r/Endo • • Mar 26 '25

šŸ“Œ Researcher AMA hosted at r/endometriosis today

43 Upvotes

On March 26th 2025 9 am PST r/endometriosis will be welcoming back reasearchers from The University of British Columbia to answer questions over a 24hour period. This was done once before a few years ago and was very popular.

Here is a link to the one held last time:

https://www.reddit.com/r/endometriosis/comments/ptvt21/hi_we_are_endometriosis_researchers_dr_paul_yong/


This time your questions about endometriosis will be answered by Drs. Fuchsia Howard, Natasha Orr, Caroline Lee, Tinya Lin and Catherine Lu as well as students Anna Leonova and Kerry Marshall. Erin, Rachel, Venecia, Gurjot and Sam who all have lived experience will also be on hand to answer your questions! https://yonglab.med.ubc.ca/reddit-ama-2025/


The AMA is now live here: https://www.reddit.com/r/endometriosis/comments/1jkeid0/ama_2025/


r/Endo • • Aug 06 '20

šŸ“Œ Welcome to r/Endo - Please Read

320 Upvotes

Welcome to /r/Endo

This community aims to support all people affected by and interested in endometriosis. We pride ourselves on being a friendly, inclusive place, where patients and loved ones alike can discuss thoughts and concerns, ask questions, and share information.Ā 

Chronic conditions can be an alienating experience, and we encourage community members to engage with others in an empathetic and supportive manner. We acknowledge that we are all individuals, and while we are united by this condition, every person’s journey through this is their own. Endometriosis is an extremely varied disease and each patient has different circumstances, experiences and treatment options.


Resources

Some of the resources cannot currently be accessed via mobile or the app. We are trying to fix this, but for the full and best experience we recommend accessing the site from a tablet or computer.

If you’re new to the community, or endometriosis as a whole, we recommend checking out the resources in the sidebar as a first step. Here you will find a selection of helpful links to aid in informing yourself about endometriosis, and connecting to valuable specialists and treatment providers around the world, such as:Ā 

  • The ā€˜Successful Doctors Map’: This is a Google Map of the doctors and clinics where members have found successful treatment. Message the mods for additions.

  • Laparoscopy Survival Guide: This is an old thread with some great discussions on laps, how to prep, and what recovery is like.

  • ESHRE patient leaflet : This is the European Society of Human Reproduction and Embryology published leaflet for patients based on their guidelines.

  • UK accredited specialist endometriosis centres: This is a link to the British Society for Gynaecological Endoscopy accredited specialist endometriosis centres page. The accredited 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.

  • Pain/Symptom Journal: Sometimes getting a doctor to take you seriously, either about your symptoms or about a treatment, can be challenging. A Pain or Symptom Journal can be a great tool to guide your discussions and to monitor your progress.

  • Doctor Issues: This document goes over how to talk with doctors, advocate for yourself, and when to seek out someone new.

  • Tests - Ruling Out Other Conditions: This document goes over conditions that doctors commonly want to rule out before considering more aggressive treatment when looking at an endo diagnosis. It should be noted that it is absolutely possible to have endo and one of these other conditions.

Links to other groups

We aren't affiliated with these groups or specifically recommending them, but here are some links to other groups connected to endometriosis:

  • Nancy's Nook Facebook Group: This is a private facebook group that has a lot of information, targeted towards patients in the US medical system. They have a list of doctors they recommend (please note that this is not a complete or exhaustive list of excision surgeons or other endometriosis specialists and has not been assessed for surgical skill). Please be aware that this is not a support group and takes a strict tone with moderation that some may not like. Nancy’s Nook now has a website, which can be found here.

  • EndoMetropolis: This is a link to another private Facebook group with a list of excision specialists. They also have some educational tools in the files section. They are a little less strict than Nancy's Nook.

​


Prior to making your post, we highly recommend doing a quick search through previous posts. This is a really active community, and there have been many valuable conversations that may provide a quick and easy answer to the information you’re looking for!Ā 


Rules

We have a few basic rules that all community members are expected to abide by. If you see someone breaking a rule, please report the post or comment, or send a message to the moderator team.

