Hurting and Ashamed

Friday, June 24, 2016

Question

Dear Patrick: I am writing about the woman whose girlfriend wanted to have, she felt, too many orgasms. I am in a similar position, which is that I have orgasms all of the time. Only it is not a pleasant experience, no lover or partner is involved, and it is not within my control. I can’t even tell you how many times a day this unpleasant thing happens. It can be set off by pressure from my clothing, by sitting down, or the vibrations of a car engine. It interferes with lovemaking because my partner can tell I am not responding to what he is doing, but rather to my own body’s out-of-control nerves. I don’t know what it is like to have an ordinary experience like masturbation because I only touch myself to try to soothe or stop the chain of orgasmic spasms. Sometimes I have to sit in a tub of warm water to urinate because of pain in my urethra and bladder. I feel violated by the way my body is behaving. It makes it very hard to be out in public. Sometimes I can’t repress what is going on. I jerk, moan, or shudder, and people think I am behaving very strangely. Only a few people like my mother, my sisters, and my best friend know what is going on and believe me and support me. I have tried to find a doctor who can help me to no avail. Have you ever heard of this, and what if anything can be done to help me? Please don’t tell me I am a nymphomaniac, as one OB-GYN did.

Answer

Dear Hurting and Ashamed: The term “nymphomania” is an outmoded insult that has no place in modern medical discourse or in therapy. It amounts to male “experts” shaming women for enjoying more pleasure (or having more sex sans pleasure) than some idiot dude thought they should. Like most insults of its kind, it is used only for attempting to control or repress women, and does nothing to help us understand human sexuality or the unique problems women face in trying to be sexually empowered in cultures where they are not the dominant gender.

The proper term here is “vulvodynia,” which simply means pain to the external female genitals. (Not everyone who has vulvodynia is also experiencing a sensation that resembles orgasms, by the way.) You need to see a specialist who understands this condition and has experience working with it. I am not a doctor so I can’t diagnose you or prescribe a treatment. I have heard of similar symptoms so I can throw out a few ideas. But you shouldn’t take anything I say as gospel. You will need some complex testing and may need a few attempts at effective treatment to find a solution. It’s estimated that anywhere from hundreds of thousands to millions of women deal with this nightmare, so you are not alone. It’s just that women wind up being isolated because it is such a difficult health problem to discuss. Nobody sitting in the waiting room wants to turn to the woman next to them and say, “I can’t control how many times I have an orgasm every day, and it doesn’t feel good, it feels really painful.”

It is possible that your central nervous system is misfiring. There may be a pinched nerve somewhere along your spinal column, sciatic nerve, or elsewhere, perhaps in the pelvic bed. Irritated nerves could be firing at irregular intervals and creating powerful stimulation that mimics the effects of orgasm without giving you any of the pleasurable benefits. It’s been theorized that allergies, hormonal imbalances, chemical sensitivity, auto-immune diseases, chronic yeast infections, trauma suffered during childhood sexual abuse, or genetic issues could contribute to this complex problem. You wind up with pain in the genital area, but no gratification. To call these “orgasms” is misleading. I might suggest that when you see another specialist, hopefully a neurologist, you don’t use the term “orgasm” at all and instead talk about stabbing, burning, or electrical pelvic pain, describing it as accurately as you can. Tell them that the sensation is so intense, it sometimes makes you jerk or cry out involuntarily, and that this happens several times an hour (or whatever the accurate frequency might be). Ideally, you would be seen in a hospital or clinic where a neurologist, an OB-GYN, and an internist could work together to determine what was happening and how to best treat you.

I know many women who have a variety of nervous disorders in the pelvic region who have gotten relief from oral pain medication, lidocaine gel, or sedatives. Some other helpful treatments include learning how to meditate, cognitive-behavioral therapy (NOT because this is in your head, but because pain this severe is traumatic, and you need to break out of the cycle of reacting to trauma in order to calm down your emotions), or a TENS unit. Less drastic treatments include application of ice packs and heat, chiropractic adjustments, acupuncture, hypnosis, or EMDR. I have even heard of homeopathy being helpful to some sufferers.

Because there are many causes for this type of pain, and many possible solutions, I urge you to seek out any remedy that is not: (a) beyond your financial means, (b) against your principles, (c) in contradiction to your reason, and (d) too exhausting. Many people with chronic health issues are unable to seek solutions all of the time. We cope as best we can, and when we are doing well and have a little extra energy, we seek out new information or research and new doctors or other healers. Then we may subside into simply coping as best we can. Don’t judge yourself for this, it is a normal cycle. Just continuing to live on a daily basis takes an enormous amount of your energy. I am glad you have some loving people in your life to give you strength and validation.

Start looking for a clinic where there may be helpful doctors. Don’t restrict yourself to local facilities. It’s worth it to make a trip to see people who know what they are talking about. Unfortunately, when you have an illness that is not as common as smallpox, you wind up having to become a patient advocate if you want good care. You have to research the condition in medical journals. You need to join groups that advocate for the illness to get funds for research. Look for research projects that may allow you to sign up for new treatments. Keep careful records about what seems to make this worse or better for you, or what doesn’t help at all. In general, the more you feel that you have taken control and you are doing the best you can to protect and provide for yourself, the better you will do emotionally. Feel free to write back if you need to vent or look for additional resources.

The National Vulvodynia Association can be located on-line at www.nva.org. There is helpful info on their website.

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