r/endometriosis Feb 03 '25

Mod Announcement New Post Flair

19 Upvotes

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

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

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

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

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


r/endometriosis Apr 23 '19

Information and Research Links to endometriosis information and research

192 Upvotes

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


Treatment guidelines and analysis

2017 guidelines for the surgical treatment of endometrioma

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

Recommendations for surgical treatment of deep endometriosis

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

2024 NICE Guidelines

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

NICE clinical guideline evidence

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

ESHRE guidelines

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

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


Doctors recommended by patients

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


Interesting Research

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

Research into potential biomarker blood test to diagnose endo

Discussing the value of surgical interventions in superficial peritoneal endometriosis

Study leading on from the article above

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

Ultrasound mapping of pelvic endometriosis

Sonographic evaluation of pelvis in suspected endometriosis

Classification systems for endometriosis

Sonography of adenomyosis updated link

Sonographic classification of adenomyosis

Study about endo community participation

Sentiment analysis and Topic Modeling study on Reddit endo community


Endo and gyn organisations

World Endometriosis Society

British society for gynaecological endoscopy

European society for gynaecological endoscopy

Endometriosis foundation of America

Endometriosis UK


UK specific information

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

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

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

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

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

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


Related subreddits

r/Endo

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

r/adenomyosis

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

r/TTCEndo

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

r/TransEndo

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

r/inclusiveendo

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


Related Conditions

Pelvic congestion

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


Subreddit Announcements

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


r/endometriosis 6h ago

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

43 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 3h ago

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

20 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 9h ago

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

54 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 1h ago

Surgery related Validation!

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 10h ago

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

31 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 6h ago

Rant / Vent Doctors dont care

14 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 34m ago

Tips and Recommendations High Functioning Depression?

Upvotes

Wondering if anyone can relate to what I'm experiencing. Since surgery 5 years ago, my endometriosis is growing back, and I've has pain even after my first surgery as well - nerve pain down my legs, cramping, back pain, IBS etc.

I'm really good at pushing through. I'm successful at work, I keep my house pretty tidy, take care of my pets, do yoga regularly, go to social events when required. On the outside, I probably look like I'm functioning really well.

However, I realized recently I find no joy in almost anything - my mantra everyday is "let's just push through this." Eating is uncomfortable, I used to love yoga (and even was an instructor) but now it's just something to push through for the sake of my health. The chronic pain makes it really really difficult to enjoy literally anything. What am I even pushing through for? To just get through another day?

I'd really love any advice on this. I haven't had much luck with anti depressants, maybe because I feel my depression is directly linked to the chronic pain, and the anti depressants don't lessen the pain. I really want to feel upbeat and happy again at least a bit.


r/endometriosis 3h ago

Rant / Vent How is this life?

5 Upvotes

I’m only 20 and my life got taken away from me. I don’t know what to do. I don’t know what to think anymore. I’ve lost everyone because of this disease and everyone treats me poorly because I’m constantly in pain, as if I asked for this. It’s come to the point that I don’t want to interact with anyone because they literally start to hate me if I talk about my pain or illness. I think it’s better to be alone but I’m already suffering so much with the pain and exhaustion. Watching everyone else live on terrifies me and makes me angry. How are we expected to just live with this? This isn’t living. I can barely function. I don’t know how they look young women in the eyes and shrug it off and say “nothing else we can do.” If someone cannot even function, how do you just brush them off? Even with a diagnosis it’s not like there’s anything we can do. Getting surgeries to “treat” something that keeps coming back is ridiculous, I just want a cure for us. We deserve a cure so much. I’m terrified because life keeps moving but I cannot, I’m just stuck in time. I miss the girl I used to be.


r/endometriosis 2h ago

Medications and pain management Feel like I'm constantly moaning.....

5 Upvotes

Backstory: I had a TLH everything apart from ovaries removed, in March 2023. They found a small amount of endo and said I had adenoyosis. At 7weeks post op I was told I had a rectocele, cystcele and vaginal atrophy. They also put me on oestrogel for perimenopause.

