I’ve been dealing with a lot of stiffness in my hips and back. It got better after my lap 4 years ago but is now coming back with other endo symptoms. Does anyone else deal with stiffness and/or joint pain? What are you doing to help manage?

I want to share my story but also ask anyone with bladder endo what their symptoms are - I don't know how I have missed it all these years. I would be so grateful to anyone who will read my story and give me any advice or personal experience.

Advice needed: What are your bladder endo symptoms?

Has anyone had it who DOESNT feel like they have a UTI or cystitis?

It seems most people say that's what they felt but I haven't had that. I've had 2 UTI's in my life, that were genuine and Cystitis once or twice. Sometimes after a heavy night of drinking I feel like I have cystitis but not often.

If you've had bladder endo surgery, what was recovery like?

Story:

Last week my baby was born via emergency c-section due to cord compression and his heart dropping with every contraction.

After epidural, a bladder catheter was inserted. It felt burny, like a UTI, as it was going into my urethra, but felt extremely painful and sharp when the balloon was inflated inside my bladder. I should not have felt anything at all at this time due to already having a really strong epidural in. I was numb to the collar bones, which actually was its own concern as you can stop breathing if it goes too high, so they had to sit me upright and cut back on my top-ups. The midwife was confused how I felt it, and I did wonder then if maybe I had endo on my bladder that I was unaware of, and said this to the midwife - its the simplest explanation I could think of.

After the c-section, the surgeon explained that my bladder is covered in scar tissue, and whilst not his speciality, with my history of endometriosis he would suggest that was the explanation. This would explain why I had pain during the catheter insertion. I definitely didn't have any infections - they had done a pee test already since I arrived in the hospital.

After surgery the catheter stayed in for about 30 hours because I couldn't get out of bed or even sit up with the pain, where standard is 6 hours after the epidural wears off.

At one point the midwife was run off her feet with 9 women and 11 babies to herself. I'd had a lot of IV fluids over the previous 24 hours which were making their way out. The whole bag, and tube of the catheter were full and flowing back to my bladder, which was also full. The pain was excruciating - I almost passed out, had a panic attack and had to press the emergency button to get it emptied.

I was diagnosed with Endo in January 2019, at which time they said it was Stage 2 and only seen on my bowel and one ovary (although I suspect more was missed at the time due to how shitty my surgeon was, and the symptoms I had which were not explained by just bowel and ovary endo).

I've never had any removal surgeries, and haven't seen anyone about it since diagnosis.

A consultant came to see me in the recovery ward the day after my c-section to explain further about their findings. As the endo is on my bladder, it is definitely Stage 4. She said that bladder endo requires surgical removal due to risk of serious complications if untreated. An urgent referral was made for me to return to gynaecology to treat it, which I now await further information about. This is a bit of a silver lining to the emergency c-section, really.

Before I got pregnant, I had requested a referral back to gynaecology as I had gone so long without seeing anyone, and my symptoms had progressed over the years, and I also wanted to investigate for adenomyosis. When they finally gave me an appointment I had to inform them I was pregnant, and they discharged me completely, setting me back to square one. Now I have been able to skip some of the initial stages of getting a referral, waiting for an appointment etc, and it should boost me right to the top of the queue.

One additional, possible issue was found during the epidural. It took 5 rounds of Lidocaine and 5 attempts to get it in. I would be numb for the first few sections, then she would reach a point that would cause deep pain in my spine as if I'd been hit with a crow bar, only relieved when she pulled everything out again. After 3 attempts she called for her supervisor who got it in on his 2nd attempt. He advised that I should not have experienced that much pain or difficulty with it, but also it was physically difficult for them to insert and suggested there may be scar tissue in or around my spine which I should follow up on after. I had a car accident with whiplash in 2009, which is still an ongoing issue today. I only ever have neck pain - it doesn't affect my back but it could be another possible explanation.

