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.

Hi
I would look into few potential causes to start from in no specific order. My thoughts on it ( I am not a specialist )

1. Oxalates- worth trying the diet. This change is accessible, doable, and under your control.
2. endometriotic lesions on the surface of the bladder would not be detectable by cystoscopy. The ones in the bladder wall might not be seen/suspected if the cystoscopy not done before period/second part of the cycle, if ever.
3. relief during pregnancy is not suggestive of endometriosis only. Some autoimmune conditions unpredictably improve during pregnancy and worsen after giving birth. Any structural differences that could sustain UTIs? Pregnancy could have provided temporary change of that due to hormonal background and simply by changing how pelvic floor components related.
4. Hormonal contraception removes ovulation and might be helpful, especially if periods are problematic.

Can you ask for gynecology referral?

At least you can cross that off the list 🥰

I had a misdiagnosis of interstitial cystitis and my symptoms turned out to be of a hormonal cause actually due to a pituitary gland tumour. Totally missed by urologist and the gynaecologist.

You could perhaps ask to try the vaginal oestrogen to see if it eased symptoms? - there is very little risk as far as I'm aware? And try get a full hormone panel including prolactin.

Especially as you had relief during pregnancy when there would have been a big rise in oestrogen which is protective of the tissues around the urethra?

Just a thought - sounds really tough though!

I agree with @BananaCake35- reconsider IC. Two recommendations: 1 - try taking D-Mannose if you feel it’s a UTI. You can pick it up in most health food shops, it’s a powder or tablet form of natural fruit sugars that clean out bacteria from the bladder. Saves drinking all that cranberry juice. I felt it worked for me. 2 - if you’re finding certain foods/drink are triggering an attack, it sounds very much like IC. It was caffeine, anything fermented, certain types of alcohol for me. After so many misdiagnosis of UTI’s, I was prescribed a low dose of Amitriptyline and it really worked for me. Game changer! Maybe you could talk to your GP about it if you haven’t already tried it? I hope you get it sorted - it’s horrible. My heart goes out to you. X

Im confused how you had an op last year but had a baby 4 months ago?

No idea, but I hope you find an answer.

I’m not sure what you mean? I had an operation on 24th March 2024, I found out I was pregnant on 24th May 2024 and then had a baby in January 2025.

Sorry this is for @happytobee forgot to quote

Urethral Syndrome/Chronic Urethritis

• Fits the clinical pattern of dysuria without bacteriuria
• Response to urethral procedures supports this

Pelvic Floor Dysfunction

• Childhood retention patterns suggest possible dysfunction
• Pregnancy improvement could relate to hormonal/anatomical changes
• Postpartum return supports muscular component

Neurogenic Bladder (Subclinical)

• Early onset suggests possible developmental component
• High retention during procedures supports neurological involvement

Hormonal-Responsive Urogenital Syndrome

• Dramatic pregnancy improvement suggests hormonal component
• Estrogen effects on urogenital tissues well-documented

Chronic Pelvic Pain Syndrome

• Multisystem involvement (back pain, abdominal pain)
• Non-infectious chronic pain pattern

:
The dramatic symptom improvement during pregnancy followed by postpartum return strongly suggests a hormonal component to condition.

It sounds hormonal related as it eased in pregnancy. Dud you change your diet for example or give up anything such as spicy food or alcohol/coffee? There probably isn't a magic answer but maybe something that helps. I get UTI symptoms but no infection regularly but mine is probably due to atrophy and my job as a carer as I don't drink enough or empty my bladder often enough either. I can't drink coffee first thing either. How's it been whilst you are on maternity leave?

I’m glad you’ve got something to go on now and explore further @ThePinkSheep it sounds truly awful.
I wondered if you’d ever considered a suprapubic catheter? I’m not sure if it would even be an option, but as you mentioned “bladder removal” I just thought it was a less drastic option than that, but one that might give you relief on one level.

Do you take prebiotics, natural yoghurt etc? I needed long term antibiotics 15 years ago and I still get flare ups of UTI type symptoms every now and again. Its pain when peeing but gets resolved with strong prebiotics. If you have a history of antibiotic use perhaps this would help?

