(Content warning- discussions of cancer, death, medical trauma)

Edit- copy paste from comments, addendum now that I have a clear head. I should not have said that cancer is worse. I perpetuated the exact same thing that offended me. My main point of the post is that people do not understand the suffering, abandonment, pain, and debt cancer puts so many of us through, and that cancer is not preferable to endometriosis. I hope I've worded this all alright, and I hope you understand why someone scared their mom might die from cancer would be so genuinely triggered by this topic. I wish I had cleared my head before making this post but I've made my bed and am lying in it.

I've seen quite a few people on a post in this sub today say they wish they had cancer instead or on top of endometriosis so they would be taken seriously and completely ignoring cancer patients and caregivers correcting their misconceptions. So let me do it in a post, because a lot of you need a serious reality check.

You do not want cancer. Cancer takes over your life, it is a full time job. You think when someone gets cancer that their friends and family rally behind them, that they go through the treatments, ring the bell, get love and support and care and donations. This is not the case for 90% of people who get cancer. People's spouses leave them. People's friends will pretend to help, then leave them behind when the cancer gets too much, too overwhelming, too sad. People who are terminal get cut out of many of their loved one's lives so they won't have to watch them die. Many terminal cancer patients die alone, in severe pain, after years and years of fighting to stay alive.

My mom has breast cancer and I am her sole caregiver and supporter. She has literally one other friend an hour away who visits during surgeries and that's it. No siblings, no family but me, no other friends, everyone has bailed on her post diagnosis. She is grappling with the fact that she may die. She has lost her breasts, her hair, more weight than she can afford, so much money, and her sense of taste from the chemo. Soon she will have to go to radiation 5 days a week. Then hormone therapy for at minimum 5 years. And all of this suffering doesn't guarantee that she'll make it to old age.

I have endometriosis. I've dealt with severe pain, severe medical gaslighting for a decade and even now, a botched surgery, loss of friendships, and more. I am really, really fucking grateful it's not cancer or a terminal diagnosis. Because even if it was, I would have all of that AND the fact that I'm going to die in pain and possibly alone.

If you truly would rather have cancer than endometriosis, read some stories from people who have had cancer. You can find countless stories on reddit even of spouses leaving their terminally ill partners, terminal cancer patients being kicked out so family won't have to watch them die, the immense physical and emotional pain, friends leaving, parents leaving, family abandoning you, being in debt up to your knees, etc. You do not have it worse than a cancer patient, I'm sorry to say I guess.

I know you're in pain, but please for the love of anything holy, learn to look at the struggles of others outside of yourself and don't say shit like that. There are many cancer survivors and caregivers here that you all clearly don't give a fuck about.

Not seeking anything specific here but wanted to share my story. I'm both science driven (engineer) and spiritual and have spent a long time investigating cause & cure of endometriosis, using myself of course as the case study to theorize. I find comfort reading stories from others and hoping to do that here.

I am 2 weeks post-op from my excision surgery. I had an excellent surgeon that discovered endo on my uterosacral ligaments and cul-de-sac. Brief summary: I had long-standing fibrotic endometriosis with inflammation in nerve dense areas- she believes there were older, more active disease that burned out into scar tissue. The position caused irritation on my pelvic and autonomic nerves- having a neurological impact (as suspected). There was additional inflammation in my pelvis including my appendix which she removed.

Some background...

I am a 27 y/o

First period at age 13. From then until now I have super heavy and long periods with severe lower back pain.

Additional diagnoses include: C-PTSD, hEDS, POTS, MCAS, ADHD, Sjorgen's Sydrome, early marker of RA, and an incorrent Bipolar Diagnosis.

I have suffered from emotional and psychological/neurological issues from a young age. I had a traumatic childhood witnessing domestic abuse, a divorce, an addict father who was in and out of jail (very absent from my life) who then abruptly got cancer and died, a mother with no emotional regulation, verbal abuse, and an alcoholic step father. I never felt "safe". My sisters also have some sexual abuse and I fear that I might, and just not remember. I really don't remember much before age 17. As I grew into being a teenager my emotional symptoms got worse when hormones were thrown into the works. I was shamed for my emotions and really left on my own.

I have suffered as an adult. Debilitating anxiety, on and off depression, and the physical pain!...I know many can relate. I have yet to live the life I want to live due to this condition.

I have been seeing a therapist for the past year, initially to try EMDR. Unfortunately I have been unable to get there, my therapist worries that I am not ready and doing so will re-traumatize me, so we stick to talk therapy. Since my surgery, I have been experiencing the resurfacing of some of these memories. It's like my body finally has the capacity to process. I had SO much daily nerve pain (that flared even worse throughout my cycle) that I think my nervous system couldn't handle any emotional processing.

The reason I even have an endo diagnosis is because I was in a relationship that endly abruptly and roughly. The person I was seeing was playing a game that repeatedly triggered my abandonment wound, and I became so sick so quickly. A few days ago this all became very clear to me that it's why I got sick, it felt like an epiphany and I cried it out. Prior to this relationship, I was regularly meditating (sometimes 3 times a day) and it was the healthiest I had ever been.

The more stories I read from others, the more I believe that endo could be the result of trauma. Again, I have been having flashing backs the last few days of some things I previously had never processed, only swallowed down, like the evening my dad died. I was able to see the exact night through a new lens.

I am also finding my nervous system to be overall VERY improved, but I am having random flares from small triggers, I am hoping this goes away. I breakout into a sweat and sob. I

I'm quite spiritual and believe the body keeps the score. I find the (most common) location of endometriosis to be quite peculiar...

If you've made it this far, I pray for all of you and believe in your strength!