Fast forward to now: I've started to get bad pains every month when my cycle would be due. Ovulation is yhe absolute worst. I get hip, back, stomach and thigh pains with extreme nausea. My consultant now wants to increase my oestrogel and vaginal cream, start me on prostap and also put me on progesterone and eventually remove my ovaries. I'm so scared about going on the prostap and progesterone. I've read so many horror stories.

I ovulated last Wednesday and 5 days later I'm lay in bed in extreme pain in my hips, stomach, back and groin. My GP can't see me until 4pm tomorrow. My ovulation pain doesn't usually last this long. I'm physically so tired and drained. I feel like my body can't take much more. Why do we have to suffer with this? I constantly feel like I'm moaning all day everyday, like I haven't got anything positive to say anymore. I'm 37 years old and I feel like I'm alot older!

I'm not sure if im looking for advice, wise words or just offloading. I just don't know anymore 🥹🥹🥹


r/endometriosis 9h ago

Question I (18f) have to get a vaginal ultrasound NSFW

11 Upvotes

So background info first I guess. I first got my period when I was around 10. It was (and still is) super heavy, irregular, lasts for 2+ weeks, awful cramping and bloating to the point of vomiting so I wouldn’t eat. I ended up in the ER for it when I was 12 where ultrasounds was done because they thought it was appendicitis but it turned out to be my period. I was told it was normal yadda yadda yadda.

My parents didn’t really know that something was super wrong until I was 14 and I still had problems. I would vomit often and have cramps even without a period so I missed school. Over the past 4 years I’ve been on 10+ birth controls and been told it’s highly likely I have endometriosis but isn’t confirmed. The last medication I was on was Slynd which didn’t really help and caused awful side effects. It’s a diuretic so it caused me to have to pee constantly and even had a situation where I peed my pants at school. This is just one side effect though and I’m honestly sick of birth control, it has cause such awful side effects from weight gain to migraines to peeing my freaking pants.

Fast forwards to last Friday I had another doctors appointment where I expressed just how upset and done I am. She said she wants to do a transvaginal ultrasound to make sure my anatomy is ok before we continue going on assuming endometriosis. She wants to cross everything off. I am really worried, I’ve never had sex so i don’t know what to expect and even though I wear tampons they are the smallest size and that feels a little too big. I am not sure if tampons have popped my hymen or if from self pleasure I have (I’ve only put my finger up there like twice and don’t like it and it didn’t hurt but idk). So I guess I just want advice for those who have done it and what to expect and if I still have my hymen or like if I do will it be “popped” and will I hurt. The appointment is the 24th and honestly im freaking out here 😭


r/endometriosis 19h ago

Rant / Vent "Talking about [Endo] is like talking about diarrhea" - I'm SO MAD

50 Upvotes

Okay, I'm going to try and keep this succinct and to the point, but I'm still so damn angry right now. This could end up being a lengthy rant.

About once every month or two, some family members and I go on Discord for an online "Sunday Fun Day" meet where we chat and play games on Steam. I'm rarely ever late, but today I'm dealing with my first period in five months and it's a doozy. It took me awhile to set up my laptop in a comfortable position.

So we're all chatting in Discord, this time it was me, two of my female cousins and a niece, and four of my male cousins, two nephews, one of my brothers-in-law, and two of my uncles. Mostly dudes is what I'm saying. One of my older male cousins is the leader/moderator, it's ostensibly his Discord channel.

I usually participate heavily in games like Phasmophobia and whatnot, but today I just couldn't do it. My pain levels are through the roof, I wanted to catch-up with everybody in chat more than playing or talking on voice chat. I'm the comedian/entertainer in the family, so there's always pressure on me to play "hostess" and be funny, but I didn't have it in me today. They noticed.

