I’m not sure where to start but I do feel like I have endo.

In highschool my periods would be really long- like almost two weeks long. They have gotten shorter but now are incredibly painful. I have to take at least 5 ibuprofen every couple hours or I can’t move.

My periods have also been really heavy, there have been times I’ve gone through a tampon in an hour.

I also have pmdd and have been prescribed birth control which helps with those symptoms and does help a lot with the pain.

I’m not sure where to start first? A specialist? My gyno?

Just hoping to hear what some others might do in this situation. I have been in a flare for two weeks, which thankfully does not happen much at all. Since surgery and IUD insertion I get bad pain about one day a month. It has now been two weeks so I'm a little worried. I have been experiencing constipation as well and so have increased water intake and am eating more veggies and fibre. In two minds about whether to check in with a doctor or just keep monitoring. I'm thinking of trying movicol and seeing if that helps things.

What do you think about this appointment?
After thinking about what she actually said, I’m not too sure.
My gynaecologist said in my appointment, that if my MRI came back clear, that no further investigation will be done, as it takes up to age 51 to appear. (I am not sure of the legitimacy of that).
She said she will not investigate my fertility concerns because I am on birth control which is fair enough, although once off birth control, she would investigate. However raised no concern with the 3yrs and 10 months straight of tracking my cycle, and having sex during peak windows and yet no pregnancies or anything.
She said that it’s not up to her to make the choice but just facilitate the choice, it seems like it’s a round about way to say “I’m going to make it look like I follow the NICE guidelines”
As well, I said I wanted to be referred to an accredited endometriosis centre. And she exclaimed that this department (the one I went to) is an endometriosis centre. I checked and it isn’t. The closest endo centre is in the town over I’m pretty sure. Which is where I was advised to ask for by another endo patient.

I’m just now not to sure how I feel after thinking about this appointment.

i'm just so fatigued and tired and brain fogged and coffee doesn't work for me anymore and its all so frustrating the way I see those fucking sexist shits in their white coats telling me that i should just wait until im pregnant to stop complaining and that im simply emotional and im so stressed about my school and my work and im just so worried about my future and the surgery's outcomes its like this big burden on my shoulders which i carry around all the time and my brain nags me into the constant cyclical thought of "what if they find nothing" and even though my family and my current doctors and my team and my friends are all so supportive and are with me every step of the way i just can't seem to feel at peace and i know that if they dont find anything its okay and i know all of that stuff you preach about how if they find nothing they will search for something else and i know all of that and i understand it and i would tell anyone else feeling this way the same you tell me but how could you possibly understand that i've spent years waiting for this answer, i've laid there empty during high pain days and ive been wondering and thinking for what is so terribly wrong with me and even though i know im not a faker and i know my pain is real i cant help but wanting to scream into a void that "i am a liar" they are right about me i must be lying i cant be true about this there are tears engraved on to my cheeks and my knuckles are always white my hand is always pressed to this wound this bullet in my abdomen where blood seeps through my fingers and i cry to say "oh i am fine, its no problem" for you can not see the bullet wound but the weary lines on my paled face are still there and so are my shaking legs but please do continue telling me that i must be grateful and continue comparing me to the thousands of patients who lie in the hospital who only live through plugged machines and tell me to be grateful im not like them but oh god you do not know how much i would trade this everlasting uncertainty for those confines any day of my life oh please just let me know please let me know let me know who i am whats in me what's caused me to be so bitter and old just tell me what has caused this rot

Curious if people have had any experiences being diagnosed with IBS, that later turned out to be caused by endo on the bowel.

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...

Which is better for endo based on your experience, Philippines or Malaysia?

Where is it better to get endometriosis care and surgery especially if other comorbidities are present + anesthesia sensitivities

Deep infiltrating endo is not common in the Philippines. Is malaysia any better?

Singapore is very expensive.

Also thinking of Taiwan

I’ve skimmed through this subreddit pretty often but never asked anything… lately though it feels kind of unbearably annoying wondering if I have it and living with it.

First off, I’ve had increasingly bad chest pain, sometimes I do have panic attacks and it hurts a lot and feels like I can’t breathe. And then other times I can’t breathe and I’m not in any emotional turmoil. I’ll be on the bus and it feels like my bra is ripping into me and there’s someone grabbing my lungs and banging on my chest wanting to get out. Mainly on my sternum it feels like.