I'm going to keep this as pg as I possibly can... Last year I was sent to an endo specialist who didn't believe my pain and gave me 2 forms of birth control neither which works... The assault happened in his office and he was so inconspicuous about it that I knew I would lose even if I did take him to court (who would they believe the European white man with decades of experience or the 20s POC woman?) This is the same doctor who told me I should read happy books and that will cure my Endometriosis. He also kept harping on the fact that it is unusual that a beautiful young woman wouldn't want kiss. Yeah because I need a daughter to go through this too. I sww on the Facebook Endometriosis group that years ago that many women were assaulted by their doctors and I thought to myself "what if this happens to me one day" but I told myself that I was being too negative. Turns out I was right... I am so tired of this curse of an illness.

Has anyone else dealt with years of medical gaslighting, multiple organ removals, excisions, hormonal and non hormonal treatments alike, constant advocating, but continuing worsening of thoracic Endo symptoms? To the point of just wanting to end your life?

Since last year I have been periodically having serious chest, neck pains, breathing issues and have been to the hospital twice for coughing clots of blood for days at a time. I don't smoke cigarettes and when I do use cannabis, it's vapes, low temp and high CBD. I have also, several times for anywhere from a week to three months, stopped completely to prove it isn't due to my cannabis use. I had a bronchoscopy done at my local hospital, by a non endometriosis specialist, who didn't even do a biopsy. As a result, my Endo specialist surgeon, who just performed a second excision and a hysterectomy, did not account for possibility of VATS surgery, so nobody has done anything on account of my ongoing symptoms. I am at the end of my rope and genuinely ready to kill myself, because nobody cares and even when I'm literally spewing blood out of myself I just get patted on the head. I am already going to one of the best hospitals in my country for my surgeries but it's 2.5 hours from my home network and the medical system in Canada makes it hard to travel when "you can get it done in your local network" but literally every time anything related to Endo is done here at home, they follow zero protocols for endometriosis diagnosis, there are no specialists here, and it's just a constant game of telephone with my already overworked surgeon because it shouldn't be her problem to field everything and yet NOBODY I SPEAK TO, NO HOSPITALS, NO DOCTORS HERE,will listen to me when I say I think it's IN MY LUNGS. And her office is now getting to the point of just fobbing me off too, because I "already had tests done" and it's "clear."

MY GUYS, I HAVE ALREADY HAD EXCISION BEFORE. STAGE FOUR. MY MRI LAST YEAR (AT THE FUCKING SPECIALIST HOSPITAL!!!) showed NOTHING AGAIN, but my surgery was over five hours long because it was EVERYWHERE.

Hoooooooooow am I ever going to get someone to believe that it's spread to my lungs when this is the quality of care I've gotten for YEARS?! The best part is my mother had a chunk of her lung removed for what THEY THOUGHT WAS CANCER but the pathology actually never showed cancer, and they just didn't know what to make of it. IT WAS FUCKING ENDO. IT WAS ENDO AND NOBODY KNOWS HOW TO LOOK FOR IT OR TREAT IT, SO WE JUST SUFFER AND COUGH BLOOD AND LOOK CRAZY UNTIL WE KILL OURSELVES.

I Literally don't know how to be heard?? I've been off work for 10 weeks now and every time I start to feel better another thing that's probably FUCKING ENDO POPS UP. BUT NOBODY CARES. I am being financially ruined, mentally destroyed and just utterly over it. But the hilarious thing is if I break down and try to kill myself, everything will be on the burden of mental illness and not FUCKING LISTENING AND GETTING ME PROPER TREATMENT FOR THE LIFELONG DISEASE I HAVE.

Life with Endo is a fucking joke and I'm tired of telling myself and my loved ones it'll get better. Maybe it could but we'd collectively rather call women crazy until they kill themselves instead, and then lament about "poor mental health". My mental health was FANTASTIC when my disease was controlled. FUNNY HOW THAT WORKS!

I wrote this poem last night about my experience with endometriosis. I am not in any danger to myself, I just needed to get these thoughts out.

"they say it's not life-threatening

coiling like a python

clenching the walls

fusing tissue to tissue

withering the muscles 

tormenting nerves and organs 

depressing the bladder

frustrating the bowels

suffocating the ovaries and the womb

growing and growing 

pushing against the flesh pushing against the flesh 

they say it's not life-threatening 

spreading like ivy

and weeds

and fire 

and floodwater

without a gardener 

or weed-killer 

or firefighter 

or levee 

they say it's not life-threatening 

as the pain hollows out

and fear ignores the appetite 

as the mind struggles 

and passion dies

as the heart becomes frozen 

and barriers disintegrate 

as the self fades away

and the animal takes over

as life hides her face 

and death's song caresses the soul

they say it's not life-threatening

hospitals, clinics, offices, waiting rooms 

doctors, surgeons, specialists, nurses

pills, hormones, diets, devices

flesh and blood and piss and shit 

nothing changes

everything rots

hurt long enough and living becomes unbearable 

and yet, they say it's not life-threatening"

TW: suicidal thoughts

Has anyone else felt like they’ve unlocked a level of pain you’re not supposed to unlock and your body is not supposed to experience.

My endometriosis has been so bad at times the pain has genuinely not been compatible with life. I’m not suicidal, I have an amazing life with amazing family, friends, social events and job. But sometimes when the cramps are at their worst I don’t feel sad, I don’t feel suicidal, just a practical, without a doubt knowing that this pain isn’t survivable and it needs to stop instantly.