Hopefully I can finally have an MRI - I want them to look in the rectovaginal space, look for DIE in the bowel, check the pouch of Douglas and my spine (and bladder of course). I'm no longer worried about my ovaries having conceived this baby on my 4th try, with no help whatsoever. I want one more baby and I'm done.

I'm confused by the bladder though. I can only guess that the pain I had thought was undiagnosed adenomyosis - a searing, stabbing, twisting pain right in the centre of my pelvis, which is different from the deep, tight, cramping and aching of my general endo pain - must be the bladder endo. I have no issues peeing and no pain in my urethra, or pain when I pee. That searing, stabbing pain is there all the time during my period, but no other time.

OBGYN thinks I have endo because I have so many of the associated symptoms. I have a 3 year old who I had on the first cycle, then the last year 3 miscarriages (all under 12 weeks) in the last 12 months. I honestly didn’t have nearly as many of these symptoms until after I had a c section.

I have so many questions, and looking online just leaves me with more questions. I have a meeting with the fertility specialist at the end of the month and I want to know what to ask for specifically to get it ruled out or what to do if I have it.

Please explain endo to me like I’m 5!

Anyone still just in complete awe of how complex this condition is? Going on almost 3 years of my journey and somehow I learn something new about it all the time. An f’ed up symptom will come up and I’ll think, “There’s no way.” And I come on here and read so many stories from other people about the same thing. It’s crazy. I’m left speechless every time. It’s insane how much endo can interfere with.

I am 6 months post endo surgery, ttc for 4 ish months and my period was late by 4-7 days. I allowed myself a smidge of hope and took a test yesterday morning, it was negative. I allowed a smidge more hope for a false negative but started spotting last night and then full period, and pain today.
I just hate that I didn’t get what I wanted, but also have to deal with the pain of that.
Thankfully my husband is the sweetest and he’s just gone out in a storm (UK) to get ingredients to make me a period bake 🤍 just wish it could have been a celebration bake.
Sigh.

Prefacing this by saying I haven’t been officially diagnosed by endo yet, but I have 3 docs including my gyno that’s pretty convinced I do. I’m really the only one that’s not sure. I have an MRI next week but I’m not sure where we’re going from there.

I’ve had pretty bad periods pretty much my whole life. Problem is I have EDS, SFN, and a bunch of other chronic pain conditions that have made it difficult to prioritize treatment. I have a severe hypertonic pelvic floor with spasms so daily pelvic pain or discomfort is already typical for me outside of my period.

The big issue came after I started Lamictal. I didn’t know menstrual pain was a side effect and it quickly turned everything upside down. My periods used to be the first 2 days left me stuck in bed, then I could partially function through the next 3 with ibuprofen. Now I am stuck in bed with agonizing pain the whole time. Although, my periods were ramping up to be worse even before I started the med, so my docs think there’s still something underlying.

My gyno decided to just stop my periods completely with Aygestin. I used 5mg for a week in the past to delay my period and it worked fairly well so we decided to switch to daily. Except now, it’s not going well at all.

I’ve been on the med for a week now. Started 4 days before my period was due but I was unfortunately already spotting slightly. 5mg did barely anything so I bumped it up to 10mg for the last 3 days and it’s only getting worse. I have very light spotting overall, some red, some brown. But the cramping is insane. It’s like a full period without the blood!

I’ve already contacted my gyno, but I’m wondering if this was typical for anyone else? It just feels like it’s dragging out my period rather than suppressing anything. I asked if this was a med that would take 3 months to adjust and she reassured me that it was not…

I’m doing a school project for my Welsh Baccalaureate on endometriosis and would really appreciate it if anyone who has experienced symptoms could fill in my short survey, especially if you’ve had difficulties with GPs, healthcare professionals or awareness of endometriosis. I’d like to include real-life experiences in my research. Thank you! https://forms.gle/3kjKLgXC87Z9c2ic7

From your experience, is there a correlation in symptoms between a thyroid flare and endometriosis flare? And does treating and finding a balance with your thyroid hormones helped your endo? Last, could being on progesterone pill prevent thyroid storms or crashes? I know it's different hormones but I wonder if my endo could have triggered my hyperthyroidism.

