PN/IC/PGAD Weighing options on where to go and need advice.

[LindseyD]

Hi e veryone, I have been a member for a while but I do not post often. I am at a cross roads unsure of what to do. Here is what's up. So I have IC, PN which also causes thigh pain for me and object feeling sometimes in vagina,clitirus issues/pain,and pgad. (Also lyme disease and mycoplasma). I have seen Dr.Echenberg in PA and been on meds for months,had a nerve block by him. He is now suggesting I come back for more nerve blocks and botox. However, I have heard of Dr.Prager in California who is an excellent pain management dr. Who tremendously helped someone else who used to come on this site. I am considering traveling to see him. I don't want to do the wrong thing. If you have PN is it necessary to travel to see Dr.Hibner and be looked at for possible surgery? Is it wise to see a pain dr.who is wonderful,but in reality would be masking the pain but not the problem? My left labia show's swelling on MRI. Ive had procedures that I believe caused some of this pain. I realy want to see dr.Prager. just not sure what to do. Any advice?

[Violet M]

Hi Lindsey,

I'm not a big fan of repeat nerve blocks other than for diagnostic purposes or unless you are seriously considering surgery and need the series of 3 blocks first. Did your first nerve block help much? Botox might help temporarily if you have tight muscles but you would probably want to try trigger point injections using something like marcaine into those muscles to see if it helped first. Also, Botox is a temporary treatment that wears off in several months.

If you think your PN is related to lyme disease rather than a nerve entrapment I'm not sure there is any point in you going to see a surgeon like Doctor Hibner unless you want to gather more information on the exact diagnosis. Does your history point toward a likely entrapment with ligament issues? If not, I think it is entirely reasonable for you to go straight to a pain management doctor like Dr. Prager for pain control purposes. Whatever you decide, I wish you all the best. I would be very interested to hear how things go for you if you try the pain pump.

Violet

[LindseyD]

tha n k you,Violet for response. Things got a lot worse after having my femoral hernia repair and while I don't know for sure, I think that may have been what caused my PN. I can sit a little,but usually put most of my weight on the other side. The longer is sit even with weight mostly off pudendal nerve my thighs hurt and sometimes feel numb. When I saw dr.Echenberg, he gave me the nerve block and at the timethe nerve didn't hurt too Bad so couldnt tell if it helped.
I think lyme only adds fuel to the fire. I had vaginal tingling after a cystoscopy for bladder pain,and things got worse after that,surgery in bladder and especially femoral hernia repair. So those are the only things that I suppose could have caused it.

It's just a bug decision to travel to see Dr.Prager or a PN dr. Or the big PGAD dr. DR Goldstein.

[LindseyD]

But after Dr.Echenbergs preferred PT gave me some really strong internal work on PN,it flared the clitoral area to have pressure there all the time instead of just rarely. So I do feel that my PN is definitely effected. I can no longer be intimate with my husband because of Pudendal Nerve hurting even more when we begin.

This is why it's hard to know to seek out a PN dr. Or Pain Dr.like Dr.Prager.

[stephanies]

Can you talk to Dr. E. about what flared your pain and ask his advice on how to proceed? Also, if you plan to discuss the pain pump with Dr. Prager, you should probably try to set up a phone consult first to see if he thinks he can help and, if you are a distance from his office, if he works with out of town patients in the way that you need.

Stephanies

[Violet M]

I don't know, Lindsey. Internal PT flared me up really badly prior to PNE surgery too. Do you have any idea what type of treatment Dr. Goldstein would recommend as opposed to what Dr. Prager would do?

Violet

[Fia]

hello I am new to this site and have just started reading. I am surprised to find so much information and understanding. I have been suffering for years and misdiagnosed. Only recently after researching online did I find such a thing as the pudendal nerve. I live in Cincinnati Ohio and would like to get a firm diagnosis in order to seek more aggressive treatment. From what I can gather surgery is considered only after conservative treatment yet surgery seems to be the most long-term solution. I would like to know if anyone can suggest a doctor who would be able to accurately diagnose PNE. I had a nerve block done for diagnostic purposes and had relief for the first time in years. I have read there are very few doctors or centers and wonder if anyone could recommend and or share what or who is currently specializing in PNE so I can begin the process of getting help. I am beyond grateful to have found this site.

[April]

Fia,

Welcome to the site. The site's list of pn-experienced physical therapists includes two who are in Cincinnati, so you could start by making an appointment with one of them. They also might have suggestions for doctors in the area who could evaluate you.

April

[Violet M]

Hi Fia,

You can access the list of PT's and doctors from the homepage on the left-hand menu at http://www.pudendalhope.info/

Violet

[stephanies]

Hi Fia,

Who did your pudendal nerve blocks? Were they guided? Maybe that doctor can help point you in the right direction.

Stephanies