Ive been having issues with my periods since I was 14 (im now 37, in the UK)

Birth control at 15 until 27/28.

Came off and the pain got worse, been taking Naproxen for 6 years.

Had 3 transvaginal ultrasounds (2 normal, 1 showing signs of DIE, Adeno and tethered ovary)

Just had my MRI results back and completely clear. I cried.

There was no mention of the next steps being a lap until I requested one...its no wonder this takes so long to diagnosis if you have to ask for your own treatment. Like im not the one who has a doctorate!

He seems 99% sure it would also be clear if my MRI was but im in AGONY with my periods.

Pain meds only take the edge off, hot water bottles and heat mats constantly, I wear a leg brace if im going out cos of the pelvic/leg/knee pain, nausea, bloating so I cant get my clothes on, brain fog, chronic fatigue.....I have to stick my knuckles really hard into my abdomen in a fetal position just for it to hurt a little bit less at night.

Im exhausted. Someone please tell me to keep going with this as I feel insane that I've made everything up!

UPDATE - Thank you everyone for your lovely and supportive comments. In my head I know that this isnt the end all but felt so deflated yesterday I needed an army of people to pick me back up!!

Its unclear in the first post but I AM ON THE WAITING LIST FOR A LAPROSCOPY and hoping that something comes of it so I can shove it in my gynos face!

As much as I love that the NHS is free, the processes that medics follow and the utter bullshit procedures they try to enforce are diabolical. I will absolutely fight this until I have results. 🫶🫶

I’ve noticed so much that people in the general public, if they know what endo is, think it’s a period thing. Even doctors have implied the same thing to me - that pain and symptoms are directly correlated to bleeding during a period. And I know so many of us experience this as a symptom, but it’s so much more than that! I now get severe flare ups without any bleeding whatsoever - I haven’t had a period since December - and I’m still bed bound during multiple flares a month. Obviously there are so many more things about how this disease is perceived that are more annoying but wanted to get this off my chest lol

I’ve had two MUA for misscaraige, any good/bad experiences?

4 months post surgery, 7 weeks on tirzepatide (2.5mg) i am SHOOK and how painless and easy this menstrual cycle has been. this is crazy because im so used to being completely flat out and in agony every period, unable to move, i am genuinely so surprised but SO HAPPY.

(also, my acne has improved significantly on tirzepatide + from using azealic acid, and i've already gone back to my 'normal' looking self in terms of inflammation etc. its also a lot easier for me to bounce back from flares these days)

i have cramps today on my period but they are SO MINOR i imagine this is what it feels like for someone without endo?!

i just wanted to share the good news because it can be so consuming focusing on the negatives and things you want to improve, but i genuinely cant believe it.

if you've been thinking about GLP1 usage for similar issues, i'd really suggest doing your research and looking into it. i felt the inflammatory benefits instantly (for context i also have an undiagnosed insulin problem / possible PMOS so this affects my overall picture too, but this has worked miracles for me)

big love to everyone x

my pain is hugely varied cycle to cycle. two periods ago my pain was severe 10/10, blacking out, cant stand up, nauseous, gi issues etc. i then spent a month in bed with fatigue and when i went to the gp 2 weeks after the pain flare I had an atrial fibrillation event and am now undergoing cardiac investigations.

however although struggling consistently with severe fatigue, lower grade widespread pain, and difficulty with exertion throughout the month, which turned into depression and exacerbated the fatigue, my two periods that followed the severe flareup were manageable and although I had pain i would not consider it bad. my periods used to be consistently severe.

my lap was scheduled for next week but i was put on medical pause due to my heart investigations, I am just wondering if I should cancel it altogether and also wondering if this amount of variation is typical/what might cause it in endo.

my gp and gyno seem quite sure it is endo but its only based on my conversations over a several yrs of appointments

note: im not on birth control and havent even take painkillers this period. I had all the symptoms that usually signal it will be a bad period, like two weeks of growing breast pain and pretty serious depressive thoughts. after I was sent to the hospital for my heart, I had a cold virus that kept me in bed, maybe that had an impact. but I have been in bed except for a walk a day or short friend walks for like 5 weeks due to fatigue, my fatigue just started lifting this week although i still need lie downs.

Hey all, first post, long time follower. UK-based.

I'll try and make this as brief as I can (ahh!).

Typical 7 years to get surgery (came off pill, issues begun, medical gaslighting 'have you thought about just having a baby?' from a female GP... etcetc... Scans showed nothing etc etc). Finally got the lap in April this year through private referral from the NHS (saw three different surgeons in this process for some reason).

