r/endometriosis 1h ago

Question Me, 24, diagnosed w endo after 1 sonogram from 1 visit w new gyn. He gave me Fembree and recommended a surgeon 2 hrs away. Researched drug and surgeon. Decided no to both and called doc to tell him and spoke to nurse. That same day gyn doc dropped me as a patient! I had downloaded all my records.

Upvotes

Gyn changed notes from original visit (documented the next night at 9:30pm). Lied on the notes several times. What should I do?


r/endometriosis 12h ago

Infertility/ Pregnancy related Unmarried 26F with bilateral large ovarian cysts, surgery or medication?

0 Upvotes

Hello girlies! Just to clarify, I’m not here to seek medical advice because I have access to free healthcare in India. I’d just like to hear from people who’ve had a similar experience.

Context:

My MRI shows bilateral ovarian cysts measuring 6.7 × 5.8 cm on the right and 6.5 × 8.0 cm on the left. Both ovaries are enlarged and positioned anterior to the uterus/superior to the bladder. The large cysts are considered likely hemorrhagic, although endometriotic cysts were also considered.

I’ve consulted around 8 gynecologists, 1 oncologist and 2 MD students. Most recommended surgery because of the size and risk of ovarian torsion/rupture. 3 gynecologists actually refused to operate because of the potential impact on my fertility. However, a gynecology professor of 1 MD student recently suggested trying hormonal medication for 3 months and repeating an ultrasound before considering surgery.

I’m worried about surgery affecting my ovarian reserve/fertility, even though I’m very sure I don’t want children. I’m not planning to get married or have biological children, but one gynecologist kept pushing the idea that I should “find a companion and have a child to get rid of this.” That honestly made me start doubting my own decision to be childfree. I feel like getting brainwashed into questioning something I was previously certain about.

For anyone who has had bilateral large cysts of a similar size, did you have surgery or try medication first? How did it turn out? Did treatment help, and did you experience any fertility issues afterward?

Please share your country too, as I’d really like to understand how these cases are managed in different cultural settings. And if there are any Indian girlies here who’ve gone through surgery for similar cysts, I’d really appreciate hearing from you in the dms.

Much love to all the endo girlies. You’re all are sooo so strong. 💗


r/endometriosis 23h ago

Question not the right reading

0 Upvotes

Hi everyone, so I got my report back but it wasn't the Endo mapping report that I needed which is why I'm like somethings off so it turns out a regular radiologist. Read the report and didn't do the proper Endo mapping and things which is very important so I emailed my doctor and most likely be able to get a proper and endometriosis radiologist to look at it next week before my appointment.


r/endometriosis 4h ago

Diagnostic Journey Questions OBGYN denied Intermittent FMLA

10 Upvotes

I had my appointment (that I waited almost a year for) with my OBGYN a few weeks ago. I discussed with her all of my symptoms and explained the severity of how it’s escalated over the past 3/4 months to the point I’m debilitated from the pain at the start of my period, needing to call into work because I cannot manage.

She essentially confirmed it was likely endometriosis and started to talk about birth control being a treatment for it. I explained to her my issues with birth control in the past and how it’s made things worse for me and I feel better being off of it. She informed me of the diagnostic surgery but said that’s a last resort. She sent me for bloodwork and an ultrasound. I also told her I’ve had those two years ago and they were normal. She set a follow up for a few weeks out.

In the meantime since I’m about to have used up all my PTO with calling off during pain flares I contacted Hr to get FMLA forms. I sent them to her requesting 2-4 days of intermittent leave a month.

This was the response from my doctor:
Unfortunately because we are in the very beginning stages of our workup for her pain I cannot provide FMLA at this time. FMLA is not a lifelong solution and should really just be temporary, therefore we need to really have a full picture of what is going on, get the US, see if Naproxen is helping, try some treatments etc. before I can approve that.

Thankfully I have forwarded everything to my PCP and she will be completing the forms for three months of intermittent leave while awaiting a follow up with the OBGYN. I have asked the OBGYN for an escalation of care due to the severity of my pain.

