Hi all,
Firstly thank you for the opportunity to join such an active, informed community here. I am finding the conversations I have been following here much more informative and hopeful than certain other websites which I found extremely depressing!!
I am a 35yo male really suffering with symptoms of PN, namely rectal burning pain, that radiates around my tailbone and deep in my pelvis. Sometimes it aches and feels like a deep claw in my rectal area and pelvis. Sitting down aggravates this and I have minimal sitting tolerance.
I became ill with a GI infection 10 weeks ago that caused proctitis and “moderate rectal wall thickening” on CT-scan. This illness also caused me to have an HSV outbreak in the anogenital area at the same time. All of that has resolved, including the rectal wall thickening on subsequent scan, but I have been left with this unrelenting nerve pain in my rectum and pelvis following this episode. Colonoscopy was normal. Something has happened to my nerve.
I wake up fine in the mornings completely pain free, the pain has improved a bit since a month ago and I can last until the early afternoon generally until the pain flares up (unless I have to sit down, driving kills me). But yesterday afternoon I had the most shocking searing and burning pain in my rectum. It felt like glass shards. But then the pain settled back down by the time I went to bed.
I finally saw a colorectal surgeon last week who examined me and believes that the rectal wall thickening I had from being sick, has caused contraction in my pelvic floor muscles which may have contracted and are irritating my pudendal nerve. She has suggested possible Botox injections.
I have gone from being super fit and active, and very social, to not being able to work and because I can’t sit down for any reasonable length of time, I have also been declining a lot of social invitations because I just can’t sit down at a dinner table without severe pain. Most of my sporting activities have had to also stop. It’s been an incredibly lonely journey.
I am just wondering if anyone has seen or experienced PN relating to an HSV infection?
Also, I have had an incredibly hard time finding any decent PN specialist doctor in Australia. I am in Sydney, I tried WHRIA which has a special interest in PN, but they told me they no longer accept male patients any more :-((
Am on amitriptyline nightly.
If anyone please has a suggestion for any Australian doctors or any other general coping advice to impart to me, I would be extremely grateful.
I am trying to stay positive but sometimes it is very hard, when my life has been so upended by this. I am trying to hold onto hope.
Thank you so much, your assistance and time is so much appreciated.