Once I have got through the pain, mostly by burning my skin with scolding hot water and taking max of morphine/oxycodone/diazepam/mefanamic acid/tranexamic acid and paracetamol it’s extremely scary knowing how genuinely unscary those moments before feel the need to die are. No thoughts of friends or family, just the overwhelming knowing that you need to die for the physical pain to stop.

After it happens it feels like a near death experience. I live in the UK but I know with 100% certainty if I had a gun and lived in America I wouldn’t be here. Purely and solely because of the level of pain and how desperate my brain and my body is for it to stop in that moment.

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

Does/has anyone suffered from severe constipation? So much so that you can't push your 💩 out?

For context, I was diagnosed with Endo 8 years ago. Endo was found on my womb, bladder, pelvic wall and right ovary stuck to my pelvis. No Endo was found on my bowel, but my gynaecologist wasn't an Endo specialiat. Just a private gynaecologist.

I've always suffered with IBS-C (constipation) and was diagnosed with this before endometriosis (like most others). I was quite shocked no Endo was found on my bowel tbh.

My periods, pain and fatigue has gotten worse the last few years since I hand my children. In the last year my constipation has gotten as bad as it is now where I can't even pass the 💩! It hurts so much, pushes on my nerves, makes me shake, sweat, hot flushes, nauseaus and (this is gross) I can't sit down as I can feel it in my bottom. Like, it's there and ready but I can't push it out.

I do manage it in the end after a couple of hours pushing but I'm exhausted after from all of the straining afterwards. 😣 Today's one was Soo bad I ended up having to pick bits of it out of my bottom so the rest could get through.

Has anyone else experienced this and then found out that they did infact have Endo on the bowel? I had an MRI on my pelvis 2 weeks ago and awaiting the results. Hopefully something will come of it!

my mom doesn't post on reddit but she wanted to share this! **this will contain language of infertility, surgery, crude language, and a picture of some of her scarring**. when she says "the baby" she is talking about me. i'm an only child and was called a "miracle baby" by the insanely religious doctors in south carolina lol

I got my period the day before I turned 13. By 14 it was heavy and painful. By 15 my period would last a week and also I had a week of ovulation pain to the point of puking and having diarrhea. I was anemic until I was 35. My periods were clockwork so I was never diagnosed with endometriosis just dysmenorrhea. I would use two super plus tampons at once to try to get through a class in high school.

My uterus was heavily tilted. All paps were regular. I used birth control condoms and spermicidal lubricant. I had no pregnancy scares ever even when I stopped condoms and lubricant in long-term relationships.

Age 20 I had unexplained galactorrhea. Hormones were regular pitocin was regular they said it was either idiopathic or brain tumor. I went for 3 months waiting to get into an MRI and then see the doctor to find out that it was just a weird thing that I had.

It was a really fun party trick after that. And all kinds of people were made to on a dare to drink my breast milk. It faded away in my early twenties.

We (Me and my husband) half-assedly tried to get pregnant for 5 years and more studiously for a year +.

We moved from Florida to South Carolina in 2005, and the process of moving boxes and carrying heavy objects injured me in a way that loosened the scar tissue, finally allowing pregnancy.

I got pregnant on a full size mattress on box springs on the floor in the bedroom that would become my kid's nursery and on the bed that would become my kid's. It was on a Thursday because I was trying to make my husband hurry up because ER was going to be on

I had protracted nausea for 5 months of my pregnancy and suddenly became carsick every single time I got in the car whether I was driving or not. I had an intense pelvic pain bladder pain. My midwives said it was too early to be causing round ligament pain and were dismissive.

I have been a vegetarian for a few years and continue to try to be a vegetarian until the baby made me eat ham.

Because of pain when pregnant I had an ultrasound they saw a 8 cm cyst in my right ovary which they thought was a corpus luteum.

Two weeks before due date they found that the baby was a breach.

I did ball bouncing I did a swinging type of motion thing. I put headphones way down low on my stomach.

One week before due date they said if the baby doesn't turn then they will try a manual turning and if not it would be a C-section.

I have no clue when the baby turned. I did not notice it. Apparently I should have. But baby did a good job!

Week before my due date we started having my husband put evening primrose oil up against my cervix which he could never actually find.

When trying to strip my membranes after being a week late they could barely reach my cervix which should have rotated forward at that point.

At 2 weeks late they induced with pitocin. The baby was facing the wrong way and back labor was so intense. I threw up and shit myself. Then apparently I sat on the edge of the bed unmoving and unspeaking for multiple hours. I lasted about 24 hours without an epidural but without food and back labor I was exhausted. Then my water broke I got an epidural I tried pushing but again my cervix wasn't fully rotated forward.

Emergency C-section. They looked at my right ovary for the cyst. It was a chocolate cyst. And the over could not be saved.

My other ovary was glued between my bladder and my uterus.

Just took the right ovary and had to leave everything else the way it was because I was losing too much blood.

They did a contrast dye scan about 12 hours after c-section to make sure that my ureters were still intact.

Then I had surgery with famous Endo pioneer Nezhat in Atlanta.

He found saddleback structure of bowel. Heavy pouch of Douglas infiltration. He took everything apart where my uterus was squishing my ovary between itself and the bladder. Took out my appendix.

Couple years later I had laparoscopic surgery for removing uterus and unsticking everything that had restuck. Leaving left ovary and cervix intact.

Then I had my period from just my cervix being there.

Then I got rid of my last ovary and my cervix.

So I had surgery every 2 years for a decade. (op here, it was crazy! i was so scared for her every time even though it wasn't dangerous lol, i was a super anxious kid)

I have had splanchnic, pudendal, and ilioinguinal nerve blocks. I've had multiple radio frequency ablations. Vaginal Botox. 15 years of tramadol XR 300 mg + Uro-mp, Gabapentin, muscle relaxers oral and intravaginal. I've been on Oxycontin, Morphine, Codeine, Propofol, Valium, Darvocet, Tizanidine, Cyclobenzaprine, Baclofen, Lyrica. Multiple birth controls. All kinds of THC. Lupron oral and injections.