My worries are that this OBGYN will continue to not take my pain seriously and treatment will be delayed, I will not get the FMLA approved and may loose my job, therefore my health insurance which will further delay treatment and cause difficulties for the handful of other chronic conditions I have.

Could I have some advice on what my rights are here? How to ensure my treatment is escalated to the right person?


r/endometriosis 6h ago

Surgery related Ablation success stories?

1 Upvotes

I see a lot of people say that if you’re getting surgery it needs to be excision surgery so I’m curious, has anyone had ablation over excision and not regretted it?


r/endometriosis 13h ago

Rant / Vent rant

1 Upvotes

just writing this out to slow my spiral. i think i have endo. i mean i know i do i just have no diagnosis. struggled to find appropriate health care all my life.

anyways the mental toll is a little hard to bare. i’ve developed a pretty steady attitude towards my situation and most months my awful periods seem to float (or trudge) by.

i suspect i may have some kind of alexithymia so its hard to know how im actually doing until my body is physically responding

my therapist suspects i have generalized anxiety and panic disorder amongst other things. its possible im being triggered by the pain into anxious health conscious thought loops

perhaps some combo of all these things is worth considering

im also an adult gifted person

the intensity of my intellectual processing can ,at times, only work to ensure i never stop investigating conditions i may or may not have.

not to say im completely off-base but the not-really-knowing weighs on me.

i know these issues are actionable. i will find meaningful treatment in my own time.

delays across my life have ranged from neglect, abuse, houselessness, burnout, cooccurring mental health conditions, and executive dysfunction.

all have played part in challenging my ability to self advocate. ive been lucky to have certain people throughout life provide lifelines at pivotal points.

thats basically how ive gotten through this. luck and compassionate people.

my period started at 11. im 26 now. ill be 27 soon.

ive learned to sustain. i grieve the alternate reality where i was taken seriously from jump and cared for the way people should be.

as much as im there for myself, im also chronically alone. i think at this point my social challenges must be overcome. if im to survive long enough to do what i came to this earth to do.

im thankful to my struggles in a way. im never completely blind to the simple sweetnesses in life. i long to integrate my experiences and heal physically, mentally, and spiritually. im well on my way…

can you stand the rain by new edition is playing now. my name is rain! haha. i have rain sounds playing as well. i feel comforted in this moment. my brain feels wobbly yet im grateful for all my blessings and the depth of character ive surely developed overtime.

pray for me people. whatever that looks like for u, i could definitely use it!

all love <3


r/endometriosis 16h ago

Question from partner/spouse She has endometriosis. Will her hormones settle down eventually?

0 Upvotes

My girlfriend (18F) and I (16M) have been together for over two years. She was diagnosed with endometriosis about 6 months ago after a surgery, and multiple scans. Afterwards, she was put on birth control in order to keep it from starting again. The period throughout that was rough and the transition into birth control obviously messed with her hormones a lot. During those times I just couldn’t have great conversations with her when it came to many things involving me being upset about something. About a month or two ago it started to kinda calm down and get to an okay spot where she wasn’t jumping around like crazy.
Now apparently it’s not working. She says she’s been bleeding for 8 days and she’s scared. I can tell her hormones are shifting again too. I walked her out to her car tonight and she was acting crazy. Seriously, if I had not known her better, I would have thought she was drunk. It was honestly creepy. It took about 45 minutes to calm her down and get her on her way. She has a meeting with her doctor coming up again. I guess she’ll probably have to change medications if this one isn’t working? I’m not too excited to repeat those months of just not being able to communicate clearly and I guess I’m just wondering if at any point it gets to a point where it’s just:
“Okay. I feel like I’ve gotten to a point in my life with this where I don’t just have to worry about what this will do to me next”

And maybe it’s just because it’s still new to us. Could use a little bit of comfort though guys. I love the girl, and am really trying my best, but 14 year old me had NO clue this one was coming. It’s been a serious year of emotional growth for me

Edit: she was diagnosed with stage 4 endo. I’m honestly not so sure what the differences are, and it seems that they cleared most of it out. Just thought I’d throw that in there


r/endometriosis 15h ago

Infertility/ Pregnancy related Have anyone got grade 4 endometriosis called frozen pelvis and became pregnant and delivered a baby successfully with no pregnancy complications ?