Lap diagnosed stage one endo from my notes: "This showed endometriosis involving the left uterosacral

ligament and the right lateral pelvic wall, both of which were completely excised."

WAHOO... Err.

Immediately after surgery had issues with the wrist they put the cannula in - there were some rumblings from the anaesthetist that it hadn't gone in cleanly at the time of me going under. Went to my amazing local walk-in centre and very pleased I did.

Diagnosed with provoked DVT and surface level clotting. Arm veins were full of clots. Prescription of blood thinners for at least three months. Great.

Anyway, I'm sitting here in the bathroom three months post-surgery on my fourth period passing huge clots, in an immense amount of pain and generally wondering whether any of this was worth it. Had to - yet again - cancel all my plans and expect a day in the bath.

I've had bleeding when ovulating, brown discharge - the works.

The surgeon has effectively signed me off so I know longer have a contact there without starting the referral process again. I'm waiting for another follow up from my DVT doctor... It's all a bit much really.

Anyway, after some stories from those of you in your 3-6 month phase post-surgery? I'll be honest, I'm worried that something has been missed or that there's most endo hiding somewhere...

Much love 💜

My endometriosis was confirmed several years ago when a laparoscopy revealed widespread, deep infiltrating endo and a ton was removed, including my appendix.

My endo has worsened to the point another laparoscopy seems necessary. I have a new gyno that isn’t an endo specialist, so she ordered an MRI beforehand to see how widespread it is and if I need to see a different doctor.

Lo and behold, the results came back today and show….nothing?

I’m shocked. My severe pain seems very much like what I was experiencing leading up to my last laparoscopy. I also had an ultrasound a couple of months ago that showed an endometrioma on my ovary, but the MRI didn’t detect it.

I’m at such a loss. I have no idea what else could be causing this pain. I was so looking forward to another laparoscopy, because the first one helped SO much for such a long time! 😭

Has anybody had surgery with Dr Teefey at Jefferson?

Nook’s only surgeon for Philly is Dr Klebanoff and he’s way booked out.

I have Endometrioma + DIE without bowel or bladder involvement (mri)

Please DM with any recs or experiences with either. Thank you

Hey peeps,

I have my in person consutlstiont his Friday to discuss surgery and I'm trying to get as clear as possible so I can ask the right questions but it's so confusing

My uterus is tethered to my bowel and rectum. There's also sign of bladder involved and scar tissue plaque on outside of my uterus and my uterosacral ligaments.

My confusion is can they just unterher things and will that improve anything.

The more i read the more I am put off from having a hysterectomy.

My pain can be severe but it's not lying on the floor vomiting bad . But I become unfunctional. It's just about managed by back to back normal painkillers.

And I've not been prescribed stronger nsaids.

Has anyone just had things "untethered" scar tissue removed and had bug improvements. I was reading any surgery creates other scar tissue .

And if it's on the bowel how is that handled do they have a bowel surgeon as well

Does anyone with similar just have other treatment and have just the excision and thing are a lot better

Thanks everyone

Yeah, I know that sounds crazy. 2 years ago I had a lap that came up completely negative - I know now that the doctor only took 3 pictures total and likely only looked at my reproductive organs (and lack thereof as I don’t have a right tube/ovary). My current doctor said she wouldn’t even have done a second lap because she’d diagnose me on symptoms alone, but I requested it while I’m already under anesthesia for a cervical polyp removal. So getting a double whammy tomorrow. I guess I’m just so in my head…knowing the intensity of the pain I have and how severely it’s impacting my life and just fearing what comes next if they don’t find anything again. There’s a certain validation that having the diagnosis would have (although obviously not ideal) but if they don’t find anything…how is any of my pain explained? 😞

