Health Organization for Pudendal Education

Hi,
I was just wondering if this was a common symptom, especially for women. This seems to come and go for me, and I'm not sure why. I bumped up my amitriptyline to 30 mg and it went away but then came back. I am trying to drink more water and stay away from spicy foods, but I am not seeing any connections so far. This problem started for me with utis, so it is not surprising I am having these issues, I guess, but my pt said the burning with urination was fairly uncommon.
Thanks!

Hi

I have vulva burning with urination and am on Nortriptyline which masks it - i know now after 4 years that this is the irritated nerves burning as i do not have any infections.

I think Her Majesty has said in another post to check out that you do not have any infection there like thrush.

I have nerve irritation in one vulva and at the beginning of all this i was given antibiotics and various creams to solve what was basically worsening nerve irritation but it is the first line the doctors take.

I think it is very difficult to tell what is going on unless you use process of elimination. A list of antibiotics and creams did nothing for me - some creams irritated things more.

For thrush you can take a Fluconazole one dose pill which avoids the creams that may irritate - a gynae told me should get rid of it as thrush is systemic.

All i can think is that your UTI may have inflamed nerves elsewhere if you are feeling burning in the vulva or antibiotics have given you thrush.

I don't mean to be frivolous to the men who are suffering on this forum but their plumbing arrangements seem to avoid urine causing these kind of problems - a She Wee device was suggested to me which means you pee like a man but it is difficult to use. Using a wash bottle to dilute the urine each time may help - i now dab away as much urine as possible.

Drinking more does dilute the urine - 4 pints a day was suggested to me which is quite a lot to get through and then you do pee more often.

I too avoid spicy food - i think that there is a connection there with what comes out in urine.I now avoid tea because of the tannins and coffee.

Hope someone else can advise as well. Try not to worry - easily said i know as this has caused me a lot of stress.

Rosemary X

Thanks! I don't have thrush. I was tested for this and have been off regular antibiotics for several months now. I also have home uti tests I use periodically to make sure I don't have a uti. I only ever got them from sex anyway and very little of that is going on anymore. the burning seems to come and go. It's hard to tell if it's burning in my Vulva or urethra, but it last afterwards for at least a half hour. It just really throws me off. I can feel ok and then I pee and it burns again and I think...I'm still broken. I'm not getting better. I had the burning in my vulva without urination too until I went up to 20 mg. then it stopped.

Hi again

Sorry then I think that this can then only be nerves that are burning.

Amitriptyline is acting on the nerves so an increase will mask the pain. I had Gabapentin added in after 2years - i couldn't tell if it was really helping me - i find Nortriptyline dampens the pain best.

When i pee the burning lasts for some time then hey ho you have to pee again.I now have tight muscles do you ?

Sorry i have found this to be a viscious circle - i have been to some PT which i think you are going to as well and i think Her Majesty was hopeful for you to recover from this - i am 59 which may make a difference as i am told oestrogen levels affect the nerves so in your thirties you probably have a good chance of recovery.

i was initially put on amitriptyline for 2 years which in that time i was told that the nerves could recover but i found that they didn't - don't give up hope though as longer on amitriptyline for you may mean recovery.

Rosemary X

Thanks! Yes, my pt thinks I will recover. I guess I get nervous about interstitial cystitis, which nobody actually thinks I have because I don't have frequency or urgency. But my mind starts running away with me. And then the anxious thoughts start again. My pt says one side is weaker than the other. I don't know. I guess my next step is going to be am mri. I found someone locally through the boards who can use that protocol that the doctor up in my uses. But I want to wait a little longer....it's hard to know if you are getting better or not if you are still on the medication, but I am not going off the meds any time soon.

Question... If you switch meds do you have to taper off one before you start the other?

Hi again

Reading your other thread it sounds like you have a good PT who has mentioned PN to you.

I have seen several different kind of specialists was very frightened early on and still am at times so feeling nervous about all this is normal - all you really want is to take something that will just make it better - but nerves take time to heal.

I just try and piece together the bits from each specialist of my own jigsaw puzzle to evaluate what is wrong with me - you seem to be going about everything in the right way by trying conservative methods first.

I switched from Amitriptyline to Nortriptyline just by replacing one for the other as they are very similar- if you are given Gabapentin it has to be tapered up and down gradually.Often Gabapentin is given with amitriptyline together.

If you come off any of these drugs Ami,Nor and Gab you have to taper off slowly but i am sure you will be advised of this.

I hope that your PT understands the medication side of things alongside the therapy to help you with levels of drugs.

One other thing i do is to wash the vagina/vulva area with water only from a shower head - don't use any soap, shower gel etc that may irritate as well as the urine. The vulva pain society website has some selfcare tips which you may find relevant.

I am in the UK - you must be near my time zone to be replying. Hope that i am being of some help.

Rosemary X

Sarajoy,

Is the burning from the actual act of urinating (i.e. pain from the bladder, urethra as the urine passes) or from the urine touching the surrounding skin? There were times when I had burning as the urine touched the areas around where it came out. If I urinated into a cup or stood up to urinate, it would not touch the surrounding skin and would not burn. If this is the case for you, I found that some Aquafor on the skin helped create a barrier between the urine and the skin tissue and minimized the problem for me.

Sincerely,
Stephanies

Hi

Having just read Stephanies post to you i just wanted to say that i have been posting to you about urine touching the vulva skin.

Vaseline petroleum jelly was recommended to me by the doctor to waterproof the skin which i used for a while but afraid my vulva nerves are now very oversensitive.

Rosemary X