Just wanted to say I had my surgery yesterday after finding nothing on ultrasounds/MRIs and debating for so long if I should go through surgery or not. Dr found endo EVERYWHERE and a cyst in my right ovary!! My fallopian tubes were tethered to my pelvic side walls because of the endo. He said surgery could last 30 min to 1.5 hours and mine was more than 1.5 hours. Wow wow wow.

Please believe in yourself and be your best advocate!!! You know your body better than anyone, I am so so relieved and feel so validated. My pain was not normal!!!

I had my first appointment with my new endo specialist, and it was…underwhelming. It wasn’t with the doctor, anyway, but a PA. I guess I shouldn’t have expected them to come up with anything that I haven’t already heard of before :/ I’ve tried the bc patch (made me depressed, didn’t work), norethindrone (worked for a few months), Slynd (depressed), and back to norethindrone (not working again). Estrogen is out of the equation, with what I understand about the disorder. So…all that’s left is stuff that will completely shut it down and mimic menopausal symptoms. At 19, I’m gravely disappointed, but I just want to give one more thing a shot before hopping to do a second surgery.

She suggested Journavx for a pain med (I’m on liquid gabapentin & it’s good so far, but for traveling this is gonna be good) and myfembree to switch the norethindrone out with. (This is, of course, if my insurance will even allow it, because I’ve trialed so many meds this yr). Has anyone had any experiences with it? Anyone who has POTS, MCAS, and/or hypermobility and tried it would also be appreciated to weigh in

To make a long story short I had to go through a bunch of doctors who gaslit me but eventually I found the right doctor after 2.5 years who diagnosed me with superficial endometriosis and adenomyosis.

She showed me how the back of my womb was three times as thick as the front and all the scar tissue that looked like ”feathering” on the ultrasound.

They operated on me when I was 23 and cut out the superficial Endo. They also found small fibroids on my womb but didn’t cut them out as they found it an unnecessary risk. I had already been on birth control since 17 (I’m 29 now) and they advised me to just not have a stop week each month anymore.

I didn’t go back as our healthcare system heavily pushes for people not to go to the doctor even though I pay a lot for it (yay).

Yesterday I had an appointment with another specialist as mine is gone. And they said they see nothing at all??? I asked how this is possible as scar tissue doesn’t disappear and he just said “different doctor”.

I insisted on a hysterectomy as i get horrible side effects from the pill and his solution was to take more meds to induce menopause (relugolix). He said there would barely be any side effects but all the described side effects of this drug are what I’ve been struggling from on bc and want to get rid of ??

He also said “it’s only for 3 months to try” but i don’t get the point as bc already takes 1 year to leave your body and for hormones to be restored. Also you’re not supposed to take rugolix when you’re still on bc (got my injection literally last week) but he said it was ok.

The final punch was that he said that if these meds don’t work it’s not pain from Endo.

I expected them to refuse the hysterectomy but i never expected them to undiagnose me. I’m kinda devastated.

Any advise ?

Update:

Thanks for the support. Hearing you guy's opinions made me feel better and less like I'm crazy. I am gonna get a second opinion. Also I'm sorry for everybody who is going through endo/adenomyosis, wish I could cure everybody. 🩷💔

I saw this on a Facebook group and am curious if anyone here has heard anything? I will link the article as well: https://internationalendo.com/nac-for-endometriosis/?fbclid=IwdGRleAVGMO1leHRuA2FlbQIxMQBwZG9mBWZkaWQWUQtDK9NCs-jbQ0OTnNURcdtrFpDqj3NydGMGYXBwX2lkCjY2Mjg1NjgzNzkAAR55LCW3ogjv1oG6cn7OPOl8H3nH5k6yIMGxiSh8uV2RFGDG2xtGDrtBXUbhkw_aem_eT1qcUPNfbIR4B624EQGaQ

Hey, I’ve been going through a bit of a rough time these last few years. I went to see a gyno 6-7 years ago and told her about all the pain I was having and she gaslit me and told me “oh you’re just not wet enough and need to use lube you’re too young for that stuff” well needless to say I never went back to her. And finally found a doctor who believes me and that the progestin-only bc I’m on is the only thing that has helped me! Well she is convinced that I do have endometriosis because of the progestin-only bc. Which I understand because of endometriosis being estrogen dependent. But I’ve had negative ultrasounds and just had an MRI that was negative. I’m worried about getting the surgery because nothing was found. Has anyone else experienced this and got the surgery and there was endometriosis? Please just wanting some peace of mind. I’ll most likely be starting pelvic floor therapy and vaginal diazepam to help.

