Chronic UTI flare up & in lots of pain. Please share your tips and tell me it will pass (especially ladies under treatment with Prof Malone Lee's clinic)

[Wireless77]

Hello, not even sure why I'm here. I know my only option is to survive this flare, but really needing handhold at the moment.
Have been treated at Prof Malone Lee clinic for chronic UTI nearly 14 months now. So far always been on the same antibiotic and though some ups and downs, I was able to reduce my antibiotics in January and was very hopeful that the end of this bladder saga is in sight... Until I got a flare up from hell (slowly started about 3 weeks ago). I feel like I'm where I was before starting treatment. I'm in so much bladder (abdominal) pain that it keeps me awake at night and makes me cry. The clinic have been very good, first added a 2nd antibiotic, now changed my treatment to a more wide spectrum antibiotic temporarily. Have been on it for 4 days and not feeling much better yet (though it has helped burning down there). People in a similar situation, please tell me it's normal to have such major flare up after 14 months of treatment, and that I will be ok again! Any tips you can share for bladder pain (deep overwhelming ache in the middle of my lower abdomen and a little on the sides)? Been trying ibuprofen, co-codamol, diclofenak, hot water bottle... It drives me crazy. :*(

I’m so sorry wireless that you are having a tough time, I’m not in treatment yet as I’m trying to rule everything out first. I imagine it is still possible to have flairs as the biofilms will be breaking down?

Thank you @BottleOfSun. Hope your investigations will be ok meaning everything is fine in principle. I had ultrasound, CT scan and MRI before going to see Professor's team which showed nothing.
Yeah, I hope you are right. I have read stories of other women who have been on antibiotics for years before cured, I guess I need to be patient....but it's tough. This flare has been going on for almost a month.

I feel your pain. My treatment 'plan' has stalled whilst I'm pregnant and I'm really worried about the return of the chronic painful bladder post birth.

Thankfully bladder has been pretty quiet during pregnancy (bar two infections) which I think is because of the zero sex, booze, caffeine or baths. I had some success with d-mannose for prevention (high dose) pre pregnancy but I haven't been able to to take it during pregnancy. Have you been on cefalixin at all for acute active flare?

I'm really dreading birth kicking of my bladder again and the unweilding pain I was in before. Am planning on taking d-mannose again and possibly preventative nitrofurantoin again

@yorkshireteaspoonie, congratulations on your pregnancy! I have a 7 month old sleeping upstairs. :-) I've been on Cephalexin for over a year, including during my pregnancy. I had small-ish flare ups during my pregnancy, but overall not too bad - the clinic was amazing and really supported me through.
The current flare came on despite being on Cephalexin, I guess it's part of the recovery.

Ladies how did u get over the fear of sex causing a flair? I want to get pregnant but I literally cannot have sex because it’s a huge trigger for me! Also who do you see at HS?

Hot water bottle always soothed my pain

@BottleOfSun, people try different things. Are you able to discuss with your GP/specialist to have antibiotics at home and take them every time after intercourse? And maybe try and time sex, so that you have it 2-3 times at ovulation time rather than throughout your cycle? I've seen discussions on here about using syringes with sperm etc.
To be honest you can see any doctor at HS, they are all great. They have both female and male doctors: www.chronicutiinfo.com/treatment/conventional-medicine/uk-treatment/prof-malone-lee/

Hi @Wireless77 hope you are doing better than in March? I'm in a similar situation to you with being treated with high-dose long-term antibiotics at HS. I'm also TTC at the moment and am having only just started the antibiotics, I'm worried about whether they will deplete vitamins and/or cause gut issues. Did you receive any advise on this at all? e.g. whether to take additional vitamins to help with conception and pregnancy whilst on antibiotics? So so grateful for any advice x

@Springblooms08 , I didn't receive specific advice as such but I was on high dose antibiotics already before and throughout my pregnancy and it was fine. Just make sure you tell them you are trying to conceive and when pregnant, so they give you pregnancy friendly antibiotics. Probiotics were mentioned (I think they recommend them to everyone) and I remember looking up Optibac as their products were pregnancy friendly. I also used Relactagel twice a week (lactic acid gel) vaginally to ensure things are healthy as antibiotics kill Lactobacillus too (this was recommended to me by gynecologist as I had hardly any Lactobacillus left due to antibiotics). Other than that I took the usual pregnancy vitamins and folic acid. Always have a thrush pessary at home - do not take oral antifungals, but vaginal pessaries/creams are fine. You don't want thrush on top of a aching bladder. Good luck!! xx

@Wireless77 thank you so much - that’s so reassuring to hear. Thanks also for the tips - will look into those. Hope you are doing well now, cUTI can be so awful. Xx