Urinary issue help

[Bel04]

Hi all, never posted on here before. I'm actually not a mum myself but this site was recommended to me by my boyfriends mum and I thought I'd ask for help here as there are clearly lots of very smart and lovely women on here who I'm sure can help me :)

Around the 20th of Jan I woke up suddenly in the middle of the night busting for a wee and thought nothing of it but after going to the loo three times in a row the feeling didn't go away at all. At this time my urine tested positive for blood, protein and white blood cells. After three courses of antibiotic the symptoms finally cleared up after three weeks of constant pain/discomfort/urgency.

However, following a very small glass of white wine the horrible symptoms came rushing back and have been with me ever since. Now my urine isn't testing positive for anything at all and a gynaecologist who I saw in A&E when I went out of sheer desperation says it is definitely urological and I need to be seen urgently.

My mum went with my to see a private urologist called Dr Ravi but he was no help at all. He gave me ya keys but after three weeks on them I have given them up as they made no difference what so ever. They were an antispasmodic.

On Monday after begging the NHS for help and seeing countless GPs I'm finally getting an appointment with an NHS urologist on Monday! I am scared that he will confirm what other doctors have suggested, that I might have interstitial cystitis a chronic pain disorder :'(.

The only thing is this all came in overnight and I'm more convinced it may be a chronic UTI as from my research I've found that many urine tests used by the NHS and most health services are only 50% accurate and don't detect many strains of bacteria. I read this article yesterday and wondered if I could be suffering from what these women have: www.google.co.uk/amp/s/www.news-medical.net/amp/news/20180320/Antibiotics-could-benefit-women-suffering-from-chronic-bladder-pain.aspx .

I'm also stumped about what I should do while I'm stuck at home curled up with a heating pad on co-codomal trying to deal with the constant discomfort. Prior to this I was a full time student. I was wondering if there was any type of online admin work I could do from my laptop.

The last few months with this unknown illness have been complete hell and after weeks of sleep deprivation, pain and no answers I had reached a point about two weeks ago where I was on the phone to Samaritans feeling like I had no future at all. After getting a prescription for sleeping tablets (zopiclone) I'm feeling MUCH more like myself but im still in a lot of discomfort 24/7 and can't do anything that I normally do. It's horribly lonely.

Other than the urine cultures I've also had 3 ultrasounds, 3 blood tests and a smear test.

Confusingly after the second ultrasound I was told I had a cyst on my left overt by my GP and referred to a gynaecologist but have since seen one (in the emergency department) and been scanned a third time and told I have no cyst, just healthy follicles which are present in all young women.

If anyone can offer me advice for dealing with the pain and discomfort, not screaming at NHS staff and how to have some form of a life (and income!) while dealing with pain/discomfort 24/7 it would really help 👍🏻. If you've bothered reading all this then thank you :).

Hi thanks ever so much for taking the time to reply to me. Unfortunately I've tried d-mannose and it didn't work for me :(

It's ok :) just grateful for replies, I have been on five courses of antibiotics. After the first three I was symptom free for a while six days but am back to square one. They tried me on two more antibiotics but no help :/.

I'm sorry to hear you are suffering so much. I get regular UTIs and I've found making a few changes to my diet helped a lot. You may need to see a urologist but in the meantime try cutting out or reducing caffeine (especially coffee), alcohol, fizzy drinks, fruit juice, citrus fruit, strong cheese and spicy food.

Ive been there, still kind of am but am having treatment and am a lot better symptom wise but not cured yet. You need to ask for an nhs referral to Prof Malone Lee at Whittington hospital in London. I travel from the north of England to see him and I know of people who travel from abroad to see him.

Currently the local CCG are trying to prevent new nhs patients being allowed to access his clinic but this is illegal and if it happens needs challenging. A group of us took legal action against the hospital to get nhs services reinstated as the hospital keep trying to close the clinic down. We still have a legal firm employed who are happy to go back to court if anyone is struggling to get seen.

He is the only doctor in the U.K. who will use high dose antibiotics to combat this. You’re right that most tests fail to pick up the infection. Prof says if you have symptoms you have an infection. He does fresh microscopy to find the infection.....I have an infection under microscope but was told by the nhs for three years that I didn’t have an infection and I was imagining it! Pm me if you want.

And if your short courses of abx brings symptom relief then that demonstrates you have an infection. You need a longer course and higher dose. But it’s against nice guidelines so doctors won’t prescribe. Apart from Prof.

Hi MrsJoshDun, I have a private reservation to see Professor Malone-Lee but not till the 14th of June. It was recommended to me to make an appointment with him by Bladder Health UK. I was told that clinic were not open to new NHS patients. Luckily I have a small trust fund of about £6000 so am willing to spend money if it means I don't have to live in constant pain and can go back to getting my education/working. I'm very sorry to hear you are in a similar situation to myself. I have finally been given an NHS urology referral for this Monday so am hoping he/she will be a good Dr, listen and take note of the evidence supporting use of long term antibiotics. However, I'm sure you have experienced just as many rude Drs who attempt to pass you off. Can only cross my fingers as with tests I doubt I'll get far paying for everything privately. All the best xx

Have sent you a PM.

So sorry for you Bel. Have suffered similarly for years and years.

It didn't start exactly the same for me, but about 15 years ago I had a sudden and massive infection that took weeks to get under control. Since then pretty much anything can trigger a UTI (sometimes would show on dipstick, sometimes not). Just being under the weather; being dehydrated; sex; a spa pool... if I so much as went near any of those things, guaranteed agony. I have had antibiotics on repeat script for ten years to take one at the first hint of trouble.

It started getting worse again over the last couple of years, and I have just finished eight months of the following treatment, which my private consultant highly recommended. Early days but I think it has worked - at least massively reduced symptoms. IAluril.

bladderhealthuk.org/bladder-conditions/interstitial-cystitispainful-bladder-syndrome/icpbs-treatments/intravesical-medications/ialuril

Might be worth reading up about before your appointment since you may want to pursue this depending on what they say. Good luck.

I have interstitial cystitis as part of my fibromyalgia.

Things that have helped me.

Cranberry capsules from Holland & Barrett.

Having a course of trimethoprim at home ready to take when needed. I usually take after 4 days of symptoms if they don't start to abate.

Instillagel syringes (on prescription). I use them externally, they take the burning away.

Hibiscrub ( on prescription). For washing down there when need be.

I usually have 3-4 days with symptoms per week.

I recommend using Vaseline, before and after you urinate, put a bit on your urethra/vulva. This creates a barrier over any enflamed skin to protect it from the acid in urine. It's a hassle but you can get small tins of Vaseline that fit discreetly in your pocket. Also 100% cotton knickers, I've found this makes a real difference. Not cures but these help me manage my symptoms, like you I am awaiting urologist investigation but I have a wonderful gynaecologist who specialises in skin (NHS), please make sure they check your skin because it could be a dermatological reaction. Good luck.

Hi @Bel04 I know this was a few years ago but wondering if you are still out there. I am suffering similar and wondering if you ever got to the bottom of this?