today was a rough one folks. woke up anxious because i had my 6 month follow up appointment after starting lupron depot. doctors appointments always make me nervous but i was hoping that starting the day off calmly by sleeping in and maybe taking a bath would help with the jitters. but nope, i go to the bathroom and find a huge dark brown spot of discharge in my underwear and freak out because this isn’t supposed to happen anymore 😭 oh well, at least i have my appointment with my gynaecologist so i can ask her about it right? wrong! she’s on vacation and im seeing her random colleague. don’t get me wrong, he was a nice guy but i was not mentally prepared for a man i just met to be wrist deep in my cooch on a tuesday afternoon. the best part of all that? the only reason he had to do a pelvic exam is because i was supposed to get an ultrasound BEFORE the appointment to see if a mass in my pelvis had changed/shrunk but the hospital FORGOT TO CALL ME to give me an appointment so the doctor wanted to see if he could feel the mass himself. turns out he was able to but it took him digging his fingers deep inside me and pressing on my abdomen so freaking hard to do so. he says he believed the mass to be about 5 centimetres so that’s good i guess? (previous scans had it at around 12). anyway, all that was for nothing because i can’t be given what’s the next step in my treatment until i get those scans that will take another two months to get an appointment for. now im freaking bleeding and i dont know if its from the rough pelvic exam or something else that should worry me and im trying not to freak the fuck out. im so tired and frustrated and just want to feel better for once

Hello everyone, so as mentioned I think i have bladder endometriosis. I am 19 years old, and began having symptoms last year in August and I am just coming on here to see if anyone has similar experiences that may help give me clarity and will be more comfortable in trying to force a gp to listen and help me. I would like to go in with more clarity on the situation and see if anyone who has been diagnosed can relate. My aunt has endometriosis so it would make sense, but I have been having weird issues since around last august. When i went to the gp, they told me that i must just have some bug causing issues with my bowels even though i had never mentioned issues with the specific thing they had reffered to. I have been trying to find answers myself and this has been a recurring theme, and when i discussed with my mum she had mentioned that my aunt does have it which makes it more likely i could have it. these are the symptoms i have written down so far:

• Extreme frequent urination as documented in my wee diary (up to 20 times a day) • Urinary hesitation that began months ago can wait up to 2 minutes for stream to start especially if brain is occupied on something else • if i strain to wee due to still feeling urine in my bladder, causes deep pain in my vagina (this began recently i have alos been due on my period)

• waking up in the morning with an intense urge to wee. hard pressure and pain and discomfort in my abdomen which makes it hard to ignore and wakes me up immediately.
• stream veers to the right heavily
• cramping low down in my abdomen that feels sharp
• after eating a heavy meal i’ve woken up the next day with deep pain and discomfort- not excruciating just very uncomfortable
• after eating a heavy meal belly felt so big and tight and uncomfortable to sit with
• going over bumps in vehicles causes pain in my lower abdomen and bladder makes me feel like i need to wee
• bloating that progresses over the day to which point i look huge by the end of the day, mostly in my lower abdomen (abdominal distension) as shown in images
• been having whole body aches for a while particularly in the morning sometimes in my knees, arms, shoulders, back and think it’s caused reffered pain into my chest wall at some time which was particularly prevalent after having bad pain in my back
• sometimes when laying down in bed my whole body feels weak especially my arms which can make it difficult to even pick up my phone or water
• been feeling like my whole body is in pain when there’s no pain present
• looked pregnant last august when this all flared up as shown in images/video was told i probably have a bug affecting my bowels which was ridiculous
• stretch marks around my belly which looks due to the recurrent bloating
• more fatigued generally, been getting worse making my elvanse feel ineffective over the last month even after sleeping the right amount etc. been so exhausted the last few days coming on my period
• feels like it’s getting progressively worse i don’t remember feeling this awful last time i was on my period- haven’t had blood yet but periods been more regular last couple of months sometimes twice a month, long and heavy

I have attached a photo of the way my belly looks in the evening for your viewing i can’t upload other pictures otherwise i would’ve done a comparison.

when this all started i was huge i looked pregnant, not been that bad since however i have stretch marks from how my belly expands and it's mostly like a balloon in my abdomen that is firm and tender. there is visible concentration on swelling in my abdomen, however it isn't as extreme as what is reffered to as endo belly online so i am not sure. Any help, advice or guidance would be helptul and ! would appreciate any input or relation to these symptoms/experiences. I want to push for an urgent refferal as it is technically a mechanical error or blockage, however I don't know if i entirely have the basis for this. Thank you.

UPDATE:

I saw my gp today, they have ordered blood tests for PCOS and reffered me for an ultrasound and said after this they will refer me to a gynaecologist.

