Friday, March 18, 2011

Part II: Vulvodynia Treatment Options

Disclaimer/Warning: This post contains a frank discussion about specific female organs and sexual issues that some people may find too graphic, offensive, embarrassing, or personal. If you know me personally, you may feel awkward reading about these issues. Rest assured that if you are not embarrassed, I am not embarrassed. If you have any questions, feel free to ask.

For the sake of simplicity, I will often refer to my pain problems as vulvodynia rather than listing the exact problem.

As I mentioned in my last post, I was diagnosed a little over a year ago with vulvodynia. I told my gynecologist that I wanted to be able to enjoy sex with my husband and have children sooner than later (I'm in my 30's). My gynecologist suggested three options for my problem:
  1. Lidocaine to numb the pain with the hope that I would be able to tolerate sex.
  2. Physical therapy.
  3. Surgery to remove the inflamed areas.
I immediately ruled out surgery because (a) the idea of any kind of surgery to cut out parts of my vagina sounded horrible and (b) my body has a habit of not healing very well anyway. I thought physical therapy seemed weird, so I nixed that idea, too.

I decided to go with the simplest plan -- lidocaine.

I tried the lidocaine a few times, but it didn't work for me. It seemed to irritate my already sensitive skin, and the vaginismus (involuntary muscle spasm) was just too strong.

Around the time I got diagnosed with vulvodynia, I was MISdiagnosed with epilepsy. Being able to enjoy sex with my husband suddenly became a low priority again compared to dealing with my new, more serious diagnosis. As you may already know, the epilepsy fiasco lasted for nearly a year before learning that I don't actually have epilepsy. If you are new to my blog, you can read my entries from 2010 to learn more about the misdiagnosis.

Once the epilepsy issue was behind me, I started to focus on other issues that had taken a backseat. A few months ago, I saw my gynecologist for my annual exam and told her that the lidocaine was not helpful. She suggested physical therapy as my next option and surgery as a last resort. I decided to go with physical therapy.

Even though going to physical therapy to fix my vagina sounded ridiculous, I had reached the point that I was willing to try it. My husband and I want children, and I'd like to try the old fashioned way before using any other (often expensive) methods to get pregnant. Of course, our having children also depends on my getting healthy enough to care for any, but I'm trying to be an optimist.

My next post will discuss what physical therapy for vulvodynia involves and how I am doing now.


Anonymous said...

One question: are you afraid of possible cfs heredity? Do you have information to this topic? Thanks for your answer.

alyson said...

Hi Anonymous,

My apologies that your comment took a while to post. It got caught in the blogspot spam filter for some reason.

You ask great, yet loaded questions! Sometimes I do wonder whether or not there is some sort of genetic component to CFS, or if it something that I can pass on to my child like a virus. I often think it might be a a little bit of both -- that certain people have a genetic predisposition to developing it, but they must be exposed a particular environmental contagion (like mono or other viruses) that might trigger it. I just don't know.

Unfortunately, doctors and researchers don't really know the answer either -- though many conjecture. If you google questions like: "Is CFS contagious?" or "Is CFS genetic," you'll get all sorts of answers. However, until there is a definitive answer as to what causes CFS, we won't really know for sure how people get it.

To answer your question a little differently: Yes, sometimes I worry that if I have a child, he or she might suffer in the same way I have. That is the last thing in the world that I would want.

Anonymous said...

Thank you a lot for your answer. Many greetings from Europe :-). Sometimes we in Europe think that people/doctors in the USA have more information to this disease (to all diseases) and that they can offer more to their patients. From you blog I understand that the treatment of cfs in the USA is very similar to the treatment in my country and that even the doctors in the USA are not able to help. In my country there is still the problem that cfs was not accepted as real illness. My doctors recommend me the pregnancy, because they do not believe that I am really ill (according to them everybody is sometimes tired, everybody has sometimes sore throat, many women do not like sun and hot and cold,many have problems with concentrations ...). The doctors deal with symptoms not with the illness itself. I have contacts to some girls with cfs and they have healthy children, but you never know and they will wait all life and fear that their children will suffer as they suffer and it will be in fact their fault and their decision :-(. I personally hope that the genes of healthy husband will be strong!

I also found some articles to this topic in the internet, but unfortunately no answer. As the best of articles I red so far I consider this source:

alyson said...

Hi Anonymous,

Thank you for sharing your story and for the great article link. I'm sorry you haven't been able to find a doctor who takes your CFS seriously. Your story reminds me of my own (and others that I have read). When I was first sick, I went from doctor to doctor because they all kept telling me I was fine. Of course, I was not fine, but I had no idea what was wrong (I had not yet heard of CFS). When I finally suspected that I might have CFS, I brought it up to one of my doctors. He said there was no such thing as CFS and that I was physically fine (he told me he thought that my problem was psychological).

When I finally found my current doctor, she immediately suspected CFS but ordered a bunch of tests to rule out other diseases like thyroid, lyme, anemia, other autoimmune, etc. It was wonderful to have a doctor who took me seriously. Maybe you will find a good doctor one day.

I don't know where you are in Europe, but the Co-Cure Good Doctor List has doctors in Belgium, Netherlands, Spain, and the UK: