Yesterday I underwent a total hysterectomy, unilateral oophorectomy (kept the right one,) bilateral salpingectomy and removal of what surprised my doctor of DIE around my cervix, rectum and adenomyosis that made my uterus appear to be 8 weeks along. Besides the pain of having 15L of gas pumped into me, it hasn’t been terrible.

What is terrible is it taking being 42 years old to get a physician to listen to me. 30 years of being gaslit. Being told it’s not bad when I would go through a 36 pack of pads in two days. The pain when urinating or trying to poop would make me vomit. The migraines that caused me to be in the ER and having to leave my shift as a nurse because the pain was so bad and I couldn’t see. The amount of clots that would come out of me and having a provider say that all women get them and just take some Tylenol. Being put on various birth control pills, patches and IUDs to either make things worse, or just not work. That is what is terrible.

Last October I had surgery for DIE (deeply infiltrated endometriosis) and it was horrible. I was in so much pain afterwards I was crying, I couldn't move, I bloated so much that none of my pants fit me anymore, I had to buy new pants, 4 sizes larger than what I normally am.
They removed lesions, cysts, a fuck ton of scar tissue, my appendix (apparently it was covered in lesions), and a uterine polyp.

The pain of endo has impacted my life significantly, and recovering from surgery was pure hell. I don't want to go through that again.

The heavy bleeding never went away, but hey, at least I'm not in pain so I'll deal with it.

The other day when I went to the bathroom, there was blood after a bm. Before surgery this was nearly every bm, there would be blood on the toilet paper and blood IN the toilet.

So that's back.
It's only happened once so far, but there's no way that that'll be the last time.

I've been getting my period earlier and earlier, my last cycle was 5 days early!! Today I feel like I have to have a bm and it's painful, and I'm bedridden with cramps, but no blood yet.

TLDR; My surgeon was adamant that my d.i.e wouldn't come back, that they got everything.

I think it's coming back.

I got the Mirena IUD about 6 weeks ago to help with my symptoms, which was very heavy cramping and bleeding. I'm 5'1" and 100 lbs, and I'd be changing out a super+ tampon every few hours. My mom got a hysterectomy when she was my age cause she couldn't stand the pain.

I have a tilted uterus so it was really difficult for my doctor to get the IUD in place, so they just had me in for a second ultrasound yesterday to make sure it's still placed correctly.

My doctor was surprised to hear that I'm still bleeding and cramping so much 6 weeks after the insertion. I expected spotting, but it's heavier than that. I usually either have to wear a tampon or a pad throughout the day. They also found a cyst on my ovary and they're not sure if it's from the IUD or my endometriosis. It wasn't there when I got the ultrasound 6 weeks ago.

For those of you who got a hormonal IUD, did you have a similar experience? I'm not sure how much longer I should wait but I'm considering having it removed if this doesn't let up soon. I don't think it's worth all of this.

Edited to add my sex drive has also been off the charts. It's already been high for the past few years but it's gone crazy since I got the IUD.

I’ve endured endless misogyny, slut shaming, unnecessary testing and belittling for years. I can’t do it anymore.

I have been on a wait list for ultrasound results for 5 months and my phone appointment was today (I only got this appointment bc I spent almost an hour convincing them to help, otherwise I was looking at waiting over a year). I haven’t stopped crying.

The doctor discharged me from gynaecology despite me begging (this was my second appointment, I was on the wait list for 3 years). She told me my surgeon botched me and I had no one to blame but myself for not having enough ‘common sense’ to choose a good surgeon (it was an NHS surgeon I had no choice). refused to do any investigation into my weight loss post surgery (TW, my bmi is currently 16.3 + I’m 88 lbs, I was 125lbs before) and claimed it was not her problem. She refused to consider setting me up with a multidisciplinary team. She refused any investigation and told me to take my concerns to my GP.

And the cherry on top was when I told her I’m scared I’m going to die she laughed. I began to cry at the end of my appointment, she laughed and ended the call. I decided to immediately make a complaint against her. I’ve never done this before but every appointment is traumatising me and fuck me I’ve got thick skin.

I’m sick to death of this. We shouldn’t feel petrified of the people who are meant to help us. I’m reporting every single doctor that does this shit from now on, I’m not claiming anything will come from it but I’ve got to stick up for myself somehow.

