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.
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 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.