Punim (shyshutterbug) wrote in vaginapagina,
Punim
shyshutterbug
vaginapagina

Vulvodynia treatment

Howdy everybody :)

I have vulvodynia. While I have good days and bad, my doc has deemed me a "pretty freakin' severe" case (yes, "freakin'" was in her direct quote) and it has never been well controlled. On a good day, I have searing pain sitting in certain positions or wiping after I pee; on a bad day, it has me in tears and unable to close my legs unless it's around an ice pack. Nine times out of ten, this pain flares without any stimulus whatsoever. I have found some mild and usually transient improvement with diet modification (mostly with avoidance of acids and oxalates during bad flares) and go through topical lidocaine like there's no tomorrow, which provides me with...well, better relief, but still not great. Pelvic floor physical therapy and acupuncture have been proposed as viable alternatives, and while I'd like to try both, I can afford neither (I live in the US; I am insured, but I have wretched benefits, and those for PT are particularly terrible).

My doctor has proposed a treatment that, in all the years of seeking out solutions, had never before been suggested. She proposes trigger point injections to the vestibule, at 12, 3, 6, and 9 o'clock, of a cocktail of lidocaine (for numbing purposes) and kenalog (a steroid to lengthen its effect). She tells me this should give me longer-term, more effective pain relief than I'm getting with topical lido, which makes complete logical sense. I have deep concerns with how well I would tolerate injections in the most painful region of my body; I've had injections of lidocaine before, but never in that location. She also could not be specific on how long the effects would last; she said one may do the trick for months, or I might have to get one a week for months.

I wonder: Have any of my fellow VPers had any experience with this treatment? Good, bad, indifferent? I'm particularly interested in how long-term pain relief was achieved and how tolerable the injections themselves were. Obviously, I realize that like with everything, YMMV, but I feel that I'm going in blind if I elect this treatment right now and would appreciate some guidance beyond that of my physician, who has essentially told me that she's out of ideas other than this. (Furthermore, I also can't really afford THIS treatment, though it's a damn sight better than my PT benefits - so I definitely don't want to pursue it without further evidence that it might be beneficial!)

Further background info: I'm 24. I have PCOS (which is getting under control now) and endometriosis (which is rather well controlled) in addition to the vulvodynia, but no other chronic health conditions. I am on HBC (due to a strong family history of reproductive cancer and my personal history of menorrhagia, I've been medically advised not to discontinue it unless or until childbearing is desired). I am not sexually active and I have zero plans of becoming so anytime in the foreseeable future.
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