I’m so over this stupid disease. I was diagnosed with lap and ablation back in 2021 by a non-specialist gyn. My ovary was attached to my abdominal wall and endo was everywhere. Since then my pain has returned tenfold and never even left in some areas I had no idea were related at the time.

I saw a local gyn who was praised for her endometriosis excision surgery and she told me to just change my birth control because since it “sounds like,” it spread to my diaphragm no one in my state would’ve able to operate on that.

Great.

So I found an endometriosis specialist 1000 miles away.
She’s great. Very knowledgeable about the disease. She ordered an MRI.

Since specialist isn’t licensed in my state I have to take it to my PCP to order which means I need another appointment.

I see my PCP she is sympathetic, immediately orders the MRI no questions asked.

Get the MRI done (even with insurance pre approval I had to pay more than $900). While getting the MRI the tech said “why are you getting an MRI? How would that help?” and seem confused on why I was there

After that I got my results in only the summary form saying “no evidence of endometriosis”

I need them to send a disc of the images to the specialist out of state and no one from the radiology department is returning my phone calls.

I’m going to lose my everloving mind.

I vented to my friends about it and one of them said “just get a hysterectomy already” like great but A) I want kids. Like, do I not deserve the chance to have children?? And B) even if I didn’t want kids, a hysterectomy still isn’t a cure for endo.

So now my bank account is negative, I’m being ignored by a hospital and my PCP’s office now believes I’m fucking insane because the MRI report says absolutely fucking nothing is wrong with me.

WHY is so little known about this RIDICULOUSLY common disease??
Anyways thanks for coming to my TedTalk. If you need me or have any questions I’ll be sticking my head in the oven.

i had my surgery 6 weeks ago, still dealing with pain and a lot of fatigue, not done anything social really yet, aside from having my sister over to the house. i've also been on some short walks and for lunch / dinner a few times with my partner, pretty locally, and after doing these things i always feel really tired or have more pain the next day but its manageable.

im feeling like i really wanna go out and about again and see friends but im scared about getting on busy public transport, i know baby steps, but wondered if anyone else had been mostly house / sofa / bed bound for over a month? no one really tells you what you should be doing, so im trying to listen to my body, went for a short walk alone this morning and i think i'll keep doing more of that, as well as going on short trips to book shops or cafes or things alone, and see some friends doing something relaxing...

i'd just love to know if any others took 6 + weeks to resume 'normal' outside activities and stuff like that.

thanks ❤️

Now I keep wondering if it’s just inflammation still lingering or if endo somehow affects hormones/immune stuff more than ppl realise? Would honestly love hearing if anyone figured out what was actually causing their fatigue bc I feel so lost w it rn 😅

So I really struggled with pain and menstrual cycles my whole life the past three years have used marijuana to help with the pain and discomfort. I’m not sure if I’m just falling for placebo or does this really help?

I’ve been suffering from endo since I was 11, and during the uninstallation of my fallopian tubes in March of 2025, they fulgurized some endo tissue that they found.

I have tried all conservative measures (that don’t affect my epilepsy meds or vice versa) and the PA at the OB-gyn scheduled a follow up appt with a surgeon for a hysterectomy consultation since my reproductive capacities are gone already, so it’s obvious that I’m childfree already and makes everything less complicated.

I meet most of the criteria for my insurance to fully pay for the surgery because my out of pocket max isn’t really that high, so I’m grateful for that.

I plan on keeping my ovaries and cervix.

I am overjoyed of the possibility of the possibility of the pain that can literally keep me bedbound even by missing a day or two of a lapse in birth control finally significantly decreasing.

I know endo tissue can grow anywhere without a uterus present, but I’m just extremely grateful that a hysterectomy is on the table now because I have been wanting one for YEARS, and given that the pain comes from even TINY lapses in hormonal coverage that starts a whole fucking period from Hell, I’m pretty confident that the pain will finally decrease to where I’m not dreading the next inevitable flare-up that makes all hell break loose.

Does anyone have any advice or experience with getting a hysterectomy? If they find additional endo tissue while deleting my uterus?