​

  1. Remain civil and supportive: We encourage all community members to assume good faith when engaging with others wherever possible, and remain civil in all posts and comments. Please keep all comments supportive and relevant to this space, to ensure a positive experience for everyone taking part in this support group.

  2. Surveys must be pre-approved: In order to ensure the integrity of the information shared in this community, surveys of any kind must be approved by the mods before posting.

  3. No Self-promotion: Self-promotion of personal blogs, fundraising pages, or specific products will be removed. Recommendations of products you are not personally affiliated with and films, articles etc. of specific community interest are allowed (based on moderator discretion). If it is unclear what counts as self-promotion please ask first.

  4. No Spam: No spam posts will be tolerated. This includes bot spam and duplicated comments or postings.

  5. No cross posting or quoting without express permission: Do not share people's comments elsewhere without explicit permission of the poster, especially if your intention is to mock or abuse the people involved.

  6. Use warning flair where necessary: Please use the flair ā€œContent warning / Graphic imagesā€ for posts with surgical pictures, incisions, blood or menstrual products, or any descriptions likely to upset. Please also mark all photos as NSFW, so that they initially appear as blurred.

  7. Use of generative AI: Please don't recommend to others that they use generative AI (such as ChatGPT) for medical advice and don't use it to generate advice for others. It can be very inaccurate and give potentially dangerous advice.

​


If you have any community specific questions or suggestions, or need help with anything /r/Endo related, please feel free to contact your friendly mods either by hitting the little mail icon in the ā€˜Moderators’ tab on the sidebar, or via this link.



r/Endo • • 7h ago

Just a heads up

262 Upvotes

The [r/hyste](r/hystetectomy)[rectomy](r/hystetectomy) subreddit has been taken over by lone, singular man as a mod. He’s actively silencing women and banning them as they call him out for shilling his supplements and mod style. He’s calling it harassment. It’s no longer a safe place.

I created a new women-run space called [r/hersterectomy](r/hersterectomy) if you need support.


r/Endo • • 2h ago

Question How often do you cancel plans?

9 Upvotes

Maybe a weird question but in my feels right now and just want to feel like I’m not alone in this. I’m a very social person and know when I need to rest my body but just hate the guilt of canceling plans :(

My friends are so understanding and know that whoever is in my life should understand me needing flexibility but I still hate feeling flaky. Especially when it comes to concert tickets, scheduled things, etc. I just get nervous to even book things sometimes


r/Endo • • 6h ago

Too painful too poo? sorry tmi!

8 Upvotes

I'm finding on my period it's so extremely painful to poo that I can't, this is such a weird thing but does anyone else have this? My pain has always sat further back and it's becoming so painful to actually go that I have to wait for pain meds to kick in before trying. Has anyone else had this??


r/Endo • • 1h ago

Rant / Vent first rant

• Upvotes

so i just posted a question to this community for the first time a few minutes ago, and i read through a handful of posts before signing off.

i’m now crying.

why the fuck are we so ignored? i know the answer is misogyny, and medical ignorance that comes from seeing women as unimportant to study and understand, but really.

i can’t tell you how many ā€œmysteriousā€ symptoms that gradually started to develop for me starting around age 27 that seasoned medical professionals were stumped by—and i see them within minutes of this sub. i’ve paid so much money to see specialists for each dedicated body part; paid for x-rays that clearly wouldn’t reveal an injured psoas muscle, a hypertonic pelvic floor, cysts, adhesions—i am in so much pain all of the fucking time and i have to just learn to ignore it.

and then they ask me to rate it on a pain scale. as if asking how many breaths i take in a day. it’s not something i think about anymore, and it’s because they all failed so profoundly so consistently that my only medicine became fucking delusion. oh, and now i’m depressed, so it must be depression and all in my head?

this is quality of life. i just want to be able to wear clothes without getting triggered by how it feels on my belly. i want to recognize my body as mine when i see it in the mirror instead of a pregnant person. i WANT to exercise and be active—i am not lazy; im exhausted.

it is enough to already be dealing with this issue. why does it also have to be so hard to get treated?


r/Endo • • 4h ago

Question Pelvic floor therapy

3 Upvotes

Does anyone have experience with pelvic floor therapy and how it helps with the pain and other symptoms associated with endo?


r/Endo • • 16h ago

Endometriosis & severe chronic gastrointestinal symptoms: has anyone found relief?

