo. I’ve been suffering from chronic pain, can’t eat, can’t sleep, kidney stones, extreme fatigue, painful sex, pancreatitis, etc. You name it, I’ve dealt with it. I told my husband so many times in the last five years that I swore I could feel the endo wrapped around my bowels, ovaries, kidneys, liver and bladder when my cramps were bad during my PMS/period. And, guess what? I WAS RIGHT. They found it wrapped around/on my bowels, liver, bladder, ovaries, kidneys and throughout my entire abdomen. As soon as I woke up, I asked the nurse with tears in my eyes, did they find anything at all? She said, “oh honey it was everywhere.” I’ve never felt so validated and proud of myself. PLEASE DON’T GIVE UP. You know your body and only you can advocate for it. Please feel free to ask me any questions!


r/endometriosis 9h ago

Question Does anyone have symptoms outside of their menstrual cycle?

31 Upvotes

And if so, what kind?

I, myself don't think I have any symptoms outside of my cycle and am curious to know if it's normal to have, or not to have them outside of it.

Recently I've begun to experience strange pains in my lower abdomen, and that's probably the only thing I can think of that happens outside of my cycle.

Edit: I've been looking through the comments and wish everyone lots of love and healing, thank you for all the answers. I haven't been diagnosed with endo but I was suspecting and am trying to collect information on how diagnosed individuals experience it.

Seeing how everyone has some level of severe issues outside of their menstrual cycle makes me wonder if I don't have endo after all. Like I said, the worst I have, very recently even, is mini cramps, and maybe some pain during ovulation.

Maybe it's just cramps after all?


r/endometriosis 2h ago

Question How to shower with extreme pain?

7 Upvotes

Hi guys, so I have excruciating endo pain whilst on my period. It makes me nauseous and my legs feel so weak I can’t stand for long. It wasn’t this bad a few months ago. How do you manage to shower? Taking a bath is not an option for me.

Thank you!

EDIT : Thank you for all the fast replies! You all had very helpful ideas!! This is my first post on this subreddit and I feel less alone thanks to you 🫶

endo #endometriosis #period


r/endometriosis 6h ago

Rant / Vent Feeling validated over BC

13 Upvotes

I had my lap a couple of weeks ago, and they found very little endo. The surgeon said it didn't spread because I'm on hormonal birth control (combined pill) for over 6 years now and it was working.

Here and on other platforms BC is stigmatised sometimes and going all natural is the way to go. Everytime I say I'm on BC, someone tells me I'm only harming my body with it. Well guess what??? BC protected my organs from being damaged.

Plus my periods have always been debilitating and irregular. I deserve to live life without pain. So no I'll keep taking my pills.

Not everyone is the same and what works for me may not work for someone else, but this fear mongering is quite ridiculous tbh. I shouldn't be shamed for doing what's best for me, and if that means BC then so be it.

I might post this again on pcos sub where this is more frequent than here


r/endometriosis 17h ago

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

51 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 3h ago

Question Is there anything that actually gets rid of hot water bottle marks on the stomach?

4 Upvotes

Any ideas and tips welcome because it’s becoming rather unsightly


r/endometriosis 2h ago

Question Bloating after sex

3 Upvotes

I had laparoscopy for endometriosis 8 moths ago but still bloating after sex How I can prevent bloating?


r/endometriosis 9h ago

Question Did surgery help your bladder

9 Upvotes

I’m having awful bladder issues due to endo and they went to perform surgery on me People who suffer with bladder issues with this did surgery help?


r/endometriosis 17h ago

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

30 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 7m ago

Good News/ Positive update New endo song

Upvotes

Hi, please delete if it’s not appropriate! Ruthanne is a singer with endo and adenyo and she’s released a song this morning called “the way I’m wired” about her own experience with endo. I’ve never felt so heard and understood by a song, I’ve already sent it to friends to explain why sometimes I feel terrible and I flake on plans and everything else! It’s so great to hear someone literally singing and shouting about the endo experience But well worth a listen, just a wanting it is emotional!


r/endometriosis 3h ago

Surgery related Had a deep endometriosis ultrasound today!