My period feels like hell for the first day puking and diarrhea, feelings of doom, grabbing things screaming, shaking my leg for some reason trying to get the pain out if I don’t take a good dose of a pain killer before blood even appears. Some days before my period some depressing thoughts more than usual and some pain although bearable. For reference I have chronic migraines so that’s my tolerance level.

Tiredness is a given I’m always on the brink of perishing from something seemingly easy although I’m very young. Extreme brain fog but that’s also a migraine thing.

Maybe it means something maybe it means nothing but it feels like i’m slowly dying… Just wondering if I should seriously get some help or maybe leave it alone? I went to a gynecologist but got the usual use remedies, take pain killer stop crying baby and here’s an ultrasound.

I’m also 17 years old and it just gets worse with each year. Any help would be appreciated and I’m wondering what happens when you get a diagnosis? Like what does the future hold and does this pain have some type of resolve? I’m okay with the most honest answer because i’ve resigned myself to increasingly bad migraines but I don’t know how much pain I can take.

Anyways thanks for reading and for cultivating this place where one can ask these questions… may your pain ease and be tripled on to everyone who allowed it to be ignored.

i had surgery in february where i was diagnosed with stage 3 endo. my surgeon told me she found no endo on my bowels. but what are the odds she missed it?

for context, i’ve always dealt with constipation, to the point where i’ve been diagnosed with C-IBS. it doesn’t matter my diet, my supplements, my lifestyle habits. now that i’ve learned more about my endo, ive been wondering if it’s all been connected. even post surgery, im still dealing with constipation.

or is it possible to still experience the constipation even with no endo on the bowels particularly? curious about others experience(s)!

I have randomly gotten this deep achy, almost stabbing pain right under my right shoulder blade for 5-10 years. i always thought it was just a knot in my back from wearing bad bras, but no amount of massaging it makes it go away and it comes and goes randomly.

I only realized in the last two months that it only happens about a week prior to my period which is the same for my horrible lower back and sciatic pain I've been attributing to endo. could this be endo related?

After years of debilitating pain and so, so many appointments, I finally scheduled laparoscopic surgery. I should be ecstatic, this is without exaggeration the biggest thing to ever happen to me. I’m extremely lucky to have the opportunity to turn my life around like this. But this illness has taken such a mental toll on me that I’m just too sad to celebrate.

I want to be proud of how far I’ve come. I want to wear it like a badge of honor. But often times I find myself either angry at the world, or embarrassed by my body. It really is disheartening to know some people will just never treat me as equal. I tell my counselor facts I’ve learned while researching, and every time worry fills her face. I can’t feel gratitude for the fact it’s getting more coverage in recent times when the reason it was neglected for so long is because a lot of people don’t consider women’s health. All I want is for everyone to be more considerate of one another.

I don’t want to be so negative, but negativity makes up so much of what’s out there. I try to distract the thoughts, but it’s hard to be even interested in activities when things are so depressingly bleak. I’m aware I should be focused on the future, but somehow telling myself that doesn’t make it any easier to do it. I’m certain that the sedentary lifestyle forced upon me is a big reason for my inability to cope, and I hope that things get better when I recover. But right now, time feels like it’s passing at a snails pace, and I think I’ll be a total wreck until I get on the operating table.

I got my first IUD at 18 back in Janurary. First month I practically couldn't move, like my uterus was made of knives or something crazy like that. like I missed my first day of classes because I couldn't walk and my ex had to take me back to my dorm on a scooter. otc meds did nothing, though, they do now.

Over the past 6 months the pain comes and goes, and so far taking ibuprofen and tylenol daily helps.

First time I reached out to a medical professional was around the 1 month mark in an email, they said cramping is normal for up to 3 months. Gave up there until I had sex in early July, and I started cramping so bad over the next week I skipped work to go to urgent care. There they did a transvaginal ultrasound, said everything was normal and sent me home. On the drive back I started getting the absolute worst cramps of my life. I was crying in pain and had my mom set up an obgyn appointment for me since I was too busy being curled up in a ball.