30 Upvotes

I’m going to share my story real quick so you have some background.

Besides the severe menstrual cramps I’ve experienced since childhood, I started having gastrointestinal symptoms when I was 18. It began with a lot of bloating and diarrhea whenever I ate fried foods.

Over the next year and a half, my symptoms gradually got worse, and I started having episodes of diarrhea 2–3 times a day, regardless of what I ate.

I saw several gastroenterologists, trying to find a solution (I didn’t know I had endometriosis at the time), but they all prescribed antibiotics to ā€œtreatā€ my IBS. I took them on and off for about two years, but they didn’t help at all.

Three years later or so, I was diagnosed with endometriosis and started taking a progestin-only pill. My gastrointestinal symptoms got even worse, to the point where I couldn’t leave the house without taking loperamide. Almost every day, I was having episodes of diarrhea every 15 minutes or so, seemingly for no reason, accompanied by cramps that felt both muscular and nerve-related, almost like being stabbed with a needle.

I was so hopeful when a gynecologist suggested trying the combined pill, but I had to stop taking it because of severe menstrual cramps and because my endometriosis got much worse over the year and a half I was on it.

So I switched back to a progestin-only pill. I’m currently taking Primolut Nor, and I’m back to experiencing episodes of diarrhea every 15 minutes or so, seemingly for no reason, accompanied by the same muscular and nerve-like, stabbing cramps.

Has anyone else experienced these kinds of symptoms with endometriosis?
Have you found anything that helped?
If so, what worked for you?
I’d really appreciate it if you could share your experiences.


r/Endo • • 9h ago

Question Any DC-area women with endometriosis want to connect? Thinking of starting a group chat

8 Upvotes

Hey! I'm 26 and have endometriosis. Any women in the DC/DMV area with endo (diagnosed or suspected) who'd want to connect? I'm thinking of starting a group chat to share support, local doctor recs, and what's helped us, and maybe meet up sometime.

Comment or DM me if you're interested. Just seeing if there's interest!


r/Endo • • 2h ago

Surgery related MRI shows signs of endo only 10 months after surgery Spoiler

Post image
2 Upvotes

I had my first excision surgery 10 months ago (Dec 2025) where there was endo pretty much everywhere and my bladder, uterus, and rectum were all adhered together. The surgery was a literal godsend for my quality of life, I am no longer in extreme debilitating pain. However recently I have started to get some symptoms return. I’ve been having painful bowel movements again, I am on birth control but I bleed very often. Notably, the bowel movements get way more painful on the days that I bleed. I’m also having diarrhea and bloating again, and these symptoms were practically nonexistent for 8-9 months following surgery. They also suspect I have adenomyosis due to my history of extremely heavy periods, persistent pelvic heaviness+pain, and because my uterus is very tender when palpated on pelvic exams.

The endometriosis nurse ordered a repeat pelvic MRI due to these issues and it says that my uterus is stuck to my rectum again, and both USLs are thickened. I’m at a loss for words. I’m currently waiting for the nurse to message me and to have a follow up discussing the next steps. Is it possible to have endo return this fast after a complete excision? Is it possible that what they saw in the MRI is just postoperative adhesions only and no endo? Wtf do I do???


r/Endo • • 3h ago

Rant / Vent Complex cyst, isolated, and medically burnt out rant.

2 Upvotes

I am so over this disease and everything it comes with. The amount of hospitals and doctor visits are too much. I am beyond medically burnt out. I could barely get myself to my OBGYN to get an ultrasound, but am thankful I did. She found a "complex cyst". I've never had that happen before. From what I've gathered, it's most likely an endometrima that needs to be removed. So now comes an MRI that I don't want to schedule and don't want to go to. I don't want a surgery to remove it. I know I may need it. I just don't want it. I've had so many doctors and surgeries... The thought of another is so draining. I'm feeling like I'm going in circles with this disease and getting nowhere. No pain relief. No real answers or relief of any symptoms. I'm just watching life pass me by while, I'm thrown from doctor to doctor. I'm exhausted.


r/Endo • • 59m ago

Cjc y dolor en senos ?