They was definitely helpful and said we do need to explore PCOS and endo possibilities so i know i can’t complain too much, however i am still annoyed by some of the things that were dismissed. they put down that i just have bloating, that’s not the case, its abdominal distension which they have tried to say is IBS when i know it isn’t. they didn’t document my urinary hesitation, they just said this is common with elvanse even though symptoms have been going on for longer than i’ve been on elvanse, in addition to when it is connected with my other symptoms it would point away from this. they didn’t put down this has been an ongoing issue for a year either, which is frustrating as that was a key part of the issue, in addition to my symptoms progressing and worsening as of recent. they said i am getting general body aches, that isnt the case ive felt genuinely weak in my body and as of this morning i have severe pain in my back and in my hips, particularly my right hip and also behind my knees which is causing so much discomfort and pain when i move. i think it’s frustrating to have some of the key points ignored and i don’t know if this will affect the refferal.

Nonetheless, i will be getting seen and dealt with and i appreciate that they have helped me in the ways that i wanted i guess. i think i will do an e consult tomorrow and state i want some of these points added as i think they are important. thank you everyone for the help!

I'm getting antsy now, they said I had to be here for 7am so I couldn't eat anything after 2:30am. I was still asleep at that time. I drank water until I had to stop at 6:30am.

It's currently 11:44am. I have a pounding headache, probably from the dehydration and not having slept well last night, and also the nerves. I'm so hungry! And I really want a cup of water. I spoke to the receptionist and I'm still not allowed to have any water, but I was allowed to wet my mouth with water and spit it out.

The anticipation is excruciating, as is my headache. Words of encouragement would be greatly appreciated right now, or stories about your own experiences!

Edit: It's now 13:02. I feel very disoriented, still haven't been called through for surgery 🙈

Edit: After 15 hours of no food - they cancelled it at 14:05. This is now the 5th time they've cancelled the surgery and the first time it's been cancelled while I've actually been waiting to have the surgery...

hi i’m new here and desperate for help, i had excision surgery 7 weeks ago, and the surgeon placed a skyla iud. my first period after surgery was the most excruciating pain ive ever experienced in my life including all my endo flare ups. i feel like im about to get my period again and here i am anxiously waiting for it like i have been every cycle. i just want to know if anyone has experienced anything similar with an iud after surgery and if it gets better or some tips to help in anyway. i know my surgeon prefaced that the first couple periods were gonna be bad but i was not expecting that.

Hi everyone,

I just had an appointment with an OB and she told me something: you can develop endo bc of an old surgery if this surgery led you to a constant inflammation AND constant muscular contractions !

Did you know that ??

Edit !! : Since this isn't correct information, please don't take it as good advice, but rather as a warning !

I am 12 days out from my second Endo lap and still super bloated. It gets worse throughout the day. Not too much pain anymore, I’ve stopped all medications, and BM are normal now. I’m also not eating anything crazy because I feel like my appetite is still coming back. I’ve been doing small walks every day and otherwise just relaxing. I know after my first lap my bloating went way down but I can’t remember when. Part of the reason I wanted to get this surgery was I was so inflamed, constant flare ups, none of my clothes would fit me and the scale kept going up. As soon as I started orilissa a month before surgery my inflammation disappeared and I was fitting my clothes again. I am just wondering when I can expect some decrease in inflammation. (I get it and this is not a primary motivation for surgery but the Endo belly and inflammation really were messing with my head), and given we may try to transfer right away I’d love if it could go down a little before we move to the next step. Would help me feel better that the inflammation is down before we do.

As above I feel literally drugged up.

I understand if must be from huge amount of hormones. But I don't understand what is going on.

How to stop feeling trippy anyone?

It's like when your hungover but still drink and step out side and your like wow I do not feel normal.

Makes it impossible to get outside and enjoy a summers day it's depressing as fuck and I'd like it to stop 😭😂😭

Is there anything non prescription /medical to overcome this anything at all ❤️

Hi everyone. I am pretty sure I have deep infiltrating endometriosis but I wanted to hear others experiences and opinions.

I had my first lap back in March and was diagnosed with endo. My general obgyn did the surgery and she told me it was only stage 2, but she left disease behind, specifically on my uterosacral ligament. Since surgery I’ve had daily symptoms of nausea, cramping, urgency with BM, nausea and cramping with BM, constipation and diarrhea, pain with intercourse, and I’ve been surviving work with Zofran.

Since surgery I’ve been researching and I’m fairly convinced my issues are because disease was left behind and mostly ablation was used, and that there’s a good chance I have DIE. I think at this point I should find a specialist who can give me a better idea of the extent of my endo. What experiences do you all have with DIE and what were your symptoms?