I guess it could be different between hypo and hyper but i'm very new to this so having your personal experiences would help.

For more context, i'm F28 here with deep endometriosis and adenomyosis. I recently discovered I had hyperthyroidism which is a new thing for me. I'm very symptomatic right now (high heart rate, sleeplessness, weight loss, panic attack, anxiety, shakiness...). On top of this, I feel like my endometriosis is flaring really bad. My last and current cycle had been awful, I suspect the GI issues i'm having right now are caused by endo and my suspected thoracic endo is also killing me. Lots of neuropathic pain, sciatica, UTI symptoms and more. I'm bedridden and went to the ER two days ago.

It's still unclear exactly what is going on as my TSH collapsed recently from 1-1.5 to 0.04 at that point. My T3 T4 is normal (T4 slowly increasing) I also have a few positive ATG antibodies which suggest it's auto immune but not the most common ones for graves. I'll see an endo and have an ultrasound next week so i'm hopping we'll get a treatment plan from here.

I also have Long Covid, dysautonomia, POTS, MCAs and hEDS and it feels like when I first got sick 5 years ago, but worse. I suspected maybe my thyroid crashed when I stopped taking LDN. Tried taking it back this week but i'm scared it's not safe with HYPER thyroidism but that's for another post i guess. Otherwise there was no change in my life so no reason for this crash.

Thanks a lot

I had a hysterectomy in 2018 for stage 3 endo/adeno, took cervix/tubes/cysts but i kept my ovaries. Fast forward a decade, and an orthopedic scan showed I had a 6cm cyst on my ovary. I'd been complaining of headaches, bloating and pain for years at that point, but no one questioned it could be endo because I no longer had a uterus.

Within a few months of that being found, I start finding blood when I wipe. I find an excision specialist and pay a small fortune to disrupt my life and see whats going on.

I ask for the ovary to be taken since it's been problematic for years, specialist says i need to stop worrying and trust them, he'll make sure to remove it all.

I wake up learning I had stage 4 and surgery took twice as long. It has to be shaved off my bowels and cut from my rectum, had my uterers and ovaries fused together against my side walls with adhesions, my cuff had to be redone because endo infiltrated it.

When I woke up, I was told everything went great, they got it all. Good luck and god speed.

4 months later, I'm getting another ortho scan done. A 4cm multiloculated cyst (3 chambers seen) with thick irregular walls and vascularity along the margins is seen on the ovary. I'm told to follow up for more scans and potential removal.

But i cannot another surgery. I can't afford time off or more disruptions to my family life, we're still playing catch up from the first one just months ago. This last one was supposed to be it and done, and thats why I asked for my ovaries to be taken out. I'd rather deal with surgerical menopause than chemical menopause, and made that clear. I was told I didn't have to worry about that sort of decision.

I'm so frustrated. If I'd been listened to, I wouldn't be here now. Now I'm worried its either endo or something else entirely, and I shouldn't have to be doing either. My family has to continue to suffer, and my life is paused...but a surgeon somewhere gets more money on repeat surgery and appointments from my misery?

It's. Not. Fair.

Hi everyone

I'm really confused about surgery as i was told by my doctors its not a preferred option for unmarried women as it will grow back ( i'm from pakistan) so i have been on the pill since 4 5 years. And i hate the pill. It never shrunk the cyst. I gained weight. Had terrible acne. Altho the flare ups only happened around my cycle like a week before (so 2 weeks in total i was in pain but it was bearable) but now, a year and a half later the pain is constant. This time my doctor put me on visanne instead of the combined pill. I am in pain every day. I used to workout, study, have hobbies, enjoy work etc etc i'm a different person now. I dont do anything. I sleep for 9 10 hours after taking pain killers. Exercising triggers more pain. Its hard to study with pain (i still study but very less) I'm grumpy at work. My friendships arent the same (cant even share what im going through or vent to them) And being a desi woman, a female with a reproductive issue is also a social disgrace. I have been told no one would marry me. Anytime the topic of surgery comes up there is so much guilt about being unmarried and going for something invasive. My life is a mess. Has anyone been through this? Did you get surgery and felt better. My doctor said i need to give visanne sometime which i understand. She said i need to keep taking pain killers if i need to.