I am undiagnosed but I’ve believed for a decade that I’ve had endo.
Now, my question is does anyone else experience crippling hip pain, to the point where nothing you do helps the pain, while they’re menstruating? I’ve been experiencing this for a few years now and it’s almost debilitating, I can’t do anything while the pain and cramping flare up.
I’m hoping to start my journey to getting answers about my hip pain and if I have endo or not too.
I don’t know why else my hip pain would flare up while I’m menstruating if they weren’t somehow connected. Has anyone else experienced this?

I am on day 20 of zoely for Endo, I’m having a lot of period like cramps- not as bad but constantly there and it has also worsened uti like symptoms I get associated with endo. Anyone have a similar experience?

This is kind of niche but I was wondering if anyone else has experienced this and/or knows what this means or why it happens🧐

I'm currently recovering from my second laparoscopy (7 days post-op) and I'm starting to get this second wave of pain that I also experienced after my first lap.... like the first week is mostly just feeling pretty out of it from surgery and having a ton of soreness and some pain in my whole abdomen but then after that first week or so I feel more coherent and the soreness isn't as bad but then I get these super sharp and tight pains in my hips right where my incisions are.

It kind of feels like someone is gripping the sides of my hips and digging their thumb nails into my ovaries super hard! It hurts really bad and ofc it's always around the time I've already finished my pain meds and can't get any more lol can someone pls tell me what this is??

Hi everyone. I’m about to try my first hormonal treatment, Slynd, and I’m terrified. I had a bad experience about ten years ago when I was 16 with a birth control that made me severely depressed. My mental health is significantly better now but I am hyperaware of the sensations in my body, as I’m sure a lot of us are, and I have been reluctant to start any hormonal treatments since I was diagnosed several years ago.

I’ve been told my endo is so severe that I need to start something if I want to preserve my fertility since there’s a 50% chance I will need to do IVF in the future. I’m not ready for kids yet. So, I’m going to give it a go.

I’m terrified of the side effects and of this med not being the right one for me, and having to spend the next three months miserable while I wait to see if my body adjusts. I’m worried the side effects will impact my work and my relationship. I’m scared of the unknown. I’m scared I’ll get headaches every day or it’ll make me feel anxious or increase my heart rate which is already quite high from my vyvanse. I’m worried about weight gain and loss of libido which i already kinda struggle with because of the pain i have during sex.

Truthfully, I sometimes feel like I’d rather suffer the pain than deal with the unknown of the side effects from the hormonal treatment but that feels silly because I know so many people have had positive experiences with them.

Long rant lol anyway,

TLDR: I’m about to try my first hormonal treatment and I’m terrified. I could really use some encouragement or advice on how to cope with this fear.

Thanks!

After going round and round in circles and fighting for a referal to a specialist from my GP, i finaly have answers!!

Endo was found, and my right ovary was in fact attached to my abdominal wall. And the scar tissue had started to envelope my ovary.

I cant wait to go back to my GP , prove her wrong and hand her the surgery summary stating they found exactly what I knew they were going to find!!

Still cant believe my doctor is a woman and was so unconvinced of my knowledge of my own body. Absolutely disgusting.

Hi all, looking for other's experiences. It feels pretty ridiculous to be 36 and in this position, but I grew up in a very abusive household and never learned how to be in tuned with my body or my needs. I've only started to put symptoms together this past month and thinking it might be endo that's been masked by my birth control (was put on it at 14 for very heavy and long periods). Last month, I had a sudden onset of severe lower back pain, this progressed to severe lower abdominal stabbing pains, right then left focused flank pain, instances of severe (as in level 9, never been in so much pain) stabbing lower abdominal pain (more like in my ovaries), painful to pee, pain radiating down to my thigh and leg, and I initially thought might be kidney stones. No stones were found and scans of kidneys looked 'normal' per the Urologist. Still have this type of pain and now what I am realizing it is pelvic centered pain. I don't remember when it started, but I always feel I've had some sort of pelvic heaviness and random sharp pains, especially during my period. Sex can be painful and I thought it was just normal, until talking to a friend recently that said it's not. About 80% of the time I also experience light bleeding and burning right after sex. Last ER visit I had severe lower abdominal swelling and pain radiating down my leg it was difficult to walk. Thought maybe ovarian cysts? I was able to get a pelvic and transvaginal ultrasound...which was horrifyingly painful(like I was being stabbed in the vagina, especially on the left side where my pain is mainly at). I was for sure they would find maybe cysts, but came back as "normal". I've been looking at the scans and the tech circled several areas, particularly by by left ovary and in my cervix that don't look right, but ER radiology marked everything normal. PCP appointment today and Gyno at the end of the month. Anyone have similar experiences?