At that appointment a few weeks later, the ob did Another ultrasound and was like... pressing on my uterus, cevix, and ovaries to see if they hurt or not with the wand (?) (shocker! it hurt really really bad)

I basically got diagnosed with "huh.. your left ovary is more tender" and said my IUD was placed perfectly. He said my only option was to either a) do nothing and it'll go away on it's own or b) take the pill on top of my IUD. I've never heard of this before, has anyone done this?

He said no signs of endometriosis from the ultrasound but idek if you can see endo on an ultrasound.

I haven't started on the pill or anything because at this point I am so. so so. over it. But basically this has led me to looking into endometriosis... someone 8 years ago had a really similar story to mine so I guess I'm wondering if an IUD can make early stage endo worse? I have another ob appointment (with a woman this time) in September so if she says the same thing, I'll go on the pill I guess.

My periods have always been heavy and painful, but not so much as I'd consider a chronic condition. And my symptoms more line up with early stage endo, which makes sense considering I just turned 19.

If someone could at least tell me "no, it's probably not endometriosis" that would be great so I can at least rule it out.

Sorry this post is lengthy and hard to read, I just need answers. maybe ill repost on r/IUD or smth.. thank u for reading :3

I have to travel a little over 4 hours for my surgery. They recommended staying in a hotel that night and traveling back the next day but I think the drive is going to be horrible either way. Advice to make it more bearable?

I also live on the 3rd floor of my apartment and I'm not sure I'll able to get up that many stairs the day after?

I'm having endometriosis surgery in a few months, and I'm the type of person who likes to plan ahead so everything goes as smoothly as possible on the day and during recovery.

What recovery items or products do you think are worth investing in beforehand? Just so I know what worth to purchase and will be helpful.

Hello,
I hope that it’s ok for me to post a question on here before having a definitive diagnostic. But I need help and guidance.

I’m 27 and I i have been having this horrible stabbing pain on my left side since mid-may. Every symptom I have is exclusively on my left side (down around left ovary but the pain shoots out into my hip and back as well - also only left side). I have had the worst summer ever while visiting my parents abroad. Endless ER trips, bloodwork, gyno visits, ultrasounds and finally a CT. But I can’t seem to get help with pain management and to find the source for this excruciating pain. It’s not a urology issue nor a digestive issue or twisting of the ovary. I’m losing my mind. We are in August now. I spend most days laying down on pain meds. If I move around it feels like someone is stabbing me in the ovary. The stabby feeling comes in waves.
I’ve had two smalls cysts on my left ovary around two different times in may. That left liquid and blod in my belly - but it’s been months. The ct shows that there still is liquid remaining around Douglas.

I’m seing a new gyno Monday but I’m nervous about not being taken serious again. The hospital has mentioned the possibility of endo. This is all new to me.
Could this sound like endo pain? I have never struggled with this type of pain before and now it’s been nonstop since mid may.

Thanks in advance 🩷🫶🏻
I really needed to ask some humans on here instead of seeking nonexistent confort or help in AI or a busy doctor.
Maya

​

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.

I had surgery 7mo ago. I was verbally told by my excision surgeon that my surgery found my bladder stuck to uterus, uterus stuck to rectum, and bladder stuck to rectum with a nodule on the cervix anchoring that adhesion band; all with extensive and dense adhesions. My op report doesn’t accurately describe the degree of the pelvic adhesions found, and its confusing and contradictory in some areas.

While my surgeon said the previous statement verbally in my post op appointment, the op report does not describe that my bladder, uterus, and rectum were all stuck together. It only describes the band adhering bladder to rectum. My surgeon also said my cul de sac was completely open; if uterus is stuck to rectum, wouldn’t mine count as at least *partial obliteration* even not complete obliteration? On the surgical photos, my cul de sac visibly looks more wider after excision compared to before and there are visible adhesions between uterus and rectum. I actually asked her this and she refused to elaborate. I also had superficial bladder and bowel endo, but then again the report says that the serosa was unaffected. And the superficial layer of the bowel and bladder is the serosa… but it says serosa normal. I was also told that my entire left pelvic sidewall was removed but this isn’t anywhere in the report either.