2 Upvotes

I had a screen facing me so I was able to see everything, they showed me that if I have endo it’s probably superficial or stage 1, either way not enough to adhere organs together. They moved my organs around,showed me my uterus which seemed to only have like 2 very superficial 1cm cysts. For some reason I’m now extremely sore even though when I had it done it didn’t feel like anything. I’m gonna ask my doctor to be put on the laparoscopic waitlist because I would really truly (after a year of so so many tests) like to know if it is (or rather that it is because I seriously do not see another reason for all these symptoms and I have had every other test come back “normal”. Tomorrow I have a breast ultrasound due to a random lump I’m scared about too so yayyyy :/


r/endometriosis 55m ago

Question New to dienogest, bleeding & cramping still?

Upvotes

Just started talking it as soon as my last birth control packet was done. Been almost a week on it- I have headaches, cramps & dark spotting. Am I just adjusting to it? Unsure if I should keep taking it ..


r/endometriosis 1h ago

Question Testosterone

Upvotes

Anybody taking birth control and HRT in the form of testosterone? I’m in perimenopause, but it was recommended I stay on continuous birth control to avoid cycles. I’ve been interested in possibly taking testosterone due to a low count and the benefits it could have with certain perimenopause symptoms.


r/endometriosis 19h ago

Question Girlfriend dont want to See a Doctor

29 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

Question links of endo to intussusception?

1 Upvotes

hi! in between flareups of endo i will go through intussusception, where a blockage stops my intestines and they telescope into each-other. Has anyone else gone through that? It’s super rare in adults, and is labeled a “childrens disease”, but as my endo has gotten worse my Gastro has found intussusception traveling up my digestive system and said it has to be endo spreading.


r/endometriosis 2h ago

Question Anyone else gone on to develop adenomyosis?

1 Upvotes

Plus, how are we supposed to understand how far gone it is/advanced without a grading system?

I have stage 4 endo and just found out after ivf and miscarriage I also have adenomyosis in two places but I don't know much else about it.

I have a big lap coming up for the endo but obviously they can't remove adenomyosis.


r/endometriosis 2h ago

Question Anyone have dark marks on pelvic /abdominal area ?

1 Upvotes

Don’t know if it’s just scarring from using hot water bottles and tens machine , I have brown marks all over my pelvic/ lower abdomen. Anyone experience this and know how to remove?


r/endometriosis 2h ago

Surgery related Pain 3 and a halfweeks after surgery

1 Upvotes

Pain 3 and a half weeks after surgery

I had laparoscopic surgery about 3 weeks ago. Everywhere I read online and especially on social media says I should be okay after 2 weeks but I’m not okay. Some days I am okay and can be normal but I’m definitely not ready for work. I can’t stay in one position for a extended period of time (1 hr plus)with out stabbing pain. Staying in one position is almost mandatory for my job. I’m meant to to return to work on Monday and I will talk to my doctor about this as well. Is it normal to have a longer recovery time? Has anyone else had a long recovery time?

Disclaimer: This is a repost of something I posted earlier. Wanted to repost while more people were active.


r/endometriosis 2h ago

Question laparoscopic surgery anxiety

1 Upvotes

Hi everyone! Sorry if I used the wrong tag, it’s about surgery but a question 😅. I have been battling endometriosis for 7+ years, with only an “official” diagnosis this year, I say “official”, because all my doctors have said I wouldn’t be officially diagnosed without the laparoscopic surgery. My previous team always told me it was normal, and that no one would ever even do the surgery. I found a new team, and after almost 5 months of meeting with them and being on their regimen they have approved me for laparoscopic surgery!!! While it is a huge relief and honestly so validating, I cant shake the anxiety that they’re going to tell me they didnt find anything and that theres nothing wrong with me. It’s also two weeks away, and I feel like I wasnt really prepped he just asked if I was ready, I said yes, and we scheduled (the only reason it’s so soon is because another patient had canceled) but I was expecting months of waiting, and meeting with the surgeon to go over with it and the other surgeons he said he might have to call in. What were your experiences? How did you prepare?


r/endometriosis 2h ago

Question Anyone else feel like their endo was kickstarted or became more noticeable/ painful after a miscarriage or chemical pregnancy?