Has anyone else experienced this - I got my flu shot a week ago and started my period yesterday. I’ve been in so much pain - like borderline wondering if I should go to a&e. Normally I have painful periods (confirmed current endometrioma, excision surgery 18mos ago) but a couple of naproxen and some paracetamol make it manageable. After the flu shot, I was feeling tired and run down. Has anyone else experienced this, or is it just coincidence? I don’t normally bother to get it, but I’m working with lots of students and taking public transport in my new job so thought it was better to be safe. I’m wondering if there’s some kind of mast cell reaction.

One of my symptoms as I’m seeking a surgical diagnosis is middle of my leg - right between my knee and hip, slightly closer to my hip, about the size of a dime is a throbbing nerve like pain. It’s almost daily and no other dr has been able to explain it.

I have an appt with my specialist where I’ll be asking for surgery (she’s only
Given me a clinical diagnosis) and I want to mention this but my old family dr told me that doesn’t sound like endo related.

Looking for anyone with a similar pain? Or do I not even bring this up to her?

hi i got my surgery 10-ish weeks ago and ive seen an INSANE difference in my pain thankfully. but one thing that hasn’t changed is showering. showering triggers a pain flare, so bad i can’t do anything for two days, and by then i have to shower again. it’s actually debilitating. im using a shower chair, have experimented with water temperatures and do massages before going into the shower and do pelvic floor physio. ive tried everything.

i guess i jusf have to not do a basic necessity?!? life sucks honestly, i get so mad with this disease. once you think you’ve finally made some progress and conquered it you realise you can’t escape it. feeling incredibly depressive nowadays, would like some help or any tips

tried mentioning the possibility of endo to my gynac and she didn't even acknowledged my fear of having it. According to her , i am trying to overthink and should just listen to her & follow up the medicines. Since my teenage i have been having horrible pain even before nd after periods. i am just frustrated by this cycle of gynac visits and not getting my ans. I feel life just feels so unfair to me . why i have to go through all this .?
guys has any1 felt the same ?

Hi! I’m
Putting together a care package for my friend who is about to have to endo surgery. So far I’m thinking:

• New comfy PJs
• Slippers
• Peppermint tea

Looking for more things to add in. Snacks?

Would love some suggestions!

I recently learned more about endometriosis in one of my classes and realized that this may have been the root cause of my reproductive health and GI issues. To preface this, i have had several IUD’s over the course of 11 years. This all starts with my IBS diagnosis about 4 years ago. I was rapidly losing weight, horrible bowel pain, all the classic irritable bowel symptoms. I went to a doctor who concluded after several week it was IBS and referred me to get an endoscopy but I didn’t have health insurance at the time. I made several dietary changes (gf diet, eliminating certain FODMAP foods), whatever. It helped a bit.. for the most part. About 4 years ago post sex, I experienced horrible pain in my rectum, uterus, cervix, back. I had to get a transvaginal ultrasound and turns out I had an ovarian cyst rupture. I just have thought all these years that this is somewhat normal. I frequently have really horrid cramping and pain after sex, just thought it was a “sensitive reproductive organ” issue. Anyways, about a month ago i did a case study about endometriosis and was baffled at the similarities. But honestly, I don’t think I’m a likely person to have it ? No one in my family has it, I don’t have super heavy periods (I’ve had an IUD in me every day since I was 17 tho), and I just don’t know if it’s even worth bringing up. I know I shouldn’t feel nervous to bring it up to my gynecologist, but I am sure many of you can relate to not being listened to and feeling “dramatic” for having a concern.

Also, I got my first period when i was 15, I would have cold like symptoms a few days before my period would start. It’s gotten better as I’ve gotten older but I’m 28 now and still have this odd symptom occasionally?? Not sure if that’s related at all but let me know if anyone else has experienced that.

I just am looking for 1) reassurance that my symptoms are really worth mentioning and 2) advice on how to bring this up, what to ask for and how to advocate for myself concerning reproductive health.

Also, if anyone has any reasons for thinking it’s not endometriosis, please tell me!! I don’t know anyone in my life with endometriosis so my resource is this. Im not dead set on this being the diagnosis, as this isn’t debilitating my life (just debilitates me a few days a month honestly).

I don’t even know if I’m posting this in the right place anymore.

I’m 34, I’ve been trying to get the GPs to take a possible endometriosis diagnosis seriously since I was 18. I’ve been through ultrasounds, MRIs, hysteroscopy, Mirena coil…

I had an ectopic pregnancy in 2021 and lost of left fallopian tube. During the emergency laparoscopy the surgeon visualised endometriosis around the ovary and tube and referred me for further investigation after recovery.

I was lucky enough to get pregnant quickly after this and the endo was therefore never investigated further.

My symptoms, since my son was born, have steadily got worse again. I’ve been suffering from chronic back and pelvic pain, bloating, painful periods etc

We’ve been trying for a second baby for 2 years now and have had two very early miscarriages.

