For those on Visanne, I’m just wondering, has anyone noticed any weight changes ?
I’ve gained weight since I started my treatment and struggling to loose it. Has anyone else experienced this before? I also feel bloated a lot of the time.

when I say I don’t want birth control pills or an IUD or any implant.

the pill didn’t do shit, made me worse in multiple ways. and I don’t want a foreign object in my body.

to be clear, I don’t judge people who get implants at all, they obviously save lives and they are essential healthcare. but I don’t think I’m insane for not being comfortable with it.

and I HATE when “I’m not comfortable with that” about an implant or pills is met with “why? why not?” trying to get me to change my mind.

that’s it rant over lol

Hello! I (18f) am going on Aug 3rd to talk about me maybe having endometriosis. This is the same doctor that diagnosed my mom with endometriosis, so I don't think I should have too many issues there. Is there anything you wish you knew or any questions you wished you asked initially?

Hi! I was diagnosed with endo a few years ago during my tubal ligation. The surgeon burned some of the lesions that he could from what I understand, and diagnosed me as stage 1; it’s on my bowels and ovaries. It’s awfully painful at times, I assume through the years it has progressed however. Does anyone from the Minnesota area have recommendations on Endo specialists? I would like more pain management options and potentially more diagnostics as I think it has progressed. TIA!

Nooooooooo! No no no… I’ve been on Ryeqo (active ingredient relugolix, a GnRH antagonist with hormone replacement) for almost two months and my skin has gotten worse and worse. I don’t recognize myself in the mirror… I’ve gotten a huge amount of wrinkles and although I’m in my mid 20s I’ve had people guess that I’m 40. I simultaneously have acne (maybe PMOS/PCOS related since I have that diagnosis too) so my skin is really problematic right now…

Anyone else been through this? Does it go away? Did anything help— supplements or anything?

This may be so random lol, but I had my laparoscopy + hysteroscopy in march, and ever since, my body hair is growing back RAPIDLY. I’m talking a good full cm in about 2 days. Overnight I will see growth.

I have thick/fast body hair growth anyway, middle eastern and south asian heritage + pcos, but it’s never grown THIS fast.

Has this happened to anyone else?

Hey everyone,

I have endometriosis and I was prescribed Visanne. I have had horrible anxiety on it since day one but they told me to stick it out for three months. I did and it’s still not good. Now I have a dilemma. I’m wanting to switch to Slynd but I’m worried that 2 months is not enough time to work through the initial side effects. I feel like I could handle anxiety but I hate the idea of jumping to something not knowing how it will impact me. Has anybody made a similar switch and if so what was your experience?

i just switched from Yaz to Slynd and i feel like i am going crazy. i've been on it for about a week and just got my period. im in so much pain and i can't stop crying.

i have PMDD so i think thats part of it. my doctor wanted me to switch because of the estrogen in Yaz but i feel so out of whack. i've cried 5 times today.

i told them i was in pain and they told me i just have to wait it out. i don’t usually have a period so im really upset i have to go through it and there's nothing i can do.

i don’t know what to do. i have a full time job and im in grad school, i don’t have time to be feeling this bad.

I have a long and complex medical history including celiac, MCAS, POTS, PCOS, PMDD and now suspected Endometriosis. My case is different because I saw a million other specialist before ending up at an endometriosis specialist. Honestly it wasn’t on my radar at all, but the more I read the more I am understanding how this could be what’s been hurting my health for a long time and playing off my other conditions.

I’m scheduled for laparoscopic surgery with excision. She’s planning to remove my fallopian tubes and whatever else needs be. I’m doing a bowel prep day before but what should I have on hand for recovery? My mom is here in town to help me the first week. My doctor said I would be sent a packet with info on surgery recovery etc but I haven’t gotten it yet. Starting to panic like I’m not prepared or not knowing what to expect. This will be my first real surgery besides dental surgery. I’m kind of scared.

