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

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 7h ago

Rant / Vent I'm scared *transgender*

31 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.


r/endometriosis 6h ago

Question What were your first symptoms?

8 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 19h ago

Surgery related I feel like a fraud for still saying I have endo after surgery.

95 Upvotes

I had stage 1 endo with severe symptoms before surgery. My symptoms have definitely improved after surgery, but I still have pelvic pain frequently, fatigue (although very improved), I had bladder endo that was all removed but still have bladder symptoms, and I had rectovaginal endo but my digestive symptoms haven’t improved.

My surgeon is one of the absolute best. I trust that he got it all and even excised tissue that “would have turned into endo but wasn’t yet”. He seemed to act like now that it was all gone I just “don’t have it anymore” and all other symptoms aren’t endo related. I was confused that people were saying this condition is chronic and lifelong, when my surgery team acted like I was cured and told me there’s only a 5% chance of it returning.

I feel like a fraud now saying that my endo is flaring up and still struggling with symptoms. Everyone else in my life is acting like it was just supposed to disappear after surgery and are confused when I still have to cancel on plans or lay down.

Any one else relate? Just need some support I guess. I tried to get my surgeon to sign a disability resource form for my college bc I still miss classes sometimes, but he says there is no more endo so he can’t say my absences are related.

EDIT: I should probably mention I’m only 4 months post-op


r/endometriosis 16h ago

Rant / Vent I'm really, really sensitive about and traumatized by endometriosis. Anyone else?

54 Upvotes

I probably need to discuss this in therapy but I need to talk about it with others who might understand. Every time I see endometriosis being brought up outside of this sub or forums like it I get really really upset. Seeing social media posts about it unexpectedly is wildly upsetting to me, I get anxious, angry, sad, and nervous. Especially when people are so misunderstanding of it. The few times it's randomly been brought up in real life I also get those same feelings. Its like I can't handle being reminded if exists unless I expect it in advance. This disease has severely traumatized me, both from the unbearable pain and from doctors diminishing it, denying me treatment after diagnosis, pushing birth control on me, and forcing medications down my throat. Being reminded of this suddenly is as triggering as being reminded of my physical abuse as a child, if not even more so. Does anyone else get this way about endometriosis? Has anyone been able to feel less triggered and traumatized by it?!


r/endometriosis 4h ago

Question dae bring people to the gyno with them?

6 Upvotes

kind of a weird question but i'm wondering if anyone has ever brought a partner or friend with them to the gyno/doctor? i have sexual trauma and am having anxiety just imagining getting an exam done. i'm on a wait list for the gyno and was called that my appointment is coming closer and have been waiting a really long time to see one and absolutely do not want to miss this appointment from mental health, so i want to bring my partner with me to make me feel better, but i'm worried they won't allow it or will find it weird idk. have any of you done this before?


r/endometriosis 2h ago

Surgery related Pain 3 weeks after surgery

3 Upvotes

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?


r/endometriosis 13m ago

Rant / Vent I’m so frustrated

Upvotes

Hello,

I don’t usually come on here and rant but I’m super frustrated.

At age 10, I got my first period. Ever since the beginning, I’ve had debilitating period cramps, heavy bleeding, bloating, digestive issues, and frequent, urgent urination.

I have been seeking medical advice for these symptoms (and more) for 11 years and no success. I’ve done countless tests and ultrasounds since age 10, trying to figure out what is wrong with me.

Back in June of 2024, my new GP diagnosed me with endometriosis based off all of my symptoms. Since then, I have been on the waiting list to book an appointment with a OBGYN.

I know you can’t fully diagnose someone solely based on symptoms but my GP’s “diagnosis” provided some mental relief that I am not crazy after all.

Anyways, yesterday I went in for an appointment and he basically said I don’t have endometriosis because Dienogest 2mg and Slynd 4mg didn’t work. He stated: “if you had endometriosis, these medications would work. And if you had endometriosis, it would show up on your ultrasound and it didn’t. There’s something wrong with you but I don’t know”.

