Handhold - bladder/urethra issues

[pickledwillies]

I hope this won't come across melodramatic but it's genuinely taken over my life since the beginning of Feb. I can't eat or sleep and struggling to concentrate at work. Starting to have scary intrusive thoughts. I have a chronic health condition so dealing with further unrelated health issues has just put me over the edge.

I had an uncomplicated UTI in early Feb which was treated with multiple rounds of antibiotics. It does seem like it's cleared but I'm left with this burning urethral pain which is worse after urinating (and also passing stool, somehow). I'm trying to get medical help but I've already seen a urogynaecologist who didn't really take me seriously and just said it's inflammation and will pass. But it's not getting any better. I also feel like I have to strain to get the last bits of pee put. I'm still on antibiotics as the last doctor I saw prescribed a month's course just in case but it's not helping and I don't actually think it's an infection anymore.

I'm taking hiprex, d mannose, cranberry, drinking tons of water, etc. I've had my urine cultured and it's clear. Tested negative for STDs in6llw cluding ureaplasma and mycoplasma. Had a clear smear test.

Currently looking into pelvic floor dysfunction and low Oestrogen (but I'm only 32 and never had children or been on hormonal contraceptives).

I'm trying to find a good, preferably female gynaecologist who will take me seriously and be able to help. I'm in London and have accepted I'll likely have to pay privately. Does anyone have any suggestions?

The burning urethra pain is driving me nuts and I'm so so scared it won't ever go.

Any experiences, advice, suggestions welcome. I feel so desperate. Couldn't even get out of bed today.

I feel for you. I too have interstitial cystitis which is horrid. I read several interesting articles by professor Lee malone, sadly now passed away, who studied this condition. He found that the ordinary urine test done in the hospital does not show any infections. The bugs are different and hide in the bladder wall and can only be seen under a microscope. It is a painful condition and I feel for you.

About 10 days? I had furiously googled what could be wrong hence seeing someone quite quickly, and I’d been weeing blood so was quite worried. I had a pre-existing relationship with my pelvic physio so she fitted me in very quickly.

Thanks all who've commented re pelvic floor issues! The only thing I'm still concerned about re that is that the urethral burning seems to get worse around my period. If it was a hypertonic pelvic floor, surely that wouldn't happen? :/ But will defs look into this!

Hi

My post is not to scaremonger but I had something similar about 8 year ago and i ended up being diagnosed with IC or painful bladder syndrome.

It started off as an infection - antibiotic cleared it but the pain never went. It got more manageable over time and i got used to a baseline level of pain but urologist were stumped and similarly j tried everything.

I have had cystitat treatments, numerous bladder tests, treatments and now im actually getting tested for endermetrosis.

Acupuncture is the best thing i've ever done which i feel has contributed to helping it get better. Drink lots of water to help ease it. Dont wear underwear to bed. I hope you find some relief soon.

to add my flares are more so around my period which is why i'm getting tested for endo although i have none of the other signs.

I have had a physio but unfortunately this did not work for me.

Periods are my biggest trigger, and sex. On period it seems to be worse when my cramps are worse, and also worse when I'm using tampons.

I had that all My 20s and cantharsis homeopathic pill seemed to work. Maybe placebo but worth a shot. It's absolutely awful and makes life a torment. Good luck

@shaniahoo thanks! Are you having more pain free phases now? Did the PFPT say how long it should take to be "permanently cured", if that's realistic?

I think you’d need to be realistic if it is pelvic floor dysfunction. Physio always comprises two parts, soft tissue work and rehab. If it’s pelvic floor dysfunction you will be given exercises and keep them up to stay “cured” especially as your pain has been going on for a while. I do breathing exercises each day to lengthen and relax my pelvic floor, it doesn’t take long but learning to able to relax your pelvic floor is really important especially as you get older.

For me it’s probable that I already had pelvic floor dysfunction, I’d suffered from an intermittently sore tailbone for a few years which is a classic symptom. The UTI sent it into spasm.

Hello! I had this in 2019. To the point where I was scared to go to the toilet. It would put me out of action for hours.
it randomly started on Boxing Day of 2018 and the first day I went to the toilet and it didn’t happen was New Year’s Eve of 2019.

