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.

1. Reconsider Interstitial Cystitis/Bladder Pain Syndrome (IC/BPS)
Even though your bladder looked “normal” during the cystoscopy, IC/BPS often doesn’t show visible signs in early or moderate cases. Some forms don’t present with Hunner’s lesions (ulcers), making visual diagnosis harder.
Consider:
Keeping a bladder diary of symptoms, triggers, diet, fluid intake, and flares.
Trying an IC-specific diet (eliminating acidic foods, caffeine, alcohol, artificial sweeteners).
Ask about Pentosan Polysulfate Sodium (Elmiron) or other medications used for IC.
Consider bladder instillations (meds directly into the bladder) if not already tried.
2. Pelvic Floor Dysfunction (PFD)
Many people with chronic bladder symptoms and no infection actually have pelvic floor muscle dysfunction. This can mimic UTI-like symptoms.
Signs might include:
Burning pain
Urinary urgency/frequency
Pain during or after urination
Worse with stress or physical activity
Ask about:
Referral to a pelvic floor physical therapist (specialized in urogynecology).
Assessment for myofascial trigger points in pelvic muscles.
3. Central Sensitization or Pain Syndromes
Chronic pain without a clear cause might involve nerve hypersensitivity—the nervous system becomes overreactive.
Conditions to ask about:
Chronic Pelvic Pain Syndrome (CPPS)
Vulvodynia or urethral syndrome
Pudendal neuralgia
4. Retention & Voiding Dysfunction
You mentioned you had high bladder retention noted during a procedure. That can cause:
Pain
Frequency and urgency
Risk of incomplete emptying
Ask about:
Urodynamics testing to assess how the bladder fills and empties
Whether self-catheterization might help during flares
5. Autoimmune or Systemic Causes
Some autoimmune diseases can affect the bladder or cause similar symptoms:
Consider testing for:
Lupus
Sjogren's Syndrome
Endometriosis (especially since symptoms improved during pregnancy and are worse postpartum)
6. Postpartum Hormonal Changes
Post-pregnancy shifts can impact tissues and nerves involved in the urinary tract. Also, prolapse, nerve compression, or inflammation related to childbirth could be contributors.
Practical Tips While Awaiting Answers:
Avoid cranberry juice – it’s acidic and often worsens IC/BPS symptoms.
Try alkalizing agents (e.g., sodium bicarbonate in water) during flares.
Use heat or ice packs for external comfort.
Consider asking about amitriptyline or hydroxyzine (often used for nerve pain and IC).

Hmm, I tend to not get a flare up during my period funnily enough unless I use tampons and then I feel the burning pain again. I am however on the Depo since my baby was born as I get very painful, heavy periods so I haven’t had a ‘proper’ period since before I got pregnant.

Sounds like an embedded UTI, had it for over 13 years. No such thing as IC! Get a private test done.
I ended up at Harley Street with long term antibiotics.

Sorry you got through this too. I often sit in an empty bath for hours on end just weeing dribbles whenever I need to, to get just a second of relief. Otherwise I cannot hold it. Interesting about the autoimmune- will look into it. Thank you

Thank you, thank you! So many helpful replies. Definitely going to go for a gynaecology referral now. I have been under the urologist for 29 years now and still no further to finding out what it is or what, if anything can be done. Will call GP on Tuesday after the BH.

You poor, poor thing.
I’m sure you’ll have tried everything to hell yourself. I know that alcohol, caffeine and spicy food can irritate your waterworks so I’d cut all of them out completely if I were in your shoes. Worth a try.

Absolutely worth some research and a try, thank you! I will try anything! I have even discussed bladder removal, not to sound dramatic but I can’t imagine living any longer with such pain. Of course at 29 years old and no diagnosis they aren’t entertaining that, and of course I will be grateful for not doing that if and when I find a cause of the pain and hopefully some treatment!

Have you been examined by a physio who deals with pelvic floor? Do you do kegels?

Eeekkk thank you- it’s really difficult with a baby who needs me and I’m stuck to the toilet. Hopefully I will find some answers very, very soon!

Do you take the pill normally?
I suffered all through my late teens/20’s with UTI’s, all while taking the combined pill, although not nearly as bad as you.
They stopped when I had DC at 28 and 30, we switched to condoms as when I started taking it again it just didn’t seem to suit me anymore. Not had a single one since. (Late 40’s now)
when discussing HRT with GP I said I didn’t want them to start up again, they said “oh yes there is a link in some women with contraceptive pill and UTI’s” well why did no bugger mention that when I was being prescribed antibiotics virtually every 6 weeks then!🤦‍♀️
they didn’t seem to think HRT would set it off again, and it hasn’t so far, but only been 2 months. I’d seriously consider hormones being at least partly responsible Op. Hope you find an answer - it’s so painful and debilitating.

