Thank you for the thread IndominusRexFollowing discussion in another thread this one is for those of us with endo to discuss our symptoms and how we manage them, surgeries etc and general moaning!
I have stage 4 endo, pretty much everywhere, first symptoms at 14, diagnosed at 33. Also have Adeno. And mild PCOS. Currently waiting on another surgery.
Absolutely and difficulty getting a diagnosis makes things so much worse. I was on antidepressants for most of my 20s. Could be a coincidence but it was only when my physical symptoms started getting taken seriously and treated that I was able to come off the medication. GPs need much more training on it otherwise it will forever remain a condition dismissed as just ‘period/women’s problems’@Ilando congratulations on your pregnancy! The mental health impact and general overall health (fatigue!!!!) are very real!
Exact same as me hun, I was on antidepressants for years and it was only when I finally got my surgery at 28 and my symptoms started to ease I was able to start coming off them. Hope you don’t mind me asking but did you get pregnant naturally?Absolutely and difficulty getting a diagnosis makes things so much worse. I was on antidepressants for most of my 20s. Could be a coincidence but it was only when my physical symptoms started getting taken seriously and treated that I was able to come off the medication. GPs need much more training on it otherwise it will forever remain a condition dismissed as just ‘period/women’s problems’
Don’t mind you asking at allExact same as me hun, I was on antidepressants for years and it was only when I finally got my surgery at 28 and my symptoms started to ease I was able to start coming off them. Hope you don’t mind me asking but did you get pregnant naturally?
I have to say though that I didn’t really struggle getting a diagnosis it was my own fault for putting it off for years just thinking that I had ‘bad periods’ which really made me depressed but it got worse and worse. When I first went to my DR they said I maybe had an infection (!) and put me on antibiotics which obviously didn’t do anything then I went back and they referred me straight away for ultrasound and gynaecologist and I had my surgery 3 months later. I still suffered for at least 2 years after the surgery but not as bad as before. Last scan with the fertility clinic they said I have a tiny bit of endo there but they aren’t concerned about it.
Oh wow snap!@Inforapenny we are the same age! The bowel adhesions are awful, I’m waiting on the same surgery. I had an endometrioma burst last summer and it was SO painful. I thought about going to A&E but knew that they’d treat me for appendicitis because of where it was even though I knew it was a cyst. Told my consultant and his response was “yes they would have you’re right”
Yep me too. Constantly told it was bladder infections. It wasn't. I can go to the loo 30 times in an hour when it's really bad. No one thought that was weird. My gynae has said my endo has shattered my bladder nervesExact same as me hun, I was on antidepressants for years and it was only when I finally got my surgery at 28 and my symptoms started to ease I was able to start coming off them. Hope you don’t mind me asking but did you get pregnant naturally?
I have to say though that I didn’t really struggle getting a diagnosis it was my own fault for putting it off for years just thinking that I had ‘bad periods’ which really made me depressed but it got worse and worse. When I first went to my DR they said I maybe had an infection (!) and put me on antibiotics which obviously didn’t do anything then I went back and they referred me straight away for ultrasound and gynaecologist and I had my surgery 3 months later. I still suffered for at least 2 years after the surgery but not as bad as before. Last scan with the fertility clinic they said I have a tiny bit of endo there but they aren’t concerned about it.
omg yes! I have IBD too, they also told me to stay away from gluten as they think that flares my stomach up. I spent an entire summer with a huge bloated belly and in so much pain that some nights I refused to leave the hotel, stayed in bed and cried. I'm so glad we have a place to discuss it together because when my friends (who don't suffer) complain about their period pains - I kind of wanna kill them!Oh wow snap!
One of my main issues is I have inflammatory bowel disease from endo.
For years I thought I was just getting terrible food poisoning or stomach flu.
I will be fine and then all of a sudden I have chills, temperature, severe diarrhea, a temperature and I'm so exhausted with a headache that I have to sleep.
The pain in my bowel and stomach and shooting up my rectum have made me faint.
When I was in hospital the morphine didn't even seem to touch the pain.
My gynae wants me to have surgery and hopefully it will help us conceive.
Endometriosis UK is good but I find having bowel and bladder issues there isn't much out there.
I've also struggled psychologically. I have been told in the past it was in my head, that I needed to stop wearing tights and I needed to let my vaginal floral air
Also I have a major irritation in the media and medical professional when they go on record saying endo is hard to diagnose because women are embarrassed. It's a smoke screen. For 17 years I've been open, honest, candid and desperate but not one professional realised it was endo.
Yep me too. Constantly told it was bladder infections. It wasn't. I can go to the loo 30 times in an hour when it's really bad. No one thought that was weird. My gynae has said my endo has shattered my bladder nerves
I completely understand.omg yes! I have IBD too, they also told me to stay away from gluten as they think that flares my stomach up. I spent an entire summer with a huge bloated belly and in so much pain that some nights I refused to leave the hotel, stayed in bed and cried. I'm so glad we have a place to discuss it together because when my friends (who don't suffer) complain about their period pains - I kind of wanna kill them!
Yes!!! I'm STILL waiting for my urologists appointment.Does anybody else have interstitial cystitis as well as endo? Feel like if it’s not one thing it’s the other
My endo isn’t being treated at the moment I’m on a very long list, because my GP thinks the IC is the higher priority currently and so all my appointments are with urology. Currently waiting for a cystoscopy, and I’ve been given a low dose of nitrofurantoin to take one a night too but it hasn’t helped tbh. Sorry to hear you’re experiencing it too, that’s awful about your bladder nerves! How’re they going to treat that? I’m the same I get such bad anxiety about it, it can be so embarrassing constantly going to the loo during a work day or during a lecture, and then some idiot always jokes about ‘ooh must be pregnant’, yeah I wish it was that easyYes!!! I'm STILL waiting for my urologists appointment.
It's horrendous. When I'm having a bad flare up I can pee 30 or 40 times per hour on the hour, burning, can't empty my bladder.
I don't get any sleep and have learnt not to get upset if I can't sleep and accept the next day I'll be exhausted.
How are they treating you for it?
Have you got endo in your bladder?
I don't actually have much in my bladder but been told endo has destroyed my bladder nerves.
I have severe anxiety about going out or work or long meetings at work because I need to know where the loos are and if I can get to them etc
Rant away. I'd say IC and endo go hand in hand unfortunately. I completely empathise.My endo isn’t being treated at the moment I’m on a very long list, because my GP thinks the IC is the higher priority currently and so all my appointments are with urology. Currently waiting for a cystoscopy, and I’ve been given a low dose of nitrofurantoin to take one a night too but it hasn’t helped tbh. Sorry to hear you’re experiencing it too, that’s awful about your bladder nerves! How’re they going to treat that? I’m the same I get such bad anxiety about it, it can be so embarrassing constantly going to the loo during a work day or during a lecture, and then some idiot always jokes about ‘ooh must be pregnant’, yeah I wish it was that easy
Sorry for the rant x
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