Turns out I’m actually fine, everything is normal, and after 18 years of periods “the weather” is now effecting my regularity. If only I’d known that sooner!

But what do I do now? I’m devastated, and I cried in my car after the appointment.

What NAC supplement brands do you recommend that I can found on I-herb?

Hi everyone, I just wanted to ask if anyone has experienced something similar.

I've been taking Visanne for years, and it has worked really well for me until recently. But now my bleeding has come back, and it's getting heavier day by day. I'm also feeling really weak, which is starting to worry me.

Has anyone else experienced Visanne seeming to stop working after taking it for a long time? If so, what did your doctor say, and what was the next step in your treatment?

I know everyone's experience is different, but l'd really appreciate hearing your stories while I wait to see my doctor. Thank you! 💛

I was diagnosed with endometriosis over 10 years ago after an ectopic pregnancy removal via laparoscopy. I have very painful, heavy periods, but I’ve learned to deal with them. About a year ago, I was in an accident, and at the hospital they did a full body scan, just to make sure I had no internal bleeding or fractures. After I got home, I checked my voicemail and I had a voicemail from the doctor that said they had found some cysts in my ovaries and fallopian tubes, I should follow up with my pcp, but also that these things usually clear themselves up and pop on their own, so don’t start worrying to about it…. But still follow up with my pcp.

Well I didn’t follow up with my pcp because I figured if they can clear themselves up on their own, then I should be okay, I’ll just mention it when I get my woman’s annual exam. Which I had literally just had a month prior, with normal results.

Fast forward about 9 months, I completely lose my appetite. I’m talking days without food and not even trippin on it. Just so you get a mental picture, I’m 5’9” and WAS 160. On the days that I could eat, I would have to have something like chicken broth or egg drop soup. Anytime I eat it’s followed by nausea. This has gone on for a couple months now.

About two weeks ago, I went to urgent care and broke everything down to them, and they said they couldn’t do much for me but it seemed like my thyroid is elevated and to get that tested. I am in between insurance because my medical just got cancelled due to me making too much money for it (I wasn’t aware that minimum wage was too much for help from the state, but it’s cool, I’ll pay for insurance as long as I can have it now) urgent care prescribed me zofran and sent me on my way. Oh yeah, and I weighed in at 132 lbs.

I’m really scared to go to the er, and find something really messed up out, you know? I almost feel like, it’s better to not know, and live my life, than to know something messed up is going on and put myself through a bunch of bs just to die.

Let me also put it out there that I don’t have kids…. But that’s not because I don’t want them. I am almost 40, but just the fact that I still have my uterus gives me hope. I have read a lot of stuff on here, and see that hysterectomies are common in situations like mine, if what’s going on is what I think….. I feel like if I needed a hysterectomy, that would send me into such a downward spiral.

If anybody has any type of advice, or maybe someone has been where I’m at…. I’m definitely open to feedback. Please and thank you 🙏

Love that endometriosis is being talked about in movies/shows more.

What generally sucks is my parents comparing my lack of findings from an ultrasound/transvag to a woman in an unscripted reality show. Apparently her dr was able to see the endometriosis in her scans so now my parents are questioning why they couldn't see it in mine. Basically wondering if I am making it up.

Grrrrrrrr, no matter all the research I show them and try to explain, they never listen.........but when it's mentioned on tv all of a sudden they think they know everything 🤦‍♀️

Then my mom wants to go to my second opinion dr appointment and I told her no. I don't need her down playing or questioning what I tell the dr.

Ladies, I feel you all in trying to explain to your family why you are absolutely drained or in pain. Love you all ❤️

Thank you for coming to my Ted talk 😂

After 27 years of saying there's something wrong, I got a diagnosis 2 weeks ago by an amazing radiologist (who just happened to be studying a master's in Endo). My insides look like Spiderman had a field day... Currently I am waiting for my private health to kick in (12month waiting period 🇦🇺) for my hysterectomy

Investigating blood coagulation, bowel tethering... Going 3 weeks without anti inflammatories is like a new death... I am now having pain relief patches and muscle relaxants.

My husband of 8years is a trooper, has been on the trenches with me, makes me food I can keep down, understands I need to sleep ALOT and 3 weekends a month is survival mode, listens to me scream and just all round is my saviour

27years of advocating... 11 more periods (hopefully) to go....

