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.
I am supposedly taking 2,000IU of Vitamin D twice per day but in reality I remember to take both doses of Vitamin D around 60% of the time.
On the symptoms front, everything is getting a bit worse. Well, that is not true. The Vulvodynia and vulvar inflammation is thankfully not flaring up. But the discharge is definitely getting worse, as is the dyspareunia. It is quite obvious that all the benefits I experienced post-partum and during the early phases of nursing have all but disappeared.
The ironic (ironic? annoying? unfair?) thing is that the little bugger is still nursing every 2-4 hours round the clock! So I have no idea how I am ever going to get down to the vulvovaginal clinic for a check up and fresh prescriptions for my medications. The clinic is 3.5 hours away and I simply can't imagine having him in the car for 7 hours. On the other hand, he is still nursing with such frequency that I can't leave him with a sitter for that long.
If the NP I was seeing before he were born will still at the clinic*, I am sure I could get some refills and adjustments over the phone, but sadly, she is not. She is the second NP at that clinic that I have seen and has subsequently left. So I have to see someone new. Which I dread. I hate having to see someone new -- even a vulvovaginal expert; you just never know what you are going to get -- knowledgeable and sympathetic, or uninformed and brusque. A sensible person, no doubt, would call the clinic, explain my situation to a nurse, and ask about my options. However, I am currently choosing to a) dread sex with increasing zeal and b) procrastinate about doing anything that gets me closer to the clinic.
*With the exception of half-doses of hydrocortisone during the third trimester, I stopped using medications during pregnancy because no one seemed to really know if they were safe or not for the baby either during pregnancy or nursing. The NP referred me to the midwife, who checked in with a doctor who, as far as I could tell, just kind of said "sounds okay" which wasn't really the "yes, numerous studies have show the safety of this" level of comfort I was looking for. Therefore, I have pretty much been without meds for two years now, and all things considered, I think I should be pretty happy and grateful that things have gone as well as they have for so long.
I had my Vitamin D levels checked yesterday at my annual exam and my level is 23. My midwife said that normal is 30-50 and she prefers closer to 50 than 30. I have been taking 2,000 IU for over a year now, since my level was checked when I was pregnant. I don't remember what the level was then -- just that it was low but not atrociously low. It doesn't really seem like 2,000 IU did anything for me, but we are going to try 4,000 IU per day now and I am thinking I will ask to be retested in another few months.
On another note, as you can see, I survived my annual exam. It actually wasn't that bad. The speculum hurt, but I didn't die. I definitely think my symptoms are better than they used to be, and so is my anxiety about the exam (the two kind of go hand in hand).
And the best part of the whole thing -- I found out about the new(ish) recommendations on pap smears: if you have never had an abnormal pap and your hpv test is negative, you can wait 3-5 years in between paps. This means I will not be having another pap until 2019, people. 2019. Booyah, as they say.
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 been meaning to do some research on the relationship between vitamin D and DIV for a while now -- ever since a website visitor emailed me to tell me about how her symptoms had improved with vitamin D supplementation. Part of the reason I've been putting it off, is that it seemed like a bit of a project, but it turns out that there is not much in the way of research out there -- at least that I've found -- so all that procrastination was for naught. I've found just two publications on the topic and together they describe only five women. The small sample size should probably come as no surprise given how rare DIV is, but, gosh -- is a sample of 5 even statistically significant?
The first is Peacocke et al (2008). This paper describes one woman who had low vitamin D levels and who suffered from DIV. She was cured with a therapeutic program of vitamin D and calcium citrate. They used 50,000 IU weekly of vitamin d and 1000 mg of calcium carbonate daily with cholecalciferol 2000 IU.
The second is a description by Peacocke et al (2010) of 4 women with low vitamin D levels, with DIV and with Crohn's disease. The women had an improvement in DIV symptoms when their vitamin D levels returned to normal range.
Why is vitamin D important for a healthy vagina? The authors suggest that vitamin D is critical to the generation of healthy vaginal cells and that vitamin D deficiency results in "loss of epithelial structural integrity and desquamation" (Peacocke et al 2008, 75). Desquamation (shedding of cells) is one of the hallmark symptoms of Desquamative Inflammatory Vaginitis (DIV).
I haven't found any other research specific to DIV, but I did see some articles suggesting that Vitamin D supplementation for women with low vitamin D levels may reduce the occurrence of bacterial vaginosis (BV)... and then some articles saying oooh, never mind, vitamin D probably doesn't reduce BV after all.
Perhaps the jury is still out on this one.
Whether or not it helps DIV, it seems prudent to bring low vitamin D levels up to normal range just for the other benefits (like bone health) so I think I will ask for a vitamin D test at my upcoming annual exam.
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.