Diagnose me…

[ThePinkSheep]

Ok I know nobody can actually diagnose me but I’m desperate for any thoughts or experiences!

When I was born I came out with what they thought was a UTI and then they wanted to send me for scans of my kidneys however as this could have left significant scarring on the organs, it was agreed it would not be carried out yet.

All through childhood I remember it feeling like as what I could only describe at that age as peeing wotsit crisps (the burning). I wouldn’t ever go to the toilet at school, I’m
not really sure why but I only ever had one accident. I know this can’t have helped holding me wee in.

Get to secondary school and around aged 14/16 and the pains which I thought was now a UTI were getting really bad. However, any urine dip out of the hundreds I’ve had in my life, only approximately 3 have shown an infection. It would be excruciating burning, hot sweats, cold sweats, no temperature though and unable to urinate / unable to hold it in at times!

Around 7 or 8 years ago I had a flexible cystoscopy and urethra stretch and debris flushing and I had relief for 4-5 years, probably 3 years symptom free. Fast-forward to last year and I was finally booked for another flexible cystoscopy. Unfortunately the effect was the complete opposite. After 4 weeks I was in severe pain, spending my days on the bathroom floor in agony just peeing on a towel as and when I needed to let a little bit out.

Anytime I have flare ups, which is very common, I take paracetamol (a little too much at times) and drink litres of cranberry juice and it eventually goes away. Antibiotics do not help.

After the procedure I got urethritis, back and stomach pain, and intense UTI symptoms. I could not get out of bed or off the toilet for weeks. He noticed I had high retention during the procedure.

I saw the urology specialist and he was sure it was interstitial cystitis / bladder pain syndrome.

I was put on the urgent waiting list again and today I had a rigid cystoscopy and he blew my bladder up to check the lining and he said everything looks fine and he cannot see any signs of IC / BPS.

So now we are at a loss and he wants to see me again in 4 months. All scans, X-rays etc have always been normal.

I had a baby 4 months ago and whilst pregnant I only experienced the pain a couple of times which is amazing for me as I often have a week long flare up every couple of weeks. Since the baby was born and my body is going back to normal the pain is returning again. I drink 3-4 litres of water a day, soda water as a treat and the odd coffee and peppermint tea.

What can be causing such horrific pain that isn’t showing up on any tests? Please help if you have any experiences!!

Thanks in advance.

I have no clue what it could be OP, but it sounds horrendous. I had bladder issues for years with my last DP every time we had sex I’d get a UTI. antibiotics would clear it up but the pain remained. I did a LOT of research which I’m sure you have too. The last cystoscopy was so horrendous I’ve vowed never to have another.

What I did learn is that too much liquid is as bad as too little. 4 litres sounds like a heck of a lot. Especially if your bladder is angry. It literally never gets chance to calm down.

Also, stay away from cranberry juice. Old wives tale that is absolute rubbish. It’s ’supposed’ to prevent UTIs but it doesn’t. And it’s so, so acidic that your inflamed bladder will probably be screaming when it hits!

My urologist said “if you wouldn’t pour it on an open wound, don’t drink it”!!!

Yours sounds like it’s hormonal which is quite unusual for bladder. Although I do know that menopause (ie lack of oestrogen) makes things worse for lots of women - hence HRT and vaginal pessaries. Maybe your hormone levels are low - massively raised during pregnancy - and then went back to normal?

I really hope you find some support on here. Have you tried the interstitial cystitis Facebook pages? They’re very helpful.

It sounds like a chronic uti. There's a facebook group. Often when an infection is embedded the test results are negative.

Endometriosis of the bladder. Especially if you got no pain during pregnancy.

Have you ever had a laproscopy ? To see inside? I think you have deep infiltrating bladder endo

Have you actually had the kidney scan now? Has a hormonal aspect been investigated? While hormone levels are higher during pregnancy, they are more stable, so could fluctuations be a trigger?

