Health Organization for Pudendal Education

I have suffered with an itch in my genital area for around 20 years, I fell on marble steps & bang onto my cocxyc which is the only thing I can put this down to, damaged nerves! It has been a lot of suffering in silence, itch scratch cycle, sore broken skin. Stabbing pain, tingling, sciatic pain, pain in my coccxyc. I have seen doctor after doctor on the NHS, I have paid privately, been on many different tablets Amitriptyline, Gabapentin, Pregabalin to then be told if that doesn't work I don't know what will. They all gave me relief for a period if time & then stop working. I have been poked & prodded by many! My mum came across pudendal nerve, my own GP had not heard of this. I am now under the UCL in London, I had one nerve block a couple of years back in a different hospital which had no success (it was great all the time I was numb) once the numbness wore out & was quite a traumatic expeience. I had my 2nd nerve block yesterday which was completed very different to my 1st. It hit the nerve. Sadly I am itching once again today but I know it doesn't always work straight away, if it doesn't work I am at a loss what I will do now other than just suffer! I am due Physiotherapy in May. I was supposed to attend a pain management group / info session (has anyone been to one of these, or found them useful?) with others going through pain. I really struggle to relate my itch to pain, but apparently it is a type of pain.
I am tired of the whole thing. I have never met anyone who suffers in this particular way & if anyone who reads this does I would love to hear your story.
Adding to this I also have Vaginismus which I think is linked to the Pudendal nerve. I managed to overcome this but still experience real pain & burning with intercourse.
Thanks for listening. I am at the end of my tether now & feel very dispondant. Need to hear from others how they cope. Sharing really helps.

Hi and welcome to the forum.

Sorry to hear you have been suffering for so many years. It sounds like maybe you are on the right track now, hopefully. I went through stages where my symptoms included itching. There was a short time during my recovery from PNE surgery that it was severe itching but that slowly subsided and went away over time. I used diluted capsaicin to calm the itch at night so I could get to sleep. You have to be careful because it can burn. Also alternating very warm with very cold sitz baths helped relieve it, especially when I thought I would go insane.

Unfortunately, I don't know very many people who have had long-term success with nerve bocks but you might be one of the lucky ones. There are other options though and since it might an accident that triggered your problem, you may have some musculoskeletal issues to deal with. Your PT should be able to help you with those issues. Good luck with your PT appointment. There are some excellent PT's in the UK from what other patients have said so I think you will be in good hands.

Violet

Hi Violet, thank you, i am interested to look into the capsaicin some more, i've not heard of that. I have also had many different steroid creams/ointments. I understand what you mean by stinging / burning as I struggle to put anything where I am so sore. It has been a constant struggle, life goes on, a brave face required most days. It has been very interesting reading posts & knowing I am not alone.

Thank you,

I used a brand of capsaicin called soothenol. I probably should have diluted it a bit more than I did.

If you go to the upper right corner you can do an advanced search using the word "capsaicin" and use the author Hermajesty. She used to post on this forum and she made some interesting posts about how to manage itching. If you do that search, 3 of her posts will come up that you can jump to. She mentions some other ideas in those posts that you might find helpful. Another thing you might try is Salon Pas patches. I have a friend who uses them a lot.

Violet

Doodlebug76
i use compounded 10% Lidocaine for itching and it really helps. I leave it in the refrigerator so it stays cool and that helps too. i also use Lexapro, which is a different class of antidepressant then the Amitryptiline you mentioned. With that i take Lyrica and that may help you too. Sometimes it take two meds or more, at least till you find your cure. They may enable you to at lease let get some sleep, itch free.

i believe u r going to find your answers, forums are a great tool.
sadie

Hi Sadie, thank you for your reply. I will look into the 10% lidocaine, I will ask my doctor about it & Lexapro, one I haven't tried. It's been a massive trial & error. I'm also going to see my doctor on Tuesday as I believe I have a new itch which is driving me to distraction. Some have mentioned skin biopsy which I ferl would be worth asking for to eliminate anything else. I am at breaking point I have to admit but I have to work & I have to keep it together. I am waiting for an internal vaginal examination to see if I have pelvic floor dysfunction. So much going on. Something has to work!