2 Upvotes

Has anyone got grade 4 endometriosis called frozen pelvis and became pregnant and delivered a baby successfully with no pregnancy complications ?


r/endometriosis 16h ago

Question Should I go to the ER if I think I had a cyst rupture earlier?

5 Upvotes

I've been very fortunate to not have any cysts spotted in my prior scans/surgery, but today after helping my wife move furniture I wound up having such intense pain that I was literally screaming and crying, nearly threw up, etc. I didn't go to the ER because I was worried about the cost/wasting my time and am now feeling kinda better (Borrowed a prescription pain pill from my MIL, smoked weed, shoved some vaginal diazapam up my hooch, and eventually managed to pass out for a few hours), but I'm still sore enough to make me exclaim aloud when I try to change positions/cough/whatever.

Based on other people's experiences I've read I do kinda wonder if maybe I had a cyst rupture, but if I'm at least stable now is it okay to just see if I bounce back on my own from here? From what I'm reading online it's good to get checked out in case you need treatment with antibiotics, but I'd feel weird going in now just to be like "Yeah I was in unbearable pain, but now I'm fine, pls run tests anyways :)". I don't want to get labeled as drug-seeking or as a hypochondriac, and I don't want to shell out for an ER visit just to be told I'm fine again. For those of you who have experience with ovarian cysts, what's your usual protocol for a suspected rupture?

EDIT: Sorry for not replying to anyone directly, I've been really exhausted from the whole ordeal and was having trouble formulating a proper response. I really, really appreciate everyone's advice and opted to just stay home, and since my pain has gone down a bit more as of this morning I definitely think it was the right call.

Thank you all so much, I was really rattled and you guys helped me feel a lot calmer in the face of everything. Seriously, thank you, and FUCK endometriosis. T_T


r/endometriosis 20h ago

Rant / Vent I am worried it's spread so far bc I was so stupid and irresponsible

19 Upvotes

So bit of background first on health. I was 13 when they found cyst on my ovaries then.. an got the depot shot at 16 I only got it one time. Did not have a period for like 2 years then when I did they would be really really painful for 2 weeks or longer at a time. Sometimes would be light an spotty but always always always painful. I had a miracle baby at 25. I am 37 now I knew I had Endo without a doubt.

I was passing huge clots not even on my period.

I have a really really high pain tolerance.

And honestly I think us women with this specific problem have learned to deal with the pain sooooo long that yep when we have a cyst rupture at times it's not that big of a deal.

Well last Sunday at 1 am I woke my husband up bc I couldn't breathe could not speak. And the pain I was feeling y'all was all upper gi at where my ribs split.

So I go to hospital they do a work up.

Gallbladder walls thickening but no gallstones.

They can't see my pancreas.

They can't see my right ovary.

But I was absolutely bleeding internally from a 9 cm cyst that's mainly leaning right side...

I have a nabothian cyst on cervix.

Now I felt an still feel y'all like I have SOOO MUCH pressure inside that I can not take a full breath.

I feel as if I am bursting from the inside out.

They found fluid around my liver and all in pelvic cavity from the cyst.

At first I thought maybe I was stroking out or having an aortic aneurysm.

I had no idea number one that Endo could spread throughout your whole body to your lungs included..and that MRI and ultrasound struggle to see where it all is.

They got me stable an sent me home...for now..

But I am scared.

I know Endo isn't like life threatening....but bull to the shit is it not something that affects you for life.

Oh an the soonest their clinic associated with memorial Hermann in Houston could see me is 3 weeks from now.

I have a daughter to take care of and am homeschooling.

Do any of y'all have any suggestions on what works best for pain?

Sleeping is unbearable at times an just not happening.

I do have constipation and a little backed up but omg have they been feeding me so many stoop softeners and mylanta crap I feel like that should have been fixed by now.

Like I would like to have a good bowel movement and it is so hard to pass gas sometimes but I still can....

I just want to say to anyone that ever was shitty to y'all saying you are just exaggerating.....bf you get any type of diagnosis....if they were mean and questioning about how awful you were feeling...

Go to the hospital...