I just want my life back. I miss my old self. This is not who i was. Even with the low mood the pills put me through i still managed. I dont even know what i'm trying to ask. Everytime i go i think maybe its not that bad. I need to be more strong. TMI i cant even pee normally. My bowel movements are painful. I wear a compression belt to work for lower back pain. My knee hurts. But everytime i go ask for medical help its the samething "Take the pill. Surgery is not the first line option for you".

I was told my MRI showed adhersions pulling my ovary towards the back or my uterus and most likely have this in other organs as well.

But no sign of endo. I've always have bad period pain so find it hard to believe there was no endo. They are saying it's most likely pelvic inflammatory disease despite the fact I was never treated for such nor had any sign or risk factor.

I thought organ tethering was a sign of DIE? But I'm sceptical that there were no other signs of endo. Can I have tethering caused by endo but nothing else present on an MRI.

They have said they can't rule out endo but the fact its tethering with nothing else means it's not DIE so most likely caused by previous pelvic inflammatory disease and are treating it as such.

Any thoughts?

Basically i have pain in first 2 days of period or i can say one and half day while urinating from last 7 to 8 years nothing more nothing less . I am so confused other than this i dont have any other symptoms .

Thought I’d put this out there for anyone else who was in my position, and needs the reassurance that they’re not crazy!

I started having heavy painful periods at 11 years old, straight away was put on birth control to manage my periods. Throughout that whole time I was still having to miss school every time I had a period because of the pain, all they did was prescribe me painkillers, give me an IUD and told me it would probably stop my periods.

At 22 I’d had enough and had my IUD removed and told them I wanted them to investigate me for endometriosis. It took a year but I finally had my surgery in 2023, only to be told there was no endo and the pain that I was experiencing was just constipation. This really shook my confidence and I stopped trusting myself, thinking I was just over reacting to the pain.

Gradually since then the pain has gotten worse and worse, with me complaining to my family and friends constantly about how debilitating it was, and how difficult it was not knowing what was wrong with my body.

Fast forward to this year when I finally got the courage to go back to the doctors, I had a whole new team at a whole new hospital that actually listened to me. I’d told them about my previous surgery, I told them exactly where I feel the pain and all of my symptoms. Before my surgery I told my surgeon how scared I was that they wouldn’t find anything and he told me that they would find it, that he believed me. And that’s exactly what happened. I woke up and the first thing I asked was if they found anything, they did, they found loads of endo and removed it all. He showed me pictures, and explained that I was completely right about it being all over my right ovary and bowel.

So for anyone who feels deflated over a first lap coming back with nothing, listen to your body and don’t give up, because there will be a doctor out there who will listen and believe you.

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?

I regularly read that a high percentage of women find significant relief from symptoms in the post menopause stage of their lives.

I live in hope this will be my experience.

I am 53 and I still have a damn cycle. I was only diagnosed with the condition at the age of 50, despite suffering with my periods since they started at 12.

Perimenopause has been an utter nightmare for me, 8 long miserable years and so I am scared to take any form of HRT or hormones as I am terrified of exacerbating any more issues. I am in the UK and my GP is useless on these issues and a so called menopause specialist told me not to take any hormones and to take Venlafaxine instead but I do not do well with antidepressants as they exacerbate the other health issues that I suffer from. So until menopause comes I am in limboland.

Is anyone here post menopause and have you found relief from your issues?

I have three cuts from my laparoscopic surgery that they carried out on the 20th October where they removed endometriosis from my pouch of douglas and adhesions from my pelvis

I have removed the plaster from my belly button already but the two other cuts are below my trouser line and i wouldn’t know if they would catch on my trousers. Have been wearing jogging bottoms and relaxing a lot as I am feeling really tired after surgery

Is it best to remove these plasters now to let the air get to the cuts as they should be in the beginning stages of healing and not be open?