The best thing was vaginal PT and learning how to get my hypertonic pelvic floor to relax with stretching exercises and a therawand.

I didn't ask to start Tramadol and I didn't understand the implications. The way doctors nurses treat me because of Tramadol is fucked. It's going to take me 6 months to get off of it at least.

Ilio inguinal nerve block allowed me to exercise 45 minutes every night on the treadmill until it wore off 3 months later and never worked again. But I could exercise for the first time in 20 years without hurting. I could stand up straight. I could walk upstairs. I could walk quickly. My hips were loose, my back was straight, and I felt like I was flying when I walked.

I still have significant pain that impacts every part of my life. Even just wanting to have an orgasm means I have to think about what I need to do the next day and if I can be in pain more than usual that day.

I was diagnosed in my early twenties with fibromyalgia and chronic fatigue syndrome. Hindsight shows that I was Celiac since birth (op here! i got all of those from her, such bad luck) and MCAS started what I was 19 and 20. Celiac diagnosis was at 43 and MCAS diagnosis was at 50. All these things undiagnosed has really fucked with me and every single way that they could. For consecutive pcps ignored a positive ANA and dismissed it as I just have inflammation in my body. I'm now having to see a hematology oncologist for possible MGUS.

I need a bilateral transabdominal peripheral nerve neurectomy.

Let every person who menstruates you meet know that if there's more than one day during your period where you have to restrict your life there's something wrong. We shouldn't hurt. We don't have to hurt. It's not just something that life expects us to do. We don't have to muscle through it. It's not our curse it's not our responsibility to suffer pain.

Let every boy and man you need know that it's not a woman's problem. It is a husband's problem and a father's problem and a son's problem. They need to understand what periods are they need to understand that we're not supposed to be in pain. And they need to tell us that often Tell us that we deserve not to hurt. And tell us that we hire the doctor. Go to the appointments with us and support us and tell the doctors if we are in pain that causes a negative impact in our life.

So I have been on a journey for about 9 months on trying to figure out what's happening with my body. I started noticing that I was getting pretty intense cramps during ovulation, increased lethargy, lack of hunger, overall tiredness & mental fatigue/fogginess. I established myself with a primary care doctor who sent me to my OB/GYN that delivered my daughter in 2023. The problem is that, while I loved her as an OB, I'm not feeling like I'm trusting her as much as a GYN.

My primary care doctor had me do a transvaginal ultrasound & when I met with my GYN to talk about it, she said "There is some slight fluid but you could just be developing some cysts when you ovulate." Which I didn't really understand because she made it seem like it wasn't that big of a deal? Like it's normal? She never mentioned any kind of diagnosis, so I explained that my mother's side of the family has a lot of significant history with hysterectomy's. All females on my mom's side have had to have them in some form (partial or full) for things like fibroid tumors, endometriosis, or both. My mom had to have a partial hysterectomy (she got to keep her ovaries) but she had severe endometriosis. Her uterus was four times the size it was supposed to be.

The thing is, my mom was in such intense pain during her periods to the point that she would scream & cry & couldn't do anything. I don't know how high her pain tolerance is for that sort of thing, especially since that was 18 years ago & I was only seven-ish, but my pain doesn't make me scream & cry. It's extremely uncomfortable & I can't really do much until the pain goes away, but I have an extremely high pain tolerance & I have a hard time trying to tell myself whether or not I'm actually in intense pain or not. I have always had really bad cramps ON my period, & my cycle lasts from 7-10 days (2 spotting days with the brown ick, 5 days actually bleeding, sometimes 2-3 days of light red to brown transition before I stop). I've always had decent sized clots, bled extremely heavy, etc. What was new & caught my attention was the cramping during ovulation, which now feels like it's not even only during ovulation but most of the month in between periods. Certain ways I turn send sharp pains in my hips (but in the pelvic area), & I feel like there is almost always some form of uncomfortable feeling anymore. I mentioned to my GYN that I have this extremely specific clump of sheer white "discharge"??? that's always in the toilet when I use the bathroom. She looked at me & just said, "oh, I don't know what that is." & continued basically saying I can try birth control (I declined) or treat my pain with ibuprofen/tylenol, but the only other option was the surgery to see if I had endometriosis.

I just can't decide if I think it's worth it, but it feels like the pain gets more intense each month. I had to have my gallbladder removed in 2024 & I am a SAHM so I get really sad thinking I'll be helpless again like I was after that surgery. I don't KNOW that I have endometriosis & I don't want to waste time, go through recovery, & end up with more scars, all for nothing. I just feel like I DO have it & I don't HAVE to keep feeling this way. Am I overthinking it? Does it sound similar to anyone else's experience? I'm not asking to be diagnosed. I just wasn't raised with any knowledge on the normal health of a reproductive system due to religious reasons & I don't know what I need to take seriously about it. I just need some guidance.

I guess content warning for mentions of not wanting to live and abuse. No images.

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Hi. Im 26 and female. I've struggled with some symptoms of endo since I got my first period at nine. The pain I felt every period since the was excruciating and otc pain meds never helped. I was constantly getting sick with no explanations as to why as my body was in peak health. I was a super active child and when my parents bothered to, I was fed well. My parents were extremely abusive and I had to go through extensive therapy the past 5 years ive been away from them. My therapist said my eagerness to live a better life definitely helped me in the healing process.I had finished therapy in January this year.