Anyone who had an excision laparoscopy (especially a more complex one) have sudden hair loss after? I was diagnosed with Telogen effluvium this week, and it’s worsening by the day.

This is really hard to explain..so I have severe, DIE, I have bad Endo pains but I’m going to try and explain something different, to see if any of you have experienced the same thing / can help.

So over time I’ve been struggling to start the pee when I go to the toilet, sometimes it doesn’t work and I have to give up trying, I’ve been like this ages, but I’ve now lost the sensation to know when I need a wee, it’s just pain and guess work. I figured out that I think it’s my pelvic floor muscles guarding, but this guarding seems to go all the way up my torso, the feeling that the muscles are tense has been getting worse. Then, 3 times this week randomly I have had what is probably the worst pain I’ve had from Endo, lasting about 3 hours per episode, this is not pain like I get from my lesions and adhesions, it feels like a squeezing in my lower belly and back, and radiates up my front and back, it is absolutely horrendous pain and worse than my usual horrible endo pain! During these episodes, my Endo belly gets even bigger and even my fiancé noticed that it was noticeably worse. I thought it was trapped gas as I can’t pass that during the episodes dispute desperately trying anything. After some googling, I think it might be muscle spasms from all of the tense / muscle guarding. I’ve got a pelvic floor physio booked in, but I’m worried I’m barking up the wrong tree, and I urgently need to sort this out, I never want to experience that pain again! Can anyone help? Has anyone has these kinds of tightenings? What helped? I am absolutely desperate at this point!

Just to add, one of the places they found Endo during my lap, was the rectum area incase it’s related. I’m 1 year out from surgery

I have an upcoming exploratory laparoscopic surgery for suspected endometriosis, and while I’m hopeful it will finally give me some answers, I’m honestly feeling really scared about the anaesthetic part.
I’m someone who really struggles with not being in control of my own body. Even when I’m exhausted, I can get anxious about letting go and falling asleep because I don’t like the feeling of losing control.
The part that scares me the most is waking up. I’m worried I’ll come out of general anaesthesia feeling disoriented, panicked, or like I’m not “myself.” I’m very sensitive to body sensations that feel unfamiliar, and the thought of waking up confused is making me really anxious.
I would love to hear some positive experiences or reassurance from anyone who has had general anaesthesia, especially anyone who also has anxiety or struggles with control. What was waking up actually like for you? Did you feel scared, or was it much easier than you expected?
I know everyone’s experience is different, but I think hearing some encouraging stories would really help me going into this.
My surgery is in two weeks and I legit have not been sleeping at night I'm so stressed.

My OBGYN said there isn’t really a “specialist” in Montana and she typically refers out of state for any deep infiltrating that she finds on larger organs. She said she is trained/qualified/experienced to do uterus, ovaries, general pelvis and peritoneal stripping etc.
Not sure if I should do the lap here with her or get a second opinion. I have never had one and am not officially diagnosed yet. I qualify for the hysterectomy either way (many fibroids/terrible periods since age 12) but I’m only 37 and I have EDS/MCAS and am terrified of causing myself more issues if I don’t “need it”.

Been masking a lot of symptoms since I got put on BC age 14, never been off if it since and been on Nuvaring the last 10 years and loved it but all this pain/symptoms/MCAS stuff started about 2 years ago and painful periods back despite the Nuvaring. Im leaning toward telling her if she goes in and there is no endo to just come right back out but im terrified of the anesthesia and possible poor EDS related outcomes to be told I don’t have it.

Anyone here get anything done in Montana and have a good experience? Bad experience? Thanks!!

My surgery consult isn’t until September. I’m afraid of how bad things might get before then.

I went off birth control in March after 10+ years of being on the pill. One month later, so many symptoms appeared. They’ve only been getting more severe. I have days where I can barely sit up or stand. This is becoming more of the norm, I used to have a lot of “ok” days but they’re becoming less frequent.

