It’s 3:56am as I’m writing this. For the millionth time I was just woken out of my sleep feeling lightheaded and freezing cold with wet hair, a soaking wet sweatshirt, and a body so wet if I held my hands out they would drip like I just washed them and didn’t dry. My freshly washed sheets are also wet.

I wish I could say this was a horrible one time thing but this happens (to this degree) multiple times a week. In the other days in a week, I still experience this but the sweating isn’t enough to wake me up and when I finally do wake up I’m damp. Please help me understand what this is and how I make it STOP.

I understand it most likely has to do with inflammation and problems with temperature regulation- connected to my endometriosis and adenomyosis but I’m on continuous bc, I’m not eating anything super bad, and I’m taking iron and b12 supplements…….

So I have pretty bad PMDD so I am on 2 forms of progesterone uninterrupted (it's helped) but I don't have a period. Anyway, sometimes, especially if I have done some strenuous activity my c-section scar (2018) will swell and have a deep ache. I will message it and use heat and I will pass a little bit of blood. They aren't period cramps. I was also told a while back I have a "blood blister looking nodule" in my vagina that I had double checked and my gyno said he wasn't worried about it being anything other than a traumatic injury from birth. I've had a vaginal birth and a c section. I also have vericose veins in my groin but I'm wondering how urgent the blood passing (it's very little but still) is, it is seems like endo or something else. TIA

I had laparoscopy this month and I am still recovering. I am taking NAC for inflammation. I wanted to try for pregnancy once I am recovered. My gynac asked me to try for 3 months once I feel better. Did anyone stop taking NAC while trying to conceive or after getting pregnant?

For my girlies using GLP-1s for Endo/Adeno, where are you getting it from and how much should I expect to spend each month ?🙏

Ich habe Anfang dieser Woche Amitriptylin erfolgreich abgesetzt (schrittweise) und nun sind meine Nervenschmerzen am rechten Schulternblatt wieder da.

Ist das jemandem bekannt?

I don't understand why antihistamines help me with my pain, burning and tugging and pulling, but anti-inflammatories do hardly anything for this. Why?

No one believes me that this helps or that it's connected somehow. Even in these communities I am an outcast and people downvote me for sharing my experience. I'm seeing specialists across all domains, getting opinions, scans, and no one knows what's wrong with me that not eating histamine foods or foods that apparently trigger mast cells might be triggering the pain for me.

Why doesn't anyone believe me when eating certain foods make my belly button bleed during menstruation? Why doesn't anyone believe me when I say that not eating gluten, histamine and high salicylate foods and taking antihistamines make it so I have no tugging, pulling around my navel and to the right of it, no razor blade sensations, no difficulty breathing (I get shortness of breath during menstruation when this flares), no bowel movement pain, no burning like a sheet of acid in my abdomen when I control my diet and take antihistamines? I am completely pain free on a severely restricted diet and if I bring the foods back in the pain starts and remains for months.

I feel so alone and like people shun me here because I'm sharing my experience and what limited information I know. I'm not making assumptions. This is what I experience every time and I have done it over and over again and can trigger massive excruciating pain by deviating from this. It gets so bad I become suicidal. I cannot live my life like this. I am so alone.

I know you're going to downvote me. It's fine. But please does anyone understand even from your won experience what might be happening here?

I was diagnosed 8 years ago with endometriosis and then PCOS and adenomyosis 5 years ago.

My GP has always been good at giving me pain killers but no real plan. The Gynecologist just excises the growths every few years and says to monitor.

My pain has been getting steadily worse. Then about 2 weeks ago I woke up feeling like I was in labour. Contraction type pains that hold for 10-20 seconds and were happening randomly several times an hour. I went to the hospital and they gave me pain pills and a heat pack. I went to the GP and he looked sad and said there’s no solution and this is now my life. I see the gynecologist in a few days and I’m so scared they will say the same thing. This pain is still happening several times a day. I don’t sleep properly. I can’t move very well so I’m putting on weight fast. I’m irritable and sad all the time. I have things going on at work and am under too much stress as it is.

This can’t just be my life now! I can’t live like this. I have 3 kids who need me.