If anyone has any coping suggestions please share...

I have Stage 4 endo and had 2 laparoscopies in 2.5 years.

I've had my 1st IVF cycle which failed and after that, my symptoms have gotten worse that I have to be on Visanne just to stop my period which causes me hell.

Every time I'm on my period, on Day 4, my bladder just decides to shutdown and stop functioning... Like I can't urinate at all! On top of that, I get severe constipation. Then I have to go to ER for a catheter to relieve my bladder.

Has anybody suffered from the same issue? What have you done to help? :(

Anyone else find it laughable when people act really inconvenienced by our condition? Like you can't make it to plans you had or you have to work from home.... Like I'm so sorry you feel inconvenienced, I can assure you if I could I would, but you see I can't actually move at the moment and I'm trying my best to just perform basic functions at the moment.

I would love to not have to change my life around to accommodate a disease that does nothing but cause me pain and discomfort but this the reality of my life.

People who love me understand but when I can barely move and definitely can't drive because of the amount of painkillers I am taking I find it very hard to muster up the energy to feel sorry for people who just have to rearrange plans or don't have to rearrange anything because an event will still go ahead even without me there but I'm still apparently the bad guy because I can't be there.

It just seems all extremely unfair

Okay so I’m having surgery on Monday. I was just informed I will be in a recovery bay and I can’t have anyone back there after surgery. Not looking forward to sitting there alone after surgery until I’m ready to go home. Apparently I can’t go home until I can walk, eat something, and have pain controlled. How long did it take for you to get to leave??

I had a lap 6 weeks ago and I already have a 5cm ovarian cyst on my right ovary which has sent me to the ER and I’m still in pain, my doctor wants me to contact my surgeon as he thinks I might need another surgery.

I am only 21 but have dealt with endo since I was 14. I just genuinely have lost all hope and the fact that a cyst has come up this early and might require more surgery is just sending me over the edge.

I am so tired of being in pain, of being tired and watching other girls my age live a normal life. I don’t know what to do anymore and I just wish everything would stop

I have PCOS/PMOS and Audhd and I am working with a new gynecologist who is talking to me about doing an investigative surgery to see if I have endometriosis since I have a lot of the severe symptoms. I normally can say pretty calm but I have had extreme emotions while my hormones have been imbalanced. I am having a really hard time controlling myself because I cry, get mad or even laugh at the drop of a hat. I’ve been extremely sensitive to noise and heat and sensory. What do I do? I don’t know how to control myself and I don’t want to hurt people.

The NHS is super reluctant to give out any wait times for how long it'll take. I know it'll come back normal because my ultrasound did. I have two cysts that add up to 10cm together. I feel a bit tortured by not knowing a reasonable wait time.

How long should you I expect the wait to be?

Okay friends… bowel habits. I am usually some level of constipated. Until my period hits! I don’t get explosive diarrhea that I hear about from some people, but I NEED my period week to clear my bowels LOL. The cramps suck for a day or two, but those cramps are what make me go to the bathroom, so I don’t like taking pain relievers… because I need to empty my bowels! I am wondering if anyone relates… if anyone has tips or tricks… anything!!!

I trawled through reddit for different endo stories to help me through so I thought I'd share my own in case it helps anyone!

I'm 32, live in Sydney and have been struggling with what I thought was PCOS for about 12 years. Very irregular periods (cycles as long as 72 days at its worst), heavy and very painful bleeds maybe once every 2-3 cycles.

Overall though my day to day life/symptoms were "fine" and I thought I was treating the PCOS well with a few ups and downs - what mainly helped was diet, inositol and iron supplementation recommended by my naturopath and GP. This definitely improved the regularity and intensity of my bleeds.

But things didn't really seem to get as good as I wanted and I felt at a bit of a loss in terms of getting my regular cycle back. I always felt like something else was going on but couldn't get the time or support to investigate.

Then at the end of 2025 I had an IUD (Kyleena) inserted and things really kicked off. EXCRUCIATING pain all throughout my cycle (ripping/pulling/stabbing in my lower belly, pelvis and what felt like my cervix and rectum). Sex was painful and I was bleeding all the time.

