Writing about PGAD

[Rosalita60]

Hello, all.

I am a PGAD sufferer and have been for at last four years.

I am also a writer, who worked as an editor at a financial news service for almost 20 years. I write crime novels that have not yet been published, sadly.

About two months ago, I took pen to paper and began to record my experiences with PGAD. I have about 20 pages that I am happy with at this point. I do not wish to simply tell my own story, however. Tentatively titled The Quest, the book is intended as an exploration of this horrific disease and what it does to those who get it. I intend to inject hopefulness and practical support into the book. Under no circumstances do I wish to write a misery memoir. I have already had input from Dr. Echenberg in Philadelphia and Sharon Nathan in New York (she co-discovered the syndrome in 2001).

This message is effectively an early callout to see if anyone wishes to talk to me. Everything I have done to now is about me and I would like to add some other stories to get a draft to my literary agent in New York. My suggestion is that anyone who is interested or curious, contact me here. Of course, if anyone agrees to be interviewed, I am happy to use pseudonyms and change details of profession, location etc. I would send some of what I have already written to people so they could judge my style, compassion and knowledge before they talk to me.

A few words about me. I am Anglo-American living in Leeds in the UK, originally from Baltimore. I was recently widowed and until October lived with the wonderful Clive. I have family in the UK, France and the US. I will be in Florida for New Year and intend to get seriously cracking on a draft of The Quest from now.

This could be a really good thing for all of us. We could lift the lid on this nasty thing and help patients recognize the symptoms earlier and doctors identify causes and treatments more easily.

All best,

Judith

[pizon]

Hello and may I say I think this is a wonderful idea..I first need to ask what exactly is PGAD...I suffer with pundeal neuralgia and was mis diogonsed over a year and a half have seen over 25 doctors my story dose have a happier now (there is no end to my pain however I have and am learning to live with and reduce the effect the pain has on my life) I don't know if I/my condition is what you are looking to write about but I would be interested in a book that will help people with pelvic pain and help them to first understand there condition and to take back their lives let me know much luck to you and your Quest

[Rosalita60 in reply to pizon]

Hi I am not sure you have PGAD. The key factor in this syndrome is unwanted, intrusive pseudo-desire that has no linkage to romance or eroticism.

[pizon in reply to Rosalita60]

No as I said I have p/n which is pelvic pain

[playwrightanonymous]

I've had symptoms of what I think might be PGAD on and off for the past two years, though my doctor dismissed it when I asked her about it, so I've never been evaluated or diagnosed. But I have suffered from what sounds a lot like it, and it can last sometimes for months at a time, sometimes for only a couple days at a time. It started completely out of the blue—I woke up on December 8, 2018 (and I remember the exact date because it was so jarring and distressing), and nothing felt the same again after that. When it feels really bad, I have to wear very loose clothing and sit in certain positions (usually on my knees, which puts the least amount of pressure on me). So I've never been diagnosed or anything, but I've had symptoms for several years that closely resemble PGAD.

[Rosalita60 in reply to playwrightanonymous]

Would you like to tell me about the experience? We can take this offline and I can tell you more about myself and my questions. As a bona fide I could also share with you some of what I have already written.

[Bolex]

I will talk to you

[CernCrystal]

Hi are you still collating stories. I've recently joined HU for management of hypothyroidism (they are excellent) but I also have PGAD and vaginismus. I manage it well - and have a great understanding of my body now from a wonderful gynae physio who was quite elderly and said I was the first person who had come forward to talk about it and to ask for treatment. I did lots of research to understand what was happening and how to manage things - principally the anxiety which I'd never had before. I joined a forum (states based) although it was helpful, I was concerned about the poor mental health of all on there and recognised it in myself, so it was the first thing I addressed. I was shocked at how all the medical professionals I've encountered along the way have not heard of this or understand it. It took a physio! I've since helped a women who was suicidal by being open and talking. Let me know if you're still doing this and want to chat more.