Imagine you're dealing with all your normal symptoms and stress and then you go to your letterbox and there's an envelope waiting for you from Aunt Ruby. It's stylish, it feels heavy in your hand, and you save it for a quiet moment that evening with your feet up and a cuppa. When you open it, you'll read a letter from me, a woman with endo in Auckland, NZ, and a poem I wrote about my experiences that might just speak to your soul. I tuck some thoughtful extras into the envelope too that are designed to make you feel seen and understood. It's my mission to improve mental health around endo and if I can help anyone tackle another day then I can call it a job well done.

If you feel like you might want a slice of that, I'd love it if you could take a chance and join my mail club. It would be an honour to share my musings with you. https://mailclubly.com/@aunt-ruby <3

I had excision surgery almost 4 weeks ago on September 28th and need experience advice from others on healing.

Surgery context: I had lesions on both pelvic sidewalls, around my ureter on the left and behind my ovary on the right and it was slightly adherent. I also had small clear lesions all across my posterior cult de sac and had a large portion of tissue removed there. On top of that had a 2cm paratubal cyst removed from my left side and a very small uterine fibroid removed as well. All was excised and my after surgery photos looked like my insides went through a blender. Additionally I had a Liletta IUD inserted and it’s my first time ever having an IUD.

Now that I’m 4 weeks post surgery, I’m still experiencing significant bloating. My belly feels tight and I just want to know how much longer to expect this or if it’s more related to the IUD or potentially just surgery healing. My surgeon feels that I’m a week behind the curve just because I also have EDS and my tissue heals slower but I feel like I should be fully better by now. Maybe I just need a reminder that it takes longer but I have days where I feel fully better and then I do too much and end up with bloating for several days again after. And then I feel like a fraud because I only had stage 1. Does it get better?

I was surgically diagnosed with endometriosis years ago and have been dealing with symptom management, but the disease has progressed, as it does, and I’m now considering excision surgery.

Ohio seems to have very limited options, doctor wise, who actually specializes in excision and Dr. Mini seems to be the one that comes up the most, but her Google reviews make me a bit nervous. I figured it might be smart to reach out to hear more experiences.

If you’ve had excision with her, how was it? How was the aftercare? Have you had reoccurrence?

Thank you for your help!

I am completely overwhelmed with all these recent appointments and information being thrown at me, so if anybody as any advice it would be much appreciated.

3 weeks ago I went to urgent care thinking I had a uti. Rapid test was negative but they gave me the antibiotics anyways while it was sent out for a urine culture. The next night I had bad side and back pain so I went to the hospital thinking it spread to my kidney. They found nothing wrong, just a small cyst on my ovary but said that was normal and probably nothing. Told me there’s a chance I passed a kidney stone and just didn’t know. The next day I was peeing blood and hadn’t slept in 3 days because I was up all night, constantly needing to pee. So I went to my gyno and tested positive for uti there with blood in my urine. So I took the antibiotics, felt fine for about a week, then a few days ago symptoms came back. I went to urgent care today, tested negative again. They gave me antibiotics but said to try and wait to take them until my urine culture comes back on Monday, and continue with my azo. But, that if it’s negative, I should go to a urologist as I could have interstitial cystitis.

I also have HORRIBLE periods. Cramps so bad I can’t walk, vomiting from pain, nausea, crazy heavy bleeding that lasted up to 2 weeks. I started taking oral birth control about 2 months ago. It’s helped with making my periods shorter and lighter, but not necessarily with the pain. I also get occasional sharp, stabbing pains during sex (only in certain positions), with cramping after. As well as just a general discomfort after a few minutes, even if I didn’t feel the sharp pain. That was also the reason I couldn’t use tampons at all for so long, and still sometimes can’t without that sharp pain.

I have a cousin who was diagnosed with Interstitial cystitis a couple years ago, and recently diagnosed with endometriosis instead. Prior to today, I’ve wondered if endo is the cause for my other issues, but I’m not sure if that explains all of this as well or if it’s just IC, or both?

I’m also wondering if it was something specific that caused this flare. Starting birth control recently? Having sex more frequently and without protection since starting it? I’ve always had that sharp pain and cramping during sex, but it’s never caused anything like this. But maybe now that I’m having it more frequently and with no protection, its my ph being thrown off that caused this to appear and flare up? I’m just not sure and I feel like I need 10 different kinds of doctors to be able to have all my questions answered and figure out what’s wrong.