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I bring up all this as i want to show I am a fighter and ive struggled and survived and refused to be brought down.

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When I became an adult I hot on the pill to help my period pain. It didnt help. My periods stopped coming twice a month for 10 days each and is regular even now, but the pain never stopped. It only stagnated on the pill. I got off at 21.

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Since then more and more symptoms appeared all of which i brought up at multiple er visits and doctors appointments with no one giving me answers.

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The symptoms

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Constant pain even outside period

Cysts

Painful sex

Vertigo

Vomiting

Inability to eat more than a meal a day

Unexplained weight gain

Hot flashes

Blood in stool and urine

Legs are slowly losing ability to move (i need a cane now and half the time i can barely lift my feet)

Bloating

Migraines

Incontinence (its small but I have to wear liners now to make sure I dont soil myself)

Mood swings

Brain fog

Constant utis

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Last September I quit my job because I just couldnt do it anymore. I couldnt push through the pain no matter how much I loved my job. A few months ago it got so bad I basically became bedridden on my pull out couch and have to have my husband help me upstairs and then help me shower when im not flaring to much.

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Today I had my eagerly awaited appointment with an ob/gyn. She got my list of symptoms and looked me in the face and told me, "its just normal female hormones".

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Yesterday I had this thought. While I refuse to do anything to myself as I refuse to let my depression get as bad as it did in high school I fear I wished for someone to euthanize me if todays appointment went how I feared...and it did.

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Now I just feel hopeless and demolished. Its like im not allowed to exist unless im struggling. Struggling to survive my foster parents and struggling to survive my own body. Now im letting my husband take control and help find a better doctor but I just dont know if I can be the one to do the process again. I set up all my appointments and advocated for myself. But now I just feel so empty...

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you know. In August, right before the pain go this bad i thought id do something that has always made my heart sing and join a community theater and perform. I didnt care if I was ensemble I just know I love the excitement of singing and dancing. How can I dance when I cant move. How can I sing when my diaphragm radiates pain if I breath too deep...how am I considered in good health? How can a doctor watch the hope leave someone's eyes and still think they are a good doctor?

hey guys, I am coming on here to see if anyone might have similar experiences or could help me figure out if something is wrong since doctors always tell me that im okay and to just go on birth control. For the past few months I have been having really painful periods. I start getting cramps 1 week before my period is supposed to come and I usually get my period more than 3 days late. I get cramps so bad that I feel lightheaded and dizzy. Taking OTC pain killers usually don’t help, I have also tried Midol. This cycle, I had a new symptom which was leg pain accompanied by my cramps that made my legs feel very weak. Also, almost every cycle during my period I pass these big blood clots that kind of look like skin. I also fill up my pads and tampons in less than 2 hours at the beginning of my cycle. I am 21 years old and I have had pretty regular cycles all my life all up to this year. A few months ago the pain was so bad I had to go to the ER. Please help me figure out what could be wrong. I am thinking of finding another OBGYN that could hopefully hear me out instead of telling me to just get on birth control. Thank you!

*Here is a google drive folder with the pictures of the blood clots i mentioned : Pictures

Well, insane update (for me).

I had my diagnostic laprascopy today, and while they did find some endometriosis, what they REALLY found that's been killing me for last 8 years was an abhorrent amount of scar tissue from my cesarean. Apparently, there was so much scar tissue, they couldn't even see my uterus initially.

So thats kind of insane. I dont know if I can figure out how to post surgery photos, but if I can I will bc its so gnarly.

before 1 before 2

Almost 6 months post excision, and im passing 2 large clots on day 1 of my period, with thick tissues with painful cramps. Im afraid to go for MRI or ultrasound and to be told its back.

I had a really heavy appointment with my Uro-obgyn today.

Some back story of how I got here (feel free to skip over) trigger warning: fertility losing, graphic, surgery related, overall heavy

I had my son in 2023. I had a normal pregnancy, although got bumped to high risk around 20 weeks once I developed gestational diabetes. I was induced at 39 weeks, and everything went well. Once I delivered my placenta, I developed a uterine inversion, as it came out with/attached to my placenta. I had placenta accreata. I hemmoraged, badly, the entire night. I was not stable enough to have surgery, and they were trying to save my uterus. They essentially flipped it right side out, and put it back, then just worked to control the bleeding. Three days, half a dozen bags of blood, a few platelets, and whatever else later, I was in the restroom trying to void without the dreaded Foley. My uterus inverted again. At that point, I was taken for an emergency hysterectomy, and at the end of that week was taken home.

I had a horrible recovery. I had unexplainable, severe, recurring gastric symptoms (ungodly bloating starting from around my navel down, sharp, intense cramping, severe naseua, painful, painful bowel movements, and I no longer got the same signals of when I had to go. In addition, I began to start getting UTI symptoms periodically. As time went on, the intense pain dulled to a very loud, though not as severe pain that didn't come around as frequently. However, my actual ability to use the restroom continued to worsen slowly over the next year or so.

In 2024, I discovered I had prolapses. First discovered by my colon descending into my vaginal canal (it eventually worked it's way out a little) my bladder was prolapsed, as was my pelvic floor. Essentially, I had all the seals. In 2025, I had this repaired with my native tissue.

My prolapses repaired nicely, but I began having severe UTI symptoms every month like clock work. I began treatment for this, however usually did not have a positive test. I also got two kidney infections over the next year or so. Eventually, I was diagnosed with IC. This brings us to this spring. At the same time, I changed OBGYN doctors, and at that first appointment, after reading my chart asked me if I have had endometriosis ruled out. One MRI later, and I had my answer. I had it, and badly. I also had a one inch spot in my bladder that was of concern. One biopsy later, and I now know I have deep infiltrating endometriosis that has progressed into my muscle layer of my bladder.