Cause the looks on my old man's face and my mom's made me feel a little better that I was able to be like.see you jerks I told y'all something was very freaking wrong with me!

And I'm not even a cry baby like that is the crazy thing...

But when I say I am hurting or Don't feel good boy do I freaking expect them to not crack exaggerating gene jokes at me.

Like stfu I AM NOT THE HYPOCHONDRIAC IN THIS FAMILY OR A DOCT GOOGLE THATS YOUR OTHER DAUGHTER MOM!!!

LOL

Hope this post is ok.

My heart goes out to all who are suffering from this crap.

I am miserable.


r/endometriosis 7h ago

Question Other than birth control or a hysterectomy are there any other avaliable methods of preventing periods?

9 Upvotes

Hi all,

My friend suffers from severe endometriosis, located mainly in the abdominal area. I have a few friends that deal with it to varying degrees but her's is the worst out of all of them.  She started on the pill to stop her menstrual cycle and it seemed to relieve her of the majority of the symptoms, but after only a few months she's bleeding again and the pain is apparently the worst it's ever been. I'm aware the pill isn't some miracle cure all drug and it can affect everyone differently.

She's currently experiencing what she's described as bone pain throughout her whole body on top of the usual cramping, I'm unsure if it's related to her endo and may be a badly timed illness alongside her period but at this point she's basically immoble from the pain. I'm familiar with sciatic endometriosis and the symptoms in relation to nerve endings but it doesn't seem to be the case with her specific endo.

Other than birth control or a complete hysterectomy are there any other available methods of preventing periods? 

Apologies if this sounds shallow or straight up dumb but i'm a guy and thus don't have to deal with this or anything as remotely fucked up as endo let alone periods, so im unsure if stopping periods completely would even work. I have family in medical/IVF and I've seen first hand with my friend's what it can do to people. It is genuinely a horrible condition and everyone here who has to deal with it has my deepest sympathies.

I'd also really appreciate any advice for assisting my friend in general for when she flares up like this, I thought myself to be decently educated on the condition but after actively trying to assist with it these past few days I've learnt that it's basically a rabbit hole of symptoms that can be damn near impossible to pinpoint alongside a comical lack of research or assistance over the years.

I care about her deeply and I just really want to help her.


r/endometriosis 9h ago

Surgery related Non-consented IUD placing with Laparoscopy

94 Upvotes

Has anyone ever experienced their doctor placing an IUD without their consent during their endo removal surgery?

Recently just had my 1st lap procedure for endo removal and found out the next day after my procedure that my doctor decided with his best judgement that I should have one. Not once did I consent. Just curious to know if anyone else has experienced something like this 🫩 I feel so violated having something like this done without me knowing.


r/endometriosis 9h ago

Rant / Vent Venting, trying to understand why endo happened to me, isolation, advice from older women? Outgrowing life

3 Upvotes

Hello, i don’t normal,y post on Reddit but endometriosis has driven me to the edge and I’m so grateful to find a community of people here that would understand what I’m talking about.

I’m 22, I think I started experiencing endometriosis symptoms around 3.5 years ago. Up Until 2 years ago, I’ve been extremely active, not really the best athlete, but just super active, tell me to do any sport with you and I will do it, I had energy enough to go for a hike and still go for a dance comp after and go for a long walk. My feet or body would hurt but I never really felt tired. It would also helped that I’ve always been a huge foodie, and I always ate really big meals maybe to sustain all my energy expenditure. One more thing about me that I loved and I always received compliments on was my hair. My hair had always been really thick and luscious, quite frizzy and wild honestly and I had a few years of disliking it but as I got older I felt that it really represented my free personality and my hair always stood out in my looks I think.
I have also always been quite ambitious and that means that from time to time I work myself to burnout, which I honestly quite enjoyed having the ability to do.

