New and hoping to get some answers

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Vjera
Posts: 18
Joined: Sat Jun 27, 2015 10:33 am

Re: New and hoping to get some answers

Post by Vjera »

Hello everyone!

Unfortunately, I've got shingles. They appeared on Sunday and now hurt so much.
I didn't have them any time before. I was wondering if this virus is somehow responsible or contributing this PN symptoms that I'm having.

I'm thankfull for every info! :)
Last edited by Vjera on Mon Apr 18, 2016 8:38 pm, edited 1 time in total.
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Violet M
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Re: New and hoping to get some answers

Post by Violet M »

Vjera, I kind of doubt the shingles would make you have to postpone the testing but I can't say for sure. Have you notified your doctor? There are medications they can give you to calm them down.

I don't know if shingles is the cause of your pudendal nerve pain -- maybe one of the contributing factors? Often there is more than one thing that triggers pudendal neuralgia.

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.
Vjera
Posts: 18
Joined: Sat Jun 27, 2015 10:33 am

Re: New and hoping to get some answers

Post by Vjera »

Little update. I had SSEP testing of pudendal nerve and it showed abnormal activity. The right side didn't react at all on stimulation. Doctor said that both sides are damaged but more on the right.

I still have problems with urinating and pain/pressure at vaginal opening. The new symptom is rectal burning after bowel movement.

Don't know what to do next.
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Violet M
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Re: New and hoping to get some answers

Post by Violet M »

Are your symptoms more on the right? What treatments are your doctors recommending now?

If you already had shingles in the pelvic area then I think you could consider them to be a possible cause or trigger of your symptoms but if you already had pelvic pain before you ever had shingles then it seems unlikely. If you feel like the shingles are what triggered your PN then treating them, building up your immunity, and lowering your stress, etc. are really important. Have you gotten the shingles under control yet?

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.
Vjera
Posts: 18
Joined: Sat Jun 27, 2015 10:33 am

Re: New and hoping to get some answers

Post by Vjera »

Thank you Violet for your reply!
My symptoms are both sided. Neurologist sent me to check up my LS spine and MR showed some stenosis in level L5-S1 on both sides and in level L4/5 on left side. I have to go on urodynamic testing and they will decide what options do I have. The only option I have is pain medication because in my country not single doctor is treating this condition.

Luckily for me I live near Austria so I have possibility to visit dr Aszmann if he still treating patients with pudendal nerve damage.

My biggest problem is difficult urination and nothing seems to help.

P.S. I don't have shingles anymore.
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Violet M
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Re: New and hoping to get some answers

Post by Violet M »

Vjera, did you already try an antidpressant -- a tricyclic or an SSRI -- for the urinary symptoms? For me lexapro helped the urinary symptoms to improve by about 75%. Now that I had PNE surgery I don't need the drug anymore but it was very helpful at the time when my symptoms were bad.

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.
Vjera
Posts: 18
Joined: Sat Jun 27, 2015 10:33 am

Re: New and hoping to get some answers

Post by Vjera »

Violet, did Lexapro helped you with frequency or retention?

I have retention and very weak and slow stream and neurologist told me that antidepressants will make my problem worse. :(
I wonder if that retention and weak and slow stream is caused by bladder or urethra. I'm waiting for urodynamic testing and maybe I'll be smarter after that. I'm also considering option of self-cathing because this is horrible and I'm afraid that this retention could cause more health issues.
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Violet M
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Re: New and hoping to get some answers

Post by Violet M »

You are right, if it's retention then SSRI's would not be good. Sorry, you probably already said that awhile back and I forgot. I guess the biggest problem with self-cathing is the risk of infection and it would be a bit of a hassle but most likely you would become skilled at it very quickly.

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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