Alone in the pain

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Re: Alone in the pain

Postby Violet M » Mon Dec 18, 2017 6:30 am

You could try increasing the lyrica. If you have pelvic floor tension valium or other benzodiazepines might help. Clonazepam helped me sleep. If you have urinary symptoms or burning, a tricyclic antidepressant, like amitripyline, might be helpful. If your doctor is willing to prescribe opioids that is another option. I purposefully avoided the time-released long-acting opioids because I did not want to develop a tolerance or become addicted to them. I used oxycodone that you take every 4 hours and I only took it in the evening at at night to help me sleep. Otherwise I toughed it out. You can read Cora's posts on the forum about buprenorphine. It is an opioid that you are less likely to develop a tolerance to but it's hard to find docs who will prescribe it or know how to manage it. Usually drugs don't completely take away the symptoms and they have side effects so I see them as a temporary solution while you are looking for something that helps fix the underlying problem if possible.

Yes, I had increased symptoms from walking. Before PNE surgery the leg on the side where I had the knife-like pain was sort of dragging when I walked. I went through a phase of PN when I had really bad itching and I have heard of other people who had problems with itching.

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: Alone in the pain

Postby goldmund » Mon Dec 18, 2017 10:48 am

I wouldn't like to take opioids, until I can manage to sleep. Today pain is under control: Lyrica is reducing the pain transforming it in a bad itching, although I feel scared every time I feel pudendal burning/itching.
Doctor told me he would proceed with cortisone shots but I don't think this will solve everything.
I don't know what to think. Today my life is just terror, I feel like I'm hanging over an abyss.
I would only like to forget everything.
Unfortunately, every morning, when I wake up, I feel panic.
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Re: Alone in the pain

Postby BrianG » Tue Dec 19, 2017 9:22 pm

Goldman, I am a male PN/PNE patient with some symptoms like yours. Moreover, my feelings about the experience are a lot like what you are describing (fear, panic, an abyss). Do you want to discuss via this forum ?- BrianG
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Re: Alone in the pain

Postby goldmund » Wed Dec 20, 2017 2:53 pm

BrianG wrote:Goldman, I am a male PN/PNE patient with some symptoms like yours. Moreover, my feelings about the experience are a lot like what you are describing (fear, panic, an abyss). Do you want to discuss via this forum ?- BrianG

For sure.
I'm here
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Re: Alone in the pain

Postby goldmund » Wed Dec 20, 2017 3:05 pm

I wanted to underline that I stumbled in a machine translated article on Pudendal Nevralgia http://consigli-salute.blogspot.it/2008/01/togliere-il-shame-di-nevralgia-del.html?m=1 and I found it incredibly complete and very well written, despite the errors due to the automatic translation.
Only after having checked for the translation in English I knew it was written by Violet.
Many many compliments

I'm currently improving the translation.
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Re: Alone in the pain

Postby Violet M » Thu Dec 21, 2017 5:51 am

Hi Goldmund,

That article is sort of old I'm afraid. It would be nice if we could have had more advances in treatment of PN since that article was written but the
stigma and the emotions that go along with this disease are still pretty much the same now as they were back then. Anyway, thank you for improving the translation.

Hi Brian. Welcome to the forum. I would be interested in hearing your story. Maybe you can start a new thread in the welcome center and let us know if you have any questions or if you just want to post what's going on with you. Or if you prefer to remain private that's fine too.

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: Alone in the pain

Postby goldmund » Sun Dec 24, 2017 5:45 pm

Just a quick update.
My urologist confirmed the therapy: 75mg lyrica 3 times a day.
And added pelvilen.
Unfortunately, after a mild improvement, during this winter vacation I'm suffering as before to start the treatments.
I'm still afraid not to exit this tunnel.
goldmund
 
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Re: Alone in the pain

Postby Violet M » Mon Dec 25, 2017 7:03 am

Goldmund did you see a pudendal neuralgia specialist yet? I don't know what country you live in but maybe that is the next step for you.

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: Alone in the pain

Postby BrianG » Fri Dec 29, 2017 3:27 pm

G, Lyrica was a big help for me. I started off at 75mg a day but it was not enough. Doc increased it to 150 mg a day and it really helped. Gotta give it a few weeks to kick in. Are you doing some exercises to loosen, stretch, and strengthen ?
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Re: Alone in the pain

Postby goldmund » Sat Dec 30, 2017 2:27 pm

Yes, I've seen on 21st Jan a specialist who confirmed this therapy.
I live in Italy.
I started the therapy with Lyrica 3 weeks ago. Now it's a bit better. Burning is significantly reducing but I feel discomfort in the pudendal area, especially when I walk for a while.
And I keep feeling annoyance when I sit. I bought a cushion which I think is helping on this side.
Which kind of exercises did you think help most?
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