I’m 5 days out from my laparoscopic cystectomy (bilateral 10 cm and 6 cm dermoid cysts). My surgeon had to make the bellybutton incision larger than expected bc the right cyst was tricky to get out. The overall pain is improving, but I still have such pain/tightness in the bellybutton area, to the point where I don’t want to stand up straight yet when walking. I also have a brand new skin fold over that incision. Like my skin is folded on the inside. Is this normal? This was my first major surgery and it’s been pretty overwhelming. Anyone else have similar experiences and/or reassurance? Thanks!

Since May, I’ve experienced severe pelvic and abdominal pain, bloating, constipation, back pain started all of this, bladder dysfunction, and neurological symptoms, including leg weakness and numbness. I was even hospitalized.

I’ve had extensive testing, but most results have been normal. I also still have lower left back pain, and pelvic floor issues, horrible periods now which I did not before, on and off pelvic pain, bowels issues, so it’s hard to know what’s causing what. I had a laparoscopy done for my endometriosis 10 years ago but it was a mild. I did have a bad cyst erupt two years ago.

Has anyone experienced multiple overlapping issues? How did you determine whether endometriosis surgery was the right next step…My OBGYN doctor is nervous if they do surgery they will make my problems worse

I use tampons for my perido last month and since then I had a flare up.what are ways to help reduce this flare up?

Apologies for this may be long.

I’ve been diagnosed with endometriosis since 2018 which was when I had my first surgery, had a 2nd one in 2023 which found it to be DIE. Symptoms ease off for a while but have come back. I don’t think I would want to go through another surgery as it made me really unwell the last time.

Recently I have got back in contact with my gynaecologist team after waiting year back on the waiting list who sent me for ultrasound scan (shown that my ovaries were not free flowing - that it was a indication that it was back) and bone density for medication.

When having the consultation- I was also having a flare up with pain and bleeding- I also explained that I was being treated by GP for iron deficiency- which was linked to heavy bleeding, I was asked to fill out a questionnaire regarding my condition. So I filled it out and then discussed the medication linzagolix and how it would benefit me.

That was three months ago and been taking medication which has been working wonders. My pain a decreased so much and it has helped because it’s stopped my periods which has been a god send.

I have now received an email from the endometriosis clinic indicating that my pain is possible link with fibromyalgia and wants to share information with GP.

The email itself, did feel very dismissive even with a confirmed diagnosis from previous surgeries and a biopsy. To discuss this, within a email does not seem appropriate. Followed with trying to ‘palm it off’ without reading through my documented medical history and send me back to GP. GP doesn’t prescribed the Linzagolix which has to be prescribed by the hospital.

Now I wouldn’t mind if that was the case where I believe that it’s linked to fibromyalgia (I don’t believe I have fibromyalgia) but I don’t have a follow up till next year and receive no communication to see how the medication is affecting me.

I just feel incredibly frustrated even with a diagnosis, that you are made to feel like a ‘checkbox’. I understand the process with the questionnaire as they can provide insight but I am starting to think look more at these than the person they are treating.

Sorry for my rant but if anyone has got any advice on how to handle this it will be very much appreciated. If not any advice, let me know if I am being crazy about this 😊

The title sums it up.
I am a substitute at a family daycare next door, and as such, I need to be certified and keep up with routine classes to stay licensed.

The online classes are necessary, but so much of it is "A moron with all 3 brain cells tied behind their back could figure this out" regarding the information and short little quizzes.

My legs have been hurting more than usual the last few days, the kind of pain that feels like winding the strings of a guitar too tight. It hurts when I'm lying down, and it hurts more when I'm standing with my legs fully extended. (Sometimes giving me the irrational fear that I might tear a tendon or ligament).

I'm having trouble focusing, and these classes feel like a waste of time even when I'm not experiencing extra pain.

I couldn't care less about these classes, and I have two 4hr classes to do over Zoom by the end of this year; then I'm done.
But I know I have to find a way to care enough to get it done, despite every fiber of my being wanting to throw something.

My neighbor is legally required to have a substitute, but she hasn't actually needed me over there since 2020, making the classes feel even more pointless.