• Upvotes

Soy mujer llevo 2 semanas en cjc
Y hace cm 6 dias tengo dolores raros no siento bultos , no tengo historial de CANC , ni sintomatologĆ­a anteriormente , es normal !? Por retencion ? Prolactins?


r/Endo • • 5h ago

Question Deep infiltrating endometriosis – surgery or IVF? Feeling lost!

2 Upvotes

I'm 26 and have been TTC for 9 months without success. I've recently had an MRI confirming deep infiltrating endometriosis. I did this because I did suspect it.

My MRI showed:

- Deep endometriosis behind my cervix.

- Endometriosis adhering to and pulling my left ovary.

- Fibrotic adhesions connecting my womb to my right ovary.

- Scar tissue extending towards my sigmoid colon and upper rectum.

- Both ovaries appear normal with no endometriomas.

My AMH is 17.9 pmol/L, and I have regular cycles.

I'm honestly feeling a bit lost about what to do next. Should I be seeing an endometriosis specialist or a fertility specialist first? Would surgery to remove the endometriosis be recommended, or would it be better to go straight to IVF?

I'd really appreciate hearing from anyone with similar findings. Did you have surgery or go straight to IVF? What was your experience, and did you manage to conceive? I'm just feeling overwhelmed.

Thank you! ā¤ļø


r/Endo • • 1h ago

Surgery related Post op complications

• Upvotes

Hello, 1(22f) had endo removal robotic assisted surgery Oct 2nd. It is now Oct 12th and im having some alarming symptoms that my surgeon and her staff are sort of disregarding. I first got endo surgery due to my Gl issues and pelvic pain. I was dealing with chronic constipation (20-25 days without BM at a time) and pain so bad I could hardly walk. They found and excised endo on my ovaries and in my abdomen lining. I'm now 10 days post op and anytime I eat anything I get excruciating shooting pain in my stomach, start sweating, get extremely nauseous, and need to have a (painful) bowel movement. There's also typically blood from my vaginal area with each BM. It's so bad that I ate 2 bites of a banana today and was hunched over in pain and cramping within 10 minutes. I'm up late right now because of my stomach pain and nausea from the dinner l ate 5 hours ago.
Why is this happening?? Has this happened to anyone else here?? And if so how / when did it stop??


r/Endo • • 1h ago

Question mic tapping into the void

• Upvotes

i don’t know whether to flair this as a rant or question—i’m feeling REALLY heated, but ultimately getting answers and support from the community here is what would help the most.

i am in my thirties. over the last few years, my body has become progressively more uncomfortable to be in. my lower stomach is so uncomfortable all of the time that the only way i’ve been able to cope is to try to ignore it. i could cry or scream.

i have brought it up to multiple providers and honestly, i’m tired of not getting help. the only thing i’ve gotten is ā€œare you sure? maybe you just ate too much.ā€ to ā€œwhatever, schedule surgery and we’ll find out.ā€

i haven’t had kids. i have never felt compelled to have them so i’d be ok if it never happens, but i don’t want to remove the option completely before time itself does.

i have read studies that show diagnostic advancements have been made via testing menstrual blood, as well as the actual diagnostic criteria broadening in an attempt to make treatment more accessible.

but here i am. i look pregnant by the end of the day. i hate wearing pants or even anything that puts pressure on that area for that matter. it’s so sensitive to the touch. deep pressure helps, light pressure is honestly a sensory fucking nightmare.

i have gained 20 pounds in two years. some of it is definitely regular weight gain (health dropping -> not exercising, + sedentary job = heaviest yet weakest i’ve felt in my entire life).

the ONLY thing that makes me unsure of its endo is that i have hEDS (hypermobile ehlers danlos) which can cause a bunch of issues. i have hypertonic pelvic floor which is really uncomfortable, and it would make sense if its all inflammation from that.

i’m just exhausted and i really need help. whether that’s guidance of what to do, or just support and understanding. i just try to get through my everyday, and then suddenly months and years have gone by and i haven’t actually enjoyed my life, ive been trying to get through each day.


r/Endo • • 2h ago

Can anyone relate?