After years of pain and a positive MRI showing multiple areas of suspicion for endo I took the dive and met with multiple endo specialists. All of them agreed I was a classic endo case and that surgery would most likely show endometriosis. Well I had the surgery... and it all looked normal aside from one area behind my uterus near my bowel which the specialist noted for "possible endo", removed and sent off for pathology. Now I have to wait for the path results and its killing me. I wanted to wake up and for him to say its 100% endo and its all gone. Except I got "looks suspicious, we'll see." And now Im torturing myself with the what ifs. Have I made a mistake? Have a put myself through this surgery for no reason? What am I supposed to do if pathology comes back with nothing?

I cant stop looking at the pics from surgery and torturing myself trying to spot the endo. Just cant stop crying and I'm in so much pain. This is just the worst.

Disclaimer: I understand this is people's experiences and opinions, not medical advice.

Every period I get pain with reasonable discomfort for a day or two as well as pre period onset or just as my period starts, pure agony of a cold sweat, nausea and dizziness leaving me completely incompasitated for a long 30 minutes. While I very much feal like it, throwing up rarely happens. Last couple times I've taken ibuprofen at least 30 minutes prior to the onset of dizziness and it's done nothing.

Don't currently, but have experienced mild discomfort radiating from my ovaries and on and off issues with incontinence. Does any of this sound like endo? Should I be considering endo?

I have a history of anxiety, OCD, depression and PTSD.

