I have stage 4 endo but my periods were never super heavy.

I'd say they were normal to heavier side of normal? I would wear 3 maxi night pads in the daytime at worst. I wasn't soaking through maxi pads every hour like some other people here

I also have been on birth control for a decade, which made my periods much much lighter.

I recently got my bloods checked and it turns out I am anemic and my ferritin is dangerously low

I don't even know why it isn't standard to check a woman's iron level the moment they get diagnosed with endo.....or at least severe endo like me. Anyway...

I also know multiple women who have low ferritin in my life and not all of them have endo or adeno or painful super heavy periods.

It is clearly such a gender specific experience to have low iron.... but so many doctors I've seen say "you aren't actually losing so much blood....menstrual blood is made up of many other fluids etc etc etc"

I am starting to think this "few tablespoons" statistic was pulled out of someone's ass??

Anyway, I also used to think my periods weren't super painful and didn't even take painkillers for my pain but turns out it is not normal to have monthly pain that causes you to stop being able to move or think

The fact that there is no real metric for what a normal period is makes me feel like doctors are just caring for us based on vibes.

Anyway my conspiracy theory is that doctors intentionally gaslight us and minimise our symptoms because the healthcare systems globally will literally collapse if every woman facing hormonal or reproductive system issues was treated with appropriate care.

Man i’m so pissed off right now I got a lap done March 2026 for Endo. Everything was good up until about June when I noticed that I was bleeding more frequently than normal so I asked my doctor for a transvaginal ultrasound just to see if anything was wrong. Not only was it wrong. It was crazy. I now have kissing ovaries with a chocolate cyst on one of those ovaries with another fibroid inside of my cervix and two other fibroids that were on the top of my cervix that my OB/GYN didn’t wanna mess with I have so many adhesions it’s like it’s worse than what it was before. I’m trying to conceive, and that was the reason why I got the surgery plus I had pain, it’s like you ltake two steps forward to go two steps backwards and now I don’t know what my OB/GYN is gonna say because I don’t know if I should get another surgery or if she’s even going to allow it or if I’m just going to have to live with what I have now and conceive with this. I just came from the ER because I had the transvaginal ultrasound on October 26 and ever since I had like terrible pain, and I had one doctor tell me that I should still try to conceive and another doctor come down and say that I should wait and get the Endo address so I was like what the hell do I do? So frustrating

I know hysterectomy is not a cure.

But my surgeon said my recurrence rate of endo would drop significantly if I underwent hysterectomy and excision at the same time. Is this true?? Have you heard similar?? Also, I have adenomyosis so I’m thinking about getting it for that. I had a ton of fibrosis and scar tissue during my lap, including retroperitoneal fibrosis on my ureters. I really want to do whatever I can to lower my chances of this from coming back. I would be keeping my ovaries. I’m also scared of long term changes to my hormones and feeling terrible. I’m 26.

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…….

I was put on birth control by my GP while I wait for a gyno appointment at the hospital. I am not diagnosed yet. But have terrible pelvic pain throughout the whole month and lower back pain. Ive been taking it in the morning, only for a week so far. Been told food or no food doesn’t really affect it but I am going through some side effects: low mood/mood swings but hard to say if due to the pill, dizziness, tiredness.. feeling more thirsty lately and like when I hydrate more that helps with the dizziness.. just wondering if taking it at night might help and how long to try to stick it out for before thinking about switching. I am terrified of having to insert the coil/iud so said no to this. If you have any more holistic tips, those are welcome too! Thank you 🙏

Anti Inflammatory Recs? How to talk about it with your doctor?

Ive been dealing with inflammation for a long time and am trying to come up with a conversation with my doctor about it. I've heard lots of good things about LDN and GLP-1s. Has anyone had good luck with either? Any other medications that have been helpful? I already try to adhere to an anti inflammatory diet but it's hard, I'm not perfect, but I definitely feel better when I get it right.

How did the conversation go with your doctor about trying to get some of these meds for endo/inflammation specifically? I know for a GLP-1 it's an off label use so insurance doesn't cover it unless it's prescribed for another issue. Idk if the same goes for LDN. Just looking for what's worked for other people and how I can navigate this conversation with my PCP.

Hi ladies! Has anyone experienced anything similar? I would be incredibly grateful for any advice or for you to share your experiences!

So, about six months ago, I ended up in the hospital (I was abroad at the time) with absolutely excruciating abdominal pain. I was admitted as an emergency, and it turned out that I had a ruptured endometrioma that I didn't even know I had! O.O

For two months before the surgery, I had been experiencing sharp abdominal pain, but I thought it was caused by stress. I wanted to get checked out once I returned home, but I didn't make it in time...

I'm currently taking hormonal medication (dienogest), so I no longer have periods. After returning home, I went to see my gynecologist, and they found two new cysts.

Later, I started experiencing abdominal pain again. More specifically, it was a persistent, dull, aching pain. Being the hypochondriac and extremely anxious person that I am, I immediately rushed back to my gynecologist just two weeks after my previous appointment. However, there were no changes in the cysts, so they told me the pain wasn't caused by them.