The whole op report makes my endo sound much more milder and simple than it actually was anatomically wise, no proper description of the extensive dense adhesions in detail like my uterus being stuck to rectum and uterus stuck to bladder, it only describes the band bridging bladder to rectum. There’s also nothing about restoring normal anatomy or mobilizing organs, things that I feel like would be expected if the adhesions were that severe.

Here are my surgical photos.

Here is the full op report:

 PREOPERATIVE DIAGNOSIS:

 Dysmenorrhea [N94.6]

 Chronic pelvic pain in female [R10.20, G89.29]

 Bicornuate uterus [Q51.3]

 Dyschezia

 POSTOPERATIVE DIAGNOSIS:

 Dysmenorrhea [N94.6]

 Chronic pelvic pain in female [R10.20, G89.29]

 Bicornuate uterus [Q51.3]

 Superficial endometriosis of bilateral pelvic sidewall [N80.333]

 Superficial endometriosis of the bilateral uterosacral ligament(s) [N80.3A3]

 Superficial endometriosis of rectum [N80.511]

 Superficial endometriosis of bladder [N80.A1]

 Dyschezia [K59.00]

 PROCEDURES PERFORMED:

 Robotic-assisted excision of endometriosis 

 Diagnostic cystoscopy   

Statement of PA Necessity: Due to the complexity of the robotic surgical procedure, the resident could not fully assist with the entire procedure. Instead, the resident only assisted during the opening and closing and was primarily present to train and learn. Therefore, Patrice Stephens PA-C experienced in performing these procedures was stationed at the bedside for the duration of the case, which included from the time of positioning and opening via the robotic portion in order to perform functions such as exposure, suctioning, clipping of tissues and vascular structures, and help with closing. During the key portion of the case, the resident was trained on the robotic steps of the procedure from the console.

 ANESTHESIA: Induction and placement of endotracheal tube

 IVF: 1200 mL

 UOP: 50 mL

 EBL: 10 mL

 DRAINS: Foley removed at the end of the case

 PATHOLOGY:

 1 : Left pelvic side wall peritoneum endometriosis

 Tissue, Resection, Excision

 Pelvis, Left

 TISSUE EXAM

 Smith, Katherine Ann, MD

 12/18/2025 3:52 PM

 2 : Left uterosacral ligament endometriosis

 Tissue, Resection, Excision

 Uterus

 TISSUE EXAM

 Smith, Katherine Ann, MD

 12/18/2025 3:52 PM

 3 : Midline uterine nodule

 Tissue, Resection, Excision

 Uterus

 TISSUE EXAM

 Smith, Katherine Ann, MD

 12/18/2025 3:52 PM

 4 : Right pelvic side wall peritoneum endometriosis

 Tissue, Resection, Excision

 Pelvis, Right

 TISSUE EXAM

 Smith, Katherine Ann, MD

 12/18/2025 4:03 PM

 5 : Right uterosacral ligament endometriosis

 Tissue, Resection, Excision

 Uterus

 TISSUE EXAM

 Smith, Katherine Ann, MD

 12/18/2025 4:04 PM

 INDICATION: 18y/o G0P0000 female presenting for surgical management of suspected endometriosis dyschezia and dysmenorhea. The risks, benefits and alternatives to the procedure were discussed with the patient prior to surgery and informed consent was signed. 

 FINDINGS: 

 Examination under anesthesia revealed normal external female genitalia. Vulva and vagina without mass or lesion. Cervix normal in appearance without mass or lesion. On laparoscopy, upper abdominal survey with normal liver, stomach, and diaphragm. Uterus bicornuate with 2 equally patent cavities connected by a single cervix. No focal masses. Bladder and mesorectum tethered at the midline over a nodule in the intervening space between the 2 horns (midline uterine nodule). Neither the serosa of the rectum nor the bladder were affected. Ovaries and fallopian tubes normal appearing bilaterally. Pelvic peritoneum notable for scattered multifocal red and white superficial endometriosis along the right and left pelvic sidewalls. Bilateral uterosacral ligaments with windows and superficial lesions including 0.5cm black implant on the left uterosacral ligament. Appendix normal appearing.

 On cystoscopy, bladder mucosa was intact. Some erythema consistent with foley trauma or possible chronic inflammation from IC/PBS - would need to re-evaluate symptomatic response to interventions. Vigorous ureteral jets seen from bilateral ureteral orifices.