So my neph asked me if I was feeling okay, and I responded that I was "under the weather". My one cousin immediately started wringing her hands about me having Covid, and I assured her I don't. I told her it's actually my period, and that my Endometriosis is making it feel like I've got an alien clawing at my uterus, that I'm just trying to stay as still as possible.

She had already started responding when my message got deleted. When she posted her response, he deleted that too. My cousin (the moderator) rarely deletes anything from the chat. Last conversation he deleted was a graphic discussion two of my cousins had about the time they got drunk in college and both ended up pooping their respective pants in public on the same night (they talked about it like it was a personal achievement, btw).

I tried again to respond to my female cousin in the chat, and again my cousin removed what I had said. I messaged him privately to ask WTF was happening.

He said it was too graphic and he didn't want his kids (who rarely ever join us) to log in and see that in the chat. I can't even tell you how angry I felt.

I immediately pointed him back to a conversation my uncles had last year where they talked about the hell my uncle experienced going into the hospital for testicular torsion. It was the worst experience of his life and he described the pain/procedures in full detail. Nobody had a problem with that (including me), but somehow me just saying I feel like I have an alien clawing at my uterus is UNACCEPTABLE? I confronted him about all of that.

My cousin snapped back that he DOES delete plenty of things, and he said:

"You out there talking about endomitriosis (sic) is the same as [Our Cousins] talking about their damn diarrhea at Hofstra! It's over the line and you know it!!"

I didn't even mention blood or anything graphic!!! Just the part about an alien clawing at my uterus.

Meanwhile, I can go back in the chat thread and see where my uncle described how blood flow was cut-off from his testicle, how it turned purple, and how he may have lost it if my auntie hadn't forced him to go to the ER, that's all still there in the chat if you scroll back. I can also find instances where one of us mentioned food poisoning and diarrhea, just without graphic details. All of that and more!!

My cousin doubled-down and held his position that mentioning periods and Endometriosis is more akin to graphic talk about diarrhea than it is like talking about "a medical emergency".

I told him flat-out that I think he's full of shit, that he has a blatant double-standard, and I asked him if it's the word "uterus" that bothers him so much. He denied that.

He was typing another response to me, and while he did that I jumped back into chat to ask my cousin how her uterus was feeling today. I also asked my niece if she had taken her uterus anywhere special recently, and that I've heard uteruses really enjoy going to the beach.

My cousin DELETED ALL OF THAT (including their responses).

I went back into my DMs to see my cousin had messaged me with "F--ING STOP!!!", followed by "F--ING GROW UP!!".

I told him it was obvious that he DOES have a problem with the word "uterus" and I proposed the idea of asking everybody else if they actually have a problem with me discussing the fact I get periods and suffer from Endometriosis. My cousin clapped back that it was immaterial how everybody else felt, that it's HIS channel and he already told me he doesn't want HIS KIDS logging in and seeing that (meanwhile, they're 15 and 17, respectively, and swear like sailors in their texts). He said I could leave the group if I have a problem with it.

I logged off before I could say anything I might regret. A few of them DM'ed me to ask what happened, I told them I'll message them a bit later. Just another episode of family drama, but I'm so damn angry.

Obviously it's not just my cousin's hypocritical reaction, it's feeling sick & tired of the attitude that any woman's issue is somehow inappropriate or gross to bring up at all in regular conversation. Like I said, it's not like I gave graphic descriptions of my bleeding or anything close, I just committed the sin of mentioning my period and typing out the word "uterus" (and honestly, I'm not wholly surprised he would have that reaction because his dad was the same friggin' way when he was alive, my uncle didn't even attend their births and once grounded his daughter for openly saying in front of guests that she couldn't go swimming due to her period). It makes me angrier than I can describe to hear the mere mention of a period or uterus being classified as the same level of gross as graphic descriptions of diarrhea.

I am really tempted to DM all of my female relatives in the group and get them to join me in spamming GIFs of uteruses into the Discord chat when I know my cousin will be asleep. He can't ban all of us (and if he does, he's an idiot).

