Leaking urine... :(

[avelvetcrowbar]

Hi everyone. I feel like I'm posting so many different problems on here at the moment. I'm not overly well.

The past few years with my endometriosis and my polycystic ovaries I'd started to develop urinary issues. For years I've continuously suffered with utis, kidney infections and so on and was referred to urology after I had about 9 or 10 infections in less than a year. I ended up having a cystoscopy which was meant to rule out intersistial cystitis, I was diagnosed with an overactive bladder and put on solifenacin and amitriptyline, since the cystoscopy in particular I've been having an issue with smelling strongly of urine and my underwear is often wet even though I've been going to the toilet frequently, wiping properly and trying to go as soon as I feel the urge.

It's so embarrassing and i feel like it's just another problem for me to deal with. I'm feeling really self concious as the smell is strong and smells terribly of ammonia. I'm pretty certain I have another water infection at the moment (it's hard to always tell as it always hurts me to wee) along with fever, stomach ache, pains in my lower back but am reluctant to go back to my gp as I've been tried on so many antibiotics- some for months on end which have made no difference- which resulted in me being referred to urology in the first place.

Me and my gynecologist are wondering if my urinary issues are a result of endometriosis and I'm on the waiting list for another laparoscopy due to my endometriosis getting more severe but at the moment it's the urinary issues that are really dominating my life.

I get up every night to wee, I've been drinking filtered water, trying to cut out caffeine and such but it just seems to be worsening. I can't necessarily feel myself leaking-I'm certain it happens most at night whilst I'm asleep but no matter what my pants are always wet and I smell strongly of wee.

I'm 24 and not overly overweight. I was about 12 stone when I last weighed myself although I've been walking twice daily and might have lost a little weight over the past 2 months.

I feel really awful about myself and pretty embarrassed that this is happening constantly. I'm due to go back to my final year at university doing my degree and my urinary issues really have a profound effect on my concentration.

Does anyone have any advice on what I can do? Solifenacin has helped with the amount of times I urinate but it feels like I've hit a wall in terms of anything making a difference.

Any help/advice would be brilliant

Sorry for the long post.

Jordan-Melissa

X

[Kirstiexxx]

Hey,

I suffer from the exact same problem. My gynaecologist and urologist both think the leaking is because of the endometriosis. I had a cystoscopy to rule out IC too. I'm currently having bladder instillation with cystistat to help with the leaking and I've had a course of that before and it did help. I've even took to wearing tena light liners cos was finding it too upsetting to find my underwear wet at 27. It's amazing how many problems having endometriosis brings xxx

[Chidders]

Hi, thanks for putting your post on here , as I have the same problems too. And none of my friends or family suffer from it, so don't understand. I've had a course of bladder installations but they didn't seem to help me. And I found it painful. But they do help some people? I'm waiting for another laparoscopy and hopefully a cystocopy. It's awful isn't it, I find it difficult with my job. And always worry about being near a toilet. If you do come accross anything that helps please share on here. I hope it gets better for you too x

[Tina32]

Hi Jordan-Melisa,

I'm so sorry to read your post, your symptoms sound very similar to the symptoms I had for severe bladder endo. I've just recently had surgery and it has already made such a difference and I have not experienced bladder problems since.

I too started noticing I was getting what I thought were recurring UTIs. My symptoms were bladder pain, pain urinating, strong sudden urge to urinate which I couldn't control, lower back pain, urinating frequently at night mainly but sometimes during the and leaking. At it's worse I had to wear pads all the time especially when going to bed as there were quite a few times I ever leaked a bit or completely wet myself. It really got me down. I also had other endo symptoms like ovulation pain.

Basically my consultant found that the endo had penetrated my bladder wall. I was diagnosed with stage 4 endo mainly in the rectovaginal area. I was also diagnosed with a overactive bladder, I couldn't take solifenacin as it caused me constipation so I took another newer drug, I can't remember name off head.

What did your cystoscopy show? Mine showed that inside my bladder there were a lot of areas of inflammation and my ureters could not be seen.

Prior to a lap for official diagnosis you could ask for a pelvic mri. If you have deeply infiltrating endometriosis some of it may show up in the scans.

I was referred to a specialist centre and my consultant did a number of tests. I was put on prostap prior to surgery. It helped with some of my endo symptoms but not the ones related to my bladder.

I also tried to follow the diet for interstitial cystitis which did help with the pain but not leaking.

If your symptoms are related to endo your best course of treatment will be excision surgery at a specialist centre where the gynaecology and urology teams operate together.

I'm also at uni, just finished my first year.

There's a lot more I could say but I've written loads already lol

Pls free to ask any questions or DM me