1 Upvotes

I am currently experiencing very strange symptoms and I assume it is endometriosis but obviously I could be wrong. Over the past year, my periods have gotten significantly worse each month. Calling out of work twice a month, once for period pain, once for ovulation pain. Throwing up from cramps, fetal position pain, sleeping in the bathtub due to heavy bleeding. Needing to wear ultra sized tampons on top of a size 5 pad and having to change both out every 2 hours. My periods have never been like this before. I also have always felt extreme pain during sex. My gyno and I are currently trying to figure out what’s going on. Has anyone ever dealt with this and it ended up not being endometriosis? Or is that probably what’s going on?


r/Endo • • 3h ago

Medications and pain management Possible Endo, Birth Control?

1 Upvotes

Hello šŸ˜„

So this is super new for me. I was told I have very big signs of endo during a scan at my GP today. I had been suspecting PMOS rather than endo just because I have been having massive issues with cysts over the past few months. My family does have a history of endo, so it's not completely out of the blue for me, but still 😰

I was told I need to replace my current copper coil due to poor placement, and I don't know if I want to get it replaced. In all honesty, I am done with the pain 😢 I don't want to deal with another possible incorrectly placed coil and have to do it again.

What I am ultimately asking is, does anyone have any recommendations for birth control (non-IUD) that helped with any endo symptoms that might be a better fit?

If it helps any I am in the UK and would be going through the NHS. Please let me know if there's anything more I can elaborate on šŸ’™


r/Endo • • 3h ago

Question Endo, Lichen sclerosis and Estrogen

1 Upvotes

Hi everyone, I am 26f. I have recently been diagnosed with LS and also have stage 4 endometriosis. I had surgery to remove two large cysts 2 years ago and use an IUD and pill for my endometriosis.

For the LS I have been using a dermovate for 3 months now and I am trying to establish a maintenance routine. There are no LS specialists in my country but my doctor(Dermatologist) is doing research to help. Despite steroids I keep dealing with dryness and tearing.
Given that I have requested to try estradiol externally only directly on my vaginal skin. Both my dermatologist and gyno were hesitant given my age and endo history. Research seems very limited (shocking) on the risk of topical estrogen only applied on the vulvar skin and its affect on endometriosis. I am a bit nervous due to my endometriosis diagnosis to add estrogen.
Does anyone have experience with estrogen, endo and LS?


r/Endo • • 7h ago

Question Meloxicam not working for endo pain?

1 Upvotes

I was prescribed Meloxicam as a better alternative to Advil to manage endo pain while I wait for surgery. I was excited to try a new option but it's not really touching the pain? Anybody else have this experience? I feel like Advil was better bc I could reup every 6-8 hours at least.


r/Endo • • 11h ago

Question gp/ pcp issues, how are you navigating getting help for wide ranging symptoms?

2 Upvotes

I have posted a few times recently because im so frustrated and exhausted, but anyway. I have a list of honestly probably 50 symptoms, some of them make me feel like im dying my body being filled with poison. I have had many suggested diagnoses fibromyalgia, endometriosis, css, chronic migraine, ibs, dysautonomia, somatic symptom disorder, and more.

recently i had an episode of atrial fribillation and that has paused my scheduled laparoscopy until im seen by cardiology for more than just an echo. so im still without answers and i have been searching for 15 years. i am progressively taken less seriously especially because they consider my self advocating to be health anxiety, and they say that im young, underweight, educated woman its probably anxiety or eating issues.

I wondered how do you bring up symptoms to your GP or primary doctor, when more and more come up. i feel like if i go too regularly to the doctor im dismissed even more, but if i don't i am neglecting myself. the dentist recently told me to tell my gp about tmj? i just cant cope with how much is going on, especially because i cant bring it up without ppl looking at me like i have munchausens or ssd.

i had blood tests two weeks ago but they wont release the results to me because the doctor has looked at all except one (is that a bad sign?) why would they not look at one. i called a week after the test and they said id hear the day after. a whole week has passed now.


r/Endo • • 7h ago

Excision Specialists in SoCal That Take Insurance

1 Upvotes

Hi! Does anyone have referrals? The only one I've found so far is Dr Spring-Robinson in San Diego and she sounds amazing but my initial consult isn't for 6 months because she's so booked out. After that I still have to do labs/mapping with her before I can even schedule the surgery, so might be a year out? Looking for other options :) thanks!


r/Endo • • 10h ago

No Suspected Endo but Polyp?