I went private and got an MRI done and finally felt vindicated - it showed adhesions across my pelvis that it put down to likely endometriosis. It also showed adenomyosis.

I had my lap yesterday and I was excited to get the whole environment of my pelvis tidied up and confirmation my right tube is doing its job okay.

I feel like I came out with the total opposite and I just don’t know what to do, how to process, how to move forward.

The surgeon found no endometriosis. He found adhesions where my bowels were stuck to my abdominal wall throughout and he also did a dye test and found my right tube is completely blocked at the end.

I can no longer have another child naturally.

I’m utterly heartbroken. I’m confused.

I am so thankful for my son and I know there are people who are not able to have any children if there own and my heart breaks for them but I just feel like the rug has been pulled from beneath me.

I don’t have endo.
I can’t have children.
I have no idea why my pelvis is so damaged, I’ve never had an infection or anything like that.

I’m sorry I don’t really know the point of this post I just feel lost and didn’t know where else to put my thoughts.

❤️

Hi beautiful friends. I am writing this post with an idea in mind to help the Endo community. I too suffer from Endo and Adeno and understand the crippling impact it has on every aspect of our lives. I have time on my hands and I want to see where I can help the endo community. That's where this post comes in. My question for you is, as someone who suffers daily from both physical and emotional pain, what support and resources outside of the medial world do you wish were provided to you that are currently not available?

Nots: I'm so happy that it has worked out for some folks, and if you are considering trying it out for yourself, please do. If it has the potential to give you relief, don't let my post influence your decision. I'm just tired of taking hormonal medications.

28f. Been on Visanne for close to 3 months. I am completely aware that this isn't long at all, and that this could all be the adjustment phase. I was really, really, reaaaally hopeful that Visanne would help. All it has done is extend my period but lessen the bleeding. Although it's nice not bleeding through maxipads and staining pretty much everything I sit on, the side effects are NOT worth it to me and I'm not willing to sit through them until it gets "better".

I'm waking up in a panic every single night. My anxiety and depression have skyrocketed and I often feel my heart racing even in moments of complete calm. The nausea, hair loss, the heightened sense of smell, the irritability, the hunger and the additional emotional sensitivity combined with my existing symptoms like daily pain, stomach issues, brain fog, etc. is fully driving me crazy. I am absolutely miserable and in no less pain. As I said before, I'm not willing to put myself through this.

This is also not due to impatience. I've been on various birth control medications over the years and I stopped taking them because of how horrid the side effects have been. I'd been on some of these medications for years as well with no relief. These side effects are nothing new to me, but with Visanne the side effects have been the worst.

I am tired of going through the same onslaught of side effects with little to no help whatsoever. I'm tired of taking hormone medication. I genuinely cannot wait until we advance enough in medicine until we get non-hormone alternatives even if it's 10yrs down the line.

How was everyone’s pain post op? I had my excision surgery yesterday which lasted 5 hours and the oxy/tylenol/ibuprofen combo is not even touching this pain. Part of me knows this is probably normal due to how much disease was found and excised but wow does this shit HURT. I cant get up without help or stand up straight or walk more than a circle around my kitchen before I need to lay down due to the pain. I’m a little worried that this isn’t normal and my pain should be a little more controlled. It hurts to just lay here.

What did you do to manage pain? What helped? What made it worse? How was your recovery in general? Would love to hear any and all experiences!

Procedures performed
ROBOTIC-ASSISTED EXCISION ENDOMETRIOSIS, CHROMO DYE TEST.
ROBOTIC-ASSISTED MYOMECTOMY.
DIAGNOSTIC HYSTEROSCOPY
ROBOTIC-ASSISTED LYSIS OF ADHESIONS
ROBOTIC-ASSISTED LAPAROSCOPIC URETEROLYSIS
(Bilateral)
ROBOTIC-ASSISTED SALPINGECTOMY (Right)

STAGE III-
Disease was found: DIE of right fallopian tube/ovarian fossa
disease and fibrosis of both ureters, both uterosacral ligaments, essentially entire posterior compartment, cul-de-sac, rectovaginal space, rectocervical space, left mesentery of the sigmoid colon, right colic gutter, anterior rectum

Hello everyone, I was diagnosed with endo about 5 years ago, but have struggled with it since I started my period around 15 years ago.

I have a Mirena IUD in place to stop my period/help me avoid major flares, but something that has always perplexed me is that any time I am on an Antibiotic, my IUD stops working and I get a period and flare up horribly. I know that antibiotics affect oral birth control, but in all my research, I have seen it is NOT supposed to affect IUD’s, especially Mirena! I’m just wondering if anyone else has had this same experience or if my body is just crazy ahahaha!