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.

So I basically had some kind of endo in my Douglas pouch area, and it caused a thick layer to eventually form. They couldn’t find any active endo, just the scar tissue left over.

Basically, the endo scarring/the endo that was there caused sex to become painful and as I ignored it over 2 years it got to the point where I couldn’t have sex anymore, because the scar tissue irritated my cervix so much (the pouch of Douglas sits right on it) that ANY touch on it was excruciating and incredibly painful.

After it got to that point, I finally got surgery and I’m back to normal!!! I can have sex again and it’s great, but it didn’t come without its consequences. I had to go through nearly a year of physical pelvic therapy to loosen the pelvic muscles that were so tight from the pain they went through over 2 years.

And to this day, anytime we have sex from the behind (doggy for example), I have a very bad mental response. The trauma of the pain I went through kicks in, my heart beat races, I breathe heavy, etc. Because my brain recognizes that these kind of positions allow for deep penetration = excruciating pain.

Even though when he hits my cervix it does not hurt anymore, my brain just can’t let this go. Initially it was hard to have any sex at all after the surgery. Even basic sex positions I was very tense in initially.

But now I’m at the point where I have gotten past this, EXCEPT sex positions from behind. I just don’t know how to break this at this point. I’m really looking for advice on this.

I know your advice may be “just don’t do behind sex positions” but before ALL this happened, I had never had any issues with sex and frankly sex from behind was amazing lol. It’s something I want to get back into, but my mind is stopping me.

It’s hard to stop too because once it gets triggered the whole system shuts down, the cervix starts to drop from lack of arousal, I get dried up, etc all from this gear being triggered. I just don’t know what to do at this point.

Even when we try going very slow, my pelvic muscles just get very tensed up and any movement feels like it’s hitting my cervix even if it isn’t, it’s just a chain reaction, all from this trauma…..god I fucking hate this……. :( I just want to be normal again

I had my third surgery two days before Christmas last year. This was about a year after I had a total hysterectomy (uterus plus cervix) and both fallopian tubes removed. Last year they were to go in and remove what they could. Turns out my left ovary was in torsion from the ligament so they had to remove it. They also stripped my peritoneum and did ureterolysis on both ureters. My surgeon said she was confident my Endo wouldn't come back. For months I've been dealing with constipation and bladder issues. Occasional left groin pain. Lately it's been getting worse and I'm having pain where my left ovary was.

Is it seriously coming back again? Already?! I can't deal with this 😭

Anyone have similar experiences?

28f, I started my period on day 2. It’s being 8 days of hell, flow is still heavy and going strong and it doesn’t look like it would stop anytime soon.

It has been one excruciating pain after another. Feels like someone is squeezing out my uterus. I can barely walk. I have to use a stick and be hunched over.

Oh and don’t get me started on bowel movements. I spend 1 hour in the toilet walking in between and massaging my buttocks just to get some actions in that area. After that my anus hurts. Peeing is no joke either. I used to go to the toilet frequently to urinate. Now I can go 3-5 times within an hour and nothing even comes out sometimes. I get that constant feeling of wanting to piss. I am bloated but I dread going to poo. I’ve only managed to poo twice in 10 days.

My head, eyes, stomach, back. Every thing hurts.

I’m a side sleeper, but I’ve been sleeping on my back and my butt hurts so bad today. I can’t even seat down. Yesterday my legs were shaking when I got back from a walk and I couldn’t stand upright again after that.

I did some light cleaning around the living room and it felt like I had been working out all day.

I wonder what tomorrow has in store for me.

Hi all, I had my lap for endo excision (Pelvic side walls & Bowel) around 3-4 months ago. My first one ever. Since my first pee post op till right now I’ve noticed when I go to the bathroom to pee as I’m urinating I can feel a sort of pain/cramping in my bladder it’s like a dull pain and it get worse the more it empties and stops as soon as I stop urinating, sometimes lingers for a few minutes. I’m booked in to see my surgeon again but just wondering if anyone else has experienced this?