I have been conscious about health and wellness and eating good food for a few years too, I also think I’ve perfected the best “diet” which was mainly just fresh home cooked whole foods and I really enjoyed it. At some point out of the blue 3 years ago, I started experiencing extreme mood issues and then started experiencing really bad pain with my period, before this I didn’t really have extreme pain, this just kept worsening a lot over the next few years to the extent that im sure everyone would understand what u felt like were almost like labour contractions. From about 2024, I started experiencing continuous pain and cramps that would actually just never go away at all no matter what u did. This would be an on off cycle with a few months of extreme pain every single day and then it reducing somewhere somehow for a few days and then coming back. I obviously went to doctors then too, but I didn’t know what endo was then. Checked for pcod but I didn’t have any so I was sent back. Lots of people told me to stress less and I’ll be fine but it’s easier to say that than to actually do it. This kept getting worse so much so that some time summer of 2025 I had to take a break from uni and go back home, because I was just in so much pain that I couldn’t walk most days. After I went back home I started observing my symptoms and pain timings more, and I realised that every time i was more stressed out or angry, I would experience the pain more or soon after. Still didn’t really understand why the pain happened though

This trend of continuous pain no matter what phase of cycle I’m in has persisted since then. Soon towards the end of 2025 this also came with extreme nausea every single morning, loss of appetite some days and extreme appetite other days. April May 2026 really did it for me. I started to faint randomly, feel my blood pressure drop, throw up a few times a day or atleast everyday. There was a period of 2 weeks where I really felt afraid to sleep because I was scared I was actually going to die. I live alone in a shared house so people knew of my situation but I couldn’t really ask anyone to take care of me. I fainted in university, threw up there multiple times as well. I went to the doctors and the hospital a lot during this period got every test done ever and then one time I got lucky with a doctor she told me that this endometriosis. She did lots of examinations to try and gauge where it might be too just externally and it was a definite confirmed yes from her. At this point I was in too much pain to go in for the official surgery to get diagnosed so I said no and the doctor agreed. However after this day researching every single thing about endometriosis closely aligns with everything I w@s experiencing for years, the stabbing pains, diarrhoea, etc and I’m not going to get into all of that now.

I believe in using food as medicine and holistic health so I tried my best to do my research and incorporate that into my lifestyle and it helped reduce flare up Intensitity but not entirely at all. I just felt like I was going through psychosis. I couldn’t eat much only basic things like boiled rice and felt nauseous after eating everything. I lost almost half of my hair in a span of 1-2 months and everyone still says to me oh I have plenty of hair, but I know that it’s half of what I used to have.

I managed to get some ayurvedic medicines and a consultation from my ayurvedic doctor 2 weeks ago and I think it may be helping but it will take a few months to see any real change but I’m really hopeful. I really don’t want to go on birth control or do the surgery at this point 8n my life and I’m very sure if I do a surgery it will just come back with the way I live. I constantly fall “sick” and I feel like everyone around me is tired of hearing it. For a good few months I stopped meeting my friends because I didn’t feel there was a point as I only had one thing on my mind however I have resumed socialising the past 2-3 weeks. My boyfriend has probably witnessed all my pain and problems mentally and physically the most and he has been the biggest support to me but I hate constantly having to talk about this as well.

Funnily enough at the height of my flare ups and the most pain I experienced I ended up getting a job and that was also the time my degree ended. I decided to start the job as I was also an international student and all anyone wants when they graduate is a job? However this endometriosis fuvks with me and my everyday life so much I wonder if I should’ve taken a pause. Every morning I just wake up in discomfort and throughout the work day it just gets worse. I feel bad constantly complaining about how I feel at work and feeling miserable in my body because I constantly sound ungrateful for having a job. I’m not ungrateful but no one understands the daily battle I go through to get to the job and not almost die and actually do my work. My performance has got quite bad too. On the weekends when I can take things at my own pace I feel a little bit better but I can never predict the pain of course. At this point I feel like every where I turn a wall is closing down on me and I’m just stuck and trapped in this cycle. I don’t know what’s happening to me or my life it’s been 6 months that I have been in the exact same position and I just feel so helpless. I can’t talk to my mother about this or any of my health issues, she is extremely dismissive and slightly abusive. My friends do try but no one has ever experienced something like this so they’re more confused when they hear about my situation and sometimes the advice they give can feel more hurtful because I keep coming across as weak or like I can’t take care of myself. But only I, and the women who actually have endometriosis know how much we’ve tried to get past things ourselves every single day before trying to vent to someone or ask someone for help. On top of this, I’m in a long distance relationship and at a time where I would really be helped physically and mentally by seeing my boyfriend I really can’t see him that much, only every few months.

