Still waiting...

[ebclarkey]

I had a small urological operation in September and, a few weeks later, I started experiencing pain around the pelvic area, groin and pubis . I have been back to my urologist and also seen his colleague - both of whom are unsure as to why I'm still in pain. In desperation I saw a physiotherapist who suggested I may be suffering from Pubis Symphysitis. I looked this up on google and it seemed to tick every box on my list of symptoms. I have since been in contact, yet again, with my urology surgeon and he is now referring me to an Orthopaedic Specialist. I am so demoralised now and , 4 months on, I still don't know why I'm still in pain, not showing signs of getting better and I can't get on with my what once was very active life. Any suggestions would be welcome please...

[JannyLob]

Since Pudendal Neuralgia is a rare condition, no one really knows what to do. But I went to a pain clinic & they diagnosed me after 2 years & 4 months of TESTS in Boston. I’m in Florida now & finally got an answer. Going to have some PN nerve blocks done then I can hopefully have a PN Decompression surgery to free the nerve. You’re not alone. Hope you can find some relief. It is awful living in this constant pain! Best wishes! XO

[jenmal]

Hi ebclarkey, sorry to hear about your pain, it’s very frustrating to live in chronic pain and especially if you were active.. but you are not alone. So many people out there are looking for answers. What I learned is it’s paramount to get diagnosed quickly and start treatments. Sometime we rely on doctors but these days Google and your gut can be your only friends in terms of diagnostics. If your symptoms and PT suggestions relate then pursue treatments available and do everything to get better. I was in unusual pain that was worsening quickly and my doctors had no idea what it was, I googled and realised I had PN straight away and demanded drugs for nerves and they gave in, despite not knowing much about it. Then I saw a pelvic consultant quickly privately and got diagnosed on the spot and confirmed my google search. Despite me being devastated with such a diagnosis I was able to get treated early and apparently have better chances to calm the nerve down. I do not think you have PN, it’s more likely what your PT told you, every surgery carries risks and in pelvic area especially, as it’s all connected there. But please don’t despair, keep us updated how you get on and I hope you get better soon and get your active life back. Best wishes