I post this information because other people may suffer in silence with the same issue, and like me not even knowing that there are others like them, that is not normal and there is help!
After being pressed down to the wall of hesitation, I have finally broken it, hoping family, friends and other fellow human beings could help to relieve Sara’s most unrelenting, underhanded, physical, emotional and spiritual pain. Almost six years ago, Sara was defeated by a truly debilitating disorder. It is unceasing, all- encompassing, with an ability to wreak emotional, spiritual and physical havoc.
First reported in medical journals in 2001, didn’t even get an official name until recently. Therefore, it is an extremely rare and newly identified disorder. There are two blessed leaders of study attempting and eradicating this monster- one in San Diego and one in The Netherlands. Sara didn’t tell anyone of the physical, emotional, and spiritual torture she was going through for a while. She has shared the details with her aunt about the physical experiences and the anguish that was causing her.
In April this year, after describing the feelings in her body and how it affects her. She was officially diagnosed with the demon name- PGAD (persistent genital arousal disorder). Also known as genital pelvic dysesthesia (GPD) .
It is completely undesired, unlooked for, every second of every minute of every month and every year, genital arousal. You cannot avoid it. There is no escape. Ever. It is not pleasant. It is not spoken of and therefore, most doctors don’t know about its existence. And if they do, they have a tendency to throw the comments like ‘wow, I wish my wife would have this’. It is as close as close as a lake of fire that one can experience. How do you keep yourself feeling pure when you are tormented constantly with feelings that you don’t want? It takes every element of energy remained to put a camouflage on for people around you in order to at least appear normal. ALWAYS on edge. It’s insanity inducing. People who have it commit suicide (Sara had two attempts and many suicidal ideations). Or they lose every sense of self that they have. Because it is so isolating, it destroys lives and relationships. It drives Sara crazy.
Family and relatives saw the effect at home. Sara would be exhausted and every move would cause her hellish sort of pain. The monster isolated her. Most of the time, she would suffer in the bedroom alone. In family gatherings, she could not sit comfortably or at all- even at dinner. She used to stand up in the back of the class getting a lot of questions from other students. That caused her to have sudden crying spells and panic attacks- nobody could understand why. Everyone thought that this has a purely psychological background- it is still misunderstood.
We have made an appointment with the world leader (Dr Irwin Goldstein) in the research to eradicate this agony. He said that there is nothing worse that he even knows of, as far as medical conditions go. We are planning to make trips to San Diego- that is where his office is. The doctor has already an assumption of what the cause of this monster is.
Sara has got none parental support at all. She cannot get a credit card because the salary must be at least £10,000. Sara is a full-time student and cannot get a full-time job, therefore she cannot get a loan.
Based on Sara’s history, the doctor is suspecting a pudendal nerve pathology and vestibulodynia. The treatment comprises physical examination, tests, and surgery, such as neurolysis and entrapment. They have found out that this will eliminate the entire problem. There is a CURE available!!! This is a breakthrough that will also help other girls and women (and occasionally men) with the same devastating matter. The downside of this all is the insurance will cover that NONE of it, because they do not recognise it as a legitimate health condition- yet. Depending on the cause, it can fall under spinal cord abnormalities- not in that case. Through the consultations with the front office, they would compose the process of many imaging, counselling (because of the trauma), testing, trips and staying in the hospital. Summing up, that would be approximately $90,000.
Sara cannot go on like this anymore, and she desperately needs help. It is extremely hard for me to ask. It is not in my nature. But I desperately want to survive and encourage other people to seek for help, because there is always a way. I need to reach out.
Please, if you have any means to do so, contribute to this crowdfund account. It truly will change Sara’s life and end the crippling disorder that takes TOO MANY lives in silence.
PS. To clarify, I am Sara. I have written it in third person to make it easier for me to share.
If you have made it, reading it right to the end
Thank you ever so much
Means a lot