New/symptoms for about 6 months

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New/symptoms for about 6 months

Postby Richg » Sat Oct 21, 2017 5:35 am

Hi All,
I'm a 28 year old male, I've been having symptoms of PN/PGAD since March 2017. The first time I was sitting and began to feel intense tingling in the rectal/pelvic area essentially as if being on the edge of a sexual climax though without any sexual arousal (nothing even close to an erection). I've had similar symptoms daily since then, sometimes very strong and intense, sometimes more subtle—very few asymptomatic days. Symptoms vary daily (sometimes hourly) but include: tingling as if sexual aroused/on the verge of climax, burning, sharp poking sensation, occasional penile discomfort, pain in the buttocks muscles (always on the right side), pain/tingling down my leg starting in my right thigh and wrapping around the top of my leg, sometimes extending all the way down to my foot.
There were no remarkable physical events that could have triggered this, though it did begin during a period where I was experiencing a tremendous amount of job-related anxiety.
I am yet to see a doctor in person that has even heard of these symptoms—though I've only seen general practitioners because I don't really know what the next step is. I've had an X-ray and MRI, neither showed anything remarkable near the pudendal nerve. My doctor put me on 30mg cymbalta and 600mg nerontin. The cymbalta was prescribed for my anxiety and the nerontin specifically for the nerve pain, though I have found that my nerve pain responds very well to the combination strangely enough. Neither on their own seems to have a significant impact. The side-affect of terrible drowsiness (I drink a pot of coffee on days when I take my meds vs a cup or two on days when I don't) however is just not bearable—I can barely function at my job because all I want to do is sleep.
So I'm not really sure what the next step is for me. I know I need to find a specialist, but I'm not really sure where to go. I'm in Virginia and willing to travel a bit. Any suggestions would be welcome—thank you for reading!
Richg
 
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Re: New/symptoms for about 6 months

Postby Hopeitworks » Sun Oct 22, 2017 2:38 am

Hi,
Welcome to the forum! I am sorry to hear you are struggling, but you are not alone. Like you I also have PGAD, so I understand how you feel. My job is also in jeopardy!
I am new here as well and will try my best to offer suggestions. Here is a link to doctors in the United States that treat PN and PGAD. http://www.pudendalhope.info/node/58

You may have trouble finding a doctor that treats men and accepts insurance. That is what I have read on this site from other members.

You need a specific MRI therefore you may want to double check to ensure you received the correct one. You need High resolution MRI performed of the pelvis employing MR neurography techniques on a 3-Tesla system using multiplanar 3-D anatomical and fluid sensitive sequences.

In the mean time ice helps and medications like Lexapro, Lyrica, Amitriptyline , Ambien, Clonazepam, and Chantix.

Google images of Pudendal nerve and research how the nerves connect to other nerves. For me my S 2 nerve grew through my piriformis muscle. My doctor thinks I was born this way and as I aged it started to show symptoms. My pudendal nerve is not causing my PGAD, but the S 2 nerve is connected to the pudendal nerve. Trust me once you start doing some research you will understand what I am saying! If you have questions feel free to ask, I am sure someone should be able to help. You have to be a detective of sorts and create a checklist and check off what doesn't fit.

Wishing you well
Hope
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Re: New/symptoms for about 6 months

Postby Violet M » Sun Oct 22, 2017 5:19 am

Hi Rich,

You could also try seeing one of the PT's in Virginia who treat PN. http://www.pudendalhope.info/node/63
I was actually first diagnosed by a PT when my physicians had no clue what was going on. I think it is always smart to at least have an evaluation by a good PT because they may be able to give you some valuable information on any musculoskeletal anomalies that might be contributing to your problem.

I am one of those lucky people who is essentially cured of PGAD but I understand what you are going through because the symptoms you describe are quite similar to what I experienced.

All the best,

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: New/symptoms for about 6 months

Postby sadie » Sun Oct 22, 2017 6:26 am

rich
hi so sorry to hear all of your symptoms. If you go to a PT, I suggest not seeing the same one your GP will send you to for say knee replacement surgery etc...you need a physical therapist with a doctors degree and who is a specialist in the pelvic floor and fully fully aware of the link between pgad and the pudendal nerve.

Recently I was looking into this for a friend and the one huge hospital in Balt, only had one doctor that fit that bill on staff, and there was a 8 month back up to she him/her .

A different pt dr at a smaller hospital, had a pt doctor who has had quite a few pgad patients ,who had a 4 month back up before seeing new patients, so I would not wait to start your search, and stick to the aforementioned criteria.

hopefully that PT will know a doctor who can help u in the area . If that PT specialist, is an expert in the pelvic area and pgad, then he/she probably gets referrals from doctors that are familiar with pgad and your other host of symptoms. ...

so this is what i would do ...work back ward

1. call every hospital with a great reputation in your area and find a pt doctor pelvic floor specialist that is familiar with PN and PGAD.... and your symptoms.

write he/she name, number, and fax number in a folder and keep everything related to your getting better in this folder in one place, as you will end up with more then one doctor (already you will have your gp and the pt right??)

2. call your GP and get a referral to see that particular pt and explain to him why you need the one you selected. ..you will be able to tell your pt the name number and fax ...this will save time.

3. then call the pt office tell her the referral is on its way via fax, and get the earliest app (and ask if you can go on a cancellation list too, in case you can get in earlier).

4. You said you had and x ray and an mri ....get the reports from both and the office notes for your gp pertaining to your illness (your GP will have that all) then write a new cover letter that just highlights your symptoms and your need to be seen as soon as possible.

Do not overwhelm the pt with a long letter. Fax it all to him/her and in the cover letter , ask if there is anyway you can see you sooner then the appointment you have and tell her when that is.

in the letter , ask her/him if it is not to much trouble , if she/he could call you and suggest a doctor that sees male patients and who specialists in the issues you mentioned in your letter. do not ask a receptionist you want that suggestion to come from the PT after she gets your info, so give her time to get it and to read it.

5 . copy and print this and any suggestions you think you may be interested in from the forum like from Hope or Violet and stick them in that folder . They can serve as a check list for you .

You say you find you have to be on both of the meds you are on in combination, as just one with out the other will not do . I am on lyrica and lexapro , if i try to cut back on either, i am hit with a myriad of morbid symptoms, so i get what you are saying.

Go to 'ask a patient.com " and write in the name of the drug you think is making you so tired, and see if they are others that are experiencing the same effects ...print them out ,along with a list of the official side effects ..say , from 'drugs.com' or the sheet that comes with the meds, and take that your gp and have the drug or the dose changed . You can not work tired you will make mistakes.

As Violet and Hope say...Advocate for your self.
You can do it Rich !!!!
God bless you and all that read this and all that suffer. Sadie
2007-2010 anitriptyline for PN, 2010 it caused severe dystonia
2010 PNB w steroids caused severe PGAD
11-2010 St Josephs NH. , ketamine drip, meds etc to stop nerve from firing, nothing worked
11-2010 - 3-2011 Elliott Hosp. Pain Manag. Center , 16 PNB w/ lidocane did not work
3-2011 bilateral TG surg., w/ Dr. Conway
12-2011 3TMRI, Dr. Potter, rt side nerve re-entrapped w/ scar tissue
3-2013 rt side re-do surgery w/ Dr. Hibner for PGAD
sadie
 
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