PN my story.

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PN my story.

Postby Rob73 » Sun Feb 05, 2017 10:16 am

Good morning,
Sorry for my english.
Here's my story.
2014 surgery for fissure, i woke up with great pain.
2015 I underwent another surgery due to a fistula in the same place.
Pain increased. I couldn't sit down due to pain.
Thank's web I thought to PN and looked for a physician who diagnosed PN and vulvodinia (no exams required).
He prescribed me lyrica and rivotril, therapy, vitamina and supplemento.
Up to now no pain relief. The pain seems to spread through buttoks and legs.
I feel burning, pain and stabbing in the perineal area.
He added cymbalta but i'm frustrated due to no improvments.
Can you suggest me a path to follow.
Thanks.
Rob73
 
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Re: PN my story.

Postby stephanies » Sun Feb 05, 2017 10:23 pm

Rob73,

You should see a doctor who can examine you and try to determine the source of your pain. Possibly a neurologist, urologist, colorectal doctor, or obgyn. Hopefully that will provide you additional information. Have you found anythung that helps with your pain?

Sincerely,
Stephanies
PN started 2004 from fall. Surgery with Filler Nov. 2006, Dr. Campbell April 2007. Pain decreased by 85% in 2008 (rectal and sitting pain resolved completely), pain returned in 12/13.
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Re: PN my story.

Postby Rob73 » Mon Feb 06, 2017 8:42 am

I was examined by 3 neurologists with the same diagnosis but without any specific exams as they told me no exams are reliable in confirminig PN. Nothing at the moment seems to help me in diminishing anal burning. I now feel pain in buttocks and legs.
Rob73
 
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Re: PN my story.

Postby Andy_Pablo » Mon Feb 06, 2017 11:27 pm

Ask your specialist about a pudendal nerve block. This is useful in terms of diagnosis... I wish you good luck in your journey.
Credula vitam spes fovet et melius cras fore semper dicit...
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Re: PN my story.

Postby Violet M » Tue Feb 07, 2017 4:56 am

Rob,

There are 3 branches of the pudendal nerve -- the inferior rectal, the dorsal clitoral (women)/dorsal penile (men) and the perineal. The inferior rectal branch can come off of the main trunk of the pudendal nerve in different places along the nerve for different people. So, it can be difficult to make a definitive diagnosis especially it it's the inferior branch, because of the variations in the anatomy. But just because it's difficult to make a diagnosis doesn't mean your doctors shouldn't try. Personally, I found a pelvic floor physical therapist to be much more knowledgeable about the pelvic floor and the pudendal nerve than the neurologist I saw who was clueless. It was a physical therapist who first diagnosed me correctly.

It's possible the pain in your buttocks and legs is due to the pelvic muscles going into spasm as a result of your original pain. I found alternating heat and ice to be helpful for immediate pain relief in those areas. It's not a cure but can help keep you from going crazy.

Have you tried any topical ointments and/or rectal suppositories for rectal pain relief? There are various topical ointments you can try like nitroglycerin ointment, or compounded creams containing ketamine, gabapentin, and baclofen. Many people find valium suppositories helpful -- or even just inserting an oral valium pill.

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: PN my story.

Postby Rob73 » Tue Feb 07, 2017 9:11 am

Thanks Violet, you are so kind.
So far I tried uselessly nitroglycerine ointment.
I'm afraid using painkillers due to constipation side effects.
I don't want to risk another anal fissure.
Generally I use hot but never tried with cold; could you suggest me for how long?
My physician prescribed me B12 vitamine. Do you think it can ease my symptoms?
Thanks
Rob73
 
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Re: PN my story.

Postby Violet M » Thu Feb 09, 2017 5:41 am

Rob73,

I've never known anyone who was cured quickly just using vitamins but over time I can see how it could help to promote healing if you don't take toxic amounts.

In the following thread, you can see my description of how I used hot/cold water therapy for healing and for pain relief. viewtopic.php?f=25&t=5267 Ideally you are in the warm water 2 minutes and the cold water 30 seconds -- back and forth 4 times.
If you don't want to go to the trouble of getting into the water you can use an electric heating pad alternating with a gel ice pack but you might have to leave it on longer for the full effect. (put the gel ice pack between two pairs of underwear to stay in place and you can walk around). I like the Ace brand of cold compresses that are in the shape of a pad. You can get them from walgreens or online.

Some of those medications that I listed could be used vaginally instead of rectally if you are a woman. If you are afraid of getting constipated you can try some of the ideas on the following list:

http://www.pudendalhope.info/node/32

Take care,

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: PN my story.

Postby Andy_Pablo » Thu Feb 09, 2017 9:43 pm

I am not a doctor, but as far as I have been advised, vitamins like B12 & things like Omega 3 fish oils are helpful to good nerve function & potentially nerve repair/regeneration, but they cannot resolve the underlying issue, such as nerve entrapmemt... I was advised to take them from my PNE specislist before surgery & afterwards...
Credula vitam spes fovet et melius cras fore semper dicit...
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Re: PN my story.

Postby Rob73 » Thu Feb 09, 2017 11:03 pm

Thanks Pablo, thanks violet,
After two surgery I am afraid of any invasive treatment to get my symptoms worse.
Unfortunatly lyrica didn't work at all'. Did anyone get any improvement with lyrica (after how long?).
My physician told me lyrica and cymbalta together could be effective.
Rob73
 
Posts: 12
Joined: Sat Feb 04, 2017 10:03 am

Re: PN my story.

Postby Andy_Pablo » Thu Feb 09, 2017 11:08 pm

I found Lyrica to take the edge off the pain. I did not think it did anything until I stopped taking it for a short period. Cymbalta did not agree with me, so I discontinued use...
Credula vitam spes fovet et melius cras fore semper dicit...
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