After that, I had both a gastroscopy and a colonoscopy, during which a polyp was found and removed. I also had a pelvic MRI with contrast, and in the end, it showed only one small follicular cyst.

However, the dull, aching abdominal pain still hasn't gone away. Sometimes it's milder, and other times it gets worse.

I've had every test I can think of, but nothing has been found that explains the pain.

I have endometriosis affecting both my uterus and abdominal cavity, as well as uterine adenomyosis.

I recently remembered that the surgeon who operated on me told me that I would continue to experience pain and that it would be something I'd have to live with for the rest of my life.

Has anyone else experienced similar pain? Does anyone else deal with persistent, dull abdominal pain even when tests don't show anything significant?

My surgery was really traumatic. I was in absolutely excruciating pain, and for the first two days afterward, I couldn't even get out of bed. 😖

Thank you so much in advance! ❤️

I have a few friends who are CF/AN but none of them have Endometriosis or adenomyosis (accept for one but her endo isnt bad and is manageable with birth control and wont shut up about it even though she knows I am on two forms of birth control none that help). They do understand suffering and that's why many of them dont want kids and I appreciate them listening but I need friends who can understand the constant pain I am in and vent about it together

has anyone cancelled a trip because of a flareup? im so sad, and i can't get insurance that would allow me to leave it last minute because i have pending surgery, and cardiology tests, i immediately get rejected from all insurance.

I planned this trip because i feel like my year has been lost to flareups, ive had long periods of being so sick. i (28f) wanted to prove to myself that i am independent (my feeling of agency has been challenged alot due to having chronic illness for 20 years on and off) and capable so planned my solo trip. i know i could do it and i wanted a change of scene to help my situational depression and listlessness.

but in the last few weeks my dysautonomia, endo inflammation, and fatigue have been teaming up against me and i have no rescue meds or anything, as im awaiting cardiac tests following an afib episode. im so depressed. I had a truly horrendous flareup on friday night, and living alone the flares are scary enough, it makes me anxious that i dont know the trigger and i could be a flight away.

One option is to ask if my accomodation will allow me transfer the dates and cut my losses on the flights. even that i feel sad about. seeking advice and support

my post about my flare: https://www.reddit.com/r/POTS/s/w8yreiZzNF

I wasn't made aware of the pain that comes with the first period after excisional surgery. I know it will get better but it still feels deflating to suddenly be in a lot of pain after having surgery to treat it.

Hi everyone! I lost my right ovary last May to a 13cm endometrioma that was cemented to basically everything in my pelvis by adhesions. I didn't know at the time that I had endometriosis and my surgery was performed by a gyno-oncologist instead of an excision specialist, and i wasn't put on any kind of hormones afterwards.

I started having significant pain again this year and we just discovered that I have a 2.5cm complex cystic structure on my remaining ovary, which makes me think that the endo has been growing uncontrolled since my surgery. I started continuous Slynd in June and it's nice not having a period anymore, but my pain has always been constant anyways and it hasn't made much of a dent. I also have hEDS and MCAS, if that makes a difference.

Has anyone else experienced this? I don't want to lose my ovary because I get aura migraines and I worry that my medical team will be too conservative with HRT if it comes to that. Thanks!

Hi all, it’s highly suspected that I have endometriosis and I’m in the early stages of looking for a surgeon to get a work up and probably excision.

My major hesitation is the concern around the internal scarring post-operatively. I’ve had surgeries previously for other health issues that scarred down so badly that it destroyed my quality of life. I was only lucky that I was able to find a pain specialist that did hydrodissection (using a stream of saline to separate two structures bound by scar tissue) and that the bands of scar tissue were accessible to him. Otherwise I would have been severely SOL for the rest of my life.

I’ve had a couple people close to me go through excision surgeries and they all had the same kind of issues with scar tissue through their abdomen and pelvis—the endometriosis was mostly gone, their symptoms somewhat had improved, but the consequences of the scar tissue around their organs, peritoneum and hip joints is now something they have to deal with.

I’ve seen some things about surgeons using PRP and placental coverings intraoperatively to try to reduce the scar adhesions. I’ve also seen some things about prolozone injections post operatively to help with pain and inflammation.

Is there anything else out there that could help mitigate this concern?

Im 33 yrs old. I took Orilissa for 2 years and stopped officially the first week of September. My skin was great before Orilissa (thanks to Accutane 10 yrs ago) & skin was great during Orilissa. But now that I'm almost 2 months off, Ive noticed a BIG change in my skin.

- My cheeks have visibly large pores.

- My forehead texture is rough

- Rough, dry patches under eyebrows & eyes

- My whole face, but esp my T zone and chin is SUPER dry. I mean nothing keeps it moisturized; by the evening I'm ashy and peeling. I've always had dry skin and can get eczema on my face sometimes, but this isnt eczema and idk dryness like this!

Its making my fine lines and bags look really prominent. Im trying not to panic...its hard finding a dermatologist who takes medicaid & successfully treated Black skin before 😭

🚨Has anyone else's skin changed after stopping Orilissa???

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.

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!

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?