My name is Kim Ramsey. I was diagnosed with Persistent Genital Arousal Disorder in June 2012. I wrote an article for a news agency that then sold that story on to a UK Tabloid called the Sun who published a very sensational report of my medical condition. To add insult to injury they attached my profession, home address to my medical condition. My article went viral and then with the help of the social media the issue went global. Obviously it was not the raising awareness that I had hoped to gain.
I became notorious as the Registered Nurse with “100 orgasms a day“. Ha, Bloody Ha. Not. Everybody and anybody had a good laugh on my expense, from lay person to celebrity to blogger had something to comment on regarding this. I was offered a few television interviews to talk about my condition. But none so far have been reasonable or appropriate with their agenda. So therefore I have not been on TV to educate the masses and as you know there are a lot of people who don’t have a clue about how their body functions.
PGAD is a subset of the broader diagnosis of Chronic Pelvic Pain. CPP affects 30 million women in America and 10-15 per cent of women globally.
PGAD has gained notoriety as the media focuses on the sexual aspect of this multi spectrum disorder, such as the fictional character in Gray’s anatomy was depicted had orgasmic seizures. Women such as me often get ridiculed as the media prefers to sensationalize the more salacious aspects of the disorder instead of documenting the more accurate sanitized medical version of events. What’s even more difficult in the bias that many women receive when they approach their healthcare provider.
Sexual function is a basic human right and when a woman attempts to report her concerns she is often dismissed or told to forget about it. This is usually devastating for anyone and the more you ask, the less they know. Most women end up seeing at least five doctors before they find someone willing to listen discerningly to their symptoms; has experience of this condition and is willing to diagnose. This is usually because of the doctor’s / nurse practitioner or physician’s assistant own embarrassment or lack of knowledge.
Usually the treatment modality is medicine that treats the accompanying depression and the pain. Yes, women who have uncontrollable unwanted sexual arousal have high level of distraction, constant pain to their genitalia and get profoundly depressed; some to the point of suicidal ideation. Other women are restrained by dynamics such as culture, religion, social standing, emotional and psychological issues. The most pervading and destructive factor of all of this is the lack of information. The lack of information is underpinned by the lack of research and the medical profession’s unwillingness to accept that women do need assistance with their sexual function.
This has been the biggest gender bias in the health care industry. I mean let’s face it, if I walked into a doctor’s office as a man and complained that “I couldn’t satisfy my wife or partner”, there would be much more sympathy, treatment and medications for my plight.
I hope that eventually we can get all healthcare providers to the educational perspective that sex is just as important to woman as it is to a man and that women do have issues that can be addressed.
PGAD does have some very clear orgasmic symptoms in that are very different for each woman. It is to be a prolonged phase in the plateau phase of the orgasm. Some women get infuriating arousal that cannot be satiated with self-stimulation. Some women do not get the orgasms but get the arousal. Some women get the arousal can orgasm but the orgasm has no quality and there is limited or no refractory phase in the orgasm so there is an immediate return to arousal. This can often cause the women to become engaged in a futile masturbatory cycle with self-stimulation for hours without relief.
The neurological component is integral in this disorder as the nerves that supply the clitoris, vagina, bladder are hypersensitive and cause the woman or man to experience arousal symptoms which are not relieved by masturbation or sexual intercourse. Also the pelvic floor muscles are tighter than usual and the Psoas muscles holding the spine and pelvis together is tight. Different doctors have a variety of regimes ranging from: Botox injections to the clitoris, to Pudendal nerve blocks, treatment with anti-depressants, visceral manipulation, Physiotherapy, sclerotization of the dorsal clitoral veins Mindful meditation and talk therapy, electroconvulsive therapy. It should be noted that it is not known what the long term effect of numbing agents are into the genitalia nerve.
Also an avoidance of a variety of triggers ranging from: no unnecessary vibrations, via music, machinery equipment e.g. electronic toothbrush, cellphone, pH level of bladder needs to be maintained so that irritation of area does not inflame the pudendal nerve endings and the condition. Life has areas of censor-ship so that anything that is aggravating such as use of tampons, G-strings, high heel shoes that off-balance the equilibrium of the pelvis has to be limited or eliminated from one’s lifestyle. (I have to admit that I love shoes so my sexual medicine specialist does know that I wear heels for short periods of time so that I don’t feel deprived by my condition.)
Unfortunately some medications can trigger even more intense arousal in the patient. So avoidance of medications with sexual side effects is integral. Also discussion with a prescribing physician is fundamental when negotiating medications for another condition. Living with PGAD is a balancing act where the woman is ultra-careful as to what she does, how she lives and mindful of any potential triggers.
Discussion with a potential partner is a whole other issue that deserves another essay. Wow, I hear you say, a woman who is multi-orgasmic!! But it’s not as great as most people think. It is a very personal, tiresome and distressing disorder, Some men leave as their ego cannot take the constant demands for sex. It gets tiresome. The interpersonal dynamic and the pressure placed on any intimate relationship are diabolical.
This of course has ramifications for the well-being and functioning of the patient. Not every clinician establishes with the patient how they actually orgasm. It has been suggested that 95 percent of women experience clitoral orgasms, 65 percent of women have vaginal orgasms and 35 per cent of women have orgasms via the cervix. I have all three. The one hundred orgasms a day which I described in my article initially may start off pleasurable but then end up being painful as the nerve endings continue to fire sporadically.
I also have the rest of the physiological responses that come with orgasmic activity such as increased heart rate and blood pressure, vaginal swelling and pain, breasts engorgement (this can last for two weeks sometime after the orgasmic activity has ceased) Some doctors classify this as a “flare-up.” I absolutely hate flare ups as they are disruptive to my daily activities of living and my professional life. My search for a solution will be more fulfilling once I can get the AMA, the nursing board of education to understand that human sexuality needs to be on their curriculums. So that more women who have my condition and those who are an-orgasmic can stop have their human rights being violated.
I am not sure if I have answered some of your questions. But let me know if you need more details. The topic is wide and varied with limited treatment modalities and the more we have a dialogue, the better chances we have of understanding this disorder.
Kim S Ramsey