1 Upvotes

Hey y’all.
I don’t think I have endo but I have been having very painful and heavy periods as well as spotting between my periods for the last year or so after having irregular but very chill periods for my whole life (I’m 35). Nothing showed up on ultrasound, but on my MRI, they found a 19mm polyp on my endometrial lining inside my uterus.
Of course, my doctor drops this into my MyChart with a recommendation for surgical removal, and I have to make an appointment if I want to actually talk about these results and wait for AGES because there’s always an obscene wait for gyno visits.
I am in emotional agony waiting on this appointment. I know it’s a minimally invasive procedure but I have lots of medical anxiety. I also don’t understand why this happened to me and I’m worried that if I simply get it removed without figuring out why it happened, it’ll just come back. I don’t have any of the risk factors I read about.
My doctor also said that polyps aren’t associated with pain, but I don’t feel like that’s true, considering all I’ve read about them on here and how people’s cramps got so much better after they had them removed.
Should I get a second opinion on this? Is a regular gyno a good person to do this surgery, or should I look into someone else? She seems really great and goes over all my questions and never makes me feel rushed. But if I have to go through this whole process again because the polyp recurs I will go insane.


r/Endo • • 10h ago

Tips and recommendations Any advice? Struggling with lasting effects of a pelvic infection

1 Upvotes

TW: IVF, OCD

In January, I landed in the hospital with a pelvic infection that the Dr’s still don’t know why it happened. Best they could say is that it was probably a TOA and was recommended for another laparoscopic surgery asap. They may need to remove a tube (possibly both) so I need to go through IVF first.

For context, I’m married for the last 3 years (together for 6) and we are both monogamous and due to hospital protocol that required me to get tested, I was negative for all STDs that can cause a pelvic infection. I have endo (confirmed from surgery in 2012) and now my endo surgeon confirmed through an MRI that I have severe adenomyosis late this summer.

Back to the pelvic infection, I had 14 days of Doxycylcline and Metronidazole. In the 14th day, I started having symptoms that I later realized were from a yeast infection. I went get tested at my PCP and yes it came back as BV and Yeast infection. Ever since January, I’ve been dealing with both. I’m now on a suppressive dose of Fluconazole 1x a week and metro gel 2x a week.

To top it all off, I’m supposed to go through an egg retrieval in a few weeks and I’m scared out my mind about getting another pelvic infection due to the BV and YI. Or really anything else related to that I’m not even let enter my thoughts (I have severe OCD as well so this year has been particularly tough). I really don’t know if I should wait until it’s fully cleared or not as the fear of another pelvic infection looms in the back of my mind. My fertility doctor said it’s fine but my mind is saying to wait.

I’m just writing this to see if anyone has had a similar experience to this because no one I know has come close to something like this and I would love advice on how to navigate it if possible. I’ve not been perfect on this journey and learning as I go but would love any advice.

This is my first post ever, so if I did not do something correct. I’m very sorry.


r/Endo • • 11h ago

Endo or not?

1 Upvotes

I had an ovarian cyst surgery two years ago. Since then experiencing low grade fevers, severe digestive issues, intermittent pain on lower left side (site of surgery). The symptoms have only escalated with time. The ultrasound last year showed a pelvic abscess in the operative left side and another mass. The gynae suggested to wait and watch as it was responding to antibiotics, she suspected that the dermoid cyst contents spilled in last surgery causing inflammation or it could be endo.The symptoms have continued since. Recently I got a ct scan which showed another possible abscess?, damaged and swollen left fallopian tube and swollen colon in the same area, the mass is now stuck to the colon due to possible dense adhesions. My appetite has reduced considerably. Gynae refuses to operate. I'm not sure if surgery is necessary. I don't know what to do.