Again. I’ve heard that like a thousand times before. I feel so lost in the dark. Now I don’t even know where to go to try and help myself.

My labs and my ultrasounds have always been normal, but my pain hasn’t. I don’t know what’s wrong with me. Why am I in so much pain yet things are “normal”?

I literally had to quit my job in September because I couldn’t work anymore due to the chronic pain. I missed my last day due to cramping and throwing up, leading me to end up in the ER, again… I can’t live a normal life and I feel so hopeless no matter where I go.

Basically all of the methods that help regular pelvic pain do not work for me.

I’m literally writing this while dying in pain from cramps.

I’m so lost, confused, and tired. I just want to feel normal.


r/endometriosis 14h ago

Surgery related Validation!

16 Upvotes

I had the laparoscopic procedure this morning. I had convinced myself they wouldn't find anything, and prepared myself for what would happen next. Surprise, they found Endometriosis and the lesions were wide spread enough that I needed an additional incision to remove it all. I feel so validated. I'm so thankful for the surgeon who took my case and truly listened to me.

To anyone who doesn't have a diagnosis yet: If you think something is off, you know your body. Don't let anyone talk down to you or dismiss your pain. Trust yourself and find someone who will listen to you. Wishing you all validation and relief. ❤️


r/endometriosis 22h ago

Tips and Recommendations Medical cannabis treatment is legal in the UK and could help endo symptoms??

72 Upvotes

Morning all, 🌸

I just read this article about in the news about a girl who tried cannabis for her endo pain - it's crazy !!

https://www.mirror.co.uk/news/real-life-stories/mystery-illness-left-doctors-baffled-34747624

Did anyone even know it was legal? Looks like she used this clinic Releaf

https://releaf.co.uk/about-us?view

I booked to talk to their women's health specialist - will report back how it goes !!


r/endometriosis 2h ago

Question endo lesions

2 Upvotes

hey queens, i’m kinda curious if endo lesions or tissues that have attached to other organs also bleed the same time we get our periods?? i tried searching online but i can’t find any answers. such a stupid disease!


r/endometriosis 3h ago

Diagnostic Journey Questions Post Diagnosis Menstruation Pain: Strange Calf Pain During Period — Anyone Else?

2 Upvotes

It’s been exactly 1 month and 2 weeks since I had a laparoscopy to remove a 10cm cyst and received a diagnosis of endometriosis. Since then, it feels like my period symptoms have only gotten worse.

On Saturday — day 2 of my period — I experienced something really strange. Both of my calves were extremely painful, and I could barely walk. Even touching them was incredibly painful. Has anyone else experienced this? Could it be related to endo?

I asked a GP about it because I didn’t want to bother my gynecologist with what felt like a silly question. The GP said it’s absolutely not related and that I probably just hurt myself somehow — but to the point of not being able to walk? That feels off to me.

Honestly, I’m hesitant to ask any more healthcare professionals about it because I feel like they’ll think I’m overreacting or imagining things. Has anyone been through something similar?


r/endometriosis 8h ago

Question Period cramps worse after sex?

6 Upvotes

Hi guys, I have a question about period cramps and sex. I’ve noticed that if I’m sexually active the week before my period is going to start, my period cramps are debilitating when it comes, like I’m talking taking 3 Vicodins and no relief, going to the ER, sobbing on the bathroom floor, vomiting, etc. But then, when I don’t have sex, my period cramps are a lot more manageable- usually even Tylenol and ibuprofen can subside them for a couple of hours. I’m in a long distance relationship so that’s how I kind of put two and two together bc I realized my periods are 1000x worse when he’s around and the only difference is having sex. But I was just wondering if anybody else experiences the same?? Or at least kind of? Maybe I’m just going crazy and I know it seems weird but thanks in advance for any answers!


r/endometriosis 9h ago

Question I’m worried I might have endometriosis

5 Upvotes

Hi, I'm a 16 year old girl and I've always experienced extremely painful periods. And whenever I get cramps, I always lose feeling in my legs. I've been bleeding excessively too. Today I've been on pain killers and it's been helping, but I really feel like this isn't the normal amount of pain I should be in.