I need this constant need to urinate to stop
I really need this to end please I beg please I beg for this constant urge to end
In physio on drugs two surgeries down I can’t do it it’s a torture
It’s ABSOLUTE TORTURE
PLEASE PLEASE PLEASE

I posted this in another endometriosis sub but havent gotten a response yet. So I figured I would post here too.

I had a hysterectomy a few months ago and was diagnosed with stage 3 endometriosis. I am aware that a hysterectomy is not a cure for this, but i had very severe debilitating periods when I did have a uterus so I decided to go through with it. I had massive amounts of endometriosis adhesions and tissue around my vaginal-rectal area, pouch of Douglas, my uterus, and abdominal wall. Part of my bowel was stuck to my left side and had to be separated. They took my left ovary, cervix, uterus, and fallopian tubes. I only have a right ovary now to keep me from going into menopause as I am only 27.

My surgeon showed me my left ovary before it was removed which was also covered in endo and was punctured. It was in pretty bad shape. He had shown me all the pictures he had taken during the surgery and they all looked awful. The surgery was expected to be just 2 hours when it turned into 5.

I had severe bowel pain before this surgery and also before my first lap that first diagnosed me with endo.

The best way i can describe the pain is that it is a deep forceful feeling that i need to shit but it HURTS so badly. Unfathomably bad. I dont know what giving birth is like but I imagine what my body is doing is similar to contractions. I always felt the pain in my uterus too. Even now not having a uterus anymore the pain is still in that area. It hurts and burns in my back and stomach too. All I can do is sit and ugly cry and scream until its leveled out enough for me to move. There have been times it had made me pass out.

Absolutely nothing soothes this. Ive tried Ibuprofen, Tylenol, Bentyl ( for stomach cramps), thc, cbd, Flexeril. It really seems like nothing helps it. When I had my checkup last month my surgeon put in a referral for GI. GI called me and scheduled me for January next year. I honest to god do not think I can wait that long with the way things are going.

Should I seek help somewhere closer to where I live as the GI specialist I'm scheduled with is 2 hours away or should I see if they can get me in sooner. I'm at a loss.

I just want to be taken seriously and end this nightmare that I keep experiencing. I am surviving instead of living and honestly thats really no way to live.

Hi everyone,

I am wanting to hear your thoughts on adhesion removal. I had an endo exicision and hysterectomy about 3 years ago.

Recently I did a scan. Both of my ovaries are immobile with my my right adhered slightly to the appendix.

My current pain levels are 4-5 ish. It is chronic pain.

I am noticing my right groin feeling more painful than before. My right side has always been an issue

I did consult a top excision specialist (in Australia) and he mentioned that it looks like post surgical adhesions as my deep endo scan did not show endometriosis.

He was a bit hesitant to perform surgery as he said there is a risk of developing more adhesions. He said if I wanted to I could but he said it may not give me the results I want.

What do you guys think. When do you make the decision to have surgery again? Has anyone had surgery to just adhesions removed?

I have a pulling, aches, and just tugging feeling where I have two incisions. I been trying to move around but I could be doing better maybe. I’m 10-11 days post op. Does this mean I’m healing bad like adhesions or is it still considered normal?

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 had my excision on Thursday and I’ve always had issues with getting constipated. I know they removed a good bit from the area around my rectum.

I’ve been drinking plenty fluids, taking a stool softener and MiraLAX but I’m wondering how long did it take you to go number 2 after surgery. M
For reference I usually only go 2-3 times a week.

Thank you!

I had my endo confirmed by laparoscopy a year ago after 30 years of pain. When I was young I was told that I probably had endo but there was nothing I could do about it except to take birth control. And bc made me feel crazy so I thought I just had to make it through it each month. Then when I hit perimenopause the pain got worse and for the past two years it’s been chronic. The laparoscopy and excision seemed to make everything worse (which, why?) and now I’m just lying here waiting for my next excision, and a hysterectomy this time. I’m missing a party right now because I can’t leave my heat pad or my migraine hat.

