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Posts: 3
Reply with quote  #1 
This is the first time that I have joined a forum, but I am so relieved to have found this site and realise that Inam not alone with these symptoms. I first had a problem with persistent burning/nerve pain when in my early forties, I am now 65. It lasted for some years on and off. Like others, I was tested for everything going, had cystoscopies, scans etc, and nothing was ever found. Then the problem disappeared for about 10 years, what a relief. However, after a bout of cystitis a few weeks ago, the old problem has reappeared. I took a three day course of Trimethoprim which seemed to work, then a few days later the old symptoms were back, no infection found. All my pain is felt as a burning and irritated nerve pain in the urethra and genital area, which is very disconcerting and making me feel very low. My GP has prescribed 20mg Amitriptyline and I have arranged to see a urologist privately to see if he can help. I saw various urologists/gaenacologists 25 years ago, none of them offered any help or treatment then, but perhaps new things are available now. It is making me feel depressed and anxious. I would be grateful for any help or tips that anyone can give me.

Posts: 1,141
Reply with quote  #2 
Hello and welcome to these groups.  You will find lots of info on here to help and its completely understandable to feel so worried that things have come back.  I've moved your post to the Cystitis section and I'm sure people will also come back to you with what has helped them.

Firstly is your GP completely certain that the infection has gone?  A 3 day course may get rid of acute symptoms but others can linger.  Worth asking for another sample to be sent.  Make sure your urine is very concentrated and you have been off antibiotics for around 7 days as false negatives can take place.

For the burning I assume you are using something like a teaspoon of bicarb in water 3 times a day.  If sodium is an issue then Potassium citrate will also work and can be purchased OTC in the chemist.  Try an icepack between the legs to help calm things.  Looks very unsightly but frankly who cares if it works.

Secondly the nerves in the pelvic floor can be easily irritated by inflammation caused either by infection or as we ladies age, lack of oestrogen.  It could be some form of pudendal nerve issue and perhaps a short course of pelvic floor physio may help along with some localised HRT.  There are many oestrogen receptors in the lower spinal cord and pelvic floor and these need topping up to help protect the nerve endings.  Progesterone has also been shown to significantly help with nerve pain so may be worth getting a blood test over a couple of months to check hormone levels and see if your new specialist would work with your GP in terms of HRT management.  Obviously if there are familial issues with breast or uterine cancer then all options must be discussed and taken into account.

The inflammation may take time to go down so its worth getting to the bottom of what is causing it hence my query as to whether the infection has truly cleared up.

The amitryptaline should help as although its a first generation antidepressant, you need to take it at levels over 150mg for that side of things to work.  For nerve pain it has been found to work at far far lower doses and is prescribed for all sorts of systemic nerve pain now.

Additionally, do you find that you have any food triggers at the mo that make the burning worse?  If so, I'd stick to a very bland diet for a bit to help soothe the bladder and calm the inflammation.    Tea and Coffee are also very inflammatory as is alcohol so probably best to stick to very weak tea or a herbal tea for a bit.

The BHUK advice line is manned 5 days a week between 9am and 2pm so you can always pick up the phone and talk to someone about all of this.  Please don't feel isolated.

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