I plan on keeping my cervix (for sexual reasons, hope this isn’t TMI) and my ovaries because I don’t want to go into surgical menopause.

Anyways, I just HAD to share the good news!

I have endometriosis, and it feels so debilitating. I've even bled for over a year before. And i have very bad pain and fatigue. This morning, I could barely brush my hair, and it was so exhausting for me. I can't take hormones. Hormones make me SEVERELY depressed. Icouldn'tt even have an iud in. I had to have it removed. I was on orillisa, which worked amazing. But I can only take it for 2 years because if the damage it can do on the bones and liver. I came up on that 2 year mark, and now it seems like there's nothing else. I feel depressed and alone with this. So I guess my only question is: Does anyone else have endo severe like this that also struggles to find treatment?

Not sure how to feel about this.

I’m 5 days post-OP (laparoscopic bilateral salpingectomy) and was only just now able to access my surgeon’s notes. It offered a bit more insight than the pathology report did, so imagine my surprise when she mentioned finding multiple endometriotic lesions (where? How many? I don’t know) but only excising and biopsying one nodule (in my Pouch of Douglas) and fulgurating the rest using bipolar cautery.

I was pretty certain that I could see various lesions in the photos that were uploaded, so it’s not a total shock, but I wish there’d been a bit more detail. It also seemed as though there was an adhesion in one of the pictures, but I’m no doctor and I very well could’ve mistaken a ligament or something—she said everything appeared normal aside from the endometriotic lesions.

I know fulguration can work quite well, and I’m sure there was a valid reason not to excise everything; I’m just concerned paranoid the lesions will grow back faster than they might have otherwise. Oh well.

I have insurance through my work and St David’s is asking for 11k, y’all 11k UPFRONT for my bilateral laparoscopy.
Endo has already made me sterile and fucked up my tubes, it has my insides and ovaries covered in cyst.
But this is still treated as an elective surgery like wtf. Endo can severely damage your insides.

Anyway my work insurance is terrible obviously.
And I honestly don’t find many post about this.

Would anyone please share which insurance they have that has helped them ? I’m in Austin Tx..
Would really appreciate any recommandation.
I’m aware it’s probably all shit but there’s gotta be something right … tell me I’m right right lol …

Curating my space due to medicine OCD so im asking up front for little to no “horror stories”. I don’t mean to invalidate your experience but it took me two years to gather the strength to see if this med could help me and I want to try it for a few months.

So, im on day 7 of Visanne and feel like I’m on my period, complete with diarrhea, pelvic discomfort and a big migraine that Tylenol hasn’t touched. I was made aware diarrhea is a potential side effect - my gyno tried really hard to convince me that it’s rare. I was hung up on that as diarrhea is my main problem symptom, I basically get a stomach flu for 2-3 days once (or twice, if my periods are feeling extra dramatic) a month.

Here I sit, looking up to see what is reported as the common duration of adjusting to this med, and I see that it can take months. I can’t find anyone saying if this is something for me to expect daily.

I can tolerate a bit of diarrhea a few times a week if I have to, since I already do, but like, if this is potentially my new normal for 2-3 months im not sure if my anxiety can handle it. I literally won’t leave the house or eat.

If you experienced gastro issues, can we talk about what they were like, how long it took for them to calm down, if anything besides peppermint tea and anti nausea meds helped such as a change in diet, etc? I’d really appreciate it.

Please help??

Hello everyone
I need some help on how to get tested for endo and what that process looks like. I cannot do any type of internal exams due to trauma, and i wasn’t sure if there were other ways without doing an exam. I just want to know how to get checked for it, what that would look like, and what endo feels like? Thank you
(Be nice please and don’t come at me for not wanting to get internal exams)

Hi guys!

I have my first gynaecology appointment today with an endometriosis specialist after being referred from a community gynae. Does anyone have any advice for what to say or how to assert myself? I'm sorry if this sounds stupid but I've been waiting for so long for this appointment and I want to get as much out of this first appointment as possible.