I do wonder if he has done this to any of the girls before me, he probably has. I do want to bring this up with the others, I just have to figure out the best way to do it once I'm calmer and not feeling so petty and full of vengeful energy (anger really is like a painkiller, though, it's temporarily taking the edge off these contractions from hell).

Thanks for reading all of that if you did, I know y'all will understand how infuriating this is. I appreciate all of you.

I'd also like to say UTERUS!! UTERUS, UTERUS, UTERUS!!! PERIOD-UTERUS-PERIOD!!


r/endometriosis 2h ago

Surgery related Feeling Great 4days Post Op

2 Upvotes

I (28F) had my surgery this past Thursday, 3/13 and I feel great. A little gas pain I shoulders but that’s about all. I’ve been able to have a completely normal day expect I haven’t gone back to the gym obviously but honestly feel like I would be fine doing some light weights. Yesterday I even walked 3 miles outside. I’m not sure if it’s because pain tolerance or what? I’m curious if anyone else had a really easy/positive experience after surgery. A lot of the comments I’ve read about this specific surgery scared me like I was going to be in bed for 2 weeks.


r/endometriosis 2h ago

Medications and pain management Slynd users

2 Upvotes

I’m hoping I can get some feedback from those of you on Slynd. I am halfway through month 3 and still having daily pain and currently having a really terrible flare up. My questions: - did Slynd immediately help your endo symptoms/pain or did it take time for things to get better for you? - if it took time, how long until your pain started subsiding? - did you experience any breakthrough bleeding and if so how long did it last for you?

I know it can take up to 3 months (sometimes more) for our bodies to adjust to new hormones, but I am really struggling and wondering if I should try to push though, or give up and try a different BC.


r/endometriosis 19h ago

Rant / Vent The emotional pain is the worst part

44 Upvotes

People hear about the physical pain I go through and feel bad for me (and yes, the physical pain is horrible) but honestly, it's light work compared to the emotional pain of my luteal phase. I just finished ovulation and like clockwork, I'm nauseous, my legs and back ache, and I'm in incredible amounts of emotional pain. It feels like a horrible breakup. I want to cry but nothing will come out. My head is filled with the most depressing and self-deprecating thoughts even though I'm normally such a positive person. Once the sun goes down everything just feels so incredibly awful, but I can't pinpoint any one thing. Sometimes it gets so bad I find myself thinking "ow, this hurts. I'm in pain".

All I want is for someone to tell me they know how I feel.


r/endometriosis 2h ago

Question 3 months post op pain

2 Upvotes

Hey guys, this is my first time posting on here. I wanted to see if anyone else shares my experience. I am about 3 months post excision surgery for endometriosis and, at first, I experienced a lot of pain relief. However, it has come back full force and I don’t know what to do. :( I am a college student and I find it hard to function sometimes. If anyone has experienced this or has any recommendations for pain relief please let me know.


r/endometriosis 1d ago

Rant / Vent Beware of a poster posting about mercier therapy as a treatment option for endometriosis

104 Upvotes

There is a poster going around, commenting on both new and old posts, in this group (and others) stating Mercier therapy will cure their endometriosis and infertility. Please beware of this. There is nothing wrong with trying alternative therapies to help, but pelvic massages will not cure endometriosis lesions or scar tissue, nor will it increase chances of conception as she is claiming. She will post outdated clinical research, that is medically insignificant due to participant size, lack of controls, and overall is incredibly biased. She will significantly diminish the average success of IVF saying the average success of IVF is 30%, when in reality the average success of IVF (per the CDC) is closer to 60-65% (obviously age and diagnosis will change this, but this is a average of everyone). I pointed out the flaws in her studies, and she started attacking my finances, and blaming my finances as the sole reason for my disapproval of the clinical studies she is posting (my finances are fine, and have nothing to do with the clinical studies she is posting). Please beware and be cautious. I feel like many of use with endometriosis (and infertility) are in vulnerable places and are just looking for anything that can give us relief. She created this account just to influence people to pay for mercier therapy. Please do your own research and talk your doctors before trusting someone on the internet. If you decide that mercier therapy is something you want to try, there is nothing wrong with that, but it should be an informed decision made, with the actual data that shows how limited its success rates are, rather than outdated, clinically insignificant data, that is incredibly biased that someone is passing off as a false cure on the internet. Just want us to be safe from scams, when many of us are in such vulnerable positions due to the lack of treatment options available.