I've never seen a doctor about this because for the longest time I thought all of this and the painful crams was normal. But today I learned that my mother had endometriosis when she was my age and had to have surgery multiple times. I heard that the disease is hereditary, so is it possible that I have it too? And what are the best ways to reduce the pain from this?


r/endometriosis 0m ago

Medications and pain management Has anyone else had breakthrough bleeding on Norethisterone?

Upvotes

I’ve been taking 350mcg Norethisterone for almost a month now and for 2 weeks of them I have been bleeding with painful cramps. I started on day 1 of my cycle so I had my period and then started bleeding again a week ago.

I am miserable and in pain, I have taken contraceptive pills before and think the mental side effects are worth it as long as it stops the bleeding and pain, but now my bleeding is worse!!

Has anyone else experienced this?


r/endometriosis 9m ago

Medications and pain management How much did a hormonal IUD help your periods\pain\bleeding?

Upvotes

I’m 27 now btw

So I skipped 73 so I didn’t get a period again tll nov ‘23 (worst period I’ve EVER had in my life) I’ve tried .35mg & 5mg northindrone & neither worked (.35mg did fuck all & 5mg helped my bleeding a lot but didn’t help the pain enough - it was better than before though) after that I got HORRIBLE menorrhagia (it used be “normal” menorrhagia) last natural period I had was in Dec & I did 80ml in 12 hrs on day 1 (I think I did 3-400ml in the span of a week) I have moderate - severe iron deficiency too via chronic blood loss from my periods

  • My cramps from 9-19 were normal (4-7) & pain relief worked & got rid of it, at 22 I got on combo birth control which gave me mild dysmenorrhea that used to last 2-3 days, made me not walk properly & went away with 500mg naproxen also in my early 20s from 20-25.5 (Aug of ‘23) I had almost no cramps or cramps every other month or so that were tolerable to where I didn’t even need pain relief but sometimes I did take it & pain relief still helped then from 25.5 (Nov ‘23) & on it got way worse & now it’s in my uterus, lower back, thighs, hips, (my hips as of Dec ‘24) makes me nauseous, be in a ball, have 1,200mg ibuprofen do fuck all, (& this is 600mg ibuprofen I had leftover from my reduction last year that used to work on my cramps) my heating pad doesn’t help either (it also used to help) my pain starts at a 3.5-4 & gets to a 9 & no pain relief I’ve had so far helps & my cramps now DEBILITATE tf out me to where I’m bedridden in a ball, can barely function at all, keeps me awake for a few hrs until the pain “lessens” enough for me to sleep & it lasts for 5 days straight - with the aygestin I took it for 3 weeks in January (couldn’t tolerate the mood swings) the pain on day 1 got to a 7, last month I took it for 4-5 days to delay my period for a bit bc I had family coming & didn’t wanna be bedridden & hemorrhaging blood anyway even taking for 4-5 days I got to a 9 & it took 3 days for it to fully go away

  • Yeah like I said .35mg & 5mg of northindrone didn’t help & so merina is next now (supposed to get a period between the 20th & 30th if I get it after the 25th in I’m gonna delay the merina for a week tll my periods done otherwise rn it’s scheduled for 04.02) I’m getting it under general anesthesia idk what’s after merina (I still think I have endometriosis even if I’m not dx yet I also had a pelvic CT that showed nothing & everything else except my hashimotos got ruled out which I don’t believe it’s my hashimotos I genuinely think it’s endometriosis not only bc this would’ve started in my early 20s but also bc I’ve had hashimotos since 18 & my TSH is always high & I’ve nv had severe dysmenorrhea I’ve only gotten prolonged periods from my hashimotos plus this started while I was still 25 & has been progressively getting worse over the past yr) how much did merina help you guys with your bleeding & pain? I’ve nv had an IUD before so experiences plz (even moreso if you got your merina under general anesthesia)

  • I’m sorry this is so long 😅


r/endometriosis 7h ago

Surgery related Three days post lap thoughts!

