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A woman and her partner had to go for months without sex as she suffered from a rare condition that causes persistent genital arousal.
Event planner Lior Ofir Schwartz, from Miami Beach, Florida, decided to do some research in December 2012 after experiencing consistent arousal urges, without sexual desires, which caused extreme pain in her genital area.
The condition worsened when she felt stressed and before bed, and when she tried to have sex with her then-boyfriend of two months, Jonathan, it was so painful they had to stop.
In December 2012, I started to feel my symptoms to an extreme and started to research what I was feeling
I would have restless leg syndrome; I have feelings of arousal without sexual circumstances. The best way to explain it is an itch I cannot scratch.
In days that I experience extreme stress I feel the need to put pressure in my clitoral region as it feels painful.
I usually feel this in times of stress and usually at night before bed. The feeling is a painful arousal; it feels like a tingling in your genital region that all you want to do is put pressure on it or masturbate to relieve the pain.
The 28-year-old researched her symptoms and discovered Persistent Genital Arousal Disorder (PGAD), which is characterised by spontaneous, persistent, unwanted and uncontrollable genital arousal in the absence of sexual stimulation.
In March 2013 Lior made an appointment with PGAD specialist Dr. Echenberg, who confirmed she had PGAD as well as pelvic dysfunction and Interstitial cystitis.
For the rest of the year, the events planner had to undergo physical therapy in an attempt to alleviate her symptoms. Jonathan supported her throughout the ordeal and understood the couple had to go without sex for months at a time while Lior tackled the condition.
Lior explained ‘a bit’ of her diagnosis to Jonathan when the pair first starting dating, but didn’t go into further detail until a year later.
He has always handled my condition with patience and understanding. He has never rushed me or stressed me out when it comes to my condition.
He has been supportive by being patient. That is the number one key. He has always encouraged my physical therapy, psychotherapy, and many, many doctor visits.
There have been times over the years where we would have to go months without having sex as I worked on symptoms with physical therapy.
Jonathan popped the question to Lior in October 2016 with an elaborate proposal themed around one of their favourite TV programs, The Tonight Show. The pair married the following March surrounded by their friends and family, though things were still tough in the bedroom.
After six years of enduring pain, Lior underwent Botox injections in her prudential nerves and in September 2019 had a vestibulectomy; a surgical procedure where the hymen and vestibular skin is removed.
Lior and Jonathan weren’t allowed to have sex for four months following her operation, and the doting husband remained supportive during what Lior described as a ‘painful’ recovery. Thankfully she is now able to have pain-free sex with the help of a dilator and lubricant.
Lior’s physical therapist used the dilator during therapy, and the 28-year-old continues to use it now anywhere between 15 to 30 minutes before having sex to make the experience more comfortable.
We use a water-based lubricant and then have sex; it’s a little bit of work right now, but it’s doable and pleasant. I’m pain-free after my surgery.
By sharing her story, Lior hopes to show others there ‘is a way to work through the pain’ and that there is ‘a light at the end of the tunnel’.
I want to show others that with the right support and encouragement you can have a normal life with this condition.
My hope is to provide answers, and in a way be an inspiration to push others to move past the pain. I understand the pain, but I have also tried so many different tools to get rid of the pain, that I now know it is possible to live around it.
I want other people with PGAD to know you can still find someone to love if you want to, you can still travel the world if you want to, and you can still go after your passion if you want to.
PGAD and pelvic pain is becoming more and more acknowledged. I want people to understand you can still live your life. You can find the light in it all. Fight the pain and find your passion, don’t let it stop you.
Lior’s experience will no doubt prove encouraging to anyone suffering with the same condition; her determination has definitely paid off.
If you have a story you want to tell, send it to UNILAD via [email protected]
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