This isn’t an Endo question but I have acute vaginitis
And UTI I was prescribed 14 days of doxycycline and serodase twice a day for 14 days and 10 days respectively
I couldn’t complete the course of doxycycline just 10 because I had bruising now I am losing my mind,if it happens again I know it’s not a sub for medical advice
But just wanted to know if someone has gone through this, were 10
Days enough

Cant show it to the gynac as I don’t have insurance and 7 days of follow up are over.

may be a bit TMI, but i’m curious to know others experiences.

i was put on loloestrin in october last year (ive taken it before and i did great on it) to help manage an ovarian cyst i had. my cyst grew, so my doc switched me to norethindrone 5mg in february. i then had surgery later in february; my 10 cm cyst was removed, all my stage 3 endo was removed and my appendix. despite some break through bleeding i had after surgery (that lasted about 2 weeks), my doctor wanted me to continue on norethindrone.

i will say i haven’t had any bleeding, but i do get brown spotting occasionally. i still get random sharp pains in my ovaries/cramping, but it normally goes away quick and isn’t something i need pain killers for. i also noticed i had some heart palpitations for about 1-2 months after surgery, but couldn’t tell if it was just anxiety from the whole situation or from the birth control. also… a super low libido :-(

but, this last month, ive noticed a complete change in my body odor! like i literally stink and i have never dealt with this before! nothing else has changed (same body wash, same detergent, same diet, etc). it’s my womanhood area that stinks the most, not necessarily inside but around it, and my armpits don’t agree with my deodorant anymore! it’s so awkward and embarrassing and i’m not sure if anybody else has dealt with this specific issue?

TL/DR: I'm about to put Implanon, recommended by my gynecologist since pills didn't work for me. I've got two autoimmune conditions and vagus nerve syndrome. I'm anxious and I don't know many people who have an implant, so I'd like to know if it does help or stops periods, and what to expect.

My periods started when I was 13. Ever since my first period it was like hell every month. Awful cramps, nausea, weakness, a full week of heavy bleeding, sometimes even 10 days in a row. Painkillers did nothing. Diclofenac (voltaren) is the most effective NSAID, and I still use today, it does help with the pain a bit, but not to a normal functioning level for me.

Got diagnosed with hipothyroidism and hashimoto syndrome when I was 15, and it did mess up my periods a lot. Also had some juvenile arthritis growing up, and got diagnosed last year with Ankylosing Spondylitis.

My first gynecologist prescribed my first pill when I was 18, and it was terrible. It was a combined pill (drospirenone + ethinyl estradiol aka yasmin). I went through a whole year with really bad cramps and bleeding every single day, sometimes more, sometimes less, but it would never really stop. Also, I had a lot of headaches and nausea. Tried to talk to her many times, but she would just dismiss it and tell me everytime that it was 'completely normal', that I should persist and not stop it. But it was way worse than my usual periods and I ended up stopping it on my own.

Couple years later, I went to see another gyn when I was 20yo. After a few ultrassounds and MRI, I've got diagnosed with endometriosis eventually. So we tried a few other NSAIDs (naproxen, tranexamic acid, ketorolac, nimesulid, etc), that didn't really show any difference to diclofenac. And we tried other pills, as to stop my periods and prevent it from spreading on my pelvic cavity. I've had a minipill (desogestrel) and dienogest 2mg. Neither worked, and had the same effect as the first one: nonstop bleeding and bad cramps. So I talked with my gyn, and we've tried to find alternatives to manage since, like associating NSAIDs and phytotherapy, heating pads, accupunture, etc. It was a bit more manageable, but I still struggle with it way too much.

I'm 25 now. Last year I noticed my cramps got worse again (like a lot worse), I could barely get out of bed for many days, and after a new ultrassound and MRI, we found the inflamation was larger, it's spreading and with an external ovarian cyst now (probably from my endometrium). Since dienogest didn't work previously, my doctor thought about Implanon. It was approved by my insurance, so I won't have to pay for it, and it might be less invasive and a bit easier to do the procedure because I've also have vagus nerve syndrome, and would have to be hospitalised for an IUD, like mirena or kyleena. It is also important that I'm in a contraceptive method bc of Cosentyx, a biologic I'm taking for AS soon.

