Endometriosis & Adenomyosis discussion thread

[IndominusRex]

Following 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.

 

[soymilk]

Here's the thread i've been waiting for! Interested to know if anyone else who suffers from Endometriosis also has digestive problems too?

p.s sorry if you're an Endo sufferer - it is truly tit!

 

[IndominusRex]

Hi @soymilk ! I have digestive issues linked to mine, mainly severe bloating!

 

[Inforapenny]

Following 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.

Thank you for the thread IndominusRex

I too have stage IV endometriosis. Main issue is my bladder and bowel
First symptoms around the age of 20
Fobbed off for years
I am now 37 and have it severely and it is incredibly debilitating.
I only got diagnosed last year having been taken to A&E with suspected appendicitis or food poisoning.
However I needed a week in hospital on the bowel unit. I was diagnosed with an infected bowel due to complications of my endo
Initially diagnosed with diverticulitis (I don't fit any of the criteria) then Crohn's, then suspect bowel cancer then finally after scans, MRI endometriosis.
Years of seeing GPs and specialists not one medic linked it with ovulation.
Not one person in A and E and a week on a bowel unit asked about my mensuration cycles.
It was my mum, a nurse who suggested it and then everyone including my bowel consultant was like oh yeah

I'd love to hear other stories. I find it quite a lonely illness to have.

And I'm currently waiting bowel surgery

 

[IndominusRex]

@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”

 

[Ilando]

Glad I’ve found this thread. Like most women with it, I’ve suffered for years without a proper diagnosis.
Thankfully, I found a consultant who was really sympathetic. Two operations have helped get my symptoms under control. I’m now pregnant with my first baby but my endometriosis has made my mental health so much more difficult. I hate anyone examining me, hate ultrasound scans etc due to associating them with the misery and pain of the last few years.

Huge empathy with any of my fellow sufferers. It truly is a miserable and isolating condition xxx

 

[IndominusRex]

@Ilando congratulations on your pregnancy! The mental health impact and general overall health (fatigue!!!!) are very real!

 

[Ilando]

@Ilando congratulations on your pregnancy! The mental health impact and general overall health (fatigue!!!!) are very real!

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’

 

[Satisfying Click]

I was really lucky in that I had good medical care and advice that resulted in me getting an IUS for hormonal down-regulation at the age of 20 and I haven't had a period since (I'd always get pain several days before a bleed, life was miserable). During lockdown, the old Mirena was 6 months out of date whilst I was waiting for a new one, the pains were slowly coming back at that point but luckily manageable with pain, and stopped soon after a new coil was fitted.

 

[Its_Me]

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’

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?

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.

 

[Ilando]

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?

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.

Don’t mind you asking at all we were on the waiting list for IVF. It was classed as ‘unexplained infertility’. I’d had some tests while under anaesthetic having the endometriosis treated and they had showed my tubes were fine. We conceived naturally last year but I miscarriage. Unfortunately, the miscarriage was horrendous and I’m convinced that was down to that part of my body being so messed up.

I’m now in my second trimester with my second pregnancy. I’ve looked pregnant for years as bloating is one of my main symptoms of endo so no really change!

 

[Inforapenny]

@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”

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.

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?

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.

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

 

[soymilk]

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

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!

 

[Sailorontheseasea]

Adenomyosis sufferer here too, started after I had my first baby and just got progressively worse. Absolutely horrific and my heart goes out to everyone who suffers with it and endo etc etc. Truly is debilitating and having a doctor/anyone that listens, understands and takes action is absolutely crucial to mental health - I don’t think people realise it ! xxx

 

[Inforapenny]

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!

I completely understand.
I find it hard to speak to anyone who hasn't got endo. I don't have any friends who have it however one of my best friends has ulcer colitis. She and I both experience the same issues and how debilitating it is.
Endometriosis should be seen as an umbrella term as it effects women in different ways and severities.
And on top of all of the debilitation, sickness, pain, exhaustion we're having problems conceiving. It just seems to unfair.
Sorry to moan.
My next hospital appointment is this week

 

[quietlyback]

Does anybody else have interstitial cystitis as well as endo? Feel like if it’s not one thing it’s the other

 

[Inforapenny]

Does anybody else have interstitial cystitis as well as endo? Feel like if it’s not one thing it’s the other

Yes!!! 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

 

[quietlyback]

Yes!!! 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

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

 

[Inforapenny]

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

Rant away. I'd say IC and endo go hand in hand unfortunately. I completely empathise.
I think my gynae wants to blast some of the endo in that area however the damage has already been done. Until I see my urologists I don't know what the answer is.
I would push also them to give you an MRI for endometriosis.
The anxiety is probably the most disabling thing for me. I go to lectures and talks in a lecture theatre and the stress of making sure you're in a aisle seat. My friends now know to always book an aisle seat for me at the cinema or theatre.
It's been horrendous in lock down if you go for a walk with a friend and it's not in the middle of nowhere. And I want to cry when people point out my bladder issues.

I'm wondering if I can get a toilet badge , my friend has one for her IBD so I'm going to ask the hospital this week.

With your IC are you able to hold your wee in? During certain times of the month I'm incontinent,
If you haven't yet download a fertility app to log your periods and symptoms and ovulation as your bladder will be worse during these times if you have endo

 

[DanaScully]

Hello! I was diagnosed with stage II endometriosis in January 2020. My main symptoms are dreadful pelvic and lower back pain, hot flushes, diarrhoea, nausea and vertigo.

There have been times I've had to lock myself in the disabled toilet at work, strip down to my underwear and lie on the floor. I disregarded it for years but eventually went to my GP.

She referred me for an ultrasound but luckily the technician noticed endometriosis investigation on my notes and told me I needed a laparoscopy, not an ultrasound. When I went back to the GP following the ultrasound she told me I the scan was clear and I didn't have endometriosis.

I relayed what the ultrasound technician had told me and she tried to fob me off telling me that it's likely just dysmenorrhoea. I insisted on a referral to a specialist and was referred to a gynae who agreed to the laparoscopy.

I went on the pill for a bit but I had an allergic reaction so I've come off it now. The gynae told me that if I want ablation or excision I'll need to go to a different specialist as the endometriosis is apparently all over, but I'm coping at the moment so haven't thought about next steps just yet.