Among several other projects I have planned for this site* I would like to build up a list of reputable speciality clinics that focus on pelvic pain, vulvovaginal disorders, and pelvic physical therapy.
I've had some people email and say "I live in XX, do you know any good doctors in the area?" and thus far I have not been able to provide any information beyond the two places that I have been myself.
I would love your help in compiling a good list -- you can either leave a comment below or email me (use the form on the home page) to let me know what clinics you would recommend!
*I haven't forgotten about the private Facebook group, as well as the reworking of the resources page. I'm also working on some book reviews and an option to subscribe to blog posts by email. Progress is just a bit slow due to the other commitments in my life.
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.
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.
I think I need a new title for my website.
I definitely want it to be a resource for women who have been diagnosed with DIV. But, I also know know there are women out there who haven't been diagnosed. yet and I am thinking that if they don't know to search for DIV, then this website and its resources won't come up for them.
There are also other women out there not with DIV but with similar chronic vulvovaginal conditions, and I'd like to open the site to them as well. As a recent website visitor told me "any sort of vaginal problem is horrific." I'd like to turn this site into a supportive resource for all women with chronic vulvovaginal disorders.
All that said, I am at a loss for a good title. I think I need something general enough that google will find it but specific enough to be useful for users filtering through pages of search results. Maybe in a title: subtitle format. If you have an idea, please post it in the comments below!
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.