Mother-of-three, 61, says condition causing uncontrollable orgasms has ‘wrecked her life’
A mother-of-three who has a condition which leaves her constantly on the edge of an orgasm says it has ruined her life.
Persistent genital arousal disorder (PGAD) has left the woman, known only as Maria, fed up with life and a ‘recluse’, she said.
The condition, caused by nerve damage between the vagina and anus, has baffled doctors who said they couldn’t treat her for it.
But 61-year-old Maria says she feels like she is ‘sitting on an ants’ nest’ most of the time but there’s nothing sexual about the misunderstood condition.
She believes it was triggered by a rough gynaecological exam by a doctor two years ago but the NHS has denied the link.
Maria, who did not want her face to be pictured, said the condition has wrecked her life and claims is began after a rough gynaecological exam in 2017
‘I just didn’t know what was happening,’ Maria told The Herald. ‘You’ve got this great arousal but it’s not going anywhere or triggered by anything.
‘Most of the time I feel like I am sitting on an ant’s nest. There’s times where it’s a tickle all day, but then something sets it off and it’s a full-blown orgasm.’
It’s not known how many people suffer from PGAD but scientists have in the past suggested it could be as many as one per cent of women.
Maria, who is a widow, said doctors told her her condition developed because of damage to her pudendal nerve, which runs through the perineum.
The constant state of physical – but not mental – arousal has taken its toll on her.
Activities as mundane as driving over a pothole, aeroplane turbulence or riding on an escalator could be enough to tip her over the edge and trigger an orgasm.
Music, peculiarly, can also trigger it. Maria said she has had orgasms from the vibrations caused by playing the violin, and at a Shania Twain concert.
‘I don’t know how many women could say they went to a Shania Twain concert and she made them orgasm,’ she said.
‘Ninety per cent of my life has been wrecked and the other 10 per cent is not so great either. I had to give up volunteering because just moving can set it off.
WHAT IS PERSISTENT GENITAL AROUSAL DISORDER?
Persistent genital arousal disorder (PGAD) is a condition in which someone cannot control their physical sexual arousal and has orgasms at random.
The condition is not sexual or linked to desire and can be debilitating and painful for those who suffer from it.
Doctors don’t know how many people have the condition, but it is believed to be significantly more common among women and is estimated to affect as many as one per cent of females.
Signs of the condition may include wetness in the vagina, itching, the feeling of pressure, burning, pounding, or pins and needles.
Some describe it as feeling congested.
PGAD’s causes aren’t well understood but it could be triggered by stress, certain medications, nerve damage or certain types of cysts called Tarlov cysts.
Treatment may involve behavioural therapy, painkillers or in some cases medication, but the condition is not curable.
Source: Medical News Today
‘One of my friends said to me I’d become a recluse.’
Maria’s condition developed after a smear test in September 2017.
She said the doctor ‘rammed’ a speculum – an examination tool – into her vagina during the exam.
And the next month she began experiencing symptoms for the first time, which would eventually be diagnosed as PGAD.
She has tried numbing gels, pelvic floor physiotherapy and steroid injections directly into her clitoris, but none of them have worked.
Maria could have Botox injected as a treatment – the chemical paralyses muscles – but she is afraid it could make her incontinent.
‘To think that this damage was caused by a consultant’s incompetence and then you have incontinence as a result of things you do to try to cure the damage is just ludicrous,’ she said. ‘It’s shocking.’
The NHS Greater Glasgow and Clyde health board has disputed Maria’s claim the damage was caused by the smear test.
It has refused to refer her abroad for treatment, instead sending her to London where there are specialist doctors.
A spokesperson said: ‘We have explored and exhausted all treatments available locally for this patient and have been unable to relieve their symptoms.
‘Therefore, we have offered to refer them to a specialist consultant in London.’
Maria’s local MP and newly appointed leader of the Liberal Democrats, Jo Swinson, said: ‘It’s disappointing that it has taken so long for the health board to acknowledge that they are not able to offer effective treatment themselves.
‘However, I am glad to see that things are moving in a positive direction and I hope that this helps to identify a successful treatment plan for Maria.’
Maria, who was formerly the chair of a reproductive charity in the 1990s, said women who suffer from the condition ‘should know they are not freaks’.
She added: ‘People shouldn’t have to go through this and be ridiculed. It’s far from funny. This has broken up marriages.
‘Some women have taken their own lives. It saps your confidence because, to be honest, there are days I wish I wasn’t here.’
If you or someone you know has contemplated suicide or is in need of mental support, contact Samaritans for free on 116 123 or www.samaritans.org.