You may recall that my last appointment with a doctor at the vulvovaginal speciality clinic was a lackluster experience. After hemming and hawing for several weeks while my symptoms grew worse and worse, I finally contacted the clinic to try to get an appointment with someone else. On Christmas Eve, someone from the clinic called back and was incredibly friendly, scheduling me with the doctor who runs the practice, and expressing concern that I have a positive experience and get back on track with a treatment plan.
The new doctor (Dr. Competent) was super. She took one look at the copious discharge and said "yep, like amoebic yellow custard" and when she came back from looking at the sample under the microscope, she said "well, no surprises here." I still don't know why Dr. ? didn't have a clue, but this new doctor clearly had no confusion about what was going on. She said my vagina was "begging for estrogen" and she prescribed the old stand-by, hydrocortisone suppositories, with estrogen (estradiol) added and also with an anti-yeast compound. One suppository a day for two weeks, then 3 times a week for three months.
I'm not seeing any positive affects yet, which I'm not totally surprised about, given how bad things had gotten in the past few months. I know from past experience that it may take months on the suppositories before things settle down, "down there."
She of course also emphasized the need to do dilator work, which I have not done at all. I know, I'm a bad patient. It's just... such a not fun thing to do. So at the end of the day after work, baby care, laundry, dishes, mopping the floors, when all I want to do is go to sleep, dilator exercises tend to get pushed to the back burner. My excuse right now, is that using dilators while my vagina is still so inflamed is only going to confirm the vaginismus pain response and make things worse. I'll start back up with them once the inflammation lessons or two weeks before my next appointment... whichever comes first.
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.
A website visitor wrote in recently to report on some preliminary success she was experiencing with Vitamin D/Calcium supplementation for excessive vaginal discharge. With permission from her, I am posting her story below. You can also read my previous post about the connection between DIV and Vitamin D. If you would like to share a story about your diagnosis, treatment, or coping strategies, or if you would like to share resources, please feel free to contact me using the form on the site home page.
Hi. I read your post and wanted to share mine with you. I have been experiencing the same symptoms as you for the past year and a half. I went to my doctor multiple times, had multiple tests, took multiple prescriptions and no relief. I knew something was wrong and I kept insisting to my doctor to continue to run tests.
I had been diagnosed as having extremely low vitimin D levels and was prescribed 70,000 iu once a week. Shortly after starting the regimen, I noticed that I was waking up extremely sore the day after taking the pill, so after about 4 weeks, I stopped.
This past Friday, I was researching causes of extreme discharge, as I had done thousands of times, but this time I Googled "low vitamin D levels and extreme discharge" and found the following article: www.ecardiologynews.com/fileadmin/ghi_archive/articlepdf/ct/081010075.pdf. This news has literally changed my life!
The women in the case studies had been suffering from DIV for years and years! One was prescribed 50,000 iu of vitamin D 3 times a week along with 2000 iu of calcium once a day for 8 weeks, and then 50,000 iu vitamin D and 2000 iu of calcium daily for 4 weeks. Before the end of the 12 weeks, she had been cured!
I immediately called my doctor and requested that she read the article. She had not considered DIV as the cause of my symptoms, but after reading the article, she apologized and called in the prescription. I started the regimen last night and I notice a change ALREADY!!!!! I cannot believe it!
I suffered for soooo long with the embarrassment and discomfort of this disorder, not knowing what it was and feeling like I had an STD. I stopped dating a year ago because I was afraid to allow anyone to get close to me. I've spent thousands of dollars in the past year on feminine hygiene products alone.
I am so overjoyed at the prospect of not having to deal with this anymore! Every search I had ever done concerning excessive discharge related it to some type of sexually transmitted disease or vaginal disorder, which made me feel dirty. This article gave me a full understanding of what I was dealing with and why. Feel free to share it on your blog so that others in our same condition can have their vitamin D levels checked to see if there is some correlation.
I hope this helps someone in some way, and you too! Thanks for sharing your story.
In The V Book, Stewart (2002) calls DIV (Desquamative Inflammatory Vaginitis) the "mystery vaginitis." She could just as well be referencing the difficulty patients have in obtaining a diagnosis ("you are a mystery patient!") as she could be referencing its unknown cause.
The symptoms of DIV are:
The cause is unknown. While it is possible that it is caused by an unknown bacterial cause, it is most likely an auto-immune disorder, and there may possibly be a link to lichen planus (which is also auto-immunie in nature). A lack of estrogen may also play a role.
Clindamycin is an antibiotic that is also anti-inflammatory. Sobel (1994) published a study in which >95% of women treated with clindamycin resulted in clinical improvement (although 30% relapsed). As a result, he hypothesized an unknown bacterial agent as a cause of DIV. Stewart (2002) reports limited success with Clindamycin. Mechcatie (2005) says that DIV is not caused by infection; the anti-inflammatory properties of Clindamycin are the reason it is used as a treatment.
Hydrocortisone and Estrogen
Hydrocortisone suppositories are the other common form of treatment, and estrogen may be added to the hydrocortisone suppositories. The Centers for Vulvovaginal Disorders describe success with a "shot-gun" approach of suppositories that include hydrocortisone, clindamycin, and estrogen.
There is limited research that suggests that low levels of vitamin D could cause DIV and that supplementing with vitamin D can reduce symptoms. You can skip on over to my previous blog post on vitamin D to read more.
Drexel Medicine "About Desquamative Inflammatory Vaginitis"
The V Book, by Elizabeth Stewart (2002)
"Desquamative inflammatory vaginitis: a new subgroup of purulent vaginitis responsive to topical 2% clindamycin therapy." by JD Sobel in The American Journal of Obstetric Gynecology 1994 Nov;171(5):1215-20.
OHSU Center for Women's Health "Desquamative Inflammatory Vaginitis"
"Desquamative Vaginitis: Not an Infectious Entity : Condition may be a range of blistering disorders; as such, no one treatment is always appropriate." by Elizabeth Mechcatie in Hospitalist News, September 1, 2005
The Centers for Vulvovaginal Disorders "Desquamative Inflammatory Vaginitis"
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.