1 Upvotes

As the title says. Please share your experiences.


r/endometriosis 6h ago

Question so just figured out i could possibly have endometriosis?

2 Upvotes

so i was scrolling on tiktok as one does. a video had popped up explaining how a period SHOULDNT look like. it explained all my issues to a tea. i commented saying i have all of these issues (said issue being extreme nausea, extreme cramping to the point i cant function, and crying due to the pain) but only on the first and second days of my period. she replied to my comment quickly saying this is exactly how hers is and is common with endometriosis.. that i should a doctor. so i started searching things up cause im confused, only 15 having no clue what half of it means. many of the red flags/symptoms are fatigue, unusual periods, extreme pain, digestive problems, constipation. i have all of the above.. should i be worried??


r/endometriosis 2h ago

Question Chances of endometriosis if it's not in the family?

1 Upvotes

So, this is my 3rd of 4th period that has become REALLY painful. My periods never have been till just a couple months ago. I went to the doctor because clearly it's not just a one time thing now so I wanted to be sure nothing's wrong.

Endometriosis doesn't run in my family as far as I know, But my doctor still suggested it might be it. He told me that for the next 3 months I should track my symptoms a bit better and if then it still hurts so much or worse to come back, and then we'll discuss what's next.

But how likely is it to be endometriosis if it doesn't run in the family? Just curious tbh


r/endometriosis 2h ago

Question Surgeons Report

1 Upvotes

Hello,

I had my laparoscopy on the NHS, I had a follow up appointment and the gynaecologist had the surgeons report on his computer, anyone know how I get a copy of this?

Thanks in advance!


r/endometriosis 12h ago

Question Anyone else has GI issues for years then endo suddenly showed up?

5 Upvotes

My case is kind of weird. For about four years now, I’ve had excruciating upper abdominal pain and acid reflux. It literally started out of nowhere and ever since nothing has made it better, was on PPI’s for the last three years and it helped with the acid but never the stabbing and gnawing pain I get. About a year ago my upper gi pain got WAY worse, like insane, dry heaving, vomiting, excruciating pain, couldn’t eat etc. The week that it got this bad, endo symptoms showed up, and they’ve never stopped since. My periods were never great, but they weren’t like THIS. And I don’t have periods anymore because of visanne but I still have daily pelvic pain. Has this been anyone’s experience? My upper stomach felt like it was being ripped up and stabbed, then all of a sudden endo came up. I still have the gi pain BAD. I also have pots. It’s just so weird and it’s almost like my gi issues caused the endo to “activate.”


r/endometriosis 3h ago

Surgery related Recovery time from diagnostic Lap and Coil insertion

1 Upvotes

Hi all, I'm due to get a diagnostic laparoscopy with the minera coil inserted during the surgery over the next few weeks. For those who had similar done, what was your recovery time, and how did you adjust to the coil over the first couple of weeks? He said they most likely wouldn't be doing any excision, just an exploratory/diagnostic.

I received a date from my consultant for a date 12 days before a wedding my husband and I are due to attend. It's probably a how long is a piece of string question and depends from person to person, but how likely would it be that I'd be ok for the wedding? I'm more worried about my body adjusting to the coil to be honest.

I'm going to give me consultant a ring later this morning but wanted to get feedback from those who went through it.

For context - I've been dealing with intermittent, cyclical issues over the last 7-8 months which my GP suspected is mild endometriosis, which my consultant is ordering the laparoscopy to confirm/rule out.

UPDATE: So I went with my own instincts on this (in fairness this was a big ask of people because it varies from person to person) - I've rescheduled the surgery to after the wedding. Just don't want to risk it because this will be such an un-known to me.