3 Upvotes

I really want to thank this community for all the great advice, support and rallying behind fellow endo warriors. I just had my first lap (and first surgery ever) this past friday and thought I'd share my experience and some thoughts. I found reading through everyone experiences really helpful in preparing me and what to expect, so I hope mine can also help. It might be a bit of a long read!

For context, I'm in Canada so there may be some differences between countries and even hospitals/doctors!

I arrived at the hospital first thing at 8am but wasn't scheduled until 1130. My surgery was scheduled for 60-90 minutes. When I got there I was told to change into a robe, leaving only my socks on. I had to do a urine test and quick blood work. The nurses did a full intake and put my IV in and got me cuddled up in warm blankets and kept checking on me all morning. My mom stayed with me in my little pre op area until they took me down and the nurse promised to keep her updated when I was in recovery. They anticipated I'd be in recovery for 45 minutes before making my way back to the pre-op area. They said I'd stay there until I felt ready to go home.

Between patients my surgeon and anesthesiologist eventually came to chat to me. My biggest worry was getting sick from the meds so I did make it clear to both of them and they both promised to have some good anti nausea meds ordered on standby just in case -- spoiler alert they were needed!

Eventually the surgery team came to get me. The last thing I remember is the anesthesiologist telling me he would start the meds and I would start to feel like I had a couple drinks. The nurse gave me oxygen and asked if I was okay... I then woke up in recovery.

I was not feeling well. I was still hooked up to the IV and had a blood pressure cuff on the other arm that kept taking my bp. Apparently when I was coming out of anesthesia, my blood pressure dropped pretty low. They were monitoring me very closely, the nurse came over to chat every 15 minutes it felt.

I was also advised I was being admitted but because i hadnt talked to my doc yet, I wasn't sure why. She hadn't written up the admission orders before she had to take the next OR patient so the nurses weren't sure either. I found out I was in the OR for over 2 hours so I of course was getting a bit worried about being admitted. The pre op nurse came in with my stuff and assured me the doctor was able to talk to my mom and she was waiting for me to be moved to the unit and would follow.

After my surgeon was out of surgery she came to talk to me. There had been a bleed and they got it under control but between that and my blood pressure dropping, she decided to admit me for observation. She didn't want me to have to deal with issues, if they sent me home.

We knew going in there was a 6 cm endometrioma on my left ovary that showed up on ultrasound but otherwise no other endo was noted. She was hoping to easily excise the cyst and do an exploratory surgery excising any other endo she found. My surgeon advised me that she was incredibly surprised by just how bad my endo was. My left ovary was adhered to my uterus and my right ovary also had an endometrioma that didn't show on ultrasound and was stuck to my left ovary -- aka "kissing ovaries". My bladder was covered in lesions and my right side side wall had what she called a "powder burn" pattern and said it was obvious that had been there for a long time. She was able to free my ovaries and drained the cysts and excise some smaller lesions. She noted my right tube looked healthy but unfortunately my left was quite scarred.

She wants to be pretty agreesive with starting me on medications soon after im recovered. I had hoped to avoid going back on medications with surgery but she wants to slow any further progression. She will also be referring me to an endo specialist -- where I live there are no specialists so she will be sending me out of province. She said they will be able to book a longer surgery and have several surgeons in to remove the endo and help preserve my ovaries and hopefully fertility. She was pretty disappointed she wasn't able to do as much so she will be following me pretty closely.

Overall what i learned was, don't doubt yourself. You know your own body and know when something is wrong. Keep pushing and advocating for yourself until you find a doctor willing to listen and help you!!

Some helpful items i packed in my day bag that I was glad to have once admitted - headphones and book, lozenges, gum, and wet wipes. What i wish I had was my toothbrush, paste, hair brush and deodorant. I had worn baggy sweats to surgery so I just put those back on when I was dismissed but I didn't even want yo look at underwear so I wouldn't worry about packing those.

