Health Organization for Pudendal Education

Candyfloss

I have to repeat what others have said to you, if you want to print out details from this site or ask your parents to read some threads they may be more understanding than you think and the same goes for your GP. I am sure your parents can already see that their precious daughter is not as happy as they would like her to be.....that is how parents work after all! Trust in their judgement and their love for you.
There are many options when you are in school or college, you can take in cushions discreetly or choose to stand or lie for lectures...many disabled people attend school and colllege.

If you want to email me please feel free to do so, I am a Mother and would worry for you if i was your Mum or Dad.

Hi Amanda thank you for your concern, I finally told my parents who were very supportive and my mum took me to the hospital who gave me cocodamol and a gel called instillagel. It helped a bit with pain but shes booking an appointment with a specialist who will hopefully be able to help me.

Hi Candy, I am so glad that you are getting some help for this at last! Which specialist are you going to see?

And could I suggest that you go to your GP, as well? There are many meds that are helpful for nerve related pain, and your GP is the best person to help you.

Could I also ask about the instillagel? - Are you using it for self-catheterisation? - or is it being used to anaesthetise sensitive areas? And did it help? The reason I ask is that I am looking for alternative ways to deal with the symptom of PGAD, the genital arousal feeling which you had at the beginning. Many of us have this problem - including me.

Hi Candy

I am so glad to hear that you have confided in your mum and also that you have seen a doctor.....I have used instillagel for years, it does help to numb the area for a short period of time.....but it does wear off. Have you tried using ice on the area? The secret is to use it wrapped in a cloth to protect you from ice burn, my personal choice is to use it via a frozen plastic drinks bottle and wrap it in a cloth...my choice is a 200 ml coke bottle as the contours of this bottle suit my own contours.
Cocodamol is a good choice to numb things, i use it daily and while the side effects make me dizzy I use this time to lie on my bed with my ice bottles and generally fall asleep for a little while.

Hang in there please.

Sorry for taking so long to get back to you. I went to see a gynacologist and explained my pain and everything and I just received my results back today which she told me I was clear from everything which puts me back to square one! She said the pain could be due to sanitary towels or perfumes which I could be allergic to but I've changed them and it didn't seem to help. Basically I went to A&E and the Doctor was very generous and gave me three tubes of instillagel which did numb the pain slightly and takes about twenty mins to work so I definitely recommend this. I was also wondering if anyone experince the urge to go to the toilet aswell as the pain?

Candyfloss223 wrote: I was also wondering if anyone experince the urge to go to the toilet aswell as the pain?

Candy, it's a very common complaint around here, unfortunately.

I attend a doctor in N Ireland who at the moment is treating me with botox injections after lots of other treatments have failed to releive my pain. Botox has worked for the last five years but the last two have not been successful. I have been having horrendous pain for nine years following a labiaplasty on my left side only, my whole life has changed, my sex life has disappeared and am so depressed and tearful being in constant pain. No one has diagnosedme with anything as no one knows why I'm in pain, I have loads of other symtoms too like urgencey to go to the loo with intense burning and numbness, stabbing, stinging, extreme senstivity (just to mention a few) so much so that underwear is most of the time impossible to wear as all this pain revolves around my vulva . Everything was fine until I had my labiaplasty (completely unnecessary, just a whim on my part) and as soon I opened my eyes after the operation I was in intense agony and have been ever since.

I am now trying pregablin with no sucess as yet. I am so desperate for an end to my pain as it is completely disabilitating and my enjoyment of life is very low. I would welcome any suggestions from anywhere as to what I could do

I'm sorry to hear you are in so much pain and that Botox is no longer helping. Your symptoms sound very similar to what so many people describe on this forum. Unfortunately, we have not heard of any doctors in Ireland who treat people with pudendal neuralgia but there is a physiotherapist in Dublin who might be able to give you a proper diagnosis and guide you to the right doctor in your country. Her contact info is at this link.

http://pudendalhope.org/node/60#UK_and_Ireland

If she is too far from you, maybe you could give her a call and she might know someone closer to you who could help you out. Otherwise, you may have to travel for treatment as so many of us have. If you have not tried ice yet you might find it helpful in relieving the pain at least for some temporary relief part of the time until you get the proper treatment.

Take care,

Violet M

Thank you so much for your kind words, you have been a great comfort to me. I was thinking of visiting a plastic surgeon for a consultation only, to see if he/she can help me or if not a least guide me in the right direction. My surgery was done by a very experienced ob/gyn but he amputated my labia! instead of reducing it. If only we could turn the clock back, self mutalation would not be part of my life but sadly its impossible for anyone to do that so we just have to learn to live with the consequences no matter how hard it is.
I will keep checking in with you on a regular basis as some sort of mircle drug might be developed, fingers crossed
Best wishes and king regards to everyone x

Tiger Lily,

Would you be able to go to the PN specialists in England or France? As I'm sure you will have read, they are located in London, Bristol and Manchester, and there are people who write on this board frequently who can help you with the right steps to take if you want to do this under the UK NHS.

Please do not think of what happened to you as self mutilation. This was done to you by a surgeon, you did not cause it to happen. The surgeon did not follow your request, which resulted in terrible harm to you.

Are you taking any medications besides pregabalin/lyrica? There are many on this board taking an antidepressant along with an anticonvulsant.

Please do keep checking back here for help and information. It does help if you say what treatments and medications you have already tried.

Best wishes,
Jeanie