Health Organization for Pudendal Education

Sorry for my bad english:

I' im italian ; i suffered for pne for 4 years

interstial cystysts , chronich prostatitis fibromihalgy and finally pne was the diagnosis

my sintoms were driving me to suicide...never worked enough well

i was on valium lyrica laroxyl and integrators...with not great results..valium and lyric helps me with urinary syntoms

antalgic infiltration on pudendal nerve only reduce of 20% the pain

Last March a Doctor specialized in fibromyalgia therapy prescribed me samyr...in 1-2 monts pain decrease at least 60% and after 4 years in can sitting

The problem in that this drug ,make me terrybly depressed, anxious and derealized..i was about to go crazy so i was forced to stop it so as not to go permanently crazy.

Now, after 5 months suspension i'm still depressed an anxious even if less tha before..my life stay very difficult , pain was better of this afflictive mental condition...never antidepressant works fo the depression caused by samyr, ad in if take anxyolitics or other antianxiety drugs as lyrica , thet have only marginal effects to reduce anxiety but severly increase my depression ..only baclofen help a little as antideprerssant

I hope you can try this way for pain relief ( whether the drug will work for you) without adverse mentally effetcts

I wish you all the best

Hello wxyz. Thanks for sharing your story. I am sorry to hear you have had pain for such a long time. Are you still having symptoms of pain that are causing depression, or do you think it is mostly the effects from taking the drugs?

Do you know what might have been the original cause of your pudendal neuralgia? Did you have an incident that caused it or did it just slowly develop over time? Sometimes if you can get to the root -- like something musculoskeletal, or possible entrapment, it can help you to figure out what treatment route to take. Have you been evaluated by a physical therapist yet for some mechanical issue that could be contributing to your symptoms? If you have tight pelvic floor muscles, sometimes Botox helps. Heating pads and ice packs can also help with symptoms. I used to sit in warm/hot water to keep from going crazy from pain sometimes.

Violet

Hi Violet.

I'm sure depression was caused by samyr because now pain is much decreased..my actually problem is this terrible mental condition who does not respond to antidepressants,even though now I can walk and sit and lead an almost normal life whereas before I was almost always lying on the sofa and could only walk with difficulty

I think his pne was caused by a combination of factors: a strong period of stress, riding a bicycle and sitting in hard chairs for too long

in my case it also helps me to follow an anti-inflammatory diet free of gluten, lactose, sugars and foods rich in instamine which worsen the pain... I also suffer from fibromyalgia and trigeminal neuropathy

pelvic floor physiotherapy did not produce any results in my case

nerve blocks have priduced poors results

pulsed radiofrequency also have prodiuced poors results

Only samyr make me almost completely pain free, but the pain was better...now I have to try to see if this anxious depression continues to decrease after taking the drugs often, but it's a terrible battle, worse than the pain of pneum

Maybe you could ask your doctor if there are any similar drugs to Samyr that might provide pain relief but not have the side effects of depression. I don't know much about that drug so I can't really give you any ideas for what alternative options there are.

Violet