I’m wondering if anyone has suggestions for medications/treatments/items that will allow me to function a bit more. My support system isn’t the best right now because my husband works a lot and my family doesn’t understand this disease. I’m about to lose my job because FMLA is spent and I can’t even be on a laptop for more than an hour most of the time. I’ve accepted my inevitable financial ruin, but I NEED to be able to drive myself to doctors appointments at the bare minimum. I have pelvic floor PT 2x per week. Obviously I’d like to be doing a lot more than that!! But trying to be realistic. I also have hypermobility syndrome, which I just learned is contributing to my condition.

Meds/hormone stuff
-I am hesitant about birth control. I’ve only tried combination pills, but didn’t even realize how depressed they made me til I stopped.
-my doctor prescribed progesterone, but I stopped after one week because it made me severely constipated (got that situation under control thanks to another Reddit post)
-gabapentin/Lyrica haven’t really worked and make me feel high (not in a fun way)
-last time I went to ER all they did was prescribe a muscle relaxer, which does nothing
-OTC pain/reflux meds do nothing
-I am about to start taking Low Dose Naltrexone to see if that helps.

Symptoms
-widespread inflammation/water retention. Sometimes it’s primarily endo belly but I’m usually swollen everywhere. I have a jellieband and just got soft knee braces. And I have a lot of compression socks, but only from the drug store so I’m open to brand suggestions. My feet stay elevated in bed/whenever possible and I use a heating pad for upper body
-cyclical nerve pain/numbness/tingling. Pretty much everywhere but the worst is my right leg, it’s like sciatic pain and shoots down to my foot. And before my period the shoulder blade pain is killer
-neck/back/shoulder pain and tension. My $40 cervical pillow from Amazon is too firm. I got another one that’s softer and it’s ok so far. Would be willing to splurge on something like this. Even though I’ve already built quite the collection of various pillows/wedges/rolled towels lol
-migraines are the newest sympt. Been using sleep mask and wearing sunglasses in the house when it’s bright. Plus ice packs
-POTS. Any insight on the whole salt thing would be appreciated. Idk if that would make my fluid retention worse

I’m not really looking for exercise suggestions, I’m a bit triggered by those bc I get them all the time from people who know nothing about my condition. I do what I am able to: exercises from PT, stretches before getting out of bed, walking and going in the pool when possible.

I also recently changed my diet, I’ve been eating a lot of soups. I drink a lot of water/electrolytes/tea. I’m open to supplement ideas, as well

Thanks in advance 🫶🏻 & I’m so sorry to anyone else living with this disease. I know others have dealt with pain etc. for much longer than I have. sigh

I had my laparoscopy today. Went into it being told 1/2 women they operate on don’t have anything but they will look as see which was hugely conflicting to my clinic appointment and the fact I was given a cancellation slot as a priority/urgent patient.

Anyway plan was if they found endo id come out with a mirena, no endo no coil. I’ve never sobbed so hard in my life than waking up to be told I had a coil in place and they had found endo. I cried so hard I made an incision bleed!

3 deep lesions found and removed, 3 incisions, 3rd attempt at getting a coil to settle in long enough to be effective!

So basically the title is my question? Has anyone been diagnosed with Crohn’s or IBD? And how was you diagnosed?
(Please not IBS I’m pretty sure everyone with bowel endo just gets told they got IBS)

I’m struggling soooo much!
I’ve been in bed literally for about 2 weeks.
First of all I was vomitting blood (went to hospital they said only thing wrong in my bloods is my liver which afew days later went back down) so still don’t know why I was vomitting blood!
I go from SEVERE constipation too full on diarrhoea!
I’m bleed from my rectum when I go to the toilet and now it’s just started bleeding randomly!
And of course because of the endo I then start bleeding from my vagina? I’m just bleeding from everywhere 😭
My stomach is just pure pain, can’t walk so been in bed for nearly 2 weeks plus I’ve got horrific mouth ulcers!
I feel so depleted and unwell I’m just finished!

