Endrodometosis and the bladder: Hey... - Endometriosis UK

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Endrodometosis and the bladder

Eves profile image
Eves
3 Replies

Hey everyone this is gna be kind of long sorry!

I'm 20 years old and 3 years ago when I was 17 I was diagnosed with endo, I didn't completely understand what it was when I was told by the hospital all I really knew at the time was that having sex hurt, periods were the worst and I had to take the pill to help it. So the past 3 years periods got better but the pain with sex stayed the same ! I now having always been prone to utis am having more of a problem. So I recently have had a what I thought was a uti that kept not going or returning for months , pain during urination sometimes ; constantly needing to pee or at least feeling like o need to pee and a pressure feeling on my bladder, after tests kept coming back that my urine was not infected I have finally been referred one to get an ultrasound on my bladder and a camera to look at my womb and ovaries which is on Thursday and then another to the gyno again which I'm waiting to here from the hospital . I am in so much pain and bloated I have even been put on codeine :/! Not mentioning the amount of time I've had off work! I hav such a loving understanding boyfriend and a loving understanding family but I still feel so alone , I feel so sad an emotional and like I just want to stay in bed all day and cry :( I've been reading up on endrodometosis and i work in a pharmacy so I have been speaking to the pharmacist and I'm just so worried :(

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Eves
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3 Replies
Tboag profile image
Tboag

Hi, firstly how was you diagnosed, ??

If you have been diagnosed you should ask fir a referral to a BSGE specialist centre, a scan dosnt show endometriosis, and if you do have endo interfering with your bladder a specialist centre is your best bet, have a look at a lady called Lindle, her post are very good,

Good luck

Xxxx

Yazza profile image
Yazza

I agree you need to get referered to a specialist centre but also you need to check out the consultants that work there 2 as some are better than others! It sounds like you have definatly endo on the bladder and possibly in the bladder as well.... Also from your symptoms it sounds like your ureters are involved and this can cause silent damage to your kidneys.. My advice is do your homework know who and where you want to see them and get your gp to refer you straight to them...

They have to respect your choice and can't refuse you.

Good luck Sharon xx

Sweetyassi profile image
Sweetyassi

Hi,

I had Endo inside my bladder, on top of my bladder, in my bowels, on my ovaries, along with adhesions. Basically everything was stuck together. It to my private surgeon over 5 hours to remove and unstick everything.

It's been a year since my operation and my Endo and adhesions have returned in the same place. Sex is painful and I bleed a little afterwards. I found that the NHS doctors didn't help me the way I wanted them to, they didn't tell me everything like how bad my insides were and how big my Endo was inside my bladder, that's why I had to go private.

I'm now diagnosed with celiac disease, wear and tear in my spine bones, and carpol tunnel.

I hope you find some relief with your pains.

Sweety

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