Living with Endometriosis and Vulvodynia

October 25, 2011

In November of 1996 (at the age of 25) I was diagnosed PCOS, and about 2 weeks later I started having very intense pelvic pain that I thought was due to a pulled muscle. The pain continued for several months, and after an examination and discussion with my family doctor, we believed it was ovarian cysts.

Life with Endometriosis

In November of 1996 (at the age of 25) I was diagnosed PCOS, and about 2 weeks later I started having very intense pelvic pain that I thought was due to a pulled muscle. The pain continued for several months, and after an examination and discussion with my family doctor, we believed it was ovarian cysts. The pain continued to worsen and reached a point that I could neither sit nor stand without intense pain. One way to describe this pain is that it was ten times worse than a normal menstrual cramp. I stayed in bed for several months while trying to get some answers as to what was causing this pain. The pain would make me feel like plastic was being pulled away from my skin whenever I would get up from a chair after sitting too long. The endocrinologist who treated my ovarian cysts suggested that I see a gynecologist, but I didn't do it for several months after he made that recommendation because I was of the opinion that I was too young to go see a gynecologist. In the Spring of 1997, I went to a gastrointestinal doctor who wanted to run tests to make sure that it wasn't GI related, but I canceled the tests because the my pain levels were too low to be symptomatic of what they were talking about.

By June of 1997, I was on my way to my second gynecologist. Along with a reproductive endocrinologist (RE), she took me in for my first laparoscopy, and I was diagnosed with endometriosis on August 8, 1997. Five weeks after that surgery, the RE put me on continuous birth control pills. From that time on, I had a hard time trying to find the right pill to keep the break-through bleeding down.

I went almost 2 years without any pain from the endometriosis. When the pain returned and started to affect my school attendance - I was in college, studying to become a medical secretary - it took some time to make the teacher understand what was going on. In June of 1999 I had my second laparoscopy under the care of a different Ob/Gyn doctor who is very caring and understanding. It has been almost 9 months since that second laparoscopy, and I'm pain-free from the endometriosis and hoping that I can go a long time without the pain returning.


Life with Vulvodynia

When I went in for my physical with the previous gynecologist and told him that I had pain at the opening of my vagina, he just told me that I probably had a tender cervix. However, I knew that something else was wrong. Then when I scheduled my second laparoscopy to check for the endometriosis in June of 1999, I started to notice something quite different. I had very intense pain around my vulvar area the night before that second laparoscopy. I became confused as to what was going on because it really hurt when I tried to insert the tip of the douche bottle that I was required to use in preparation for the surgery. I did manage to get the tip inside of me, but it took a great deal of effort.

Two weeks after that laparoscopy I told my Ob/Gyn doctor about this pain, and I suggested it might be from the catheter that I had during surgery. Well, from that point on, I started going through several rounds of infections. Since July of 1999, this cycle has included: yeast infection, urinary tract infection (UTI), bacterial vaginosis, then vestibulitis. In September, I was diagnosed with vulvodynia.

The thing that frustrates me the most about these infections is that I have some very intense pain, and in recent months I would always feel it in my groin area. I did get some relief from the infections for about a month, but then it started all over again in November. This has continued into this year and has included two kinds of bacteria that didn't go away until I completed the second course of antibiotics back in February of this year.

I was really hoping that the year 2000 would be one I didn't have to spend time in the doctor's office, but started going back to my Ob/Gyn due to the vulvodynia in January. I've been in constant pain from the vulvodynia for almost 3 months straight, starting in December of 1999.

Now, in March of 2000 I have no infections, but lots of vulvar pain, and the reason for that is because my pain has gone to a new level and I don't have an infection at this time.

My hope is that there will be a cure for both of these very painful, disabling, and frustrating conditions. In the meantime, the only thing that we can hope for is a way to treat the conditions by suppressing and relieving the pain.

I have had both endometriosis and vulvodynia for two years, but in the case of the vulvodynia it took exactly two years to be diagnosed. My goal from now until there is a much needed cure for both conditions is to educate as many people as I can, to make this issue public, and to offer as much support as possible to all women who suffer from one or both of these conditions, as I do.

I try my best to cope with each of these conditions, but sometimes the things that come up while I'm trying to cope don't always make it easy. So, I try to take it one day at a time. Taking it one day at a time will always be a challenge for me, but in the end I know that I will succeed. For those of you who read this story, I want you to know that you are never alone.

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Editor's Note: Kristy is an active member of the OBGYN.net Endometriosis Forum as well as the Women's Health Forum and has extended an offer of support for those wishing to contact her through the forums.