I saw private doctors, had lots of tests etc and no one knew what was wrong with me. So they just called it urethral pain syndrome.

I still occasionally feel the pain but what has really helped is the pill. Anytime there is blood down there is flares up so I stay on the pill to stop my periods.

Ditto @Porridgeislife , it's more something you have to maintain I think. I'm not "cured" because it's still something I'm working on and I still have an episode every few weeks or so, difference is I know how to deal with it now and I know what to do to help it pass.

Just wanted to jump on and say that I've suffered from chronic UTIs for the last 5ish years. Under the care of Urology but they simply don't know what is wrong. I've found the following have really helped me:

• I stopped taking D Mannose and cranberry supplements.
• I stopped drinking alcohol.
• I stopped consuming caffeine.
• I stopped eating chocolate (but can still eat white chocolate).
• I have also noticed I tend to get a UTI after eating particularly greasy/oily food, like a Chinese takeaway (sadly my favourite!!).

I have no idea what the links are and it hasn't cleared them up entirely, but it seems to have made a significant difference.

I've also been told by different doctors and specialists not to use tampons and pads, which isn't really helpful. However, I use the washable fabric pads and that seems to have helped as well - I would try to avoid washing in fabric conditioner.

Hope that helps in some way! I know how awful and debilitating it can be xx

@Yorkiepud2614 thanks! Did it get better just on its own?

@anythinginapinch will look into this! How long did you take this for, or do you still take it?

embedded infection, does not show on dipsticks

can you get an appointment at the clinic in Harley Street?

@Cattrovert I actually looked into this and went there but found their approach very odd. They didn't do an examination, they didn't ask me about any other conditions, didn't seem to want to rule anything else out. They did the microscopy with fresh urine and said they found white blood cells but when I asked if this could just be inflammation they said yes. It just seemed very one-size-fits-all. I almost wonder if there's anyone who goes there who wouldn't be told they have an embedded infection...

wbc indicate infection

It is worth looking into an embedded UTI. I had a similar struggle last year and 7 courses of antibiotics wouldn’t shift it. I was told by so many GPs that it was interstitial cystitis, remaining inflammation etc. It turned out to be an embedded infection and the wrong antibiotics were being used to treat it. NHS testing for UTIs is very outdated but try PCR testing privately instead and see if anything comes back. I’ve used Randox Health before and they were great and reasonably priced.

@Atmywitsend23 Did that resolve it for you? I've tried pretty much every antibiotic out there and no difference hence why I'm a bit skeptical of the embedded infection theory...

Update: Still feeling the same but thanks everyone for your suggestions! I've made another appointment with a woman urogynaecologist (who was personally recommended, and who'll hopefully be a bit more sympathetic) and a pelvic floor therapist for this week, so should hopefully start getting some answers.

Will also explore oestrogen (even though I'm only 32 so seems unlikely that atrophy/hormones are the issue).

Embedded infection needs months and months of antibiotics, you were probably not on them long enough

@Cattrovert It just seems like nobody who is on them for that long gets fully better! I've had a look at the FB group etc, and the approach is definitely considered controversial...hence why that London clinic is one of the only places doing it! But I'll think about it again if all else fails. I only had 4 WBC in my sample, which I understand is very low and could be due to inflammation, etc.

Best of luck, OP.

If I were you, I would also start taking simple steps to change your diet and especially what you drink. My sister has interstitial cystitis and this makes a huge difference to her. I think it's worth trying.

Also for goodness' sake, make sure you are not using scented toilet paper. This creates a world of pain for me.

There’s been a similar thread running just before Easter - I was initially trying cranberry capsules but they don’t seem to have made any difference. One poster mentioned antihistamines were suggested for an irritated bladder, I tried one last night and it’s made a significant different today. Whisky was also suggested, a good glug at night for two consecutive nights, should kill off any germs.

To those who've done pelvic floor physio @shaniahoo @Porridgeislife - I have my apptmt booked for Friday. Have checked beforehand that the PT does internal work. Might be an odd question, but do they make you do any other exercises? Just asking as I have long COVID and exercising/weightbearing etc is often difficult. Just so I'm prepared.