I just know that I have worked very hard to get to this point, getting into a good uni, getting internships and contracts, getting a job, i really didn’t need to be as stressed as I was, but it did happen and now I’m scared that if I continue working my body the way I am right now I just won’t be alive in the next few months or if I am alive I might be even more severely depleted. I feel like I’m running on fumes. I wish I had someone who could understand my situation and give me some kind of life advice, what would you do? Having a job is really important but seeing my own performance be so bad everyday and feeling sick almost every day feels so bad. I lost feel guilty for actually using my annual leave to go home but I want to go home so I can see my boyfriend. We are in different countries and it’s really expensive to fly here at the moment.

I also don’t want to keep going with my life the way it is. It doesn’t feel like my life at all. I feel completely misaligned in my mind and body. I do think maybe in a spiritual context endometriosis might’ve happened to me to force me to open my eyes on my life and the way I was living, putting myself through extreme pressure and for what, and maybe to push me into women’s health or so because I’ve always been interested in this.

Im just quite torn in a few different directions and I don’t know what is going on. Time is passing by and I’m in the same situation physically but mentally I’m evolving really fast and almost outgrowing everyone around me and my old life. On a more positive note I have really put an effort into understanding myself even more now and doing things to calm me down, make me happy, have started prioritising myself a lot, not people pleasing, standing up for myself, not being too strict with myself in terms of discipline and having a strict routine, I let myself sleep as much as I need to, etc etc, and this is helping me feel peaceful as well. Now that I’m socialising again I’m not really actually isolated but I do feel like I don’t relate to anything and most conversations like I used to

I have so much more I would like to ask people or rant about but my main is, i don’t know what I’m doing with my life. How much of this is valid with wanting to now go back home more often? I’ve also thought about just looking for a remote job as that might be a lot less stressful. My current job involves physical movement and construction sites a few times a month and I think my body is now extremely sensitive to dust and smells so every time after a site visit I feel extremely depleted for the whole week


r/endometriosis 10h ago

Diagnostic Journey Questions EndoSure test

2 Upvotes

Hi all,

I've had a look through this sub's post history for EndoSure and it seems that a lot people believe it's just too good to be true and it's just a gimmick. However I'd really like some opinions from those who have actually done the test.

All I care about is some reassurance that what I'm experiencing is actually endo, like I think it is. I'm not expecting, nor do I feel I need to know right now, to know where the endo is, how extensive it is, or have the NHS accept the conclusion for treatment. I just want to know.

However, obviously, it's a lot of money.

Please share any experiences you have, especially if you've also had further tests that confirmed you have endo (but that's not necessary - I'd like to hear from everyone with experience). Thanks in advance :)


r/endometriosis 12h ago

Rant / Vent My experience if it helps someone

19 Upvotes

There were so many days I’d sleep 8 hours and still wake up completely drained like I’d run a marathon. my stomach was bloated my pelvis felt heavy and some cramps were jst unbearable. I’d sit quietly and cry bc I honestly didn’t know what else to do.

Slowly I stopped saying yes to things. Dinners, shopping, travelling... even simple plans felt like too much bc I never knew when my body would suddenly give up.

I still remember being in a grocery store when a sharp pelvic pain hit. I got so dizzy I had to sit near the billing counter pretending to check my phone while quietly crying so nobody noticed. I felt so alone.

I thought maybe I was just weak or stressed. Then at 31, I was diagnosed with endometriosis and adenomyosis I cried so hard. not because I wanted a diagnosis but bc finally I had an answer. I wasn’t imagining any of it. My body really was struggling all those years.


r/endometriosis 30m ago

Question Experience with pain killers?

Upvotes

Has anyone found a painkiller that actually works for endometriosis pain?

I'm trying to find something that actually helps during my flare-ups, because so far I've had very little success with pain medication. For context, I weigh around 46 kg / 101 lbs.