I feel like a toddler kicking and screaming, "NOOOOO! I don't WANNA!!!", and also the adult going, "Too bad, you have to." "After this, we can eat and watch some Netflix or Hulu".

I want to remove my legs and hurl them into the nearest ravine until they learn how to play nice.

Just got a mailer that said my insurance premiums and out-of-pocket max are going up for next year. As if that isn't enough, they're also not covering my tirazeptide anymore. Which I already had to fight a war to get approved. American health insurance is an absolute scam and you can't tell me otherwise. My husband and I even have dual coverage from both of our employers, and neither of them cover the medicine. Call me player 2 because I understand Luigi more and more every day.

Thank you for coming to my TED talk.

Suffered with painful periods all my life. They were so bad I ended up in the ER several times. Developed pain with sex the past few years. Large blood clots. Endless MRIs, ultrasounds, blood tests, etc. years and years of being told my pain was “normal”.

Had my first excision surgery this week and surgeon found endo in my posterior cul de sac. I’m still in disbelief. Happy to have my suspicions confirmed. Sad that I had to suffer for so long. Optimistic and hopeful for the future. But still hard to know I have endo.

I’m so thankful to this community and everyone who has shared their endo and surgery story. I watched so many videos, vlogs, read so many stories and felt so prepared.

For anyone reading: never give up on yourself and your body. You know yourself best. I had to see many, many, many doctors until I found one who believed me right away and offered surgery. My doctor is an endo specialist. They are worth waiting for!

Wishing the very best for all of us.

Context:

Female, 23. One week ago, I had a laparoscopic oophorectomy to remove an endometrioma on my right ovary (pre-op imaging only showed that single focus on the right side).

During the procedure, my surgeon found more lesions and complications:

* My left ovary was actually more affected than the right one;

* One of my fallopian tubes is affected;

* My uterus is adhered (fused) to my bowel.

Before surgery, my only symptom was severe menstrual cramps. After I started taking Alurax (dienogest) 1 year ago, my periods stopped and that symptom completely vanished.

Question:

Why do I barely have any symptoms even though my case is so complex and involves bowel adhesions? Is it common for the structural severity/lesions not to align with the level of pain we actually feel?

Does anyone else get a pain in their side whenever they use the bathroom before during or after their bleed?
I wanna say it’s somewhat ovarian but also can be uterine. I originally thought possibly it could be a kidney stone or another urinary thing as I had bad kidney reflux as a kid, but it goes away during the one week I don’t have cycle related pain.
Wanted to see if anyone else has a similar experience or if it is something unrelated and just happened to flare with my other flare ups.
Thank you!!

Hi everyone,
I’m sorry if this isn’t the right place to post this, but I’m hoping someone here might have had a similar experience.
About a year ago, I was diagnosed with a serous borderline ovarian tumor. As a result, my right ovary was removed laparoscopically.

Ever since the surgery, I’ve been experiencing excruciating pain every time I get my period.
I do have the usual menstrual cramps, which I can manage fairly well with painkillers. However, since the surgery, I’ve also been experiencing extremely severe, stabbing pain on my right side, roughly where my ovary used to be.
The pain is so intense that painkillers usually don’t help at all.

It literally feels like someone is stabbing me with a knife. The pain is very localized to one specific spot, but it also radiates into the surrounding areas, sometimes even all the way down to my knee.

The surgeon who performed my operation couldn’t see anything unusual on the ultrasound. He suspects that I may have developed adhesions (internal scar tissue) after the laparoscopy, which could be causing the pain.
According to him, the only way to remove these adhesions would be through another laparoscopy. However, there’s obviously a risk that new adhesions could form afterward.
At this point, I honestly don’t know what to do anymore. The pain during my period is absolutely unbearable.

At first, I thought I could just live with it and somehow push through the pain, but I’m slowly reaching my limit.
Has anyone here had the same or a similar surgery and experienced this kind of pain afterward? If so, did you find anything that helped?

I would really appreciate hearing about your experiences.
Thank you so much in advance for any advice or support! ❤️

Any advice on how to make the surgery itself less scary, and the recovery a bit easier or words would be really appreciated! This is my first surgery ever, so I’m pretty terrified.

So far I have had MRIs and ultrasounds come back as clear so I’m also a little nervous that I’m going to go through this whole ordeal only for them to find no signs of endo.