Health Organization for Pudendal Education

Hi Violet,

Thanks for your input. I'm just searching for answers - it seems I just don't have the "typical" PNE - since I don't have entrapments either in the SS/ST ligaments or alcock's canal - but rather the rectal and dorsal nerves. So my thought is if I can't be fixed - then what? Do I just try to be content doing nothing the rest of my sorry life??? No, I'd rather commit suicide.

Scared,
I don't understand why think you have to live this way for the rest of your life?!!? You don't!!! Just because one surgeon said he couldn't help, it doesn't mean NO ONE can! And for the love of god - please stop weight lifting!!! You're not doomed, hon. Please lean on us, keep asking questions, and do something with the information you receive.
With love and hugs,
Karyn

I agree with Karyn. Stop weightlifting. It may not be forever, but at least until you are pain free. And find an anti-depressant that works for you so that you can continue to be hopeful and search for a cure. Hugs to you scaredgal. You have to believe that we will find a solution to this.

Hi Karen and Griff - thanks , but I don't believe in anything anymore.

Well scaredgal, Karyn and I are on your team now and we'll believe for you until you're strong enough to believe yourself

Thanks for rallying with me, Griff! I couldn't ask for a better partner in PNE!!!
So, Scaredgal - you've got your very own personal cheerleading squad. Well, OK - it's a cheerleading team right now. But I'm sure it'll evolve into a squad any time now!! In the mean time, Griff and I are wondering what we can do to help? Is it that you're (understandably) having a hard time with waiting for your appointment? Do you need different meds to help control the pain? Is it that you need a couple of drinking buddies?
Please notice that I'm not asking, Is it that you feel you can't be helped? That's right - not going there! Because that's just silliness!!! And NOT true.
Lets try to figure out how we're gonna get through the next few months. Together.
Love and hugs,
Karyn

Ah, Karen and Griff thanks to you both! Just not sure where to turn now that I've lost so much faith in drs and everyone one I have been to basically says I can't be helped and to take drugs..... You know, you are brought up to trust the medical profession and I have been told by pretty knowledgable drs that I'm not a surgical candidate - I feel like I'm putting all my eggs in the "Hibner" basket... only to be disappointed again... after the long wait.....I don't really know anymore....

I was at that point about 9 months ago when I went to the Vulvar Pain Clinic at the University of MI. They told me it was a "nerve" problem and since I was already on Cymbalta (thanks to my very caring psychiatrist) they recommended neurontin and they'd see me in 6 months. No recommendation of PT or anything. So I took the damn stuff for 6 months and was basically a moron because I would constantly forget stuff and couldn't have a conversation because I couldn't find the words. It took the edge off the pain a little but did not improve my condition. I had already weaned myself off of the drug the week before my follow-up appt.

These dr's are supposed to be specialists and they tell me at my followup appt "we don't know what causes the pain - all we can try to do is help you find a medication that will help with it." Well, sorry, I don't want any more drugs. I guess I will have to figure this one out on my own. My psychologist once told me that dr's are just "body mechanics". They are taught to look at your symptoms and write you a RX. If you don't fit in their little box, they can't help you. He told me early on that I was going to have to figure this thing out myself. So that's basically what I've done.

Well, I can understand how you could lose your faith in the medical profession. I also understand how you were brought up to believe the doctor is always right. But I think that most of us have learned the hard way that couldn't be further from the truth. Griff is right - You do really have to be your own advocate and try to figure things out for yourself. Luckily, we have this fabulous community so we don't have to figure things out, alone!

Dear Scaredgal,

Count me in on your cheerleading squad, too! As for exercise, please try swimming instead of weightlifting (so long as you stay away from frog leg kicks). I swim frontcrawl every day or two for 20 - 25 minutes. Every second length I put a floaty between my legs to minimize the leg/hip motion. I could swim with the floaty forever if I wanted to, but I feel that it is important to get some blood circulating in my hips since I can't walk anymore (this is temporary I hope). I used to do some flutter board work (kicking with my legs only, holding the flutter board with my arms) but I haven't been able to do that for a couple of months because of the pain in my hips/lower back. But you might be able to.

Swimming is a great gravity-free exercise that works your entire body but very gently. Even if you swim with only your arms you can get a great cardiovascular workout since the leg arms are the second biggest muscles in your body (after the legs). I can get my heart pumping at a good rate.

If you don't know how to swim, you can find an instructor at the local pool who can teach you. It is important to learn how to breathe from both sides of your body so you do not develop neck or shoulder sprains. I taught myself how to do this and it is by far the trickiest part about swimming the front crawl.

Swimming is also very quiet and meditative form of exercise and can help to calm the nerves. I often find my pain dropping several notches after my swim, and this effect can last for a couple of hours.

We're all here for ya, girl! You are not alone in this. You WILL get better, as we all will.

Love

Lernica