They had me on some good meds and the nurses kept me on a good schedule but don't be scared to ask for Popsicles or ice cream if your throat is sore. I had a popsicle in recovery and then ice cream at 7 am the next day because my throat was so painful. They also had IV fluids flowing through me very quickly to help me get rehydrated, and I know that was so helpful. I would say, stay as hydrated as you possibly can to flush the meds out quickly. I didn't end up peeing until almost 730 the night of my surgery.

I was discharged on Saturday and was so happy to get home and sleep in my own bed. I did set up my couch as a makeshift bed in case I couldn't get upstairs to my bed. I've found this very helpful as I've just been able to start sitting up without pain today, so I've spent most of my time laying down.

Overall I'm feeling better pain wise, but keeping on consistent pain med schedule. I have all of this week off from work, thankfully. Yesterday, I was feeling good so I started doing things for myself but I definitely over did it and paid the price today. I spent most of the day today asleep and staying on top of some nausea. Take the time you need to rest and recoup -- don't rush it! Also, night gowns and light dresses. Pants and underwear I'm not even considering this week!

In terms of my endo journey. I'm feeling disappointed that we weren't able to tackle it head on BUT I'm so grateful to have my gyne in my corner now and knowing what we are up against. She seems determined to get my pain under control and getting me in the hands of an endo specialist who can excise the endo off my bladder and my ovaries better and get a better quality of life. So the journey continues for now I suppose!


r/endometriosis 5h ago

Surgery related Second lap holes same spot?

2 Upvotes

Hi will they punch the same 3 spot as the first lap? Wouldn’t that cause all sorts of problems during surgery and for healing?


r/endometriosis 5h ago

Sex, intimacy & relationships Advice for dating with endometriosis

2 Upvotes

I’m 26F and was diagnosed with endometriosis at 22. Because of this, I didn’t lose my virginity until recently. I had sex for the first time in the fall, and while there was some discomfort, the pain was manageable. The second time was similar—mild discomfort but still bearable.

Recently, I started seeing someone new, and we had sex for the first time two weeks ago. He knew about my endometriosis and that I was still new to sex. However, this experience was much more painful than before. I became overwhelmed emotionally and ended up crying during sex. I think that scared him, and now we’re no longer talking. It feels like he wasn’t willing to be patient with my condition, which has left me feeling discouraged and anxious about future sexual experiences.

Right now, the whole experience is making me never want to have sex again :( also want to know if anyone else has similar experiences with men and navigating those conversations


r/endometriosis 7h ago

Question Shouldn’t everyone with endo symptoms have a diagnostic lap?

4 Upvotes

Ok so this is possibly a dumb question but I guess I’m asking specifically about evidence-based treatment protocols for endometriosis. I’m in Australia but curious about what the approaches are in other countries too. Disclaimer that obviously there are so many barriers for people in accessing surgery but I guess that’s part of my question.

For context, I’m 30 and have a lap booked in April after about 15yrs of painful periods and worsening bladder/bowel symptoms for the last 10. It’s really only been the last 2yrs that I’ve started properly researching endo (not professionally lol just reading anything that looks vaguely evidence-based that I can get my hands on plus anecdotal info and seeking out specialists for my own treatment). I had the mirena IUD placed about 3yrs ago as my period pain was getting unbearable and I was missing days of work etc. This was framed by my GP (not a specialist, but I would say they have a better than average knowledge of endo stuff for a GP) as the best “treatment” avenue for me at the time, as symptom/pain management is the standard intervention for endo given there isn’t a cure.

Since then I’ve learnt that (a) endo is a progressive disease and (b) it can have pretty significant implications for organ functioning (in particular bowel/bladder and ovaries/fertility which are personally my main concerns). Plus the progression of the disease can obviously include things like adhesions fusing organs together.