So sorry, uti pain can be next level &your case sounds more complicated than mine. But d mannose was my life changer. I've had uti's since about 14. I now take it the moment I feel the first "twinge". A friend takes it daily (under urologist recommendations). Definitely follow others suggestions but I wonder if it might help while waiting for investigations. Not suitable for diabetics if that's relevant (contains sugar). Nothing else apart from antibiotics- works for me. The science behind it is worth reading up on. X

A friend of mine was born with a second urethra which ended nowhere and caused chronic infections - was only diagnosed after many years following laparoscopy - didn’t show on scans

Sorry, this was the link for the Facebook group I meant to post
https://m.facebook.com/groups/chronicutiwomenssupportgroup/

Also see "Embedded/chronic uti support group" on facebook. Many women on there have been told they have IC when it's actually an infection

I was about to comment the same!! You need a laparoscopy.

Hi there, I haven’t read the whole thread but your story is almost identical to mine.
After countless hospital and doctor visits (including awful cystoscopies and other interventions) and many years of antibiotics, I visited an alternative health practitioner who introduced me to ‘kidney tea’ For me it was like a miracle and although I’m still prone to UTIs they are far far less.
It’s readily available in Germany for kidney and bladder health but you can get it on Amazon.
It seems to be sold out in many places but this is it:

eliveragroup.co.uk/products/harntee-400-tad-n-granules-150-ml?srsltid=AfmBOoplq5yQ3zs1MaaPbmdGrg5wnndZudz3MLZrAYnVnvhCY9biV3XZ

Read up about it and see what you think.
x

Yes. I had excruciating periods for 20 years, always dismissed as dismenorhoea (sp?) until a laporoscopy revealed endo all over the reproductive organs.

Wow! Having never heard of this ... it fits. Do look into it, OP.
https://www.kidneyfund.org/all-about-kidneys/other-kidney-diseases/primary-hyperoxaluria-and-oxalate-symptoms-causes-and-treatment

Endometriosis and autoimmune diseases are connected. That would also explain the reduction in symptoms in pregnancy (when the mother’s immune system goes into a kind of hibernation) as a pp said.

Good luck, OP

www.bbc.co.uk/news/articles/cd9l533k9gwo.amp

I was also wondering about something autoimmune as it got better during pregnancy.
Lots of autoimmune conditions like coeliac disease go away during pregnancy because the immune system behaves differently.

Hi OP, so sorry you are going through this.

A paediatric urologist in Sydney a couple of years ago proved that the bladder can get infected in the cells of the bladder itself. This was thought to be impossible previously. He was investigating a little girl with terrible UTIs. Maybe of relevance to you given your childhood history?

Sorry if this has already been covered. I can't link to the article but his name is Aniruddh (Ani) Deshpande if you want to look it up. He used a biopsy not just a cystoscopy.

It was covered in an article called ‘Battler’s disease’: UTI sufferers’ plight relegated by medicos by NATASHA ROBINSON in THE AUSTRALIAN 03 Feb 2024.

Edited to add article name.

I ended up giving up work, had an IC diagnosis….do not accept it as a diagnosis, even my first private specialist said that once they put it down it becomes a wash your hands of anymore investigations.
I had bladder biopsies, urethra stretch and bladder wash. I have been to the emergency room with many retention issues…catheter fitted. I ended up on morphine with no life.
The tests they do on the NHS haven’t changed since the 1950’s, they’re rubbish.
I wasted years of my life…had many more tests too.
It may or may not be an UTI still that’s not showing…but it’s barbaric the way it’s dealt with.
I had two years of antibiotics and hiprex. I’m off pain relief and antibiotics for two years now. I still have the occasional flare but that is less and less. I also was diagnosed with endometriosis when I was younger. I’ve gone through menopause now which is a whole new challenge!
Sending hugs 🤗 to you.

Just coming on to thank everyone again for their comments. I am working through them and making my list to take with me to the GP. So many interesting points and things I haven’t looked into before so hopefully I can make some progress with finding the root cause. Appreciate everyone’s help 🥰