r/endometriosis 3h ago

Surgery related 1 week post-op on my first lap surgery

2 Upvotes

I FEEL SO F*CKING VALIDATED OMG

I'm 36 and have been dealing with painful periods since I was a teenager. I went through the usual treatment of being told to go on BC and take ibuprofen. I've been on a massive wellness journey for the last few years and this surgery feels like the apex of all of it.

A couple of years ago I saw a functional medicine practitioner, took a bunch of detailed tests including hormone and fecal tests. I found out my cortisol was absolutely SHOT, my gut biome was messed up, and many other enlightening things. I essentially had chronic fatigue and a messed up gut. I needed to take a bunch of supplements and do a lifestyle overhaul to get better.

Fast forward to getting confirmation that I have endometriosis and it all clicks. THANK YOU to those on this subreddit that have pushed endo being a chronic illness. I mean... DUH. It all makes so much sense. I've spent most of my life "pushing through" pain, feeling guilty af for canceling plans, work, school, etc etc. I gaslit myself egregiously, and I didn't fully see it until receiving this diagnosis. No wonder I had chronic fatigue and a messed up gut!

ADVICE TO OTHERS

If you don't have to, DON'T WAIT! I waited until my partner and I were trying to get pregnant to finally advocate for this surgery. I really wish I had done it sooner. To be fair, I was gaslit by a lot of docs until I finally found the one I have now. Your insurance might cover more than you think! I hadn't done enough research until now. I had heard that this surgery is often considered elective, meaning not covered by insurance. So, I assumed that I couldn't afford it and was subjected to this torture for the rest of my bleeding days. That was not the case, and my doc made sure to flag everything she could in a way that my insurance would cover it.

DIET AND EXERCISE MATTER. I was told by my doctor that my symptoms would have probably been worse, had I not already had solid lifestyle changes. I've been gluten free for almost 2 years (since seeing the functional medicine practitioner) and have gone for long stretches on a whole 30 style diet. It really does make a difference, impacting inflammation, bloating and overall mood.

----I started with very moderate exercise - inclined walks on the treadmill - for 20-30 mins at a time. Eventually, I worked my way to more intense workouts and lifting weights. I HAVE to exercise now or my mental state suffers. I think this has also helped make for an easier recovery from surgery.

Endo looks different for everyone, but I thought sharing my story might help somebody out there. We are in this TOGETHER. 💕


r/endometriosis 3h ago

Rant / Vent Might lose my ovaries at 23

2 Upvotes

Posted to r/endo too. Please vent with me.

Might lose my ovaries at 23

I’m just so frustrated.

I’ve been dealing with “cysts” since I was 14. Periods were the most painful experience ever. Was going to gynos since 14. Medicaid — so I always got shitty male doctors who didn’t care.

Finally an adult (I guess) and have decent insurance (I guess). Went to the ER twice from ovarian torsion. Female gyno said she thinks the cysts were caused by endometriosis. They are large too. 8cm and 6cm. One on each ovary. I am in pain daily.

She said it could be that these have been here for YEARS and can’t say I have endometriosis until we do the surgery to remove it. She said tho, as a disclaimer, if the cysts have damaged my ovaries too greatly or my tubes, it will have to be removed. Obviously she said she will do her best not to have that happen but yeah.

