The first symptoms of permanent genital arousal syndrome appeared in me around the age of 5, but it took me years to understand what I was suffering from. Until the thirties, I had no idea this medical condition existed — even less because I was worried.
Permanent Genital Arousal Syndrome (PGSS)
As the name suggests, SEGP causes persistent genital arousal, which can last for several hours, several months, or even be constantly present. This arousal is not related to a subjective impression of sexual desireand one or more orgasms are not enough to make it disappear.
It is a rare orphan disease, affecting approximately 1% of women. Or at least, about 1% of women have been diagnosed with it. These statistics are really skewed: the shame that surrounds the subject can prevent talking about it and leave sufferers wandering, suffering their symptoms in silence.
Because this symptomatic arousal causes suffering, both physical and psychological. Personally, I’ve paid the price for most of my life.
“It was just about that”
From early childhood I started having frequent bouts of PEMS and had to masturbate several times a day in an attempt to calm myself down, not understanding what was going on.
As I grew older, these attacks became almost daily, with symptoms that were extremely difficult to live with.
Imagine being at work, and suddenly feeling a genital arousal that nothing has triggered, without understanding what’s going on. It is purely physiological and is so strong that nothing else can be done.
In these moments the crises took up all my mental space, made me nervous, a little aggressive… Dealing with the physical and mental strain that this represents, as well as the physical pain, has been a huge burden. Everything in my life revolved around it.
The path to being diagnosed in France is far from simple, first of all because of the taboo on sexuality, the shame that surrounds these symptoms.
Symptoms that distort self-image
But not even knowing the existence of this syndrome, I did not understand my symptoms as an expression of a pathology.
I was just thinking of ways to deal with this pain, telling myself “ Now I need to masturbate or have sex “. To the point that my personality was built confusion between symptoms of arousal and real sexual desire that I could consciously feel at other times. I was convinced that I had sexual needs “ huge”, that I had a problem with hypersexuality.
As if, barring the crises of the SEGP, I’ve gotten into the habit of role-playing.
But really, I didn’t want sex to ease my seizures. I perceived myself as someone I was not, as a “ nymphomaniac”, but sometimes I also felt dirty after intercourse. All associated with a very hard external gaze towards female sexuality, which only added to my confusion: I was utterly confused, unable to put into words what I was going through.
I was so ashamed of these symptoms that I could not tell anyone. After very long periods of crisis, I sank into states of deep depression, with suicidal wishes.
This syndrome has created a real loss of self in me: by dint of having to manage these symptoms, I just didn’t realize who you were.
How I made progress towards a diagnosis
When I was in my 30s, I met my husband. Medical professional, he is the first person to have seen what was happening: living with me, he perceived these moments of nervousness, of pain, and he said to me: “ tell me what you’re going through, tell me what you’ve got. »
He realized that something medical was going on in my body. So after listening to me, he did some research and found out what I was suffering from: this famous SEGP.
For me it was a real shock. The possibility of being sick had never crossed my mind.
I had to question everything I thought about myself. Because I confused symptoms with desire, I had built a very negative image of myself, I thought I was a “slut”.
Suddenly I found myself in a battery of medical tests: magnetic resonance imaging, physiological tests, doctors who told me about the syndrome… I had to rebuild myself, little by little, accompanied by professionals.
Faced with all these diagnostic difficulties, these taboos and this shame, I understood that I wanted to participate in the liberation of the word.
Each permanent genital arousal syndrome is different
Together with my husband, I was able to formally diagnose Permanent Genital Arousal Syndrome and I am now receiving treatment that allows me to live.
But on the matter of treatment, you should know that every SEGP is different. There is no specific drug that is right for everyonebecause the causes of the syndrome can be many.
Today, some data show that this syndrome may be linked to sexual violence in early childhood. For others, it could be physical shock, epilepsy, a Tarlov cyst… For each of these cases, the way to treat the symptoms will be different.although the diagnostic protocol is the same.
SEGP taboo and ignorance
One thing seems certain to me: the path to obtaining a diagnosis in France is anything but simple, firstly because of the taboo surrounding sexuality, the shame surrounding these symptoms.
Second, why many doctors are not informed of the existence of this syndrome and will not necessarily be able to adequately support a patient who thinks they have PEMS. But if there’s one thing that has stuck with my career, it’s this: putting pressure on doctors helps.
For free speech, I created an Instagram account
Today I am followed by several doctors – including a urologist who is the only French specialist in PSE – who believe me and listen to me. But I know this course is more difficult for others.
Faced with all these diagnostic difficulties, these taboos and this shame, I understood that I wanted to participate in free speech.
So I created an Instagram account: SEGP Parole Libre. I talk about my experience with this syndrome and hope to help all those who would also care to see that there is never anything to be ashamed of being sick. By recounting my journey, I hope I can help them in theirs. I also hope to be able to give visibility to this little-known pathology, but which makes many people suffer all over the world.
Help those affected
I have also open an email address, in order to be able to communicate with all the people involved in the SEGP who would like to talk about it in total confidentiality. Together, we can feel less alone, help each other and exchange advice or medical references and contacts.
Right now I’m also in the process of creation of an association to help people with SEGP, raise awareness and provide information to the medical profession. My goal is to do my best so that no child, adolescent or adult has to live with these symptoms.
Because talking about SEGP also means removing taboos on sexuality, especially that of women, sexual violence and the fight against isolation. We must be able to express ourselves and say: we are here, and the medical profession must know what is happening.
To contact SEGP Parole Libre, you can write to
segp.free speech[at]gmail.com
Photo credit: Pixabay / Pexels
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Mary Crossley is an author at “The Fashion Vibes”. She is a seasoned journalist who is dedicated to delivering the latest news to her readers. With a keen sense of what’s important, Mary covers a wide range of topics, from politics to lifestyle and everything in between.