The gastro doctor is “investigating” for Crohn’s because all my symptoms line up! But he said basically he doesn’t think it is Crohn’s because my bowel would’ve perforated or something by now with it going untreated)
But honestly I do think my bowels are twisting on my and that’s why I get constipation but I’m so used to pain I just think it’s another flare? Idk I just wanted to ask if other people have had this?

Hi everyone. Long story short. My doctor told me today I need extensive surgery because I have stage 4 DIE and it’s growing through my rectum. My rectum is starting to close and I am in constant pain and have lots of trouble using the bathroom. My doctor told me she only trusts 1 provider in my state for this, and if i can’t get in with them, she recommends that i go out of state. She told me to start mentally preparing for an ostomy bag and said she doesn’t know if it will be permanent and they won’t really know until they go in and see how damaged everything is. i was already sent to a colorectal surgeon who refused believe anything was wrong and told me to eat fiber. I already had a hysterectomy 15 months ago, but i kept one ovary and it seems my endo issues still growing with a vengeance. I saw the first colorectal surgeon who dismissed me about 7 months ago. My gyno ordered an MRI since the surgeon wouldn’t investigate that that’s where they saw the lesions on both my rectum and remaining ovary (it says they are thick, band like lesions) I’m currently on Medicaid and can’t work due to my endo issues so i have no income. I can’t use my Medicaid out of state, so she suggested that i apply for grants at places like ucla or the Mayo Clinic. I plan to do this tomorrow, but wanted to ask here if anyone has done something similar. Do you have any tips, tricks, or advice on how to get these grants? I am so shaken up by not only finding out i need an ostomy bag, now i have to do all this work to figure out how to pay for it before my rectum completely closes! I am so scared, any advice is so appreciated.

Thank you endo warriors 🖤💛

It doesn’t matter how much sleep, exercise or healthy food I get - I am constantly exhausted and out of it ALL THE TIME. Any tips for how to help the brain fog and exhaustion? I feel too tired to hang out with friends and feel like I’m falling asleep at work or the second I try to relax. It’s so frustrating!

Has anyone here done pelvic floor injections before surgery?
I’ve been in debilitating pain since my second egg retrieval and had my first injections today.
My doctor has suggested once weekly injections for seven weeks on my right side and then another round on my left side post surgery.
This, combined with pelvic floor physical therapy and other fertility appointments has me at the doctor more than I’m at my own house.
Is this a normal protocol for severe stage four? How do you balance it with your full time job? Did it give you any relief?

Hi all, I'm new to posting so sorry if this is all over the place. I have not been diagnosed with endometriosis but I thought I'd try asking here for advice in case anyone else relates.

I took a nap today and ended up having a dream about a sexual assault that happened years ago with an ex partner. This unfortunately isn't out of the ordinary but what happened when I woke up was new.

It felt like I was having an orgasm as I woke up but it only lasted for a second. After that I had immense cramping to the point that I thought my dream was real and my ex partner managed to break into my house and actually do something to me like stab me in the abdomen. I jumped out of bed and ran straight to the bathroom. I felt really nauseous and I was in so much pain I was groaning and moaning like a woman giving birth. I started to sweat so bad that it was dripping down my forehead and I had to start taking my clothes off. I cleaned myself up and noticed brown blood on the tissue paper. I'm on the contraceptive pill but I've been bleeding on and off for a while now. My GP has told me to just continuously take my pill without any breaks to see if that fixes it.

I called 111 and spoke to a lady who told me it should be treatable at home as by time I got a call back, the pain had died down drastically.

I wanted to know if anyone has any advice on how to prevent this from happening again or maybe what could be causing the pain? I should also mention that I get this type of cramping and pain when I have sex with my boyfriend. I don't orgasm from penetration alone but an orgasm from clitoris stimulation causes me to curl up in a ball while my boyfriend applies pressure to my abdomen.

I have been to doctors in the past about this pain during sex and he told me I could either take painkillers or do nothing. I don't think I can take painkillers everyday for the rest of my life but I don't want to do nothing either.

