I was laid off from work this spring.
It's not nearly as bad as it could have been. I had ample notice and my husband and I have always tried to budget ourselves so that we could get by on one income. But it does mean that I lost the health care insurance my family and I had previously received through my employer. For the last several months we've been covered via an "Obamacare" plan. I've been extremely grateful to be able to afford coverage. I don't have to worry about losing my house and declaring bankruptcy if a major illness comes my way. Yes, Mr. Congressman, Obamacare has been a blessing for me this year.
Nevertheless, this sequence of events does have some negative impact on my poor suffering vagina, mostly because I now have a deductible so high that it would only be met by giving birth or having major surgery. Routine visits to the vulvovaginal specialist are now a bit of a strain on the wallet.
I did, however, have an appointment in early spring, just after joining the Obamacare plan. I saw a new doctor, actually, the... let's see... I dunno, too many to count. I think maybe she was the 6th or 7th person I've seen since diagnosis? Dr. Competent, who I had seen over the winter, recommended her because she is 2 hours closer to my home.
I call the new close to home doctor Dr. Got it Together. She's Got it Together because she's my age, an amazing vulvovaginal specialist, skinny and well dressed, and a working mother to boot. Newly laid off, sitting in her office in a crumpled sweatshirt and still sporting my 10 extra "baby weight" pounds, I felt more than a little like a lump, but we can talk about how being laid off erodes every last shred of your confidence some other time. Anyway... I had no parabasal cells, normal ph, but still a few white blood cells. She suggested that I switch to just plain estradiol (instead of hydrocortisone and estradiol) since the body can build up a resistance to hydrocortisone over time.
She also suggested -- like everyone else -- more physical therapy, but the amazing thing was that she new of someone who had opened up an hour away from me (much closer than the previous place I had been to which was 2 hours away). I was just on the verge of maybe possibly perhaps considering (I mean for real this time) finally doing physical therapy again when -- the bill came for the appointment with Dr. Got it Together. $400. I looked up the deductible amount for my new Obamacare plan and then I quickly concluded, no physical therapy.
Now, there are still dilators collecting dust in my dresser drawer. I could use those, but... that's another post for another day.
I've gotten several questions over the years that go something along the lines of:
"I tried the suppositories for two weeks and still have all this vaginal discharge and pain. What now?"
It's my experience that it can take months, maybe even many months, for the inflammation to settle and the symptoms to resolve. In my case, it wasn't until we added some estradiol to the suppositories that things really started to improve. I guess if you think about it, it seems reasonable that it should take a while for your body to simmer down -- after all, if you are like most women with DIV, you were in a constant state of supercharged inflammation for years before you got a diagnosis.
It's also worth taking a look at what else is in the suppositories (if anything). I'm currently using suppositories with both estradiol and an anti-yeast agent. And I'm not feeling one freaking bit better, after 3 months of being on them. It just occurred to me that I should ask to have a prescription for suppositories without the anti-yeast. I never have had a problem with yeast if not on antibiotics, and I wonder if the yeast drug is causing trouble. I know that way back when, years ago when I used Monistat, it sure ramped up my symptoms at the time. Hmmmm.
This is a picture of a suppository, in case any of you readers were wondering what they look like (and frightfully picturing them the size of a penis).
They really aren't that bad -- no more than an inch in length (I have small hands). The hardest part about using them is 1) remembering to put them in and 2) getting them out of the little plastic sleeve they come in. You have to get them from a special compounding pharmacy, but the pharmacy ships, so it's no big deal. I just switched pharmacies and a package of 48 cost me about $50. Insurance doesn't cover them. These are hydrocortisone compounded with estradiol and an anti-yeast agent.
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.
I really hate the term "sex life."
