New and desperate for help - please!

[desperate]

Hello - please refer to below messages to understand my symptoms, tests I've done etc.

I edited this post and deleted the information here (by accident)

[Roobah]

The first thing to do is STOP SITTING. Immediately. Lounging, etc. OK. And absolutely no bike riding. If he does sit he should sit on a cushion that has a hole cut out to relieve pressure on genitals, etc. You can cut one of those gardening kneeling pads to make it "U" shaped. Or buy a "Waffle Cushion" - it is a brand name - from Amazon. I think there are some examples on this website.
Then he really does need a diagnosis, especially the latency test.
Check this website for MD specialists. It is very hard to find one that is geographically accessible. I am struggling with that now. Nonetheless, an accurate diagnosis is crucial for early intervention, and to rule out other medical disorders.
It will be lifestyle changes, medication, and nerve blocks that are the most likely treatment to the best of my knowledge. I myself wouldn't do acupuncture at this time because you don't know what nerves are damaged - if it has spread - and acupuncture is sticking needles in nerves. It is often pain clinics or obstetricians who give nerve blocks. You could try a pain clinic.
He really does need a thorough, competent, medical evaluation. I could be wrong, but to the best of my understanding, numbness in the right hand is not consistent with PN. Those are different nerves. Or maybe he just happens to have 2 things wrong. So he really does need accurate diagnosis. Contact any of the specialists on this website to rule in or out PN. Note though that Minnesota no longer has a specialist. Dr. Antolak retired.

[janetm2]

Check the homepage for list of doctors and PN aware PTs. We usually try PT to see if muscles can be worked on to help and PTs can be provide some good info. The FAQs on the homepage list what to get tested for and rule out and types of tests to help wwith diagnosis. There is also I think one place in Canada has doctors who can do tests (forum has a section and again doctors listed off homepage) to get info on local resources. We generally try to leave surgery for last because there are less invasive choices, it is a long recovery and more importantly he may only have PN or something else (hernia, tarvlov cysts, and labral hip tears have similar symptoms). Best of luck.
Janet

[desperate]

Thank you both for your time and help.

Update: the numbness was from medication he was on for the prostatitus misdiagnosis...

Does it seem strange to anyone familiar with PN symptoms that he has no urge to urinate? I see this is common in cauda equina syndrome but he does not have lower back pain to go along with the symptoms...

I feel as though I should also mention, we are using you all as our guidance in this. Simply because I'm 22, he's 26 and our parents are just not understanding, I admit it took me a while to understand the desperation he is in. We've never had to deal with a medical issue such as this on our own and we feel lost...

[janetm2]

The FAQS I think or the homepage have a symptom list. I am not up on all the related symptoms but the nerve covers the territory of the symptoms from rectum to penis so constipation, urinatiin, etc. Some of the others will undoubtedly come along to fill in some more info for you. If it is PN or PNE this may be one of your best resources. Sadly most doctors do not have any knowledge of this but can help you with cauda equina another issue I have seen on here and to be ruled out. We are here to guide and thanks for letting us know the numbness was from the medication. Keep asking questions and we will do our best to help. You and your fiance will need to make the decisions but we can tell you our experiences or what we have seen from others. If he has pain there are a list of medications (FAQs) to try to give some relief while you figure out what is wrong.
Janet

[stephanies]

Hello Desperate,

Welcome to the forum, I am sorry your fiance is suffering so much right now. You mentioned that coping with this pain is not an option for him right now. I understand that stress and anxiety can make pain worse, but these things can also make it more difficult to make good treatment choices. For many of us, patience is critical for dealing with PN issues as there is rarely a quick and easy answer to the pain. We wait to see the right medical professionals, try different medications, and work with a physical therapist over a period of time. Is there a doctor or other professional he is comfortable talking with to try to get some of the anxiety under control? There are also many on here who can likely offer suggestions for managing/coping with pain. Also, Dr. Conway in New Hampshire is a good choice for a full evaluation and treatment suggestions and he is likely the closest PN doctor to you geographically.

Sincerely,
Stephanies

[desperate]

I have a question for you all...

He has lost all hope - he has given up, he spoke to Dr.Andrew on the phone who is extremely knowledgable and not afraid to hide the truth which I respect him for. He said this will forever be chronic and sure the pain can go away but one small move and it can return.

Now my question...with the surgery, the PT, etc. does this only mean pain is gone? Or does functioning of the body come back....at all?

[blightcp]

I'm sorry both of you are going through this, if I did not have the support of my wife I could not imagine going though this.

Accupuntire did nothing for me, but I did find value in getting to somone who can design suppliments to help with the healing process. The longer you fight PN the more you body will deplete itself of some key compounds for nerves.

The best site for this I found was http://geronova.com/

Numbness is one of the major symptoms of Nurontin/Gabapentin and Lyrica, esp if he has just started the medication. Also I can only sleep in one position so I can get the arm falling asleep from time to time.

Also try changing underwear types, sometimes that can help depending on the day I'm having.

I also have had some of the genital problem you mention and for me they have slowly been getting better not completely but noticeably better.

Unwanted or spontaneous genital arousal can happen sensory nerves run on the surface of the nerve, and they can do weird things to the PN, it can be very difficult to have things behaving like you are 14 again.

I hope this is helpful and feel free to PM me if I can be of any help

Carl

[stephanies]

Hello Desperate,

I think that the results of any treatment, including surgery, vary widely depending on the individual and what is actually causing his or her pudendal pain. No treatment is guaranteed to make someone pain-free or function completely normally. We all strive to be cured and while a few get there, many people become well enough to resume their lives and not think often about their pudendal nerve. You are doing everything you can - seeing professionals who know about PN and gathering information about your options. Please try not to panic and stay hopeful.

Sincerely,
Stephanies

[heidiloft]

Hello there....I am so very sorry that you are both feeling lost and hopeless.I think that I can honestly say that all of us who suffer from pn have felt that way many times.As everyone has mentioned here it is pertinent that your fiance get a proper diagnosis.After you have received that then you can move along with a treatment plan. Conservative therapies are always used first...physio,medication,nerve blocks.Surgery is really the last step should all the conservative treatments fail to help.I realize that you are truly desperate.Seeing a loved one go through tremendous pain is so very hard on the heart.I must tell you that I am a Canadian woman living just outside of Ottawa,Ontario.I would be more than pleased to share my journey with you and avail you of a wonderful pt to get you started.I have also been to see Dr.Conway out of New Hampshire where I received my diagnosis.Perhaps you could go to the control panel and personal message me and we could chat further.Please don't lose hope....we are here to help each other.Hope to hear from you.Blessings and prayers,Lise