It’s 2010, and I’ve just started a teaching job in South Korea with my boyfriend. Sex has been painful on occasion, and I think I might have a chronic yeast infection or something. I have spent several hours looking up gynecologists who speak English in the nearby city of Busan. I contact one hospital and a nurse calls me back to set up an appointment. We take a bewildering trip into the shopping heart of Busan (think four stories of flashing neon lights on every block). It is a large hospital and it turns out that we have a nurse translator rather than a gynecologist who speaks English. She takes me into an examining room, where I lie down on the examining table, put my feet in the stirrups, and spread my legs. (You know the drill). The strange part, for me, is that a curtain is drawn across my mid-section so that I cannot see the gynecologist examining me. The nurse explains that this is because Korean women are very shy about anyone looking at the ‘down there. Well, I usually stare at the ceiling anyway, so it doesn’t make much of a difference. After a few minutes of probing, the gynecologist explains (through the nurse) that she cannot determine if anything is wrong. The reason she gives is that, because of her unfamiliarity with caucasian women’s vulvas (as opposed to Korean women’s), she cannot determine if the pink color is normal or inflamed. Awesome. She takes some swabs anyway, and we take the bewildering trip home again. A couple of days later, they call me to say that the Dr. thinks I might have an STD called Trichomoniasis (even though the swab was negative, but this sometimes happens they say). Horrified, I rush to the pharmacy to fill my prescription, but when I get home to look it up, the symptoms look nothing like what I am experiencing, and it seems unlikely I could have contracted an STD anyway.
Back to the drawing board.
I find another gynecologist at a smaller hospital in Busan who does speak English. She is much more thorough and appears to think I have vulvar inflammation but no infection. She wonders if I might be allergic to my boyfriend’s semen or to something else. I have been prescribed an antihistamine and advised to take baths with propolis (a resin collected by honeybees for hives). I look it up and it seems to have some potential use as an anti-inflammatory and antioxidant. Unfortunately, I have no bathtub. Instead, I have a shower head in my bathroom. Not a shower stall, mind you. A showerhead came out of one wall of my bathroom, beside the toilet and sink. One day we walk by a hardware-type store and see a large, round, plastic bucket (maybe two and a half feet in diameter). We buy it, take it home, wash it five times in scalding water, and I begin my daily routine of squatting in my bucket for about ten minutes with my bee resin. Upon visiting a local market, I realize these buckets are used to hold eels for purchase (to eat). I wash my bucket five times.
However, my random pain with sex does not appear to be abating. I do more research and find an all-English gynecologist clinic in Seoul, catering to expatriates. We have been planning to visit this metropolis anyway, so I book an appointment. If privacy was the main concern in Busan, this is an all-exposure experience. During the exam, the doctor uses a camera and shows me my vulva, vagina, and cervix on a tv! I’m a little overwhelmed. She swabs me for everything under the sun, and I am told to wait. I get a little tutorial on the menstrual cycle and how fertility works (memories of grade six puberty class come flooding back). I wait some more. I go back in and she explains that she will prescribe an immunomodulator cream, a new antihistamine, an anti-inflammatory, and anti-fungal that I should come back in a couple of months. For good measure, she swabs me with a dye called gentian violet. This is a traditional treatment for yeast infections, but for my vulva, it is the beginning of the end of normalcy. From now on, I will never have pain-free sex. The pain is so much worse – it feels like acid has been poured on my vulvar vestibule every time we attempt penetration. Oh yeah, and my vulva is now purple for two weeks. Like Barney, the vulvosaur. The immunomodulator cream is horrendously painful, so I never use it again. I keep up with the other pills because it sort of makes sense that I might have some kind of reaction to something or some kind of low-grade, symptomless infection.
I try to start trying to take control of the situation by following all that useless advice online that you get. I throw out all my underwear and buy all new, white, cotton-only underwear. I read about how it might be a low-grade yeast infection and that you can transmit it to yourself over and over again through your underwear unless you wash it with boiling water and dry it on high heat. I start boiling my underwear in a pot of water, and hanging it out to dry. I don’t have a dryer in this country, so I start ironing it afterwards. I read about how you should only sleep in nightgowns, and that you should blowdry yourself down there on low heat after showers so that it is never damp. I do that too. I make sure that I shampoo and condition in a way so that none of it can touch my vulva. If I had allergic dermatitis or chronic yeast, some of this stuff might have helped. But that’s not what I have, and none of it is working.
At this point, I am really starting to feel frantic. My fiance and I cannot be intimate at all. We keep trying after I begin one of these new treatments or practices, it doesn’t work, I pull away, I start crying, I wonder what is wrong with me, I feel like less of a woman, he feels guilty for hurting me, he feels powerless to help…What am I going to do?
To be continued…
It’s time to put this outrageous story of one vulva’s experience with vulvodynia into words. I started my blog over a year ago, but I have found it easier to talk about my fibromyalgia and chronic pain instead of the ‘pelvic pain’ – the pain in my vulva and vagina. Putting it ‘out there is scary because it is such a private part (yes, pun intended) of my life. But that’s exactly why people like me need to write about it. There is so much stigma and shame, along with ignorance and misinformation. Vulvodynia means chronic pain of the vulva, which is the outer part of a women’s genitals and includes the outer labia, inner labia, vestibule (opening to the vagina), clitoris, and urethra. The vulvar pain does not come from an infection, allergic reaction, skin condition, or other identifiable cause, and there is often no visible change in appearance to the vulva. Vulvodynia can be generalized (cause pain everywhere in the vulva) or localized (to a specific area of the vulva, often the vestibule, which is the vaginal opening). The pain can be constant or intermittent. One specific sub-group of women have vestibulodynia (pain of the vestibule), which is usually felt when pressure is applied to the area, such as when trying to have sex, when sitting down, or wearing tight pants. How does it feel? Raw, burning, irritated, throbbing, aching, tingling… there are many different sensations. The condition is common and affects up to one in four women at some point in their lives, according to the National Vulvodynia Association. For some women, the condition spontaneously resolves, but many other women have to manage it throughout their lives. I fit into this second group, and this new blog section will describe the five-year process of coming to terms with my vulvodynia and the ongoing process of learning to manage it.
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