PERSONAL STORY: KRISTY SOKOLOSKI

My story began on Nov 2, 1996 while staying with friends. My mother and I were watching tv in the bedroom when I realized that it was time to change my seating position. As I moved though, I got a pain that I had never felt before. I tried several different positions to see if it felt any better. Well, it didn't, and my mother told me that she thought that my abdomen looked bloated.

I wasn't expecting my period until the next week so I knew that this pain didn't have anything to do with the premenstrual cramps that I normally got because it felt more like a pulled muscle at the time.

This pain was ten times worse than a normal menstrual cramp. I was also diagnosed with Polycystic Ovarian Syndrome. Starting with the next week I got some very unusual symptoms. One of the most unusual was a feeling of stickiness that felt just like I was trying to pull plastic away from my skin. The pain had gotten so bad that I wasn't going to be able to wait until my next appointment with the Endocrinologist, and he told me I had PCOS.

When I had my annual physical in January of 1997 things went fine until I had the bimanual part of the exam where they feel the organs for any abnormalities.

I was even told that the Irritable Bowel Syndrome was the one that was causing the pains that I had, and so I was told to see the gastroenterologist about it. They wanted to order some tests, but I was in too much pain to undergo them.

This pain continued for many months, and with the help of a friend I found a wonderful Gynecologist who then took me in for a laparoscopy. By the time this happened I was getting desperate. I was scheduled for surgery in August of 1997, and that was when I was officially diagnosed with endometriosis. I had heard a little bit about it, but never gave it much thought until several months later.

My current course of treatment is continuous birth control pill therapy. What that means is that I take only the hormone pills when I use a pack of birth control pills. The purpose of this treatment is to suppress the period so that it will hopefully starve the endometriosis. Being on this course of treatment has done wonders for me. I do have to contend with the breakthrough bleeding and pain that comes with it, but I don't mind it too much now.

My goal is to educate as many people as I can about endometriosis so that they will have a better understanding of how the disease affects those of us who have it. That is also one of the reasons why I have become a member of The Endometriosis Association.

In January of this year I started to get signs that the endometriosis was coming back. The kind of pains that I was having were similar to what I had back in 1997. An additional problem that I was having was that irregular bleeding. I was getting this bleeding as a result of the birth control pill that I was taking. I was taking a pill called Mircette. The estrogen count in it was too low for my body to deal with. Over the next few months the bleeding continued.

In the latter part of April I started getting uterine pain that was affecting me while I was doing my internship for my Medical Secretary course at college. It would hurt a great deal for me to sit and it wouldn't go away. I made an appt to see my gyn. On May 10th she discovered that I had a polyp on my cervix right close to the uterus and recommended that it be removed. The next week I had it removed.

On May 24th I called the office to ask for more samples of the Mircette. I told the nurse that I was feeling like my uterus and intestines were stuck together. I told her that the gyn who did my first surgery discovered the adhesions. She requested that I bring the post-op report with me when I went to get the samples so that the dr could take a look at it.

When I got to the office with the report the nurse asked me if I would consider laparoscopy an option, and I told her yes. In fact, that was what I was hoping for since I could not figure out what was going on. My doctor recommended changing the birth control pill to something higher. She gave me Desogen since I knew that I could take it without a whole lot of problems other than the getting sick to my stomach. She also recommended seeing a physical therapist to see if that would help with the pelvic pain.

By June though, the pain wasn't getting better and so I scheduled an appointment for the 15th to have another discussion about this with the dr. It was decided that it was time to go in and do a laparoscopy. Surgery was set for the following week. On the 21st when I went to get my pre-op done I was told that she wanted to do a hysteroscopy and D&C to rule out other potential causes for the irregular bleeding such as more polyps. During the surgery my dr discovered that I did have a recurrence of the endometriosis. She found it on the right uterosacral ligament, and she also found one adhesion.

It has been 8 weeks since my surgery and I have not had anymore pelvic pain. I've had a few other bumps in the road during this recovery but I think that primarily has to do with the fact that I was on the Mircette. I think that once my body adjusts to the one I'm on now that I will be ok.

Well, it's been a while since the last update. It has now been 10 months since that second surgery, and a lot has happened in this time. I had to get off of the Desogen because of the fact that now the breakthrough bleeding (BTB) was coming more frequently. I stopped taking the Desogen in Aug of last year (1999), and then started on Lo/Ovral.

I was on this pill from Aug to Oct 30, 1999. The reason for stopping this pill was the same reason that I had to stop the Desogen, yep, that's right, the breakthrough bleeding. I then started on Ovral on Oct 31, 1999 and have been on it for what will be 6 months on the 30th. I've only had a couple of times where I have had breakthrough bleeding. The reason for each episode of breakthrough bleeding while on the Ovral was due to infections.

The other thing that I wanted to add to this update is that I was diagnosed with yet another female condition. This female condition is called vulvodynia. My symptoms started way back in March of 1998. When I told my last doctor about the pain that I was feeling when he inserted the speculum for my pelvic exam he told me that I probably had a tender cervix even though I knew better than that.

In June, the night before my second laparoscopy, I had some very intense pain in the vulvar area while trying to prep for the surgery. The problem got worse two weeks after my surgery. I then started what has turned out to be the first of several rounds of various infections such as yeast. The pain continued, and then finally it was in Sept of 1999 was when I found out about vulvodynia.

It has been 7 months since I found out that I had this condition, and it seems like with each month the pain of this condition has gotten to a new level. And it seemed like with each level (at least for a while) the pain would keep me in bed for the longest time. One of the things that I did to relieve the pain (but didn't like doing it) was what they call sitz baths. I found them to be to time consuming even though the pain stayed away for several weeks.

Just recently I was able to have 2 days free of pain but now it is starting to come back. So how am I handling all of this? Doing the best that I can to take things just one day at a time. I will write again real soon to add more about how I'm doing as I continue to try to get well and cope with my various health problems.

Kristy Sokoloski
sokokl@yahoo.com