Never heard of oestrogen cream… I can’t say I’ve ever experienced any obvious hormonal issues but perhaps I am and I just don’t realise that is a potential cause!

Ok interesting. It was just a scan or two a few years back and I guess I just trust what I’m being told but absolutely I need to push on a gynaecologist as urology seems to be a dead end for me now. I will follow up with GP after BH

Yep scan sadly useless
they have to go in and check! X

So helpful and so many things to look in to, thank you!!

For years and years I have been researching weekly and then last year when the urologist was so sure it was IC I felt somewhat relieved but that also meant I kind of gave up in a sense and got used to this diagnosis, hoping that today he would find exactly whatever it was he was looking for and we can move onto treatment.

Now tonight I’m laying in bed very sore, no further than I was yesterday and feeling very deflated!

I second endometriosis and another underlying factor also x

Fowler’s Syndrome?
https://bladderhealthuk.org/page/index/295

Have looked at private testing many times and I would absolutely do it however I quit my job after my cystoscopy last year when the symptoms wiped me out for nearly a month and started living off savings - they are running down quick now but something to reconsider as everything takes so long on the NHS (not moaning!) and I am absolutely desperate now. Are you on / did you have treatment?

Thank you, absolutely. The morning decaf coffee is really just a habit and worth cutting out. Alcohol I have cut out and I now eat a very plain diet out of fear of a flare up (think, plain chicken, plain rice, veg type meals!).

I have and I do as whilst I was pregnant as I kept wetting myself 🙃 so I was referred to the physio for pelvic floor

Increased progesterone & prostaglandins during pregnancy relaxes smooth muscle such as the bladder, urethra and urethral sphincter.

What a nightmare! I really hope things stay well for you. I never got on with the pill or the implant and so I am currently on the Depo injection as it seems to work for me. Saying that, I haven’t been on it since I was probably 20 so 9 years ago so I don’t think I’ve tested it enough to see any correlation between contraction and flares.

Have your periods restarted since the birth? Have you logged your pains and tracked them according to the various stages of your menstrual cycle?

My first thought was endometriosis.

I had a laparoscopy for this many years ago - turns out I didn't have it. But after my c-section, from the haemorrhage I ended up having really bad adhesions attaching my organs and ovaries to my abdominal wall. I'd suffered bad abdominal pain since my c-section. This was only discovered by chance when I had appendicitis and thankfully during the surgery for that, they lasered off all of the adhesions and I finally became pain-free for the first time in several years.

They really should be doing a laparoscopy even just to rule out endo.

You poor thing, OP. This sounds so awful.

I had severe chronic endometriosis for about 30 years, including endo in and around my bladder. Lots of UTI symptoms with no infection showing. I saw urologists for years. Debris scrape gave me temp relief, as you found.

Stuff that helped / that I learned:

1. I think a PP has already said that endo only really shows up on a laparoscopy. Scans don’t always show it. A gynaecologist will probably insist on a scan and then tell you they couldn’t find anything. You may need to push for surgery. If you’re near London / can afford to go private, I can recommend good gynaecologist surgeons (had 7 operations including a full hysterectomy!)
2. Oestrogen pessaries / cream might help and are easy to get - your GP can prescribe immediately
3. This one sounds absolutely mad, I know, but it’s free and you can do it now. A gynaecologist told me about it when I was having issues emptying my bladder. When you pee and feel there’s no more in there, wipe and stand up. Then do something that moves your body - I keep my feet still and move my arms as though I’m jogging as fast as I can. Keeping your feet still gives your hips and your bum a really good jiggle. Then sit down and pee again - you’ll be amazed how much more comes out. I KNOW this sounds insane! - but I’ve never had another UTI since I started doing it…

Good luck. I hope you find some relief soon x

Thank you all SO much for every single comment. I left the hospital today feeling absolutely deflated thinking today I would finally get my confirmed diagnosis and instead of talking about causes, we could talk about treatment. I was so hopeful! Now tonight I laid in bed in pain, feeling utterly empty and lost, feeling like I’m weeing knives when I go to the toilet and wearing my horrendous tight surgery stockings after the general anaesthetic today and thinking ‘I will never find a cure!’. I completely felt I was at a dead end with the only hope being a ‘follow up’ with the urologist in 4 months.

But now with all your help I have somuch to look into and research to go to my GP with and push for the right referral I need.

Logging off now to sleep off the rest of the GA before mummy’ing resumes when baby wakes.

I will update how I get on with the GP. Thanks so much again everyone! I am going to sleep a lot more hopeful now.

Have you ever swabbed for herpes when you've been in pain? It's possible newborns can contract it if the mum is shedding the virus during birth