Dr Conway

[Positivepoppy]

Hi just wanted to say I really empathise with everyone suffering with this awful condition and I know first hand the devastating impact it has on family life and loved ones·
Wanted to say that I hugely appreciate surgery is not for everyone but I had bilateral nerve decompression surgery 10 weeks ago and although I know it's going to be a long and frustrating road to a hopeful recovery I am feeling positive· Yes I am still in pain this is not a quick fix but since surgery I have not had the raw stinging electric type shocks down there that used to have me in tears as wanted to physically rip out my vagina and pelvic area· The pain is now more muted and not so angry and somehow easier to manage· I do not wAnt to give false hope but feel certain surgery was right for me and there is a marked difference in the pain pre/post surgery
My heart goes out to everyone and this site has been instrumental in helping with my sanity and thankfully diagnosis and treatment
Good luck and stay strong

[Positivepoppy]

Hi just wanted to say I really empathise with everyone suffering with this awful condition and I know first hand the devastating impact it has on family life and loved ones·
Wanted to say that I hugely appreciate surgery is not for everyone but I had bilateral nerve decompression surgery 10 weeks ago and although I know it's going to be a long and frustrating road to a hopeful recovery I am feeling positive· Yes I am still in pain this is not a quick fix but since surgery I have not had the raw stinging electric type shocks down there that used to have me in tears as wanted to physically rip out my vagina and pelvic area· The pain is now more muted and not so angry and somehow easier to manage· I do not wAnt to give false hope but feel certain surgery was right for me and there is a marked difference in the pain pre/post surgery
My heart goes out to everyone and this site has been instrumental in helping with my sanity and thankfully diagnosis and treatment
Good luck and stay strong

[Karyn]

Foot in the door for what? What is he going to offer me that I have not already tried except surgery?

Well, I guess it depends on what you're looking for, Patty. At the very least, he may be able to provide you with more definitive information about your medical condition.
He may offer you surgery at some point in time, but whether to go through with it or not is entirely up to you. Based on your posts, it's my understanding that you don't have a definitive diagnosis for anything. If you suspect you have PN(E), Dr. Conway or any of the other Specialists would be your best bet for confirming or ruling it out.
Kind regards,
Karyn

[stephanies]

Patty,

I agree with Karyn. You don't know the underlying cause of your pain until you see a doctor who specializes in PN. I don't know how you can sentence yourself to this life of pain without even a consultation. There are many people who get well through many treatments. Many PN patients are on this forum, many are not, and some of those who are don't come back to report in once they have improved.

My best to you,
Stephanies

[Patty]

Was bedridden from debilatating pain yesterday. If were not for my two dogs I would rather go to sleep and never wake up. I have no quality of life. Cannot even get to a friends house to watch a movie. The more I do the worse this gets. I started with a new PT who is supposed to be the best but my pain just keeps escalating.

[Violet M]

Patty, I'm sorry you are having such a rough time right now. I remember the days when I felt like I was in a prison of pain and when I just wanted to sleep and never wake up. I understand what you are going through and I can't blame you. The one thing I always tell people when they are in this stage of their PN journey is that you still have options so it wouldn't make sense to give up yet until you've tried all of your options. I hope you can find what works for you. If PT isn't helping then it's probably not the right option for you.

Violet

[Patty]

Thanks for all your responses. I just don't have the will to keep seeing doctors with no answers for me. I have lost all hope to return to the once vibrant person I was over a year ago. I have been trying to turn to church more but cannot even sit for that. I fear I will loose my home since work is becoming more difficult . I have no one to support me financially. I feel I am being punished for what I am not sure.

[stephanies]

Patty,

I understand how you feel and that, so far, seeing doctors has not been helpful. However, Dr. Conway is a specialist and he knows about PN. Isn't it worth one more appointment to see if he can help? I have been to the place where you are and it is pure hell. There is hope, even when it feels like there isn't.

My best to you,
Stephanies

[Violet M]

I have been trying to turn to church more but cannot even sit for that.

Some people might call it crazy but I used to lie down in church. Our church had pews you could lie down on but even with that there was a time that I just couldn't even tolerate going much of anywhere and was pretty much glued to my couch and bed.

With pelvic pain and pudendal neuralgia, my conclusion after reading the PN forums for years, is that you may not always be able to come to a 100% definitive conclusion as to the exact cause/mechanism that is causing the pain. But most people find a treatment that helps significantly and many to the point where they can lead a mostly normal life. You are right though, it can be exhausting and it's easy for me to say "don't give up" now that I've come out on the other side of the tunnel.

Violet