Endometriosis query/advice re.bladder??

[Taraalou]

Hi I'm new to this forum and my first post!

So I was having painful periods, pain during sex, irregular periods amongst many other symptoms but anyway after months of investigations I was finally diagnosed through a laparoscopy in Dec 2015.

After surgery things went well and I didn't appear to be in any pain.

Fast forward to now I'm having a huge flare up of what I am assuming is my endo back again extremely bad pelvic pain again, back pain, leg pain to the point where I want to cry all the time, restless legs, extreme fatigue, dizziness, sore skin when touched and itchy skin, hot flushes, pain during sex.

So my query?...I am getting to it honest! 😁

My query is, I've been back and forth to the Drs in the past 6-12 months with what I have been assuming has been several UTI's that have occurred after sex. Tests for UTI's have all come back negative and my thoughts tonight have made me think of my endo! Could it be related? Symptoms don't always last and they vary between a couple of hours to a few days. The symptoms I've had is a constant need to urinate with nothing there other than a dribble followed by a feeling of pressure and burning. I've literally been sat on the toilet for hours because of this feeling won't go away!! I've used heat to try and ease the pain which appears to have eased it off slightly. I'm now left with sore pelvic area that feels bruised...and i still can't go to the toilet properly.

Has anyone else had/having anything similar to what I've been experiencing? Tell me I'm not alone or that I'm putting 2 and 2 together and making 5! Could this be related at all?

Thanks for taking the time to read my long and probably a little too much information at times lol.

[helen2805]

Hello I’m new to the forum too and I’m no medical expert but what you are experiencing is very similar to what I did. I had a hysterectomy in March 2016 and kept experiencing repeated bladder infections and then bleeding. I was referred to a specialist and they discovered that I had a small bladder. I had a small operation to widen it in October 2016 and I’ve not had a single one since. Best of luck with this, I hope that it gets resolved x

[Taraalou in reply to helen2805]

Thankyou for taking the time to read and reply ah wow that's something I would never think of! Glad all is resolved for you!x

[C765]

Hey, I have endo on my bladder and I get UTI symptoms and it's clear at the doctors when I have urine tests just a little bit of blood found. Had it for a few years now and didn't have a clue what was going on cos it's not an obvious endo symptom.

My everyday symptoms are: I frequently need a wee and feel like I can't empty my bladder. Then a couple of times a month I get pain when I wee which can be a burning feeling or a pain going up my bladder towards my belly button and this can last a few hours or days.

If you feel like it could be endo id speak to a specialist again and see what they think.

[Taraalou in reply to C765]

Thankyou for reading and replying really appreciated!

Sounds very similar to me then! I will def go and speak to someone and see if anything can be resolved.

Like I said it's not something that ever crossed my mind until recently. A few of my endo symptoms are not what I'd thought would be endo symptoms until recently and it all makes sense now!

Thanks again x

[C765 in reply to Taraalou]

Glad I could help in some way

Yeah it's hard to know what symptoms are endo and what aren't. I struggled for years trying to understand why I always feel like I have a UTI and I started to think I'd gone mad so it's been a relief to find out. The first thing I said when he told me it was on the bladder was OMG I'm not going mad haha. Even when I told all my symptoms to the guarnatolgiest before my lap I hardly mentioned the bladder issues cos I didn't know if it was related but turns out it's the reason.

[Holleymuzz in reply to C765]

I have endo on the bladder and bowel diagnosis was in nov 2016.

Yes! I have nights where I’m up n down all night and almost setting up camp in the loo. Then it goes away. And can pop back at any random time. Iv also noticed during a flair I became a tiny bit incontenate (can’t spell it) x

[C765 in reply to Holleymuzz]

I have it on the bowel and bladder and well and looking to get it removed in another lap. He couldn't do it in the diagnostic lap cos my bowel wasn't empty so have to wait. Have you had it removed?

[Holleymuzz in reply to C765]

It was an exploratory lap. They said they found it on my bladder, bowel, pod and had adhesions on left ovary and pelvic wall. They said it was very little so not the cause of my pain they lasered it off and discharged me!

Taken me a year of no treatment r help to get seen at Portsmouth. I had mri on bladder and bowel just before Christmas and have to wait till March for results. I can’t open up bowel naturally have to use suppositories. It’s been hell x

[C765 in reply to Holleymuzz]

Oh no, I hope you get some answers in March especially after the long wait for it