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.
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 wanted to pass on this website - 2Date4Love.com - because I think it is a neat idea. It was created by a woman whose cervical cancer treatment left her with sexual dysfunction/pain. From the site:
2date4love℠ is a dating site that enables people who cannot engage in sexual intercourse to meet and experience love, companionship and intimacy.
*P.S. It is on my to-do list to clean up the resources page and add some of the new ones that I've included in blog posts recently.
Vaginismus is an involuntary tightening or spasming of the pelvic floor muscles that makes any kind of vaginal insertion (including sex) extremely painful or literally impossible. The symptoms are a burning or tearing pain during any type of insertion.
It is difficult to know how many women suffer from vaginismus -- in part because many doctors don't know how to diagnose it, and in part because many women may be embarrassed or afraid to seek medical help.
Primary Vaginismus is of unknown cause, while secondary Vaginismus is when the onset of Vaginismus occurs as a result of a trauma such as sexual abuse or the pain associated with a physical condition such as an infection.
At the time that I was diagnosed with Vaginismus about five years ago, I found that many sources of information focused exclusively on sexual abuse as a cause for Vaginismus, leaving the woman with primary Vaginismus confused and questioning her mental clarity. This, in combination with the doctor who diagnosed me telling me that it was common in "nervous, sensitive types like you" made me feel embarrassed and confused! However, the information online currently about the causes of Vaginismus seems to be much more comprehensive and unbiased (I have included some of the more useful links that I found at the bottom of this post).
Vaginismus can be a difficult diagnosis to receive because of some misconceptions that you may face from doctors, friends, or family. In particular, you may hear:
"You just need to relax!"
"It's all in your head!"
The truth is that you can't just relax -- your muscles are tensing involuntarily; without physical therapy, you literally cannot relax them. Vaginismus also is not "all in your head" -- while some cases of Vaginismus may have their root in psychological causes, this is a physical condition with physical manifestations and a physical treatment plan.
There are five common methods of treatment (often used together). These are kegals, dilators, biofeedback, pelvic physical therapy, and (in cases where Vaginismus is rooted in a psychological cause such as fear from previous sexual abuse) counseling/therapy.
Kegals sound so basic that you may kind of brush them off, but they are important. The first time that a doctor asked me to do a kegal during a pelvic exam, I was kind of shocked to realize that I couldn't do it. My muscles were already tight (so I couldn't tighten them further) and there was also kind of a basic lack of coordination. It sounded like such a simple instruction "tighten your muscles like you are stopping the flow of urine" and yet I couldn't do it. I couldn't do kegals effectively until I completed some biofeedback (see below).
Dilators are a set of plastic oblong objects (that come in a variety of sizes and materials) that you insert into your vagina. The smallest is about the size of a tampon and largest the size of a penis. The purpose is not so much to stretch the muscles, as to desensitize the area and to teach your muscles to learn to relax. You do not need a prescription for dilators, although, they may be covered by your insurance if they are by prescription. The pelvic guru.com has a handout on how to use dilators effectively: https://pelvicguru.files.wordpress.com/2013/08/vaginal-dilator-instructions-final1.pdf
One thing I would like to caution women about is to make sure you don't have an underlying vulvovaginal disorder that is causing pain in addition to (or actually causing) your vaginismus. I was diagnosed with vaginismus before I was diagnosed with my other vulvovaginal pain disorders (Desquamative Inflammatory Vaginitis (DIV) and Vulvodynia). If I had proceeded to dilator work before my DIV and Vulvodynia were under control, it could have made the Vaginismus even worse, since I would be further conditioning my body to expect pain. You know your body best: if your doctor is recommending a treatment that you feel is inappropriate, seek out a second opinion.
Biofeedback: I will admit that I was a huge sceptic when I first heard of biofeedback. The name sounded rather "new age-y" to me, and when I heard more about it, my first reaction was "you're going to put sensors where?!" However, biofeedback was one of the most helpful forms of treatment for me. The process involves having little sensors stuck on the skin around your pelvic muscles (thighs, buttocks). The system that my PT group used does NOT require a probe in the vagina. The sensors allow you to watch a computer screen which graphs the tension in your pelvic muscles. It gives you visual feedback as to when you successfully tighten and release your muscles during kegal exercises. If you are like me, you had no idea how much tension you were holding in those muscles until you saw the computer screen mapping it out before your very eyes. I went to approximately 8 or so biofeedback sessions and feel that they helped me significantly.
