23 years old, I descrive my symptoms and I present myself

[Jack96]

Hi, I’m new on this forum. I’m Giacomo, Jack or James in English language. I’m from Italy and I have 23 years old. Up to August 25th my life was amazing. That evening, during a country feast near my village, my symptoms started. During a walking with friends I felt an anal itch, with pinprick sensation in the pubis, scrotum and at the base of the penis. No more morning erection and no libido during my days and no erections during the days. But I still have nocturnal erections. Now I have pain to stay sit, in particular on hard surfaces but not too much on the sofa on soft surface. My pain are a perineal ache and felling like an electric shock that become stronger after an half/one hour that I’m sitting and it increases temporarily if I press that zone with my finger. Anal burning and electric shock like sensation with rectal tenesmus, constipation (never had it in my life), very hard poop (sorry for the last word used), electric shock sensation in my scrotum during walking sessions (don’t feel that if I don’t wear underpants), electric shock sensation sometimes in the penis, pain, heat and burning in the buttocks, thighs, lower back and perineum. My family doctor (that in your country is GP) said it's all psychosomatic. I told him of the pudendal nerve and he said that it in 30 years of work has never seen someone with my symptoms and that that nerve is naturally protected from compressions or other problem, so it’s better for me to see a psychiatrist for my anxiety. My mother, chemist, told me the same. I don’t know how to move. Can my symptoms be related with PN? In Italy this pathology is not very well known, so doctors tell you that you just have somatized anxiety and stress on your pelvic floor. Or at least prostitis. I’m very sad. No one understand me. For everybody I’m just a hypochondriac with stress. I was born without an arm, so I can't accept this new problem

[Violet M]

Hi Jack,

Well, I completely disagree with your doctor. I was also told to go see a psychiatrist and the psychiatrist was not able to help me at all because my problem was mechanical, not mental.

Maybe you could call some of the doctors in Europe to see if they know any PN doctors in Italy you could go see. There is a list of European doctors at the following link: http://www.pudendalhope.info/node/57

There is a PT from Italy listed on our website at the following link: http://www.pudendalhope.info/node/60#Italy
Hopefully the information is current. If you could be evaluated by a good PT they might be able to help you and maybe determine a possible diagnosis. Also, that PT might know of a good doctor in your country.

Please don't give up hope. I think with the right treatments you can get better.

Violet

[Jack96]

Thank you Violet. I saw that in my city there’s a woman, works as a PT with experience on pelvic floor diseases. I’m going to contact her. My pain changes intensity: one day is higher, the other is lower. I also saw on the web that in Turin (150km from where I live) there’s a pelvic floor therapy center with a medic, Rodolfo Bucci, expert in pudendal neuralgia that uses the neurostimolation of the nerve (with neuromostimulator installed on the nerve) to kill the pain. In Milan (200km from my home) there’s Francesco Cappellano, he is an excellence. I saw that he works also in the USA for this pathology. Are you healed from your PN?

[Jack96]

The PT of my city is Marina Causa. I saw also in the link you post for me

[Violet M]

Are you healed from your PN?

I am not cured but I am about 90% better. I have a great life now. Most of the time I don't even think about it anymore but I do have to be careful to avoid certain activities.

Wishing you all the best with your treatments and healing.

Violet

[Jack96]

Thank you. I’m going to see the neurologist friend of my father. I discovered he knows about pudendal nerve and I talk with him via telephone. He wants to visit me next week because on the base of my symptoms (I forgot to say that I have pain also in my legs and numbness under my feet) he thinks that it’s more probably that I can have a problem on the cauda equina (compression or cauda’s nerves inflammation). From the cauda originates also the pudendal nerve. He says it’s important to verify it quickly because with a cauda equina syndrome I have very high chances in the future of staying in a wheelchair and becoming incontinent. I had a trauma last year on the cauda equina zone (fallen from a rock a the river but after one week of pain in that zone I healed so I didn’t go to hospital but I have made a mistake) I remember so I’m scared. But I think positive because the cauda equina can be settled surgically and then recover the damage with time (the nerves will repair themselves) will bring everything back (not at all maybe)

[stephanies]

Jack,

I have a doctor who refers to PN as part of “chronic cauda equina”. I recommend, due to the widespread nature of your symptoms to include your legs, an MRI of your lumbar spine and the sacrum all the way to the end of the tailbone. Like Violet, anxiety is not a factor in my pudendal neuralgia, but if you think it may be for you, you could pursue psychiatric evaluation while further looking into the possibility of a pudendal nerve or other physical problem that could be contributing to your pain.

Stephanies

[Jack96]

Got diagnosis yesterday. No cauda equina. Pudendal neuralgia. Major (at the pressione with finger by the doctor I felt a very strong burning pain inside the rectum and in the coccyx zone) on left pudendal and just a little inflammation on the right pudendal (just small burning pain). The proctologist has give me to indication for PT with a very good osteopath specialized in pelvic floor diseases and its rehabilitation. For now no use of antidepressants or anticonvulsants, just L-acetylcarnitine and Pelvilen Dual Act with B12 vitamine. I have to use a cushion. No sitting for a long time during the days. After studying in the afternoon, at 5.30 pm, the doctor suggests me to go for a slow walking session for 45 minutes. No running or biking. Just slow walking. I can continue to go to lessons at university with the cushion with me. I have to remove some food from my diet. I can drive car but for long trips I must use the cushion also for driving. Now I have to do a neuro RMN (only in Milan and in Genoa, where I live, they have this tipe of RMN) and a study of evoked potentials of both pudendal nerves with the use of St. Marks’ electrode. I can go out with friends but without stressing my pelvis too much. I’m feeling very lucky to have received the diagnosis after just three months. In Italy medium time for diagnosis of pudendal neuralgia is 5 years, because just few doctors know this disease

[Violet M]

Hi Jack,

That's good that you got the diagnosis so quickly. It sounds like you are on the right track with some lifestyle changes that hopefully will help.

Best,

Violet