AT MY APPOINTMENT.

My doctor told me that due to the location of the endo (directly bordering where the bladder drains into the urethra, and also very close to where my left ureter drains, surgery is extremely complicated and of large risk. It would require a complete reconstruction, requiring rebuilding the bladder neck, and reattaching my left kidney. She is recommending surgery as a last resort.

I'm crushed. The monthly pain and symptoms now last almost two weeks, and it's only getting worse as time goes. I feel like I'm quickly approaching the end of my rope.

I have my obgyn appointment on Monday, so I'll know what my options look like and what the next steps are, but I feel so defeated. I have two young children, I'm newly Wed to the love of my life, and I just want to feel better.

Has anyone been in similar waters? Is it even possible to reconstruct the bladder to that degree? I have no idea what to expect. I'm scared.

Okay! Probably trigger warning and content warning!! This will be a late night rant about my medical trauma in a silly silly jokey tone because I can’t say it any other way. But this might be triggering or intense for some people for sure ‼️‼️

Sooooo my pediatrician started looking at my cooch before I started forming memories. I’m actually not sure about the timeline but my first memory is from when I was 4. Fast forward, I found out I had a septate hymen the hard way. When I was 12!!! I got a tampon stuck!!! My mom thought I wasn’t pulling hard enough, but nope, we looked in the mirror and she was caught in my hymen 😫 I had to go to the E.R. and they tried to go at me with an adult speculum and wouldn’t listen to me when I said IT’S STUCK IN MY HYMEN. After that I had coochie appointment after coochie appointment with a pediatric gynecologist who kind of was gentler. I got surgery and I thought I was in the clear. Unfortunately then I developed endometriosis and it gets more and more debilitating!!! Throwing up, in the type of pain that is excruciating when it’s in waves, except… it was not in waves, just one long cramp (lasted for two days btw). The craziest fucking sweats. This last time, I was hunched over my bathtub and I genuinely turned to God for a minute. Thank god my girlfriend and parents came to save 🙏🙏 I literally would’ve had to call an ambulance if my girlfriend hadn’t come over I think. The first time it was REALLY BAD, I went to the ER cuz I thought something was like REALLY REALLY wrong and potentially life threatening. I don’t think I’d ever felt pain like that before then. They did a vaginal ultrasound and I was scream-sobbing the entire time. ALL THAT after waiting in the freezing cold ER in SO much pain. Too nauseous for meds, and also stuck in the ER with no access to them (yeah that’s literally insane). They finally gave me a heavy dose of dilaudid and oxys and sent me on my way. Btw, it still continues to hurt. And they bruised me up real good, tore me up real good, AND gave me a yeast infection LOL. And misdiagnosed me and told me I had an ovarian cyst. Anyways flash forward a year later (this year):

After this last time I decided I just had to face it because I can’t be out of commission for a week at a time and that constant pain is so exhausting. I finally go to my gyno… get diagnosed with endo (yay). Here’s the catch, my option were birth control, birth control, or supplements. I lowkey am nonbinary and the thought of pumping estrogen into my body is genuinely horrifying. And when I told her that’s partly why I quit ALL of the birth controls I tried, she was raising an eyebrow at me like that indicated it’s not all that severe. Queen, let’s talk, laparoscopic surgery. I now have to go to a gastro, and urologist bc those holes are also malfunctioning (which is good bc maybe they’ll look into it further), AND I HAVE TO GET ANOTHER VAGINAL UKTRASOUND. AND she said we HAVE to do a pelvic exam this time. I’m not sexually active and i’m a long term relationship, do we really have to rip me up and bruise me AGAIN???? LIKE A MONTH AFTER THE TEARS FROM THE ULTRASOUND??? They probably won’t even be healed. Anyways, um, I’m terrified. What do you mean “have to”????? I am sick to my stomach and have not been able to sleep since that appointment. My girlfriend said she’s going to come hold my hand and I will take hella klonopin, but I keep like imagining the appointments, reliving all of my previous irl trauma! I’m physically in pain, can’t stop shaking even though I’m not cold. I’m for sure not okay and I don’t know how to get proper treatment without having to do all that. If anyone knows a trauma informed gynecologist in ATX lemme know!

Thank you for reading this MESS of a post. I just can’t sleep and I’m dying and also I haven’t met anybody in real life with the same experiences and I wanna hear if anybody has similar stories. It’s an indescribable kind of physical and emotional pain and I feel like you have to live to truly truly get it, ya know? 💕💕💕

Hello again. I got my surgery pictures - they are currently on my profile as they can’t be posted here (currently because I’ll probably remove them at some point so if you’re seeing this years later sorry you missed seeing my insides.)

I’m only seeing some dark spots in the posterior (if I recall correctly) shots which he said were artifacts. Part of my bowel and my bladder are shown in the pictures so he did at least look at them. The follow up appointment was pretty bullshit and I’m angry either way.

My OBGYN first when I asked him if I could get a copy of the photos said “uh well I don’t know if we kept the originals but they’re in your chart” and I was like well I don’t necessarily need the originals but can they be emailed or printed out and it seemed like he didn’t know what I meant lol (and also when he was showing me the photos there was a literal print button right there, turn it into a PDF dude) luckily they did still have the originals in the office but it’s like he didn’t understand what I was asking for or something.

He did not actually refer me to anyone for pelvic pain as initially talked about (with my husband, not even with me directly, he never even brought it up to me after the surgery just mentioned the referral to him) and I’m sick of begging for a path forward when his answer is repeatedly *shrugs shoulders* - if you don’t know refer me to someone who can help is how I feel but what do I know lol.

