Health Organization for Pudendal Education

Hi everyone, Des in particular ..
Quite some time ago I heard someone talking about us human beings and they said "we think we can't take any more, and then we do" and you are living proof of that !!!
One of my early visits to my clinic, before they were fully staffed, I was talking to someone and they asked me if I would like to talk to the counsellor about coping skills and my mind was trying to say "No, I can deal with it" but suddenly I was crying like a baby and I started my road to recovery there and then. My PGAD hasn't changed much but just being able to talk and have someone listen was monumental to me, they say that 'a problem shared is a problem halved' and that is relatively true with this silly condition.
I am pleased that you are having a little relief and I hope it continues for you. My Lignocaine gel seems to work in a sporadic way at the moment so I'm thinking about getting the stronger one, it's sold over the counter so I don't think it will do much harm ...
Keep smiling and just take one step at a time (not that we have a choice )
Love and good wishes to EVERYONE
Marg

Can you imagine us all in a counselling session together. . .or even if we did meet up. . . I'd bring the kleenex
hugs to you all.

Well said, Helen. The first time I met another gal with PNE we just hugged each other and cried.

I had my counselling session yesterday morning. I guess it went okay. I had to tell her my story and each time I do, it makes it more vivid for me.. I was quite upset to have to tell it again.. The lady was very nice and understanding, but I did see the puzzled look on her face when I tried to explain PGAD and how all my stresses have contributed to it, including the break-in.. *sigh* Maybe it's too much for her to comprehend on our first "date"!

She gave me some ideas though about deep breathing and letting out the pain, stress and fears with each breath, then bringing in the peace and calm when I inhale.. Can't hurt to try, can it? She also suggested I go back to walking again, but perhaps inside a mall now that the bad weather's on it's way, and I don't feel safe in my own neighbourhood now that I know there are so many criminals in my area..

I have another appointment in early December. She suggested every 2-3 weeks. I hope that I can find something that'll work for me, to help with all that I'm facing now..

I'll ask my doc about the Lyrica when I see him today, and maybe he can suggest something for me to not feel quite as anxious and depressed as I have been.

Thanks again for your support and comforting words.. I'm trying hard to think of two or three things each day that don't suck.. This place is one of them!

Maybe you should give her the letter to medical professionals about PN DES, and she might be able to understand it all a bit better? Although I'm sure she will have had time to consider what you have said by your next 'date' . It's just that I found that my lady concentrated more on the things that she understood, but that might have just been her ~shrugs~ Whatever, I hope the process does you good, it certainly won't do any harm.
Take care,
Helen

DES,

There are many relaxation tapes on the market which can guide you in calming and breathing exercises. Your local health food store may carry them, or a yoga studio. There was a period when I had to listen to them every night to go to sleep, and I found them to be very relaxing and helpful.

There is also a 9-week meditation program for health which I took some time ago. It's called "Meditation for Health" and is covered by OHIP. Dr. Lucinda Sykes, an MD in Toronto, leads the program. I do recommend it highly for developing skills and techniques to relax through deep breathing and meditation. If you would like more info, just send me a PM.

Thinking of you.

I agree 100% with everything that's been said over the last couple of days, Des, I'm sure you will find that your counsellor will have done a lot of research by the time you see her next, she will need to know all about it to be able to offer her help and I took heaps of printed matter to my counsellor on my second visit only to find that she had a bigger stack of papers than mine !!
I started meditating on the advice of my counsellor and still do to this day, now it's not just for PGAD but it has become a 'way of life' for me and has brought me benefits in so many ways, my only advice on that would be to not put pressure on yourself to get it "right, just accept any thoughts that come into your mind and quietly put them aside. It gets easier over time and you only need to spend 5 minutes or so at the start, now I take anything from 15 minutes to one hour, but I don't plan on time, I just do what I feel is comfortable.
The one and only time that I met another person with the same symptoms we just looked at each other in silence for about 10 seconds, then started firing questions at each other for the next 10 seconds, then just went into the biggest hug followed by tears and more importantly, we laughed together at our reactions for a much longer time. There was just something indescribably comforting to actually SEE another human being who totally understood and that went both ways, her English wasn't good and my Vietnamese is non-existent but we talked for ages .... go figure that !!
If we all got a chance to meet I think we would need more than a few Kleenex, I suggest we all meet in an empty swimming pool wearing 'floaties' on our arms and not worry about the volume of tears ..... another fabulous mental image
lots of love to you all
Marg

The herb Dr Echenberg used is most likely traumeel injectable.

I special ordered it with a Dr script from a compounding pharmacy Cape Drugs
I got 3 boxes of 10 vials for $200. My Uro Gyn mixs it with lidocaine ( 3 vials per visit) / maybe 6 injection sites?
for my trigger point injections
it keeps all the swelling down- so I have yet to have a flare from vaginal /perineal TP injections.

Dr Kellogg uses that as well with her TP injections.

marg wrote:
If we all got a chance to meet I think we would need more than a few Kleenex, I suggest we all meet in an empty swimming pool wearing 'floaties' on our arms and not worry about the volume of tears ..... another fabulous mental image

Allow me to add to this wonderful image. When we do meet, we will all be pain-free!

I really don't know much about this symptom, and have not been able to find much on the net.

I do not have what I would describe as PGAD, but rather the sensation of pain and discomfort in an area that would usually be where the sensations of arousal would eminate. Looking at the information on the nih.gov site, I can say that I do not have any urge to do anything in the area, in fact the pain there virtually prohibits me even touching myself.

Possibly my symptoms are not those of PGAD - swollen vulva, painful clitoris, a sensation of often wanting to urinate, throbbing in the genital region. I suppose if I put my mind to it, I could think of it as a form of arousal, but right now I only feel it as uncomfortable and painful.

Thanks for reading my comments and would be very interested to hear if what I have written sounds like PGAD.

StarGazer