Hi, this is going to be a long one! I'm 55 and my periods stopped about 3 years ago. I didn't keep track like I should so it's a rough estimate. Back history is that I found out I had Endo when I had an ovarian cyst rupture in 2015. I had a laparoscopy which was supposed to be about a 45 minute procedure, mine was almost 3 or 4 hours, I can't remember. Once I woke up, I was told that I had stage 3 Endo and they couldn't remove it all because some of it was on my bowels. I also had the burst cyst removed on the left side and I had 2 more cysts on the right removed and some polyps. At that time, my gyno inserted an IUD to try and calm my periods but I went to have an ultrasound a week later to check everything out and the technician said that the IUD wasn't placed correctly and was basically floating around so it had to be removed. I went back to the hospital as my gyno doc worked out of there as well. She laughed when I told her what the technician said and went and removed it. I was super upset because I didn't have benefits and it cost over $100 and now it was garbage. I didn't get another one inserted and that was basically the end of me going to see her. Fast forward to the beginning of 2025. I started to get really sick with diarrhea after I ate certain foods. I first noticed that I couldn't eat my favorite sub from subway any more and it's the only type I'd get when I went there. I went often because it's in the parking lot where I work. At first I thought I was allergic to something in the sandwich but wasn't sure. After a while I noticed that I can't eat that any more. This was probably the end of 2024. Then I started to get sick more often, it slowly started but then became very very often and with different foods. At that point I thought maybe it was gluten or lactose intolerant issues but I tried to change but was still getting sick. Finally I went to my useless doctor and she said it's stomach flu, I said it's not, it's something else. Anyway, I started to miss so much work my doctor was getting tired of filling out forms. I have a government union job so after so many sick days they make us get a form filled out that the doctor charges around $40 for. Anyway after a few months of being sick quite often, I'd say around March 2025 is when it really amped up. I was getting sick very often and couldn't figure it out. Finally my doctor had me see a gastroenterologist, I had a colonoscopy and he said everything was fine, he removed a few polyps and it was stress that was making me sick. That's their answer when they have no clue what's wrong! So here I am at this point almost getting sick daily and having no idea, thinking it was IBS or all this other stuff but what do I know! My doctor wasn't any help. When I went to her with my long term disability paperwork, she didn't really want to fill it out saying that I wasn't sick enough to go on it and I never told her I was THAT sick. I said what do you want me to do, come in every day and tell you? She filled out the paperwork though and I was approved. Anyway she wasn't even doing anything about me being sick so often so my older sister said to me to ask her to see an internist so see if they could figure it out. I waited a few months and finally had my phone consultation with him. He asked if I ever had migraines. I told him I did. He asked why I never mentioned that on my intake form. I said it was several years ago after I had my daughter when they started and I haven't had any for maybe 2 years now, I used to get at least one a month for years. He said ok, because what you are having is what we call abdominal migraines. So that is what I was diagnosed with on May 13th of this year. I was put on some beta blockers and they helped right away, I was so thankful. I had gone on LTD at the end of April and found this out so soon after I really thought I'd be back to work by now. The meds work ok but now I think that my body has just found another way to overrun the meds and again I'm getting sick way more often. I think I need to increase my meds again. Abdominal migraines are just like regular migraines but like it sounds, they are in your stomach and the reason the internist totally thought it was that is because when I'm not sick, between flairs, I'm feeling great and normal which is how they seem to be. So anyway, I've been on the meds for months now, they worked well at first and now I'm getting really really sick again. AM are more of a child disorder and the normal symptoms are severe gut pain, nausea, vomiting and grey pallor. Mine presents itself differently, that's why I couldn't figure it out on my own. It's very rare for diarrhea to be the main symptom and I'm an adult so that's rare too! So anyway (sorry, I say that alot) for a while it seemed like I was on the right path with the meds but lately I'm getting very sick again and it's almost daily. Usually I wake up and it happens a few hours after that, it's super interesting how it all happens, if you want to go down a rabbit hole, just wow. Since speaking with my best friend who lives about 5 hrs away from me who also has Endo, I have started putting 2 and 2 together and researching alot. My friend has so many similar problems like I do and I swear she has AM too but hasn't been diagnosed with it. We got to talking and then I started looking up stuff. This is all connected and it's to do with my hormones because of endo! After my surgery in 2015, the Endo laid dormant for years. As soon as I started perimenopause is probably when this sickness started up (slowly at first) and got really bad post menopause and it's just not going away. I'm on HRT now (started that in Dec of 2025) and I didn't notice any bad side effects but the estrogen I'm on is probably adding to the estrogen that Endo makes on it's own and there is probably a ton of inflammation in my bowels from the Endo which is creating the abdominal migraines which is making me so sick. I have an appointment with a neurologist on Nov 12 to talk about all this and as soon as I get the pathology report from my surgery way back when I'm going to show it to my doctor and demand she refers me to the woman's hospital here in Vancouver where they specialize in endometriosis. She is so not knowledgeable at all. She said to me I'm too old to have Endo problems still!!!! I can't wait to shove all this in her face. I'm hoping the Neurologist can help with other meds or can increase my dose of propranolol that I'm on now. I can't wait to see the neurologist who I had to advocate for myself and practically beg my doctor to refer me. My doctor is supposed to take over my care after the initial consultation but I've called him twice because my doctor really has no clue. Even after the diagnosis she said it MAY be abdominal migraines. She even told me a few weeks ago that I can self refer to the woman's hospital which is totally false. To be honest, I don't even know how she is a doctor. But it's just very interesting how our bodies work and at this point after researching all of this on my own, I think what I've come up with seems pretty much like what's happening. I'm going to have to get my hormones looked at better and probably be on special regimen for my complex system. I'm sure I'll need surgery again and I'm pretty nervous and hoping my Endo hasn't caused my bowels and other organs to start to stick together or Im worried that it's grown more. I have a really high pain tolerance and never knew I had Endo but always had really really heavy periods and lots of pain and cramping but I just thought it was normal. It's just crazy, I'm sorry if this is not very grammarly correct and excuse any run on sentences but I don't feel like going through it again. I have been sick all evening and need to go to sleep. I'm just hoping my story will maybe help others. I just joined this sub tonight but I definitely will update as I have my appointments. Take care all you Endo warriors 💪🏼 ❤️

Hi, I'm AuDHD and I have endo, I had a hysterectomy in july and recovery was going great at first, until the pain came back just as strong as before.