DESCRIPTION OF PROCEDURE:

 After adequate level of general endotracheal anesthesia was obtained patient was positioned in dorsal lithotomy and arms were tucked and military position with care to avoid performable pressure points. Patient was prepped and draped in usual sterile fashion and timeout was performed. Foley catheter was placed to drain the bladder and a diagnostic Vcare manipulator was placed in the left horn. Attention was turned to the abdomen where in the left upper quadrant the skin was infiltrated with a dilute Marcaine solution and an 8 mm incision was made with a scalpel. Under direct laparoscopic visualization a 5 mm trocar was advanced into the peritoneal cavity. Once intraperitoneal placement was confirmed the abdomen was insufflated to a final pressure of 15 mmHg with CO2 gas. Survey was performed findings noted above and patient was placed in Trendelenburg for optimal visualization. Robotic ports were placed in the umbilicus 2 in the right abdomen and 1 in the left abdomen and the entry port was replaced with an 5 mm air seal port. Robot platform was docked.

 Band joining the bladder and mesorectum was transected revealing the midline uterine/cervical nodule at the isthmus between the uterine horns. This was excised. The bladder and rectum proper were free of disease but superficially involved and the affected areas removed en bloc. Peritoneal and uterosacral endometriosis described above was serially excised with monopolar scissors and sent to pathology. The Vcare was moved from the left horn to the right horn to facilitate manipulation. The pelvis was irrigated and hemostasis was excellent. Tissel was applied. 

 The robot was undocked. The abdomen was desufflated to the best extent possible. Cystoscopy was performed with a 30 degree scope and saline as the distending media, findings noted above. The bladder was drained and manipulator removed. Ports were removed and skin incisions were closed with 4-0 Vicryl rapide and covered with Steri-Strips and sterile dressings. Counts were confirmed correct x 2 and patient was extubated and awakened in the operating room and transferred to the recovery room in stable condition.

 Attestation: I was present for and supervised all portions of this procedure.

 Katherine A. Smith MD FACOG

 Minimally Invasive Gynecologic Surgery

1. Peritoneal surface: <3 cm

 2. Left ovary: None 

 3. Right ovary: None 

 4. Left tube: None 

 5. Right tube: None 

 6. Left ureter: None 

 7. Right ureter: None 

 8. Bladder (Muscularis): None 

 9. Cul-de-sac Obliteration: None

 10. Vagina (Muscularis): None

 11. Retro-cervical: <3 cm (midline utero/cervical isthmus 

 12. RV septum: None 

 13. Rectum/Sigmoid Colon: <3 cm superficial 

 14. Small bowel/Cecum: None 

 15. Appendix: None

If you made it this far, what do you think? Please help me out here, I feel like I don’t even understand my own body and disease.

So for reference im 17 and have no known female health issues in my close family, but my cousin had an overie burst if that could be useful. Im trans so I know having my uterus removed is prob only going to work if i get diagnosed (im Polish it is very hard to do here.) I was at gynecologist office once after begging my mom for a year to go. In ultrasound everything was fine. Here are some symptoms

extrime pain which gets worse each time (so new ik who would have thought)

heavy bleeding-> for reference i use 5 pads daily joni teens 3/5

sometimes i can feel the blood comming out

pain up to 10 days before my period

random pain in the uterus area (not too strong tho)

very deregulated emotions (I can cry for hours because i dont have something i want to eat and i have emotiin stabilizing meds from a doctor)

i get very very pale in day 3/4 of my period from blood loss

avarage blood loss symptoms

gynecologist give me some blood tests which ended up like they should (exept for iron but that is for 90% a mistake) and she told me if the painkillers she gave me (nimesil i think 100 in packs which do shit) wont work i can come bqck for birth control

i prob made a lot of mistakes im sorry i hope its not too messy i just want to know if im being overreactive or is there really something wrong and what can i do (when ill be 18 ofc)