Pelvic Physical Therapy: There are other pelvic physical therapy techniques as well. I participated in a few sessions of PT that did not focus on biofeedback, but rather on releasing tight pelvic muscles, achieving neutral spine, etc. I didn't continue with them, but I do think that in my personal case, my Vaginismus may be related to overall tightness and lack of flexibility in my hamstrings, hips, etc. I am very tight allover -- I'm the one you see floundering in Yoga class when they ask for downward facing dog. When I win the lottery, quit my job, and have tons of free time on my hand, I am going to become a Yoga guru and I bet you that my Vaginismus will be much improved. In the meantime, if you'd like more info about general pelvic PT, you may want to visit the pelvicguru.com
The End Result:
I made significant improvement with my vaginismus by 1) first treating my other pelvic pain disorders (Desquamative Inflammatory Vaginitis and Vulvodynia), and then 2) practicing regular PT involving kegals, dilators, and biofeedback for several months. I was never cured. I still experience vaginismus pain. I expect that if I were able to completely eliminate DIV symptoms and return to regular dilator work, that I could make even more improvement in my vaginismus symptoms. However, since DIV is chronic, I feel this is a bit of a hypothetical situation. I am happy that the treatments I underwent helped as much as they did, and I do not consider them a waste of time.
I am one of the hundreds of thousands of women in the United States who has a chronic vulvovaginal condition. There were years when I experienced too much pain to have sex, and my vulvar irritation was a constant companion to my daily activities. But my particular condition has never been completely incapacitating, and it is not life-threatening: I count my blessings every day.
Still, chronic vulvovaginal pain of any degree has its own way of reaching into one's life and eating away at it, exacting not just physical pain, but an emotional pain born in particular by the isolation one feels as a sufferer of vulvovaginal pain.
As a woman with one of these conditions, such as Vulvodynia, Vaginismus, or Desquamative Inflammatory Vaginitis (DIV), it is very likely that even your doctor hasn't heard of your condition. Obviously, this makes makes diagnosis and treatment that much more difficult. You must become your own advocate: doing your own research on treatment options and finding a doctor who can help you, all the while fighting the spoken or unspoken stigma you may encounter along the way: the lab tests are negative; there's nothing to treat; you must be exaggerating about the pain; it's all in your head; you are a hypochondriac.
It can take a long time to be diagnosed. For example, a typical Vulvodynia sufferer often sees 5-7 doctors before they are diagnosed (Glazer, 2002). During this time, you could use some moral support, but it is rather difficult to talk about vulvovaginal issues with anyone. Perhaps feminists will say that women should feel no shame in discussing vulvovaginal disorders with friends and family, but I know I am not alone in having kept my problems a secret from virtually everyone. Even when you do decide to open up and discuss your pain with someone close to you -- your mother, sister, or girlfriend, perhaps -- they may try to empathize, but it is unlikely that they have ever experienced anything similar. And when they hear that you have gone to doctor after doctor who has told you there is nothing wrong, nothing to treat, or that you are a "mystery patient" . . . you will probably imagine them thinking: she must be exaggerating about the pain; it's all in her head; she is a hypochondriac.
You are completely and utterly alone, and yet . . . you are not. If you are in a relationship, there is someone else suffering, too. No matter how patient and supportive your significant other is -- lack of sex has a way of seeping into every corner of your relationship and trying to kill it. Each of you runs through the gamut of emotions from depression and fear to anger and resentment. You probably wish you could take sex and everything remotely approaching it and make it disappear forever from the face of the planet. But the reality is that physical intimacy is vitally important to a relationship, and so you have to face the challenge of achieving that intimacy without sex.
What is the upshot here? The upshot, is that I think there is an opportunity to use the internet to provide a support environment to women with chronic vulvovaginal issues. To share coping strategies, to share diagnostic and treatment strategies, to share our stories, and to spread the word about the lesser known vulvovaginal disorders such as Vulvodynia, Vaginismus, Desquamative Inflammatory Vaginitis, or Lichen Planus. I'm not sure exactly what form it takes. Maybe it is a network of blogs like this one. Maybe forums or listservs or collections of resources like books and web links and journal articles -- but I hope that we can use the technology to break the isolation and begin to expedite some healing.
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.