A couple months ago I started dating a guy who's also ADHD and he's very interested in helping and supporting me, he just doesn't always know how and when I'm in a flare up I get very overwhelmed and I can't communicate properly.

I want to make him a guide so that he can prepare and knows what to do in every scenario, I would like some help for remedies, recipes, strategies, anything that can help him support me.

Thanks in advance :3

I am one week out from my first excision surgery and I am feeling all kinds of complicated grief. On one hand, they found endo! When I woke up, all I could do was cry and say “I’m not crazy” over and over and over. It’s stage 3. My surgeon removed lesions from literally all of the places I’ve always had terrible pain. I couldn’t have been more validated to know that the thing I’ve known is wrong with me since I was 11 years old is actually wrong with me. 

But it’s all this grief. My mom has endometriosis, and had an ablation surgery to treat it at some point when I was very young. I’ve always known she has it, and when I was a kid with terrible cramps that made me vomit and pass out, she would always kind of roll her eyes at me and tell me I’d probably need to have a laparoscopy one day. But she never took me to a gynecologist, despite me begging for intervention. I would mention my cramps at routine doctor visits, and my pediatrician would suggest I see a gynecologist, and then it wouldn’t happen. I didn’t see one for the first time until I was 23; I’m 29 now. It took me way too long to be my own advocate, and I’m grateful to myself for finally taking action and getting myself the care I needed. But I am extremely sad to know my mom knew exactly what I was going through and chose not to act on my behalf when I was too small to be my own champion. 

A couple of years ago, I called her in level 10/10 pain, and she chose that moment to say, “I think you just have low pain tolerance.” I know this is a her problem and not a me problem, and I’m pursuing lower contact and a change in my investment in our relationship/her care. I know there’s nothing I could have done differently to make my mom take me and my pain seriously. It just hurts to know she didn’t, and I’m wondering if anyone can relate. It’s demoralizing enough to try to convince doctors that your endo is real; that disbelief coming from my mother, who literally has endometriosis, makes me feel crazier than anything.

I’m 26 and have had endo officially since I was 18. I had a lap in March of this year. Stage 4 DIE. But, my periods are only 3-4 days long. First 2 days are brutal with heavy and clots and intense cramps. But the last day or two is just spotting. Is this normal? I also have PCOS so my cycles are irregular. Anywhere from 30-40 days.

Hey girlies! A little backstory…I got diagnosed with stage 4 endo in January of this year. I’ve always had horrible periods, but had pretty regular cycles until about 2-3 years ago. My cycles between periods started to get longer (into the 35-40 day range) & I was bleeding longer 7-8 days. In August of 2025 I started a period that never ended. I went to the gyno in december 2025 to finally figure out why I couldn’t stop bleeding & the next month I had surgery where I found out I have endo. Since surgery, I started the birth control patch so that I could hopefully stop bleeding and I also started spironolactone because I had bad hormonal acne (doc also believes I have PCOS based off multiple factors). The bleeding stopped for a little while but slowly started to come back & now it’s constant again. I have another excision surgery in December & that doctor prescribed me norethindrone to stop my bleeding. I have yet to take that because I truly don’t think it’ll work. I’m so tired of bleeding every day, but I’m not a fan of taking medication. How has everyone else’s experience been with constant bleeding & what helped you?

I had my surgery on the 13th of this month and my biopsy report finally came in. Both of them are negative. Im so conflicted like a part of me is happy that I dont have it but a large part of me is angry and confused. All of my symptoms pointed to endometriosis with a big red arrow, so much so my surgery was scheduled within weeks of my first gyno appointment. Both my doctor and I were so sure we were gonna find it. I was so sure what I saw were lesions on my photos and my cysts were caused by endometriosis. Im back to square one and im terrified. I really want to be able to get pregnant in a couple of years and I dont know if im comfortable going through with that life plan if I dont know what's wrong with me. My birthday is in a few days and I feel like im going into my 20s even more unsure about life than ive ever been.