Health Organization for Pudendal Education

Hi everybody I am Italian and new to this site. In Italy we used to have a similar forum but it has been closed. I am here trying to find some answers. My adventure started late November, I thought I had a bladder infection. The only symptom was frequency, no pain when urinating at all; after three courses on different antibiotics I tested urinee , vagina and urethra, no germs at all. Then pelvic pain started, in the form of painful contractions of the bladder (I had to do pee every ten minutes. Relief came from diazepam. PT and doctors found contracted muscles in the pelvis with several trigger points. After seeing different doctors the diagnosis was pelvic pain with involvement of superficial branches of pudendal nerve on the right side. The diagnosis was based on clinical symptoms only. To make a long story short, doctors stopped use of diazepam and started treatment with amitriptyline for neuropatia pain. Since then, in three months I am almost invalid. The urgency is almost over but I have an awful pain in the coccyx and only some burning sensation at the vulva, not really a pain. I haven't gone surgery of any type, no sport activity such as byking or weight lifting, no child birth, no trauma. Pelvic RMN revealed a coccyx slightly horizontal for an old fall when skiing , at least 10 years ago. No risk factor but staying in sitting position for 8 hours at work. I am struggling with my diagnosis: do I have PN or pelvic pain? No pain in the anus, vagina etc. can this be enough for a PN diagnosis? It seems in Italy there is no doctor able to differentiate between the two. I undergo physical therapy for my pelvis and take some antinfiammatori drugs which helps a bit for the coccyx pain , and still on amytriptline (low dose) but I feel I am not on the right path.
Does anyone any suggestions? I feel lost and alone, I am sure you know what I am talking about. Forgive my English It is not my mother language. A bit thanks to all of you in advance!

Hi Angioletta,

Welcome to the forum. Unfortunately, it is really difficult to determine whether you have pudendal neuralgia that is causing the pelvic floor pain, or whether the pelvic floor tension causes the pudendal nerve to be irritated causing pudendal neuralgia. I have seen many discussions about this -- which came first, the chicken or the egg? Either way, pelvic floor PT is typically tried early on to determine if the muscles and the pain can be calmed down that way. I'm not sure what a pelvic RMN is. I'm assuming you had some kind of imaging done -- maybe what we call MRN (magnetic resonance neurography) in the US?

How far are you from Dr. Bautrant in France? He is extremely knowledgeable and might be able to help you figure out what your diagnosis is. In my case he was brilliant.

Violet

Ciao Violet,
Pleased to meet you and thank you for your reply. RNM was the Italian acronym for a simple nuclear magnetic resonance. It was done to exclude Tarlov cysts. I read there is a 3tesla equipment able to assess nerves, some physicians here required it with a EMG to confirm diagnosis, I still have to undergo both procedures.
Beatrau is not so far, I live in Milano, north Italy. I guess he has never ending waiting list though, but I will try. I will let you know.in your opinion, how many PT treatments do I have to undergo before understanding if they are beneficial? I had 8 treatments (release of TP, similar to Wise Anderson protocol) and some times I felt better, other times pain was worse.
Thank you in advance for your advice

Hi Angioletta,
I post this to inform you that there is a new website in Italy and a new forum where you can find information on treatments, exams and physician. Good luck

angioletta wrote:Ciao Violet,
Pleased to meet you and thank you for your reply. RNM was the Italian acronym for a simple nuclear magnetic resonance. It was done to exclude Tarlov cysts. I read there is a 3tesla equipment able to assess nerves, some physicians here required it with a EMG to confirm diagnosis, I still have to undergo both procedures.
Beatrau is not so far, I live in Milano, north Italy. I guess he has never ending waiting list though, but I will try. I will let you know.in your opinion, how many PT treatments do I have to undergo before understanding if they are beneficial? I had 8 treatments (release of TP, similar to Wise Anderson protocol) and some times I felt better, other times pain was worse.
Thank you in advance for your advice

Hey Angioletta, I visited Beautrant at the start of this month. I had my appointment since the end of december. This makes 3 months max to wait, but I think the fact that you are not french and a woman (he's a gynecologist) can speed up your waiting time to a month and a half if you ask.

Hi Rob73 and chenonceau, just sent an email to Dr.beautreau , trying to have a visit. Thank you for your advice, I will keep you posted.
Thank you for your advice

You're welcome angioletta.

Hi Angioletta, I'm italian too. There is AINPU forum (http://forum.ainpu.it/) but not bery useful in my opinion....

Ciao Gabriel, may I ask you who is your doctor presently? Dr .porru (Pavia) once excluded Ic Or any other bladder desease left me down with the advice to refer to phisiatric expert first and then to a pain management centre. Basically I do not have any expert taking care of me at present. Thank you!

angioletta wrote:in your opinion, how many PT treatments do I have to undergo before understanding if they are beneficial? I had 8 treatments (release of TP, similar to Wise Anderson protocol) and some times I felt better, other times pain was worse.

Well, it's hard to say for sure. One of my friends was told by Dr. Wise that you should be able to see improvement after 6 sessions if it is going to help, but there are PT's who recommend more treatments. I think I tried about 12. The internal work made me worse. Some of the trigger point therapy gave me very short-term relief but the pain would return as soon as I sat in the car to drive home so I gave up on it.

Violet