UTI/endo on bladder?

[CJessicaD]

The beginning of me finally realising there was something wrong with my body started with having a UTI that didn’t clear with two lots of antibiotics. I insisted it wasn’t a UTI because it didn’t sting when I wee’d or any of the usual symptoms. Anyway, they then suspected appendicitis and whilst in hospital found a 5cm ovarian cyst, polyp and then suspected endometriosis. I’m having my first lap on Wednesday.

Other than that I have constantly strong smelling urine. I drink a lot more water than I used to but I go to the toilet A LOT. People around me have even noticed it! I’ve been told by friends my urine is so strong smelling and my auntie even said last week that it smells like I have an infection. I never hold a wee for long because it always hurts my bladder too much! I’m constantly needing a wee.

Just wondering if this is a symptom of endo on the bladder as I don’t know much about them symptoms?? Also I don’t know whether to mention it in the morning before my lap? Or is it just a reoccurring UTI? When friends have had UTI’s they’ve said how painful they are and burn but I don’t get any of this! Just an ache in my bladder xxx

[Kirst625]

Hi, sorry to hear you are suffering so much. I don't know if it's quite the same but wondered if sharing a bit of my story may help. At 13, round starting my periods, I developed a very overactive bladder. At times I felt like I needed to go almost constantly but would often only produce a small amount at a time. This peaked and troughed for many years. At 23 I started to leak small amounts of urine and my bladder and kidney area began to hurt. I was back and forth to the docs, urine testing showed white blood cells and protein so I was given 4 lots of antibiotics within 6 months as they thought I must be fighting an infection. This did very little apart from making me feel grotty and the urgency and leaking continued. I underwent urodynamic testing and they found I wasn't emptying my bladder properly so wanted to look at it further. They put me under general and carried out a rigid cystoscopy where they blow your bladder up. I was found to have bleeding spots on my bladder so they concluded 'possible interstitial cystitis'. After care and follow up was poor and so I stopped seeking medical advice and lived with having to wear sanitary pads and putting up with it for a while. A year or so later it mostly settled. Fast forward 10 years and it reared its head again with lots of other past symptoms including bad bowel / ibs and some new ones that seemed like perimenopause. A year ago I started with horrid periods and lots of pelvic pain on top and started looking into the possibility of endometriosis. I then read a good article of a study conducted where interstitial cystitis and endometriosis had been found to co-exist in a high percentage of women and they have been dubbed the 'evil twins'. I'm on a pathway with the gynae now to discover if I have Endo and if I have a lap I want them to look at my bladder again too to see whether the interstitial cystitis has deteriorated or if there is Endo present. I would definitely raise it if I were you and also read up on and look into interstitial cystitis (I don't have all the symptoms such as needing to wee at night, the one time it actually calms down). Good luck and keep me posted X

[Summer143]

Look up the symptoms of interstitial cystitis.

[Alarna]

I'm also wating for a lap got pr opp on 18 for supposed endo but also get a lot f pain in my bladder feel like I need a wee all the time and funny smell but don't have a wee infection as been checked my best fess is tell them aa they no

[skybluepink in reply to Alarna]

Mist .pottasium citrate for pain .Tastes horrible but does the trick till cultured antibiotics available .If pain dire at your age would have gone to GUM clinic as do it then & there but can be long waits.

[CJessicaD]

Completely forgot to reply to everybody because I had my lap not long after! They confirmed endo but I don’t think they mentioned whether or not it was on the bladder... today I had an appointment with my GP to find out my belly buttion incision is infected and I have a UTI. So 2 lots of antibiotics!! 😒 my GP and I both suspect I’ve had this UTI since February because multiple urine tests since February have shown a UTI was present but it just isn’t shifting even with antibiotics. Because of endo pain and surgery I sort of ignored the UTI... my urine has been sent off and hopefully now I can get it investigated and treated!

[Edinamalac]

Can you update?

[CJessicaD in reply to Edinamalac]

Had a scan on my bladder and kidneys on Saturday. She said my bladder empties fine and my kidneys are fine. I need to see my doctor to discuss the scan... I’ve FINALLY been referred back to gynae at the hospital although I keep being told I need to see a urologist not a gynae. Hopefully that’s the next step. It’s like pulling teeth trying to be referred, it’s so hard 😩 still having the odd bits of blood in my urine and pain 😢

[Edinamalac in reply to CJessicaD]

I'm so sorry to hear that I know what you're talking about. My gyno says I'm completely fine on physical exams so he sends me to urologist. They can't find anything either, but I still have symptoms

[CJessicaD in reply to Edinamalac]

It’s reallt frustrating isn’t it! Have you had a cytoscopy? X

[Edinamalac in reply to CJessicaD]

No, I have been to 2 different urologists, they all refused to do one. The first one said I'm too young to have interstitial cystitis. The second one still thinks I have a UTI.

[Edinamalac in reply to Edinamalac]

Nobody thought about Endo with bladder involvement

[skybluepink in reply to CJessicaD]

I thought, I bet she is uk, as the discrimination is yet another metoo situation especially with urology . If you sits on the cusp & single solo ,oh dear especially if of a certain age !I have sustained severe personal injury to point of MI cardiac re the lovely antibiotic policies & Thatchers intelligent? cutbacks and still they continue the aggravation of access & appropriate treatment .They [ News] are now trying to say women are ignoringthe Testing ??!! No no no that is not what is happening .I have had to self fund ,& what was found on way endemetriosis by Polish Drs in one visit.As for predisposition when GP know there are genetic weaknesses & disability is unbelievable They cannot Fast Track wasting numerous appts & causing many changing surgeries What is going on ? PS I have heard those with Mental Issues endure the same negligence & moving of surgery because don't feel safe.Maybe a few FOI questions need to be asked ?