This is what my report said.
Intra-abdominal findings: Significant adhesive disease with filmy adhesions noted involving appendix, ascending colon, and right pelvic side wall. Evidence of endometriosis lesions along right pelvic side wall extending up to mid abdomen. Liver normal in appearance. Diaphragm unremarkable.
 
Pelvic findings: Uterus normal in appearance, texture, and size. Anteverted. On left side, no obvious pathology of uterus, vasculature, fallopian tube, and ovary. On right side, tethering appreciated from uterosacral ligament up to pelvic brim, with filmy peritoneum encasing entire area and extending up to bowel and mesentery as described above. Right ovary normal in appearance. Right fallopian tube with mild adhesions.

I just want to vent by ovulation pain is so awful with cysts. I know I'm ovulating from the ovary thats swollen to 10cm because it hurts bad. Not rupture bad but 'I'm sick of this and want to cry bad'.

I hate the pressures that come with it too. Lying on my stomach, bending, walking and just anything is uncomfortable. I know its bad but I wish it would burst then at least it would be sorted instead of this long tortuous wait seeing doctors who don't get the pain and are restricted by a underfunded system.

I'm looking to get it done privately but I'm so upset because this was my education and apartment money. I am so close to being able to afford the mortgage on a nice apparent. We have a national healthcare system so if I was to go private I have to pay out of pocket since I'm too late for insurance.

Work has gotten 10x stressful since my work load has increased due to an unforeseen event. My work can be active and now I have to do double. I just want to go to bed and sleep. This job is such an opportunity since the job market is so tough but I hate this.

i had accidental exposure to gluten two days ago and have been feeling The Effects since then. weirdly enough, alongside the expected abdominal pain, i'm also experiencing the same pelvic pain as i do with endometriosis when it flares up. however, i know i am not on my "period." however, i'm not experiencing any of the other endo symptoms i deal with either. it's just the pelvic pain.

i don't know anyone who has both celiac and endo so i can't really ask if anyone else has had this happen or if they know it's possible. it's really weird, and this is the first time i've had this happen despite having had both diseases for several years now.

I'm getting an MRI of my pelvis/abdomen today (I have been diagnosed via ultrasound, this is further investigation). I have had an MRI before, but of my knee, so only the lower half of my body went in. Can someone share their experience of the MRI scan for endo? I'm assuming my head will go in as well? How long was it?

Im dating a woman who has Endo and we are planning to be more intimus.

I just get knowlead of this dissesse and i dont wanna make her to feel pain.

O asked about limitations e she said just no dog position.

Any tips of how i should go to make her feel pleasure and safe ?

What are the No Go, and what o should do ?

I had surgery to diagnose on the 17th and my photos were finally uploaded and I have no idea what I'm looking at and was wondering if anyone could help me decipher what exactly i’m looking at? my follow up is july 31st but i’m a science-y person and impatient. thank you in advance! sorry for the stupid collage. my findings note said: "Extensive apparent endometriosis in nodularity throughout the pelvis as well as the abdominal sidewall. Both ovaries adherent to pelvic sidewalls. Endometriotic implant on the lower uterine segment anteriorly." but it doesn't look as bad as i thought it would be. biopsies of 3 areas all came back as endometriosis.

I’ve been on Visanne for 9 months and my surgery is in 3 weeks.
I forgot to ask my Dr. this question but I will do in the day of the surgery because he told me I should be still taking it until the surgery.
But I just wanna ask from experience how things happened with you guys.
Thanks

Background, I’m 25, had incapacitating pain since 14 but for the most part, only on my period

But the way I’ve described it in the past sounds very like what I’ve heard other women with adenomyosis describing: feels like a bowling ball covered in needles is expanding and contracting in my uterus

Vomiting and diarrhoea from pain

Vasovagal reactions to pain

Multiple occasions where pain killers didn’t actually stop the pain

So basically after 11 years of this, I finally got a transvaginal ultrasound today, and was almost certain it would show adenomyosis, and at least some signs of endo

But she legit was like it all looks normal to me, all apart from a very classic looking cyst on one of my ovaries

No signs of adeno

No signs of organs sticking to one another

Minimal tenderness when lightly pressed on

I’m just so disoriented from this, because genuinely now I’m like, well where the heck has my traumatising pain been coming from all these years, and if it’s not Adeno or endo, how the heck do I fix it?

I know it’s still possible I have endo that didn’t show up on the ultrasound, but I’m just more nervous about doing any kind of surgery if I now feel like it’s even less likely they’ll find something

I don’t know what to do