Your Voices

Please enjoy the following testimonial of a patient who attended last year’s Alliance for Pelvic Pain retreat…

Which aspect(s) of the retreat do you feel benefited you the most?
The Grief/Loss session was incredibly freeing for me because it was the first time I fully expressed how much I had lost from the illness and how much it hurt. The difference being I expressed it to people who could understand because they had gone through it as well. Pelvic pain is such a lonely illness as it is hard for others to understand, and it is a destroying illness of relationships, ability to work, of self worth and esteem. It made me also realize that as I treated my body, I needed to consider treating my emotions too. I had never considered therapy to talk about it before then.

The presentations presented as a collective group were great. Some things I knew as I was already in the process of treatment, some things were new to me. The saying “it’s all connected” is so true and as I saw how the different conditions affected each other or how you could have more than one was enlightening in terms of being able to explore possible new treatments because maybe we were missing pieces of the puzzle.

I was a skeptic about the mind/body/meditation to help with the pain. That was new to me and didn’t seem like to would be of any great help. Until I went home, had a really bad episode and put on the free DVD from Alexandra that was included in our materials.  THAT was a revelation because it did calm my fight or flight response and help with bringing me out of my fog of pain. In hindsight, I would count that session and presentation as very valuable.

Have you made changes in your lifestyle or habits because of what you learned at the retreat?  The retreat provided me with new language to use when trying to express why I can or cannot participate in a certain activity and that has led to me being a little more comfortable talking about it. Now, most people just know I suffer from pelvic “nerve damage” and have no idea of the real truth of my suffering. But they understand pain and nerve damage and that is enough to give them a sliver of understanding why I carry my cushion with me everywhere. That is something the retreat gave me – for the first time I took my cushion out to dinner with me each night I was at the conference! Meeting other people like me made me feel not so “strange” and gave me the confidence to take my cushion with me so I could be comfortable for once at a restaurant. And I’ve become quite discreet about it!

The retreat also made me realize that I had to be kind to my body, even though I often think of it betraying me. But now I manage stress better, I will not overload myself for anyone else, and if I need to rest, I do. I also exercise more to keep my body moving.  Sure, I can’t do the high impact stuff of the years before Vulvodynia, but I can do other exercises with modification. It had been good for my mind as well as body.  I also take my supplements more seriously than I have in the past. Tart cherry concentrate has been so helpful, flax and fish oil every day, and vitamins B, E, K, D plus magnesium and biotin every day.

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