The first Nurse Practitioner (NP) that I saw at the vulvovaginal specialty clinic I attend -- let's call her the Bad NP or BNP for short -- failed to diagnose my DIV. She diagnosed vulvar inflammation and prescribed a steroid cream for that, but she had no explanation for the vaginal pain and copious discharge that I was experiencing. I remember leaving the appointment with her in tears. It was incredibly discouraging to, after a year of moving from doctor to doctor in search of a diagnosis, finally arrive at a specialty clinic and STILL not have a diagnosis that logically explained my symptoms. She had looked under the microscope at a sample of my vaginal secretions and told me everything looked fine. When I called her to follow up and to explain that *my God my vagina is on fire and it's not possible for this much discharge to be normal* she refused to change the course of treatment.
Happily, upon a nurse's gentle recommendation, I switched to another NP -- let's call her Wonderful NP or WNP for short -- and I immediately got the DIV diagnosis. WNP came back from looking at my vaginal secretions under the microscope and told me I had tons of white blood cells and very few lactobacilli -- classic symptoms of DIV. WNP saw me for a couple of years and did a wonderful job sorting out what medications would work or wouldn't work for me. She worked progressively, getting my vulvodynia and DIV under control first, then sending me off for physical therapy for the vaginismus. She told me that many women make a complete recovery from DIV but that some percentage of women just never eliminate their symptoms entirely. A couple of years into the treatments, I had come to terms with the fact that I fit into that latter category.
Sometime after I reached a decent "steady state" in terms of my symptoms and medications, WNP left the practice, directing all her patients to another NP -- we'll call her Friendly NP or FNP for short. FNP saw me for over a year, and simply helped me stay in steady state. We made no major changes to medications etc. -- probably because I had already exhausted all the options. She would generally come back from looking at my vaginal secretions under the microscope and say something like "well, you don't look great, but you don't look too bad; I wouldn't change anything," and this simple assessment usually corresponded to my actual symptoms.
FNP saw me during my third trimester of pregnancy, correctly predicted the improvement in my symptoms during pregnancy and nursing, correctly predicted that the improvement wouldn't last, and kindly offered to help me via phone and/or in collaboration with my local midwife, as she understood how difficult it might be to travel to the clinic once the baby was born. And then poof, FNP left the clinic without a recommendation of someone else to see there. (And yes, I did google her, but it looks like she moved to a teen health center, which doesn't seem to be a place to which I could appropriately transfer my care).
So, after much foot dragging I finally called and made an appointment with Dr. Are-you-sure-you-know-what-you-are-doing? We'll call her Dr. ? for short. I saw Dr. ? last week. Dr. ? did exactly what BNP did way back at that first visit. She looked at my vagina with the speculum. She commented on the copious and blood tinged discharge. She, somehow in a way that made me feel as small as a mouse, asked me if I needed a pad after the exam (because of all the discharge). She looked at the sample under the microscope and came back to tell me everything looked surpriseingly good and I didn't need to go back on the hydrocortisone suppositories. This is the part that earns her the name Dr. ? as she had no real explanation for the discharge. She said that maybe I was ovulating and that we would just need to "keep an eye on it." So, 7 hours of driving and all I got was a lousy tube of lidocaine.
To be fair to BNP and Dr. ?, I suppose it's possible that I am occasionally clinically a-symptomatic? I have no idea. WNP and FNP never over the many years of treating me came back to me and told me I looked wonderful and not a white blood cell to be found. This is why I tend to think BNP and Dr. ? don't know what they are doing, at least when it comes to DIV.
Dr. ? recommended physical therapy for the vaginismus, which is no doubt a reasonable recommendation. I know my muscles are tight. It's been ages since I used a dilator. My whole pelvis and hip area is tight -- when I walk my hips click like a Golden Retriever with hip displaysia. However, the nearest pelvic PT place is two hours away from me. Dr. ? recommended I try to find another place in the nearest city, which, even if it turns out they have a pelvic PT place, is still almost an hour away. Between the baby and work, I'm lucky if I have time to cut my fingernails let alone spend an entire afternoon or day per week driving to PT. It is just not an option for me now.
And anyway, I think what I really need moreso than time with dilators and the biofeedback machine is something that addresses my whole hip/pelvic region. I think yoga would really do the trick. So, on my 3.5 hour drive back from the clinic I planned to join the YMCA, and try to do 2 yoga classes a week, putting the baby in the YMCA child care while I in class. If I could squeeze in one more session at home with a yoga video, that might be enough to impact my vaginismus and pelvic muscles.
It sounded like a good plan until I looked up the YMCA schedule and found that childcare is only available smack dab in the middle of morning nap time. So now it's back to the babysitter drawing board (I've had just awful luck trying to find a sitter and had high hopes for the drop in child care option at the Y).
And then I went to the bathroom and a giant glob of discharge came out (sorry -- you knew this blog wasn't for the squeamish, right?).
And then my husband wanted to have sex. That's when I crumbled into tears. I wanted to say to him "don't you see, it's just never going to get better; I am so discouraged." But I didn't, because that would have made me cry more.
But my vagina and I, we are very discouraged.
I have DIV, vulvodynia, and vaginismus. When I have low moments, I often wish for some kind of community of support. For that reason, I have created this blog. I have some posts here about my own experiences, but what I'm really hoping to do is post stories from other women (from YOU!); your story of your diagnosis, your treatment, and your life with DIV (and/or vulvodynia, vaginismus, lichen planus, etc.). If you would like to share your story, please hop on over to my contact form on the home page and send me a note.