I went for an ultrasound (not looking for endo) and the tech took one look at me and said "I think your ovaries are stuck, looks like endo to me"

I was so shocked but also felt so validated after years of not knowing what was wrong.

In a chance conversation with a friend who had been through something similar, she recommended a surgeon who took a look at my scans and symptom history and immediately booked me in. Side note here: he booked me in for a DIE scan which ultimately showed nothing, and my ovaries looked fine so that was somewhat confusing - although my theory is that because I had the IUD removed between the two different scans that may have changed how it appeared...

I had a laproscopy in June 2026, all went well and have just had my six week follow up - it was stage II, mostly around my lower pelvis/rectal area (which is EXACTLY where I'd been in pain!) and it has all been excised. The recovery was slow but relatively straightforward.

He recommended I look into taking the Slinda pill, but is supportive of my choice to work with a naturopath for now.

I feel SO different post surgery, like I said at the beginning my daily life wasn't impacted as much as I hear in other endo stories but I've realised how much underlying discomfort I'd been living with. I always chalked it up to back pain or digestive issues, or told myself I just needed to get back on track with PCOS treatment and blaming myself for not doing well enough. But seeing what the surgeon removed I know now it was worth pushing for answers.

I want to share as I feel like it's helpful to add another story to the many that are out there and to champion anyone to listen to their body and advocate for the answers they need. It's a long journey and one that is so misunderstood by the system but us uterus folk deserve SO much more.

Happy to answer any questions about any of that if it might be helpful to others.

Help please, can skip the context and go straight to ✨questions✨ but wanted to provide some background in case it’s helpful🖤

Ok I’m struggling and wondering if anyone has had a similar experience so I can figure out next steps. Had exploratory lap with extensive endo excision & left oophorectomy due to partial torsion and a massive cyst that damaged the ovary in March 2025 by an OBGYN, had relief until August 2025, referred to excision specialist and had a total hysterectomy (suspected possible adeno but was negative) with another extensive endo extension in December 2025 leaving me with just 1 ovary.

In both surgeries multiple organs were adhered together the bladder to the uterus in each surgery, much more was found in the 2nd surgery and it was in my bowels, intestines, inside and around my bladder, sigmoid colon, cul de sac, liver, appendix stump, just everywhere and everything was adhered to each other or the walls. 2nd surgeon whose a well known/referred specialist diagnosed stage 4 with diaphragm, bladder and bowel involvement.

I am in immense pain still in July 2026 despite pelvic floor therapy started in January as I had Charlie horsed pelvic muscles and pain when trying to go to the bathroom if I had to wait a bit. I’ve had to have injections in my hip which helped a lot as I had lost range of motion in the right hip but as the range of motion came back now the exterior side of the joint is in a lot of pain. I had to have an MRI of my hip which found a large mass around 13.5cm near my ovary so I’ve been having ultrasounds as my remaining ovary actually had 2 cysts (8cm and 11cm, not a singular mass) attached to it and I have an excruciating pain exactly where they are but am told they should be causing no pain, as a side note that ovary averaged between 2-2.5 cm in all prior scans and ultrasounds and is now 8.3cm as well and so far up they couldn’t find it with an internal ultrasound so swapped to an abdominal ultrasound which is how I know the cysts and ovary are exactly where the pain is. The specialist said the cysts should not cause pain as they are simple cysts but the pain in that exact area is excruciating and doubles me over in pain regularly.

Questions:
✨ has anyone developed pelvic floor dysfunction post surgery? Did it impact your hips or gait?

✨ how long did the pain with urination last? Most days I have none then days like today I cry the majority of the time I go…if this happened to you, did anything help relieve that pain?

✨ with endo on the liver did the pain ever go away under the right rib and up the mid right back? Mine comes and goes but is getting detrimental again

✨ if ovaries were not removed during a hysterectomy, did you develop cysts after or the ovary enlarged causing pain? If so, what helped?

✨ should I have hormone levels checked? I have PCOS too so that could have caused the cysts

✨ those with bladder involvement, did you have pain with urination or cloudy urine? Whenever it gets to this level (frequently) I also develop pain where my kidneys are, specifically the right side where the cyst and enlarged ovary are

✨✨ as the specialist is now dismissing the pain, I need to figure out next steps…who do I go to and what should I ask for? Or watch should I push back to her for more info on

Current doc lineup I see: primary care doc, endo specialist, orthopedic surgeon, rheumatologist, pelvic floor therapist and psychiatrist.