Give up alcohol. I knew someone who was drinking a couple of glasses of red wine most nights. Recurrent painful UTI’s. I suggested total abstinence for a while. UTI’s went away, never came back.

Would this have been present from birth, though?

Is it worse during your period?

It is possible yes. There are a few different theories around it

I can't diagnose you but I've had cystitis/UTIs since I was 14 and I think one urine dip has shown infection.

Sometimes it's been so bad I've been peeing into a bowl by the bed and it's just blood clots. Antibiotics don't do anything.

I tried D Mannose but I have low blood pressure and it made it worse. I stopped having baths and that really helped.

I was diagnosed with an autoimmune a few years ago and apparently interstitial cystitis is a common symptom.

I still get it every now and again and just deal with it for a few days. Use a pad to wee into, take paracetamol and rest. I don't bother with a Dr. It usually clears up.

I’m also thinking endo…

https://www.bbc.co.uk/news/articles/c6299pye272o

Oxalate metabolism problems?

Not properly metabolising oxalic acid would cause micro crystals by the thousands and give pain like you describe.

Try a very low oxalate diet for 3 months and see if it makes a difference. It can’t hurt to try!

I have no idea, but it sounds awful. I really hope you get some answers, it's all you need with a young baby! X

So sorry you experienced bladder issues too. Bladder pain is horrendous. I have a high pain threshold usually- my c-section pain although extremely painful I didn’t cry once but during a flare up of the bladder pain you with find my on the toilet hysterical.

In terms of liquids, 4L is too much and that’s not too regular, however I find it really difficult if I don’t drink so much I feel the burning coming on and it urges me to drink more. Perhaps a vicious circle there.

And yes, the cranberry juice. I have heard this also but it’s like an addiction when I find some temporary relief I grab it when in actual fact as you say, it really probably isn’t helping at all.

Interesting what you said about the hormonal aspect as I had never thought of this but would make perfect sense given I was almost completely symptom free during pregnancy. Although not at menopause age yet (I’m 29), this is definitely worth looking into. I’m taking everything from this post and making a list to do some further research as I’d spent the past year so sure it was IC and now I feel completely back to square one.

I will check out the FB pages. Thanks so much!

Interesting.. also something to look into again. This could be it. Would a urologist and multiple cystoscopy’s pick this up or is it not something they can ‘see’ as such? Many thanks

I have thought about this but as I get very heavy and painful periods they have checked for endo years back. And would it be seen during a cystoscopy or does it form around the outside of the bladder, I wonder? Thanks!

No, I’ve only ever had 2 flexible cystoscopys and 1 rigid cystoscopy. However reading about the condition you have mentioned, it totally could be a possibility especially:

“This can cause a range of symptoms, including pelvic pain, pain during urination (dysuria), blood in the urine (hematuria), and urinary urgency or frequency.”

Another added to the list to research. Thanks so much!

Have you ever tried estrogen cream? What are your hormones like generally? You mentioned it went away in pregnancy which is common for PCOS sufferers with low estrogen (pain like UTI is a common symptom but GPs often don’t know this).

How did they “check for endo”? Many times they fob you off. Only way to ever check is a full laproscopy, not a scan or anything of the like. Usually women realise once surgeon goes inside pain is due to very advanced endo, sometimes sticking their organs together such as ovaries, bladder, bowels etc. I’d honestly urge you to push this.

Yes multiple kidney scans and all perfect. Ultra sound and CTs always come back normal. No hormonal aspect has been investigated but it totally makes sense seeing as I had almost a whole pregnancy with no issues. Definitely something else to look into. Thank you!

Outside of the bladder, nothing inside. Inside is only for checking intersystal cystitis

This was what I was thinking.

Also it's impossible to buy cranberry juice that doesn't have sugar or sweeteners added. Even if it was effective for cystitis, it's not available in the correct form.

Agree with this, I do find alcohol can give me pains so had totally cut back and since becoming pregnant and having baby I haven’t had any. Thanks!