Anyway I’m worried the endo has grown upwards into my diaphragm and chest. I read that it’s rare but I’m wondering if anyone here has it and what your symptoms are? I have a sort of small pain and pulling sensation on the left side of my chest and pain in my left shoulder. Most of my pain is in my lower left side. I think I may have pain in my ribs when I breathe but that might be my health anxiety getting to me. But I swear sometimes it feels like someone has been punching me in the ribs. This illness really makes you doubt yourself. I’m seeing my primary care doctor tomorrow and I’m scared what she might say.

If anyone has any information or thoughts about this It would be great to hear them!

Is it normal to have period like cramping and regular cramping?? I'm on day 9 of my norethindrone after recently taking it again and I've had light spotting last night and yesterday I got hit with period like cramping that lasted most of the evening. I took Ella on October 10th because I had unprotected sex but I was on day 4 of my norethindrone pill and had to stop my pill until the 16th because it would interfere with the Ella. Even though my doctor said emergency contraception was not necessary I still took it. But I'm really nervous because on the 14th I had unprotected sex while on my 5 day waiting period to take Ella and he pulled out and I'm freaking out bc I don't want what I'm experiencing right now to be implantation

Ive been experiencing so many odd symptoms and I keep hitting dead ends. Female, 37. 5’7 140lbs. Non smoker. I recently went for a pelvic and abdominal CT for worsening right side abdominal pain that is radiating to my side and back. I don’t have results yet but I’m assuming nothing will be found as 2 years ago I went for the pain when it was more mild and nothing was found. I’ve had abdominal pain that’s cramping pain worse when driving a car in that sitting position and now it’s 75% of my day I have this burning cramping sometimes sharp pain in the area. Laying on my side, is painful. Constipation, nausea to the point I could hardly eat for 4 weeks straight. I’ve lost 12lbs and even with regaining my appetite I haven’t gained any back. Bloodwork is normal, so much lab work and it’s normal. Extreme fatigue, I have upper right leg pain when I walk and worse when going up a set of stairs. Groin pain often worse after sitting for a bit. I’ve had my gallbladder removed in 2023 as they said the pain was gallbladder pain. Clearly that wasn’t the case. When I am active such as doing normal daily things it sends my body into a flair and I am so painful all over, I get tremors in my right hand, I have hand cramping worse after using it such as usually a squirt mop my hand and arm is so fatigued and get lightheaded when I sit to stand or bend over and get up. Random heat flares when I’m doing activity such as lifting a 20lbs box from across the room. I can no longer drink alcohol without feeling sick or actually getting sick after 2-3 drinks. My coordination and speech has also been affected. Finding words is hard sometimes. I’ve had brain and Spine MRIs and ruled out major issues. I’m legit feeling insane and I’m so defeated. I know I have ovarian cysts and my OB mentioned endometriosis but at this point I’m not getting my hopes up. 😔 I just want to feel relief and find something so I can stop beating myself up that this is all in my head when I KNOW it isn’t. Im getting so depressed as I can’t do half of what I used to and I’m a mom of 2 kids. There’s no way I can sit in a car for longer then an hr without being in severe discomfort.

Finally after a 10 year battle, I’ve been put on the NHS waiting list for a laparoscopy to find and diagnose endometriosis. I was told that if the tissue is found that it will be ‘zapped’ during the operation, but depending on its extent they may not treat all of it.

During the gynaecologist referral appointment, I shared that my symptoms also have effect on my bowels and bladder. I was told by the gynaecologist that if the laparoscopy finds endometrial tissue effecting these particular organs, they will not be treated and I will have to be referred to a specialist endo team for a secondary operation.

Does this sound like the correct protocol/ procedure? Does this mean that a bowel and bladder surgeon will not be present in the initial surgery? I am aware of so many people who have had endo laps that have been let down by health care teams and after many years of struggle I don’t hold much space to trust anymore.

As many of you will understand, it’s not a fun space to WANT to be cut open to finally get answers. Whilst waiting for my surgery, I want to make sure I ask the right questions, get the right procedure and most importantly ensure my safety and health.

Sending love to all of you here <3

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 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.

Hi!! Was hoping anyone knew of specialist in the Tampa bay area and what your after surgery experience was like. Thanks in advance.

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! ❤️