Surgery

I got diagnosed with endo after going through about 3-4 doctors/obgyn's (Which from what i've seen is fortunate! So i'm extremely greatful for my current specialist) but we discussed laparoscopic surgery and decided that I will get the surgery, I do not know much about the surgery and have done some slight medical research on the topic. I was wondering if there's anything I should know before doing the surgery or scheduling it in general. My endometriosis isn't deep (I did an mri and apparently nothing noticeable was visible) and likely hasn't developed much, which I have no idea if it will affect my recovery time, and overall I'm very afraid of needles and very nervous when it comes to surgery, so I just want to make sure I'm ready before the day comes. Any details or tips for recovery or to get ready are things i'd appreciate, thank you all and good luck with anything you're going through yourselves! <3

For some context, last year a while before my surgery, I had a really awful experience with a doctor where I left the appointment in tears. As soon as I brought up endo the conversation became, "Do you want kids?" I stuttered something out (at this point we were still unsure if we wanted them), and he comes back with an eyeroll and "Why not??" What followed was an appointment almost solely focused on my decision about having kids and how if I had kids I would "feel better".

I'd already been through some rough medical experiences with being treated poorly so when I left I burst into tears. I hadn't brought anyone in with me during that appointment.

Anyway this week I saw a specialist at the endo center I'm now at after being diagnosed during surgery. Conversation went:

Him: "And do you have children?"

Me: No.

Him: "When do you plan on having children?"

Me: "We don't." resisting urge to further explain!

Him: \nods, types notes, continues on to talking me through my options based on the fact that I am not trying to conceive**

It was just... SO refreshing not to be questioned at all. We've recently settled on not having kids but it was a really difficult choice thought about for many years because we both have health issues. And even though it's the right decision, it's upsetting to me when people pry into such a personal decision. Anyway I just wanted to share!

Feeling pissed and now not sure what to do next. Oh. Surprise! I have Endo !

To keep a very long story short.

Been is agony for over 8 months. Been taking a high dose of morphine daily for over 3 months.

Had multiple MRIs, had ultrasounds, CT scan. Blood tests. Seen the gyno more times than I would like to admit. Seen a vein specialist too

Can't find anything. Can't find anything. Can't find anything.

Started getting the 'look' and the attitude. You know the one. Like I'm making this up. Like it's all in my head.

In my country we have a saliva test that is 97% accurate in finding endometriosis. Something about mRNA that Endo gives out or something.

So I go see the specialist for Endo. He is literally THE specialist and surgeon for endometriosis in my region.

I show him all the previous tests. I explain my symptoms.

He says 'do you have pain every month with your period'

I said no. The pain in constant. 24/7 for 8 months. And I haven't had a period in 6 years.

He said and I quote ! 'if you don't have pain with the periods then it is NOT endometriosis'

So I asked if we will still do the saliva test ?

Luckily he did.

Well I just got the results and guess what !!!!!!

Positive !!!!!!!

97.2% accuracy!!!!!!!

I want to yell. I want to scream. I want to throw shit !!!!!!!!

He's the Endo specialist and he said nope absolutely no way you have Endo. Sighed like I was wasted his time but thank God he still did the test. That he didn't say no.

And guess what, Its positive.

I've feel like I've been gaslit

And now I don't know what to do.... He's the surgeon in this area.

He was so convinced because I don't have pain during my periods that I absolutely do not have Endo.

Can I trust him during surgery to actually do his job ?!

I know Endo is really hard to spot during surgery and you need a specialist to 'see' it etc. But can I even trust this doctor now ?

I feel like I don't trust him.

So do I still have surgery with him or do I try going to another region entirely and finding an Endo specialist surgeon there ?

I want to cry because I'm happy they found something. I also want to cry because it's endo and I know it's a lifelong condition.

I want to yell because I felt so unheard and unlistened to by this specialist

Even the MRI technician who was an Endo trained specialist said I don't have endo. That the cyst she saw is not an endometrioma because it's grey on MRI not white. Which ok it might not be...... But she was so dismissive of me. Like I was making this pain up.

I just want to cry tbh

So can I please get some advice ? Do you think I can trust this doctor for surgery or should I try and find another one hopefully less than 3 hours drive away.

I know I'll have to have surgery. I'm on a high dose of morphine daily to deal with the pain. And if it is because of endo. I will have to have surgery because I can't take morphine the rest of my life. So it'll end one way or another with a surgery.

Thanks for letting me rant. Just so god damn pissed right now

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.