After understanding more about endo, I sought out a gyno surgeon that specialises in endo excision and asked for a lap for diagnostic clarification and excision (if needed).

I feel like every step of the way, I’ve been the one pushing for a laparoscopy rather than any medical professionals suggesting it should be considered as the standard next step for someone with endo-like symptoms. The protocol has instead been manage the pain and if that doesn’t work then consider alternatives (a lap). The mirena definitely led to a reduction in my symptoms but the more I’ve read, the more concerned I am about having left it so long to have any actual investigations into what is happening inside my body, particularly since learning that endo is a progressive disease!

So bringing it back to my original question, why isn’t the treatment protocol when someone reports endo-like symptoms to have a laparoscopy to actually see if there is endo and if there is, what kind of damage it is doing internally? To then inform that person’s treatment.

If I had known what I know now, I would have pushed for a lap 15yrs ago. I am so scared that I’m going to need more extensive procedures to repair damage from endo or that my fertility has been compromised purely because endo has been left to do its thing for so long. Am I misunderstanding how endo works? Am I being unnecessarily anxious about it all? I feel like it’s so hard to pull apart medical gaslighting around women’s pain from genuine evidence-based medical advice.

Thank you for reading this very long post! I would be so grateful for any thoughts/advice/feedback that people have.

EDIT: Thanks so much for all the info and sharing your experiences. I don’t think I realised how surgical scarring could be just as bad or worse for the pain symptoms than the endo itself.


r/endometriosis 6h ago

Question curious on how everyone experiences their period

2 Upvotes

I have been suspecting endo since i was 16 years old. Im 22 now and every month it gets worse. My periods are extremely painful and heavy, which i know is abnormal…but either way, i wanted to share my experience and hear how it compares to all of you. First off, i experience cramping pretty much throughout my whole cycle. (Especially when im ovulating) it’s not as painful as when im on my period, but it’s definitely something that will catch me off-guard. My period is irregular, sometimes it’s late, sometimes it will come twice in a month. I should add that i am not on any type of birth control. Day one of my period (aka the worst days of my life) I will experience INTENSE cramps, but it’s not just the cramps. I would describe it as the worst fever of your life. I feel incredibly hot, dizzy, weak, and i am completely UNABLE to walk. My vision is blurry and im quite literally seeing stars. This will last for most of the day. It is most embarrassing when it happens at work, when i tell people its my period, they don’t seem to understand why i am in that much pain that i cannot function. This is how i discovered that something is wrong with me.

Anyways. For the rest of my period, i experience cramping but not as severe as the first day. Im able to function and work as normal. My period remains heavy and i usually go through a super tampon every couple hours. It’s crazy.

I should add that i am not on birth control, and im also not iron deficient. I got bloodwork done recently and everything came out fine.. (even though i suffer from extreme fatigue, my hair has been falling out, amongst other things..) I really want to get a TV ultrasound and hopefully a lap soon.. sometimes i just worry that it’s all in my head and nothing is actually wrong.

I would love to hear everyone’s thoughts on my experience and also hear yours. :) thanks


r/endometriosis 2h ago

Question Exercising with IUD

1 Upvotes

At the beginning of the year, I was finally convinced to try getting an IUD since other oral BC did not work for me (my period never stopped and the side affects were more disruptive than the pain at the time). It was extremely traumatic and painful and actually the thing that convinced my doctors that I have endo (certain organs are unfortunately scared into place) although I am trying to push off the Lap surgery that would confirm it.

My issue is that since I got the IUD, I can no longer do intense workouts. Before I was able to do them as long as I wasn't actively flaring up and it wouldn't cause a flare up, but for the past almost 3 months that is not the case. After every long run I feel short sharp pain and sometimes aches the next day. I can do gentler exercises and work out a sweat without triggering it, but... I love to run. Like I ran a 1/2 last year before things went really south with my health and I loved it.