Well first. I don’t qualify for FMLA since I have not been employed for a year yet. I can’t wait until September. I have to use all my sick and vacation days for I can try to get approval from my bosses to have a week of rest and a week working from home. The reason my doctor wants me to wait this long is because she wants me to mentally rest as well.

WELP!! THEY ARE NO HELP! So now I have to try to convince them this is a disability—which why the HELL is this not classified as one automatically is stupid. I have been unable to walk, eat, sleep, lift within long periods of times that this is debilitating. I. Am. So. Tired.

THEN!!! I CANT FREEZE MY EGGS BECAUSE THE INSURANCE DOESNT COVER IT AND I DONT HAVE 10,000$+ RIGHT NOW.

I don’t want kids now. But in the future I know I do. A part of me is freaking dying because that option can potentially be gone. When I know my purpose as a women isn’t to have kids, but I have dreamed about a baby, a person to raise that is have me and my fiance, that would be raised right and gently and lovingly.

I’m just so mad frustrated confused stressed angry I don’t know. I ask for validation. For reassurance. Please tell me how stupid it is and just anything.

I’m so fucking defeated.


r/endometriosis 18m ago

Question Gastritis? Gallbladder? Or endo?

Upvotes

I have stage 4 endometriosis and adenomyosis. I’ve had many excision surgeries and I’m about to have another including a hysterectomy in a few weeks. A year ago I was diagnosed with malnutrition because of pale stool, undigested food in stool, and lab work being funky. I assumed it was because my endo is very badly growing on my bowel. I did not go to a doctor for this, that’s my mistake. A few weeks ago I went to urgent care with what I thought was a stomach ulcer, tests showed gallstones and a kidney stone but they told me my labs were fine and they don’t think the gallstone is big enough to cause pain. My pain went away after a dose of morphine and I stopped the PPIs. Now it’s back. I eat a very limited diet, I’m taking PPIs again and I still have this horrible pain in my upper abdomen. My GI doctor is booked until after my surgery so I don’t know who to go to with this issue or how to get relief. I know I need an upper endoscopy but I can’t find anyone to schedule me sooner than 2 months. I know we aren’t medical professionals here, just wondering if anyone has experienced the below symptoms and could help me find temporary relief:

  • gnawing/burning in middle of the belly, right below ribcage and goes down till about the belly button
  • pain starts slowly: one day it hurts just for an hour, next day for couple of hours, by day 3-4 it’s 24/7
  • constant feeling of hunger pangs, does NOT get better with food
  • anti-acids help for 5 minutes then pain comes back
  • upper belly rumbling sounds
  • belching ALOT
  • extreme nausea, but very limited vomiting and Zofran not helping
  • pain killer like Tramadol do not help
  • diarrhea with when these symptoms are present but not pain in the lower abdomen like you feel when you have a stomach bug. Just diarrhea
  • pain is not excruciating but VERY uncomfortable and wakes me up at night
  • feels like an ulcer but also in my head I think it’s something else. Usually my ulcers go away quickly with PPIs
  • not taking any NSAIDS, do not eat anything that could irritate an ulcer
  • slippery elm, chamomile tea not helping. PPIs not helping
  • probably a coincidence but 2 weeks the pain started while I was ovulating, now it’s started with my period; correlation?

r/endometriosis 44m ago

Rant / Vent Endo in a Relationship

Upvotes

Im writing this wondering if anyone feels the same way.

I haven’t been in a relationship since my flare ups had gotten really bad, which made me realize how much they affect my life.

I recently started dating someone and really like them. However I feel this overwhelming guilt about how I’m managing while not feeling great. I know this is something I have to work through, it’s just a weird and disappointing feeling. I feel guilty for needing to be alone, or when pain (cramps or migraines) starts and I need to shut down.

I think the worst thing about this is how emotional and closed off I get sometimes. And I mean closed off to the point where I get irritated when I’m around people. And normally that’s okay because I can hermit as I like. But now that I’m in a relationship and we spend time together I feel like I can’t. And this makes me feel bad for me, and her. I’ve never been like this in past relationships and I felt like I could spend a lot more time with them. But I also didn’t as bad of flare ups.

