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Persistent genital arousal and the BRCA gene

Orgasms! Amazing! Who doesn’t love being turned on and having orgasms? I bet some of us have wished we could be horny all day, every day. I certainly wouldn’t have thought that sounded like a bad idea until a few years ago.

Around 6 years ago my perspective on this drastically changed. At this time, my aunt who I am very close with was diagnosed with un-treatable womb cancer and as a result my mum, sister and me all found out that we had also had the BRCA gene that had led to my aunt’s cancer. 1 in 500 people carry the BRCA1 gene. BRCA1 gives you an 80% chance of contracting breast or ovarian cancer over your life time but my aunt had womb cancer which although much rarer is also a result of being a BRCA1 carrier. Learning in your 20s that you, your mum and sister all have a very high chance of contracting cancer is terrifying and something that still hangs over me, not to mention the decisions you have to make aboutwhether to have your breasts and ovaries removed. During this time I was constantly going to the GP with suspected cancer. The fact that I have irregular and heavy periods really increased my anxiety. Fortunately, every time the tests were negative but the anxiety was real.

It was a very upsetting and stressful time and as a result I ended up having extreme anxiety for a while. I have come to cope with it in a much more manageable way in more recent years. So, the ‘normal’ responses to times of great anxiety and upset: panic attacks, withdrawal, depression, inability to work? These are some symptoms that commonly go along with anxiety and distress. No one ever mentioned the possibility of Persistent Genital Arousal Disorder (PGAD).

PGAD can present in a number of ways but for me it meant that all day, everyday for about 6 months I was in a constant state of genital arousal. I can’t stress enough that this feeling was purely physical. I wasn’t turned on mentally – the opposite was true. Mentally, I was incredibly distressed and humiliated. Luckily I wasn’t actually orgasaming as some people with PGAD do, but I felt genitally aroused all the time. It was horrific. It was probably the worst thing I have ever gone through. I drank constantly because it was the only thing that made me feel any better even if it was a temporary.

Eventually, through the awful embarrassment, I worked up the courage to tell my partner and my mum about what was happening to me and together we went to the GP. The poor woman was completely non-plussed. Eventually I was referred to UCLH – the best in the country? They didn’t fare much better. I was tested for excessive testosterone and the results showed that wasn’t the problem, I had MRIs to see if there was a pinched nerve inside which can be a cause, but this also wasn’t the issue, I was tested for bladder problemsand I had excessive STI tests – all of the tests came back ‘normal’. So what was wrong with me? How could I carry on living? Thoughts of suicide crossed my mind. I couldn’t live my life like this forever. Eventually I was put on Fluoxetine an SRI antidepressant which is meant to dull your sexual arousal. I’m not really sure how much it worked but I took it anyway, just to feel like I was doing something.

I began seeing a councillor. I asked her: ‘how come everyone else cries about their aunt dying and I get the horn about it?’ It was a joke but based in some perverse reality. Eventually I started to wonder whether this wasn’t a physical issue but a mental issue. It seemed too coincidental that this bizarre condition had begun at the same time as my having extreme anxiety. I began to research it and there is very little literature out there on it, however have written that ‘some cases of PGAD often happen alongside cases of mental health issues. Anxiety, depression, bipolar disorder, OCD and other similar conditions have been identified in cases of PGAD in both men and women.’ There is no definitive proof that these are causes but, in my case, it seemed likely as I had been tested for everything the specialists could think of.

After about 6 months, the symptoms began to fade. I had got through it. It was like being liberated from torturous imprisonment. The PGAD still comes back very occasionally but it is usually just for a day or a few hours. I am still terrified of it coming back as it did previously, but over the past couple of years I have worked very hard to improve my mental health and I think this has helped a lot. I continued to take the Fluoxetine for 3 years. I was too scared to come off it. Very recently I stopped taking it but I replaced it with another SRI and so far it hasn’t returned again.

My story exemplifies the importance of the work that VaVaWomb does in order to get rid of the stigma concerningdiscussing sexual health. It was so hard for me to talk about but I am very lucky to have an incredibly supportive and un-judgemental family and friends and this helped a lot. I have written this anonymously mainly because I am a secondary school teacher and the kids would love to get hold of this information about their teacher. However, if anything I have talked about resonates with you and you want to talk please contact VaVAWomb and they will put you in touch with me.

Responses to this story

Wow! I developed breast cancer, before I found out I’d spent approximately six months off of taking Prozac SRI… and I was mysteriously consistently turned on! It was so shocking! And very real. My cancer had grown behind my left nipper and I am convinced that this was tickling my nerves… I ended up with a partial inverted nipper I discovered when I bent down in the shower… now I’ve read what happened to you I’m wondering if the whole thing was because I stopped taking the SRI… when I told the cancer nurse she laughed and said she had never heard of it. My cancer was her2 positive so they didn’t check for the gene… Sue April 25, 2021

Omg. This resonates. Mine started after having a precancerous cells removed from my cervix. I waited for the results and was terrified. Within that time I had pain which was probably normal but I catastrophized it. Then my bf broke up with me. I lost my job. And to top that off I was 29 now having to move in with my mother. All of this happened within a month and half period. My anxiety was high. I had anxiety attacks every week and then boom a tingle started and then progressed to full on arousal. I was stuck like this for two months. Then it started to fade. It then turned into right side PN pain. I had to get Botox and a nerve block. My PGAD will resurface sometimes right before my period but only stays for about two days. I will also feel a little twing occasionally. It’s terrifying. I almost took my own life. I am not on elavil but I don’t think it has helped. My anxiety is better but the constant fear of pelvic pain and pgad keeps me on edge. J March 21, 2021

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