I was first diagnosed with Stage I Endometriosis in June of 1993. I had to tell a girlfriend at our high school graduation that I would be unable to go to her open house because I would be having surgery that day. I had a laparoscopy performed by my OB/GYN (a friend of my mother's, she went to our church) who I had been seeing since I was 15. I have always had irregular cycles and horrible cramps on CD 1. This has been the case since my very first period when I was 10 years old in the 5th grade. I started taking birth control pills when I was 16 to regulate my periods and hopefully relieve some of the cramping.
I awoke from the anesthesia to hear a woman in the next bed say to the nurse; "Hopefully the next time I'm in the hospital it will be to have a baby." It was after this that I heard my diagnosis and even later that I found out what endometriosis was. I still remembered what that woman said. I don't know for sure that she had endo, I just assumed.
On the fourth of July that next month my family and I went to a park downtown to see the fireworks. There were two women sitting behind me talking about one of their sisters. She has endo and has just about given up on fertility treatments, they're looking into adoption, poor thing. -ok, so I'm paraphrasing, but that's what I remember from the conversation- I decided that I was not going to be able to have children of my own. I told my boyfriend T that I may not be able to provide him with biological children and that if that was important to him then he could feel free to walk away right then, no hard feelings. He stayed. -I love him so much-
I remember walking through the mall with some college friends, I was only 19. We went through the baby clothes section in search of housewares and looking at those cute little dresses and overalls made me tear up. I want a baby. Why can't I have a baby? I was only 19! I wasn't even engaged! I mourned for the children that I wanted to have down the road. I was the essence of self pity. At the age of 18, I declared myself infertile.
In 1994 I tried Lupron for 6 months. We had to convince the insurance agency that it was a viable treatment. Lupron was only used for prostate cancer at that time and they didn't know why a young female should get it. The irony of Lupron is that each month before you receive the Lupron shot they have to give you a pregnancy test. Each month, just because they asked the question, I wondered if the test might come out positive. This would have destroyed my life. As much as I wanted kids later in life, I knew that in college was not the right time. I breathed a sigh of relief each time the test came out negative and I received my Lupron shot. I didn't have all the side effects that other people have with Lupron. I had mood swings according to T but I really don't remember much of that time. I was in a deep depression whether from the shots or just coincidence of timing. I was a zombie just going through the motions of working, going to class and crying myself to sleep at night.
I had such a hard time recovering from my first lap that I swore I would never have another one. The gas in my abdomen hurt for a week, I was sore and exhausted and depressed and scared. In 1996 I went back to the doctor and asked for another lap. I was having daily pain and bowel trouble. I was convinced that the endo has grown onto my colon and I would need a bowel resection during surgery. This was not the case. I was still at Stage I and there was no endo on my colon at all. She did find some on my urethra, bladder and Fallopian tube (not sure which side) which she left alone for fear of harming the tissue that it was on. This caused years of anxiety in me thinking about those cells left in there growing and spreading and wreaking havoc on my insides.
I took birth control pills from 1991 through 2000. I had regular cycles as long as I took the pills and had a monthly period. I had cramps on CD 1, bled for 3-5 days and started the next pack of pills. I did this not only to prevent an unplanned pregnancy but as a treatment for my endo. In the year 2000 when T and I were engaged I went off of the pill to give my body a break. I heard a woman in my local Endometriosis Association Support Group say that she felt better than ever since going off of the pill and she was younger than me! So, I thought I'd give it a shot. I stopped taking the pills, and my period stopped too. I went without it for 9 months. I finally went back on the pill to ensure that I wouldn't have my period on our wedding day. The first period I had when it started back up again was pure agony. It felt like all the blood and all the pain that I had been missing those months were just saved up and all came out at once. I had all the symptoms of a bladder infection. I was tested 3 different times for a bladder infection, I drank cranberry juice (I HATE cranberries) and took antibiotics. The thing was, I didn't have a bladder infection, it was the endo. I tried taking the pill continuously, not taking the week off to have a period. I thought I would take three months in a row, then stop for a period and do another three months. This didn't work. I was a month and a half into the first quarter when I started spotting, not just normal spotting either, we're talking black sludge that looked like it came from the swamp thing! Gross! My first thought was that I was having a miscarriage and hadn't even known that I was pregnant. This scared the begeezus out of me and T. This went on for 7 straight weeks. I had started calling the doctor at 3 weeks to ask when I should start to worry about this. She said to double up on the pills, I did, it didn't work. She said to stop taking them and just let the period come. I did, it did, and then I went back to taking them monthly. I guess my body just refuses to be suppressed.
Finally, in September of 2002 I stopped taking the pill again. I had been spotting and break through bleeding for 2 weeks out of each cycle and couldn't stand it anymore. I read the book Taking Charge of Your Fertility and thought that I would try charting my cycles so that I could learn what "normal" was for me. T was not ready to try to conceive (TTC) at that point so we decided we could just use condoms for protection. He wasn't as scared to have sex this time, probably because we were married, had a house and we both had good jobs. We never really got into using the condoms. We've been relying on the withdrawal method since then. I read somewhere that the withdrawal method is 79% effective in preventing unwanted pregnancies, for the "normal" population. Just for the record, I'm not normal. My periods started coming late again. When my cycle was somewhere near 73 days I convinced my Dr. to give me Provera (a Progesterone pill) to bring on my period. I was supposed to take them from day 16 through day 25 of each cycle. After two months of that I was having 22 day cycles. I decided that I needed to back up the pills and take them starting on day 20 through 29. This has given me an average cycle length of 33 days. I discovered this month that I usually O around CD 19 so by starting the pills on CD 16 I was actually starting the Pregesterone before I even O'd!
The withdrawal method has been very effective for us so far. My OB/GYN is surprised by this. She seems to think that I will "try" for the standard 12 months before declaring me infertile or doing the tests to check out what the trouble might be in becoming pregnant. I will not wait a year. I will give it 6 good cycles once T agrees to TTC whole-heartedly. That is 6 months temping, BDing at least 3 times around O and coming up with 6 BFP's before I waltz into her office and demand intervention. I'll probably start with Clomid and Progesterone suppositories. After that she MAY convince me to do a couple IUI's, but this is pushing it. I'm really not inclined to spend thousands of dollars (not covered by insurance) on injectibles only to end up adopting anyway. I'll give it two years. If I am not pregnant by May of 2006 I want to start the adoption process.
But, I'm getting a little ahead of myself...
In March of 2004 I had my third lap. I am still at Stage I (Whoo Hoo!) which is a huge welcome surprise considering I've been off bcps for over a year and the endo has been left unchecked/unguarded/running rampant since then. My tubes are clear! The endo cells she left behind last time have disappeared.
She said we were all clear to TTC whenever we wanted to. T doesn't want to yet. :-( This has not stopped me from temping, and hoping that each time I O we will just happen to BD around that time. Things didn't work out last month (cycle 1) so now we are around O time of cycle 2 and we'll see how it goes from here.
Stay tuned for the next installment of ...I Hate My Body, You Would Too If It Were Yours.