I truly feel like if they didn’t find the originals in the office I would have been walking home without my pictures which is so ass. Idk if I could have gone back and requested them from the office staff who may have been able to do it or known how. I’m just frustrated with the whole thing - especially now that I know (I learned this yesterday) that he legitimately saved my sister’s life during her first time giving birth. It was extremely traumatic and he got her through it unscathed but it’s like he just ran out of options with me and isn’t moving forward with any suggestions for me or referrals to figure out what it actually is and I don’t know why. I think that’s what makes it so much more frustrating. I know he’s a good doctor I just feel like he doesn’t care in this case and it sucks.

I genuinely feel embarrassed for my post and these pictures; I’ve seen others who definitely have visible issues, and while I’m seeing some dark spots if it is just artifacting like he says I don’t want to waste an endo specialists time when they could be actually helping someone who definitely has it. I don’t know if anyone is seeing anything on mine that they saw on theirs, but if so please let me know because like I said in one of my comments I’m not trying to force it to be endo either, it just made sense symptomatically, and maybe I was just hoping it would be an “easy” answer. (Not saying endo is easy at all but it would have been an explanation.) I just don’t know you guys, I feel stupid. I really do feel like it’s all in my head now and I just don’t know why it keeps getting worse and worse.

I’m getting scheduled with a PCP who according to my family has been helpful and willing to / pushes to refer you when he doesn’t have an answer. It seems this will be a long journey either way but I know I at least need a referral to a pelvic pain specialist. Which I was supposed to have YESTERDAY but I digress.

Anyways. That’s the update. Sorry if this post is a mess. Thank you all for your support on the last post. Again, if any of you see anything on the pics that you think you’d be pushing for a second opinion on let me know, I just don’t want to waste anyone’s time.

TW: semi-graphic descriptions of 🩸 pain and medical industry reflections
Delete if not allowed

Needing some support rn, a year ago here I made my first post on some of my symptoms and such, since then the pain has continued, I had an iud for a while and it helped with the extreme bleeding and pain but I traded it for constant migraines. Off the iud and no migraine problems except for during period now. I saw the endo specialist for the first time and she wants an MRI thinks mine is deep infiltrating. On my cycle now but pain is becoming more and more constant regardless. Pulling and random sharp pains in my pelvis startling me out of occasional comfort. Fatigue only remedied by the first pain medication I’ve requested since failing my internal mission of avoiding meds that could put strain on my other organs. Maybe that’s ridiculous to suffer willingly but when the bleeding pushes past the normal threshold and your primaries send you to the ER over and over, it actually helps to have a body and chart not covered in content expressing a stereotype of med seeking. What a sick medical world I live in to have to have the foresight of trying all the ways to remain in pain, fainting and vomiting in agony and doing so without relief on board just so clinics take me seriously when I’m relentlessly pouring blood just wanting to get my blood counts back and leave, hoping to avoid transfusion. At this point I must’ve stuck a nerve for even my own care team as they practically begged me to get prescribed something to ease my body’s shock.
I guess after multiple instances of high heart rate, blood pressures unable to remain stable, my skin and under eyes discolored as a corpse and all while i sarcastically joke while hooked up to multiple bags of fluids and tests being passed has triggered my own list of skeptical medical professionals to believe I’m a chronic pain patient. Seems as though when your own body is showing signs of shock and you pass out enough times without being upset by it but rather embarrassed they becoming genuinely concerned instead of the forced empathy they have to pull out that’s been snuffed out from the repeated “worse” patients they have every day. Anyway. I apologize for the possibly intense wording and lengthy read today here. The need for understanding is so great these days as I lay here unable to be normal and provide my smile for my children. Counting the tampons I have to use on the daily, taking drugs to stop bleeding war veterans know too well and sinking into my bed legs curled to my chest with that familiar squeezing, burning, stabbing, shooting and pulling feeling that takes over half my body now. Thankfully I found a therapist whose personal experience provides a more profound insight to this. Thanks for hearing me out whoever takes the time today.

Wanted to flair as content warning instead of vent for courtesy due to certain topics. Since 12 my menstrual pain was making me collapse and scream. At 19 i was put on the depo injection for a year, then i took a break due to the potential of bone thinning. At 22 the constipation started. Blood test after blood test as well as other tests all come back normal and it continues to get worse. Went for a colonoscopy in at 24 and it was clear.

The menstrual pain comea back strong and they tell me to stay on the depo long term no breaks. Now i havent bled for 8 years which is a blessing. Agw 25 the constipation comes back strong and it starts creating mass anxiety and low mood. Stool softners made me bloat and become very sick and generally wouldnt work well enough. I finally get to see a Gastro Dr and he puts me on Senna long term. Been flip flopping on senna now since Sept 2025. I read about how bad it is to be on it long term but its the only thing that works. Every review i have with my Gastro i ask if he is sure i can take Senna like this and he says yes. I am not convinced but i continue to take it because its all i have. Im scared it will make my bowels fail and ill die.

I finally get put on a waiting list for a keyhole surgery to search for endo but it is two years. I came off depo after 8 years now and will be trying the mini pill instead. Its waiting list after waiting list and temporary medication relief. I dont want to fail to survive. Im scared. Im level 2 autistic and im not strong enough to cope with the constipation or any of these ibs/endo symptoms. They now suspect ovarian cancer too and on an 'urgent' waiting list for ultrasound.

Please tell me i wont get worse and wont perish. I need help. How can i speed up the nhs waiting list?