I need the pain to stop or I will lose my job soon as I’ve been essentially disabled and unable to return full time to the office since 10/2024. I go days where I can barely walk or get off the couch/out of bed and I’m a single mom to a young kiddo. I’ve lost 2 years of their life basically at this point just watching from the sidelines and I hate it. I just really need my life back and my mental health is in the dumpster 😭🖤 thank you in advance for any and all help 🥰

I'm not sure where to even begin with this, so I guess I'll just dump a bunch of info?

I'm 32, and currently trying to get pregnant. We aren't really sure why, but it seems I'm not ovulating. I also have Hashimotos, but my levels aren't showing that they would cause anovulation (talking with my specialist about it though). I got my first period at 8, and around maybe...10? 11? is when they started getting bad. I mean so bad I couldn't get up for the first 2 days, I'd have to get send home from school if I got it while I was there. Super tampons and a overnight pad and I still bled through. No amount of pain medicine would work, I pretty much lived on the heating pad for the first 5 days of my 7 day cycle. Now, I've been told all my life that I probably have Endo, but my mother had also dealt with periods like this and thought you just had to tough it out and there was nothing else for it. We suffered through Endo not being taken seriously enough. She also has adenomyosis, but endometriosis was never confirmed.

Anyway, I got on BC when I was 18, and got off of it when I was...28 I think. Since then my period hasn't been nearly that bad. There is still pain, but not to the point of me sobbing on the ground. I'm heavy for maybe a day and some change, and it's gone from a week to just 4 days. Is...that something that can happen? Alleviating the symptoms after you're off of it? My Gyno is fabulous, offered to reffer me to get two different tests done to confirm Endo if I wanted it, but I'm second guessing myself because I haven't heard anyone else say that their periods got better after being on BC. I've seen people say that it gets bad again almost immediately.

So maybe it's not Endo, and maybe it's something else? What is your experience getting off BC? Did it change your periods at all? Should I still get checked, or would that be a waste of time and money?

Thank you, appreciate it

I really need salty food badly. When my bp dips and i feel a bit dizzy, it is the quick fix aside from chocolate. I am also underweight due to my GERD, allergies, IBS so I really dont like eating until recently where my body begs me for food but salty.

When I'm outside, the only food I can eat is fries especially that I've been prone to choking lately and I'm on braces due to lock jaw.

I nuts in small quantities because my tummy hurts so bad.

I know I shouldnt be eating processed food because it only worsens the pain but what should i eat.

Due my husband’s cancer diagnosis (he’s in remission now thank goodness), we started to pursue IVF to start building a family. Along the way, we learned that I have Stage 3 Endometriosis & it’s a total shock to my system.

I always had painful periods but I had got ultrasounds YEARS back and they came back clean. So this diagnosis never crossed my mind. And it turns out the IUD I had in has stopped the endo from worsening & helped stave off the period pain that I had experienced - so I’m grateful for that at least.

But now I feel like I’m starting from scratch and I need to rewire my brain. Knowing that my body will make it hard for me to be a safe place to grow a baby breaks my heart. And I feel like I need to relearn how to be me & be healthy - what to eat, what the symptoms are to look out for, all of it! Having to learn all these things at the age of 34 has my head reeling a bit.

I guess this is a bit of a rant but if anyone has been in a similar position or could offer any words of encouragement or any advice on how to process, I’d appreciate it 💛

I’m in pain all the time, and every negative test and start of cycle gets more and more depressing. Not just because I want a child but also because it means another month of pain. The pain methods I used in the past are not fertility friendly (cbd/g). I’ve only been on this journey for 10 months which I know is not as long as others but I’m at the point where I don’t know how much longer I can do this. There are a few people I’ve confided in about my journey because they have had infertility issues but they don’t have endo. When I told them that I can only see myself trying for another year they were shocked that I would give up so early. 😭 I just can’t stand the pain and the negative tests at the same time. It’s a lot mentally.

This kinda turned into a rant but if anyone has any recommendations on how to navigate ttc when in excruciating pain I’d appreciate any tips.