Undiagnosed and desperate

Hello, I'm a 32 year old female and I have suffered with reoccurring UTIs all my adult life.

About 6 weeks ago I got the UTI symptoms and started antibiotics as usual but it didn't go, to cut a long story short after 4 different antibiotic courses and 4 clear urine cultures it was still there. I have also been cleared for all STIs.

My symptoms started with abdomen pain accompanied by urethral pain, this progressed to vulva pain mainly at the front with burning and strange temperature sensations which soon crept up and into my thighs and buttocks. This felt nerve related. Over the last week it varies day to day but it has crept into my lower back on one side.

I feel very uncomfortable and lost, I have been referred to a urologist and I intend to go private to speed this process up as I have a demanding job and can't afford for this to keep effecting it. I think it is pelvic related, can anyone relate to my symptoms or offer any advice?

Most appreciated and thank you for reading, I'm feeling very low.

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9 Replies

  • If you are UK a based then you need to see Professor James Malone-Lee in London....

  • Hello,

    sorry to hear about your Problems and your pain. My pelvic pain started in a similar fashion. If you go private, make sure you find a doctor who knows about pelvic pain. My urologist didn't! If you are in or near London, you could try to get to one of the phsyiotherapists who specialise in pelvic pain. It's very important to loosen the pelvic floor.

  • Hi 45 Willow,

    I'm new to this site and happened to see your post. I was wondering if they test you for UTIs and have a positive reading?

    I may be completely off target here? I was just wondering because I kept feeling like I had a UTI but my urine wasn't cloudy like a normal UTI, my urologist asked my symptoms. When I told her it felt like a bladder infection, she said I have Interstitial cystitis or IC. I have a very mild case, guess it can get really bad with all kinds of other symptoms. If you have bladder pain, urgency, go often you may want to look this up. There are medications that helped me and changing your diet can help therefore is an IC diet.

    Hope you get better soon!


  • Hi 45Willow,

    I wanted to add, that the new pain in you legs, thighs, vulva, etc. that feel like nerve pain, could be? Have you ever looked into vulvodyna (with unprovoked pain) formerly known as vestibulitis? If not, you may want to look online at a reputable website. I know it affects women in their 20s and 30s most often. There may be little or no visual problem, but the burning and pain are real and can be in all the areas you described. It can come on suddenly.

    I'm not a doctor by any means, I have suffered from severe chronic pelvic pain for 12 1/2 years. I have done tons of reading and research, see doctor after doctor, had every test, imaging, treatment possible over the years. I noticed in another reply someone mentioned pelvic floor muscle spasm, which could also be part of the problem? I have been seeing a pelvic floor P.T. for years.

    I guess when I saw your post IC and vulvodyna came to mind. I know in the pelvic region, it seems to start off as one problem and if they don't address it immediately, it can turn into several problems. It is great that you are being proactive in your healthcare!

    I know how it is to feel desperate and needing answers. I have lost many things because of my pain and don't want anyone else to go through what I have. Keep your head up and I wish you the best of luck in finding a solution! While I hope you aren't diagnosed with anything,, I hope I was at least a little helpful.

    You strike me as a smart, strong woman. Make sure to be your own advocate with the doctors, it can be challenging to find the right ones to help.


  • I am under Professor James Malone -Lee.....all my UTIs tests where negative.....however he will tell you if it feels like a UTI then it is.....he is a Professor of microbiology so really understands bugs and the antibs required at what dose and how long. My PN/PGAD is greatly improved since starting with him......he does not agree with the IC diagnosie that is handed out so freely.

  • Thank you so so much for all your replies. I really appreciate your time and kindness.

    To answer a few of your questions, in the past when I have had UTI symptoms the doctors have always just checked with a dipstick for blood which was present but they have never cultured it so I guess I don't really know. I have done a lot of reading which is scary as there are some horror stories but I want to be prepared for my diagnosis.

    I have read up on Vulvodynia, I suspected this for a while but now the pain has moved to my lower back in a big way so I'm guessing it's not that, although I am still experiencing some vulva pain. The pain seems to move and the symptoms change.

    I did and still do suspect I may have IC which is why the doctor has referred me to see a urologist. I hope I don't have this but right now just having a diagnosis would be a relief!

    I started taking D-Mannose which seems to have eased my lower urinary tract which is great. I have never had back pain like this though, still suspect it is pelvic related, does anyone know what my best way forward is to get my pelvis checked out? Do I need a physio therapist to examine me?

    I have tried to contact the professor James Malone-Lee but they were unable to help me book in, I will try again tomorrow.

    Thanks for reading.

  • Hi, my pain started in exactly the same way.i kept going back to the doctors and having samples tested which all came back clear.I saw Dr Greenslade in Bristol who said it sounded like irritation of the pudendal nerve and get refered me to Mr Dixon also in Bristol. he says it's all down to having tight pelvic floor muscles even though I have a prolapse!

    I suggest you try and see Dr Greenslade if you can and also find a good pelvic physiotherapist.mine has helped me immensely.

    Where abouts in the U.K are you?

  • Thanks for your reply.

    I've heard of Dr Greenslade in my research.

    I live in Tamworth in the Midlands.

  • The physio I see is in worcester,if you want her details let me know x

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