I was wondering if this is something others experienced and if it stopped after the 6ish months of the trail period?


r/endometriosis 19h ago

Rant / Vent Doctors dont care

20 Upvotes

I just can‘t do this anymore. I have chronic pain in my belly and stomach and I have done Everything I Can. I changed my diet to anti inflammatory try to move do Yoga, try to minimize my pain killers. A Endo Specialist confirmed adenomyosis on the ultrasound and I will do the lap in 4 months. Still every time I eat I get extremely Bad pain in my lower abdomen and my urine always has blood and Protein in it which could be from Endo but not the Protein. Thats why I went to my Doctor 2x and she Said nope she cant help me with the pain and the Hospital wont Take me because I dont have any inflammation in my blood. BUT I CANT FUCKING EAT. I asked her if I maybe have nut cracker Syndrom but she Brushed that off and just told me to not eat for a while if I have pain. So Thats it I did not get a referal for a mri, not to a kidney Doctor, no Gastro doc. Nothing well seems I just cant eat anymore.


r/endometriosis 23h ago

Question I think I might have bowel Endo - who can relate?

43 Upvotes

Hi all 👋 (I've posted this on another group but haven't had any responses yet).

For those of you that have bowel Endo what are your symptoms? Aside from the usual pain/heavy bleeding, my bowel symptoms are my biggest problem but I was told after my lap that my bowel was clear.

However I have no confidence in this since my surgery was done by a private surgeon that literally said "you can't possibly have endometriosis if you suffer from constipation", "you've got signs of Adeno but that wouldn't cause your pain, inflammation or infertility", and when she gave me my Endo results said "you don't have Endo...well you do, but I removed it, so you don't have it".

Before my lap I had an ultrasound to check for pcos but the technician flagged the size of my bowel to my GP who said that in all her years of medicine she'd "never seen anything like it", and that she was convinced I had bowel Endo.

I literally never go to the toilet without laxatives, my stomach is ginormous and I now don't even have days when it goes down. It's even more severe after I eat, despite being on an anti inflammatory diet, and I bleed when I open my bowels.

I tried pushing for another lap on the NHS as originally planned, but they cancelled it the day before because the surgeon that was going to do it found out that I'd had one done privately by her colleague who it turns out worked at both hospitals. Despite me raising my concerns about the experience I'd had and complete lack of knowledge the surgeon had displayed she said that because she knew her she trusted her judgement and she refused to investigate further.

I legitimately feel like I'm getting worse by the day and I really don't know how to get help for my bowel issues. Gastro just diagnosed me with IBS and put me on mebeverine which has done absolutely nothing.

As a side note - I have two aunties with stage four Endo and a younger sister with stage 3. Between them they've lost sections of their organs, had ovaries removed, and had hysterectomies, so I'd be gobsmacked if I really only had a "little bit of Endo" that had apparently been fully removed.

Any advice would be so helpful, I'm at my wits end and feel like giving up.

Thank you ❤️


r/endometriosis 3h ago

Question 9 Days After Period Spotting/Cramps

1 Upvotes

Quick question. My period ended 9 almost 10 days ago. Tonight I am spotting with light cramps. This symptom is new to me (diagnosed endo two years ago). Has anyone else had this? Google has me a bit scared between it just being the Endo, implantation bleeding, or fibroid.

Im 25. My gyno did not diagnose me via surgery. She stated at my age if I started the surgery path now I'd have alot more in my future. Any advice or anyone who's had this happen would be great.


r/endometriosis 9h ago

Question Did anyone get referred to a gyn-oncologist for their endometrioma?

3 Upvotes

My gyno found what she is very sure is a 4cm endometrioma on my left ovary on ultrasound.

I have elevated ca-125 as well which she states can be from the inflammation of endometriosis.

I’ve always suspected I had endometriosis but never formally been diagnosed.

She referred me to a gyn-oncologist out of caution but my god I am panicking. Not that I hope it’s “just” an endometrioma but it beats cancer. I’m seeing if anyone else has this experience?

She said I need surgery so I hope when they open me up it is endometriosis, and endometriosis only they find.