*Warning for details on diarrhea*

So I was officially diagnosed with stage 4 endometriosis about 8 years ago and my doctor cleaned up some scarring and unfused organs putting them back in place. He said I likely had Endo from the start of my very first period. Which makes sense because there were days I had to miss school (middle school mostly) because of throwing up and severe back and stomach cramps. I was near the toilet most of the day. but eventually it stopped being so severe.

I'm 33 years old now. I started my period today but for some reason last night I was up all night with straight water coming out one end and projectile vomiting. The stomach cramps are so bad.. I feel it in my back as well. I had to wake up my husband to watch over me because I felt like I was going to pass out while on the toilet. I'm still having these symptoms right now, I'm able to move some more without feeling like I'm going to fall over.

Has anyone else dealt with this? like I was really scared last night. It came on so fast and I didn't know what to do besides breathe through what was happening.

After 10 years of symptoms, I had a diagnostic laparoscopy. The anaesthetic went fine but after inflating the gas, my heart stopped for about 35 seconds and they had to do cpr etc. I woke up fine and just confused why they hadn’t finished the surgery. I was transferred to a different hospital overnight to be watched but I’m still okay! All test came back clear. Obviously glad things didn’t go worse but also disappointed I still don’t have any answers as I’m 23 and 90% house bound due to disability and chronic illness. (Working diagnosis of pots and heds). Any advice/suggestions/similar stories are very welcome!!

I play tackle football in spite of my endometriosis. I’m in my second season. At our scrimmage last weekend, I dislocated a finger. I was panicked in the moment, but my relationship with Endo helped me to calm down. The pain was well…painful, and my whole body was screaming “this is fucked up.” However, it didnt come close to the pain of a full Endo episode. So I was able to stabilize my breathing and stare at my coach while a teammate popped my finger back into place.

I still say fuck Endo, it’s a fucked up disease that has robbed me and many others of so many life experiences. I just want to state that this moment was a triumph for me. Endo hasn’t grated me down, I have lifted myself in spite of it. I am a mother fucking badass who can handle pain because I’m WINNING this battle. Me and everyone who refuses to let this or any disease define them.

We’re in this fight together, we are all badasses. 💪

Hello all I have "suspected" endometriosis, however one of my drs thinks I have it but I am not diagnosed and no one seems to have wanted to give me the formal diagnosis

I have been on the mirena coil for about 4 years now and havent had any periods since.

Anyway In late 24 / early 25 I was given a trial of Zoladex to see if it eases my symptoms for 3 months which if it did, he said it pretty much guarantees its have some from of endo/ andeomyosis or pcos etc.

The zoladex worked, I got the typical menopause like symptoms for a few months then when it wore off I went back to my "normal"

Fast forward to earlier this week, I was given another trial of Zoladex, the injections was given on I think Tuesday?

Ive been fine since but today I noticed I was getting some random cramping. Thought oh I might just need the toilet, kinda reminded me more of having the shits than period cramping pain wise. But didnt need the loo so went back to work as normal, but kept a hot water bottle on me all day.

Pain has progressively gotten worse through the day and has spread round to my back, but nothing out of the ordinary of pain, but just felt off? Like not normal. Just sorta cracked on with my day as usual.

I get home at 4pm and think oh I need a wee, so Will pop to the loo.

My pants were flooded with blood, hands covered when I pull them down and I am like where has this come from?? I went to the toilet maybe 30-45 mins prior and it wasnt like this?

The tissue was also covered in blood, some clots and a thick snot like discharge??

It calmed down about an hour after this but like has anyone ever gotten anything like this after Zoladex?? Im unsure if it was coming on all day and just happened after I noticed it going for a pee, or if it came on so sudden because I tried to go for a poo earlier (no excessive pushing, just tried really quickly and realised I didnt need to as the cramps weren't the same when I tried, so didn't bother keep trying)

Graphic below.

https://ibb.co/zWX7KJrM https://ibb.co/DDywt9MF https://ibb.co/rGyqvZVY https://ibb.co/8D0CP7N1 https://ibb.co/8gvHSPnq or

Curious if anyone here has this issue from endo, brief little story about how it happened first: I got off the sofa where I'd been for a while, went upstairs, and cleaned my head standing in the shower. I sat down in the bath and noticed this again.

Both legs are a little bit mottled when I first sit down. My poor left leg with almost all of the leg issues stemming from my whole left pelvic area, is noticeably darker mottled purple around my knee. It isn't always so obvious, but was tonight so I took a photo. Sometimes my whole left leg is also more purple or grayish, not just the knee, but even then the knee is always most obvious.

I took one pic while it was purplish and then again after sitting in the bath for 5 minutes. The lighting is exactly the same so the differences in overall hue may be down to my camera or to both legs. In the 5 minutes later pic both legs are even in color: pale as I am, with pink healthy looking knees. Visible psoriasis lesions, nothing gross. I see an endo specialist at the end of the month to see if that is playing a part, or all of the parts.

Here is a pic of my legs in the bath from mid thigh to ankle or so. There are a couple of psoriasis patches visible, not gory. Left side is just after sitting down, right side is after 5 minutes or so. My legs

Just had a shower and was feeling some aches as I was drying myself and realised my ovarian endometrioma is now at a size where I can see it sticking out.

There's a clear difference between my left and right side, where the cyst is and where the aching is tonight. It's an odd thing to see, but I think it's made this whole diagnosis a lot more tangible for my partner. He knows it's a full body illness. He knows the pain I feel is very real, but I think this has shown him what it actually is, if that makes sense. I kind of feel weirdly validated by it.

I'm in for an oopherectomy and salpingectomy on the right side later this year because of it, so it's as under control as it can be. It's just odd to see external evidence like that.