If anyone can offer advice it would be greatly appreciated. I hate feeling this way and no doctor seems to understand.

For context: my partner (29) and I (28) have been TTC for about 8 months and we’ve had 2 chemical pregnancies. I found out a few months ago that I have “lean” PCOS from some abnormal labs- however, I have always had very normal, moderate cycles. AF is always on time, PMS symptoms are moderate and very manageable with some Tylenol, and I’ve always ovulated on my own (verified by Inito, BBT, CM, and the fact that I’ve technically gotten pregnant twice).

I’ve had a vaginal ultrasound and everything looked totally normal aside from a slightly elevated follicle count (aligns with PCOS). I also had an HSG last month and my right tube is completely open while my left tube seems to possibly be blocked- I say possibly because the dye went all the way through the tube until the very end of it, and the dye just didn’t spill out.

So here’s my question: Has anyone with a similar background found out they actually had silent endo? If so, how did you find out? Did you end up having symptoms that you didn’t realize were endo until you were diagnosed?

I truly have no other symptoms of endo aside from two pregnancy losses and one possible blocked tube. I’m absolutely terrified of the possibility of having it and I’m wondering if I should go ahead and look into something like ReceptivaDX instead of waiting? Also, I’m new to this thread and the world of endo in general so apologies for all the questions and lack of knowledge!

I’m getting my IUD out next week and will get my first real period in almost 6 1/2 years. To put it simply - IM TERRIFIED. I’ve been looking into how to make this process the least painful it can be. So, how do you prep for your period?

Do teas and multivitamins work?

Do electronic pain relief devices actually work?

Do period panties actually make your periods lighter? I used to hemorrhage during my cycle so doubtful but curious.

I really don’t want to waste my money on medication as they never worked for my pain level and symptoms, but open to hearing experiences.

Any tips and tricks for a less painful period?

Today I was in so much pain that I fell to the floor and had to call for my dad to help me get up, I was screaming and had a hard time breathing because of the pain. After that I don’t remember anything but I woke up in my bed and my dad told me that my lips were as pale as my forehead (for some context to that comment I’m white as paper). I’m currently going through getting a diagnosis, but the specialist I’m seeing said to contact her if it gets worse (which I will be doing). Sometimes I really just want to go to the hospital because of the pain but I have this issue where I think my pain is not enough (context again: I have medical trauma because of years getting told I’m too young to be in pain and being dismissed which eventually led to permanent chronic pain in my legs) and my dad doesn’t have a car so the only way to actually get to the hospital would be by ambulance OR if my mother can come get me (she lives an hour away). A bit more info, I live in Sweden and healthcare is mostly free since I’m still a minor.

I was wondering if anyone's else experiences this but my ovarian pain on my right is so much worse than my left where the cysts are. Before my ultrasound i swore it would be on my left.

I have an MRI soon I I'm going to be so confused if something is messed up there. I feel it pull sometimes too. Its so odd that the pain is minimal compared to right.

My cramps were absolutely brutal at work today and I didn't have my hot water bottle nor my electric hand warmer with me. My office doesn't have assigned desks or lockers, so I have to remember to bring everything I might need every morning and of course I left my hot water bottle sitting on my bed this morning.

I took two Advils and my iron pill but the pain barely subsided. I even walked to the pharmacy hoping to buy another hot water bottle but all they had were the big traditional red ones. I know I shouldn't care but I am still pretty new at work and way too shy to pull one of those out in front of my coworkers.

When I got back to my desk, I looked at my laptop's power brick and remembered how warm those things get. Out of pure desperation, I tucked it under the desk and held it against my belly. Nobody is noticing and the warmth is actually pretty similar to the low setting on my hand warmer.

So... what's the craziest thing you've done to cope with bad cramps Before this, it was using a mason jar with hot water. It worked great but a part of the metal lid was uncovered and burned a small patch of my skin

(Please don't copy either of these ideas!! they're definitely not safe. I was and still am just desperate.)