Although it's kind of hard to imagine what it would be like to have consistently pain free sex, I think that for me it would be like eating chocolate cake. I might sometimes think: "You know what I could go for? A nice piece of chocolate cake!" And if there wasn't any cake in the house that night? I'd probably be a bit disappointed, but I wouldn't think it was tragic. I wouldn't be bemoaning my lack of "cake life." Or fretting about how other people are having more cake than I am. Or wallowing in feelings of lack of fulfillment due to lack of cake.
My view point is probably wildly influenced by my pelvic pain. The physical pain and emotional anguish it causes pretty much leave me with 0% libido. But I DO acknowledge the power sex has to bring you closer to you partner. I can see how pain free sex would be fun, and I understand that it also has a magical way of smoothing over the more minor disagreements you and your partner might tend to have about, say, the way that dirty dishes should/should not be left in the sink. But, as a critical component of your life providing fulfillment and sense of purpose? I don't understand it, and moreover, I think it is a construct of modern media.
Part of wikipedia's definition of the term "sex life" states:
The individual is able ... to have an "area" of his or her overall "life" that involves sex in a way that is somewhat similar to how athletes have an "area" of their lives that involves sports or how musicians have an "area" of their lives that involves music. A person with a secure and constantly developing sex life is inherently able to regard their sexuality as an active part of themselves, and although a secure sex life does not necessarily mean that the person will always feel self-confident or sexually attractive, consistent access to sex and the ability to deepen and broaden one's sexual skills provides a certain psychological assurance of sex appeal that people who do not have a "sex life" tend not to have.
Okay, I am sorry, but sex just does not require the intellectual focus or challenge of music, art, or similar endeavors. And, seriously, just how much physical skill does sex require? Sure, the teenager engaging in his/her first sexual encounter is going to be awkward, and needs to learn a few things here and there. But can you really equate sexual skill with the skills required of most athletes? I think the "skills" required for sex are a far cry from the skills required of just about any sport except maybe... walking.
I think that much of the perceived importance of one's "sex life" for personal happiness and fulfillment is due exclusively to the media. What would our sexual expectations be if we weren't constantly being inundated with sex through every media channel -- websites and news articles telling us how often everyone else is having sex; books and websites offering to improve our sex lives; surveys designed to help us determine just how bad our sex lives are and the negative impact of these woeful sex lives on every aspect of our well-being; comedy shows and movies and books and music that all seem to be INCAPABLE OF FINDING ANY SUBJECT MATTER ASIDE FROM SEX?
Yes, okay, I am angry. And, I know: sex sells. If no one bought this crap, it wouldn't exist. But it's kind of sad, too, you know?
Who cares about how much sex anyone else is having? I mean, how is it even relevant? And by the same token, why should you care what kind of sex other people are having, and where, and with whom? But to sell you stuff, media tells you that you need to be good as the next guy, or better. The media says: you need more sex to be happy. Actually, you don’t just need more sex, you need better sex! More and better! The media says: don't you realize that you have this whole huge component of your life -- your sex life -- which is currently incredibly inadequate? You are you dreadfully behind the 8 ball here! What you really need to do is buy this magazine/book/video/lingerie, etc. If you don’t, you surely are living a pathetic and unfulfilled existence. The media says: you need a "sex life."
And if you and your dysfunctional vagina don’t have enough going on, now you are the unlucky bearers of the double whammy, for now you get to hear from your partner that “other people have sex 2.5 times per week” (or some variation on the theme). Great, now you not only have to try to satisfy your partner, but also satisfy the random expectations created by Company X who just really wants to sell a bunch of God damned magazines.
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.
Sadly, this is about how I feel most of the time. Nothing like chronic vaginal pain to ruin the mood. I had to laugh at the cartoon, though -- the electric fence charger is a nice touch.
Several stories from vulvodynia sufferers collected by the Vulval Pain Society in the UK: http://www.vulvalpainsociety.org/vps/index.php/personal-experiences
A woman with first initial R. recently wrote to me via the site and when I tried to email my response to her, the message bounced. If this was you, please write again! I have some links and advice r.e. your question.
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 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.