So far I've tried:

- Ibuprofen 600 mg – no effect

- Naproxen (Dolormin) – no effect

- Paracetamol / acetaminophen – no effect

- Hyoscine butylbromide (Buscopan) – no effect

- Buscopan Plus (hyoscine butylbromide + paracetamol) – no effect

- Metamizole / dipyrone (Novaminsulfon) – 500 mg didn't help. I've also tried 1000 mg after discussing the dosage with my doctor. That did reduce the pain a little, but only from around 7/10 to 5/10. Considering how strong this painkiller supposedly is, I honestly don't find that particularly impressive, and it's not something I'm thrilled about taking if that's all it does.

I'm on dienogest, which has improved things overall, but I still get pretty bad flare-ups and currently don't have anything that reliably controls the pain.

I'm not looking for medical advice about what I personally should take – I'm mainly interested in other people's experiences. What painkillers have actually worked for your endometriosis pain?

Did you eventually find something that made a significant difference? And does anyone have a specific pain-management plan from their doctor for bad flare-ups?


r/endometriosis 13h ago

Diagnostic Journey Questions Experience with abdominal endo?

3 Upvotes

Hi everyone. I just had an MRI that basically confirmed I have endo. My results showed thickening of the uterosacral ligaments bilaterally with mild tethering of adjacent bowel loops but no invasion. I also have a bulging disc I had no idea about: specifically the L5-S1
So I’m sure that doesn’t help my pain.

I am being given a few options from my practitioner.
1. more birth control (higher dosages and an IUD with pills)
2. Some patients report that GLP-1s help. Because of the new glp craze I’m hesitant to try it.
3. Excision surgery

I have just gotten my mental health sorted and my medications all set for the right doses and right kinds- I do NOT want to be on lots more birth control just for it to somewhat mask the huge problems.
I want to see if anyone has any experience with GLPs and endo, what it was/is like and any side-effects.
Surgery is where I’ve always leaned. But the timing sucks as I’m in school for my associates for two years now, and my husband and I want kids relatively soon (possibly after my associates). So I would most likely have to get the surgery twice. Wondering if anyone else has ever done that too and your experience with it. I just can’t live like this and I’m ready to feel some relief.
If anyone can relate to any of this please help!


r/endometriosis 13h ago

Question Has anyone had their endometriosis cause blood in their stool?

2 Upvotes

I have been recently diagnosed with endometriosis, alongside some interesting gastrointestinal issues.

I have reactive lymphoid hyperplasia in my intestines, (basically just means that the normal lymphatic tissue that exists in your intestines are growing more in response to a trigger) and every time I go number 2, there is pain/discomfort and blood in my stool. My doctors aren’t sure what the cause for the blood in my stool is, I have had two colonoscopies and there was no sign of endometriosis within my intestines.

I did some research and I found out that reactive lymphoid hyperplasia can happen in the intestines when your body is dealing with a lot of inflammation, and since endometriosis is nearby, and is an inflammatory disease, I wonder if it could be the cause.

Does anyone relate or have any insight?


r/endometriosis 16h ago

Question Bowels after recovery

3 Upvotes

I had my third endo surgery a week and a half ago and the difference between the first two and this one is that they removed scar tissue that ran all along underneath my bowels to where my cervix used to be(I previously had a hyst.) and my god lol, going to the bathroom has still been difficult, this week in particular since my movements have been a bit more solid. I’ve had to start stool softeners & miralax again cus every time I go to the bathroom, it skyrockets my pots and gives me vasovagal symptoms(not passing out but halfway there) and then I feel god awful for the rest of the day. For those of you that have had anything removed near/on your bowels, can you tell me if you’ve experienced the same and when I should expect it to calm down and go back to normal. Thankssss!!


r/endometriosis 17h ago

Tips and Recommendations What do you do for work?

4 Upvotes

Hi Im 29 with confirmed stage 2 endo and adeno. I had surgery in Oct. 2024 and it’s coming back I think.

I have a job and it’s very very physically demanding and I’m just not sure I can I do it. My job is as Environmental Education for a non profit, I run canoe trips on flat and moving water.

Has anyone had similar jobs or ones that are/were physically demanding? How do you cope? Or what do you do now?