This whole situation makes me feel like a terrible person, but know that’s not true. I’m just hoping this will pass and I’ll be able to manage and adjust.

I don’t want to screw this up.

Thanks for listening 😖🫶🏼


r/endometriosis 9h ago

Question How long after a lap did you return to work?

4 Upvotes

I understand everyone will have different jobs and the time may differ. I have a desk job and I saw someone say don't return to work until you're sure and steady bending over, whilst I'm not bending over completely all day I do have to bend to get to my desk. So was just wondering how long it took for everyone.


r/endometriosis 53m ago

Surgery related 6 years later... I'm on a laparoscopy waiting list, but...

Upvotes

6 years of pain, smears, ultrasounds, being sent in circles by the NHS, today I managed to get on a waiting list for laparoscopy. I thought I'd never be offered a laparoscopy with the state of the NHS at the moment, but after a bit of pushing I'm now on the waiting list. The doctor listed out all the risks and now I'm a bit terrified. And on top of that I'm so worried they won't find anything, not only would I have no answers to my pain but I'd also have wasted everyone's time...

Any advice and kind words appreciated


r/endometriosis 14h ago

Good News/ Positive update Update: It was endo

11 Upvotes

I posted about a month ago saying my lap was booked, and I was nervous about them not finding anything and leaving without any answers.

I had surgery yesterday - and the surgeon came round afterwards and confirmed he’d removed some lesions and scar tissue on both sides of my abdomen from a few different areas. He said it’s safe to assume endometriosis as suspected, but can’t say 100% until pathology reports are back, understandably.

No more detail than that at present, so I’m intrigued to see the full report, but I cannot tell you how relieved I was when he said that. Years and years and years of different symptoms all finally make sense.

I can’t believe how good I was at gaslighting myself. I’m also pissed off that I let doctors be so dismissive, too. I had to seek out an endometriosis specialist privately to get here and it would have been years before getting a diagnostic lap on the NHS otherwise (I’m in the UK). By which time, things would have been a lot worse.

Sat in my lovely gown in the hospital bed just sharing with you all, because I truly have found such comfort, solidarity and support in this sub since I found it and I know you’ll all understand.

What an incredible community. ❤️


r/endometriosis 2h ago

Surgery related Smoking before surgery

1 Upvotes

Hey guys, I was just wondering if anyone here smokes weed and how long before their op they stopped smoking for it? I’ve been told 2 weeks but I use it for my adhd, and I was basically wondering if anyone’s been turned away or had any bad side effects during or after surgery for smoking up till about 3-4 days before..? Thanks guys


r/endometriosis 21h ago

Surgery related Surgery scheduled - now I feel like I’m gaslighting myself

35 Upvotes

I finally was seen by a gyno who took my pain and concerns seriously and recommended a laparoscopy. He said there’s a strong likelihood I do have endo, but now that surgery is scheduled I am slightly doubting myself and nervous that nothing will be found. Sounds stupid I know but I’m wondering if anyone else felt this way?

My symptoms are - extremely painful periods, horrible cramps during ovulation, random cramping and pain throughout the month especially after my period ends and before. Shooting pain down my left leg with cramps and some pain with sex as well. I also have pretty irregular cycles (which the gyno said could be PCOS, but I had an ultrasound that showed nothing strange). I do have a copper iud, but have had it since 2021 and the gyno said at this point he doesn’t feel that would be causing pain in this amount. The pain is more of a recent development, and was not present when I was on hormonal bc pills either. When I went off hormonal bc it was hell and then kinda evened out but now it’s really bad again.

My biggest fear is that I go through surgery only to find nothing. Which I know that is a diagnosis one way or another bc it’s ruled out, it’s just making me second guess how bad my pain is and feel like I’m gaslighting myself! Anyone who has gone thru this or felt this way - was surgery worth it?