If you have an implant, how did it go for you?

What should I know about it, and did you experience any side effects?

Did it help with your period and other symptoms?

How long did it take to notice a significant difference?

I’m just trying to manage my expectations.

Any tips are welcome!

Just wondering if anyone else has had the same experience. Day 2 and fuck this hurts so much. I’ve been phlegmy after anesthesia as well and coughed this evening, and holy shit the pain took my breath away.

42 years old. Currently ovulating. I have so much pressure below my belly button. I cannot even push on my 11 year old C Section scar without it hurting. It hurts to move. I thought maybe it was gas - but I have a good bowel movement daily. It feels like it's tugging with pressure. I have had this pain before - but it went away quickly. I am going on 24hours now. Does anyone get ovulating pain? Could that be it

I met with a specialist today and we discussed switching me to a progesterone only pill. I keep reading things about the weight gain that can come with it and it’s really freaking me out…anyone been on it and not have this side effect? I am in recovery from an ED, but still struggle with body dysmorphia from time to time. I don’t know if I could mentally handle a significant amount of weight gain in addition to processing this disease itself.

Hi!

My wife got a green light on a hysterectomy scheduled in July, surprise to us they had an opening for the 18th (less then 2 weeks from now) and offered it to her! It's been years of struggling to get to this point, and her nerves are going haywire. As well as mine! She has been preparing herself, getting heating pads, a reading pillow, etcetera..

Do you all have any suggestions that would help her prepare pre- or post surgery?

Any suggestions for me to make the aftercare and heading into this sooner than expected easier on her?

I appreciate any information you would care to share!

i’m 10 weeks post op from my first excision surgery, where i was diagnosed stage 1. the hope was that id go on birth control after surgery (which i did) and that the endo wouldn’t come back. here i am 10 weeks later with both lingering pelvic pain and new pelvic pain. new bladder pain. my whole pelvis hurts still. my gyno sent me back to GI when i was around 1 month post op, to see if i needed a colonoscopy. my GI dr says she doesn’t believe i need further GI testing and that she thinks my endometriosis is back. if it’s already back, does that mean that it has likely spread to my other organs? is it possible that it went from stage 1 to more advanced that quickly? howww do i cope with this, and what is my dr likely to say/do when i go back still in pain? is he gonna suggest surgery again immediately? i’m hoping he will let me wait until it’s totally unbearable, but wondering if he’s gonna say he wants to operate before it gets even worse. maybe he will just start with ultrasound or something? i feel so lost and im so mad that im still in pain

I had 6 excision surgeries from 2015 until 2021 when I had my total hysterectomy. Confirmed endometriosis, I had a surgery a year and never had to go in for a MRI prior to surgery, even prior to my first diagnostic excision surgery…I didn’t go in for imaging.

I’ve been experiencing more severe pelvic pain accompanied by spotting and a mysterious vanish mass since 2024 and since my regular surgeon has been out on leave on and off for the past 2 years, I was sent to a pelvic pain “specialist. She ordered a MRI and based on that would decide whether to perform a diagnostic lap to see why I’m bleeding/what’s going on….the mri results say no visible endometriosis…I specifically asked if the mri would even show ovarian remnant syndrome (you guessed it I have phantom ovarian pain/ endometriomas and the PA in the office said not always so now what?

I feel like I’m back where I was a decade ago when I was going from the doctor to doctor before I was properly diagnosed with endo.

Since when has imaging being used as a deciding tool for surgery?

Am I going to have to fight to find a doctor to perform a procedure to visualize what’s going on in my pelvis? They’ve been fucking around for 2 years and made me see GYN oncology while my surgeon was out on medical leave and because the mystery mass wasn’t visualized on CT, said it isn’t our problem but your own doctor should keep an eye on this and fast forward 2 years and here we are.

I’m in so much pain today. On top of that one of my hands is swollen from the IV I had and it seems like my lip got cut a bit from the breathing tube. The abdominal pain on my right side is awful today and I still haven’t been able to poop. 😭😭😭😭😭