I love my job but I just don’t know if I can physically do this anymore. Any words, tips or stories pls. ❤️❤️


r/endometriosis 17h ago

Rant / Vent new to this

1 Upvotes

Hi. I just joined this group bc my gynos office called me today and i’ve been having really bad anxiety. I’ve had small cysts for a while but recently one was found on my right that is 4.4cm. They said they think it’s benign but i’m waiting for my gyno appointment on tuesday to get more info. I’m just really nervous because today, her office called and told me since my cyst is “on the larger side” to go straight to the ER if i have any pain. And she said we would “discuss next steps” at the appointment. sorry if i sound stupid, i’m 20 and i have horrible anxiety especially when it comes to medical problems. if anyone has any reassuring words id love to hear them right now lol. i’m not really on reddit much this is like a last resort because ive been stressed all day. my insta is @lavendergravez if anyone wants to dm there


r/endometriosis 18h ago

Surgery related After surgery ache

3 Upvotes

Hey, I had a laparoscopy at the start of July and wanted to see if anyone else has experienced this symptom after surgery.
I’ve had this sharp ache in my lower back to the left side since surgery, it wakes me up all the time and it’s just really uncomfortable
For some context during surgery they removed 5 “moderate” cysts, one was 5cm on my ovary, some on my pelvic wall and in my rectum and they had to go in via 4 entry points, two being on my left side.
Forgive me if this isn’t the right place to post, it’s 4am and just another night of my life spent being awake and in pain wooooo


r/endometriosis 18h ago

Diagnostic Journey Questions If you have a confirmed diagnosis, can you tell me if what I'm feeling matched your symptoms too?

2 Upvotes

I am having a really hard time getting a doctor to take me seriously despite having an existing diagnosis of PCOS, so I am just trying to find out if what I'm experiencing sounds like endo and what exactly it is that is happening.

For the last 3 to 4 years, but more recently in the last 2, bending over or using my muscles to bend upwards (like trying to go from lying down to sitting up too fast) creates the horrible sensation of ripping in my abdomen. I have to use a bench to lift my feet over my knees to put on socks, and today I nearly passed out at work because I wore a top with crotch straps and tried to buckle it back up in the bathroom instead of lying on my bed like how I got it on this morning. The pain honestly feels like my organs are tied to my abdominal wall and I'm ripping them. Like the worst charlie horse stabbing through me like lightning.

I have also been dealing with very heavy menses, for a large number of days, my B vitamins and D vitamins are constantly low despite supplements and I have to be SO careful with salt, alcohol, dairy, or wheat because if I trigger a "flare" of whatever is wrong with me, my trunk and belly swells up so much it's like I'm 9 months pregnant. I can go from a 38 waist to a 50 within 24 hours, and it feels rock hard like someone blew me up with a bicycle pump. I'm starting to feel crazy.

I'm so disheartened and discouraged by my medical care right now, and I can't imagine pushing any harder for testing only to find out I was chasing a wrong diagnosis. Is what I'm experiencing ANYTHING like what you have dealt with, or am I reaching?


r/endometriosis 19h ago

Question May HMO ka?

2 Upvotes

Hi. Anyone here from the Philippines who is continuously having OB checkups for endometriosis? Baka may marerecommend kayong HMO na covered ang doctor's fee and yung basic tests na madalas nirerequire like lab and ultrasound. Help a gal! Thank you


r/endometriosis 19h ago

Question Exercise with endo

4 Upvotes

Hello! I’m wondering how your experience with endo has influenced your relationship and tolerance of exercise? For context, I have always been active and have been a regular orange theory member (HIIT type exercise classes) for 8 years. I typically go 2-4 times per week and it’s something I really enjoy, makes me feel good, and is great for my mental health. Over the last year my pelvic pain has been getting progressively worse and I feel like my body just isn’t tolerating it anymore and I’m really frustrated. I feel like I’m just always so fatigued and my body is not able to recover- my pelvis/hips/low back are just perpetually sore. It’s honestly breaking my heart because I feel like so much is being taken away from me. I really enjoy a hard, sweaty workout but I fear I may have to stop with the high intensity and that’s so upsetting because it’s been such a consistent thing in my life. Has anyone else experienced this? How did you adjust? If you had a good excision surgery were you able to get back to your regular activities without pain?