I am so happy you found this site. Life's journey has been traveled with bumpy roads for me this past year. I ended the year 2006 with a diagnosis of Endometrial Stromal Sarcoma and welcomed in a New Year with my life living with Endometrial Stromal Sarcoma. I don't have to push the rewind button too far on what some have said is a diagnosis that happens to most women after menopause. As you will read and learn from my story and some other members, that there is no set age and no blueprint on ESS.
I was 34 years old. I was struggling with trying to take some weight off and my husband and I really wanted to have baby #2. Our daughter was turning eight and I wanted another one before she was 10 or felt it was not going to happen. I really wanted the age gap. In my own experience I wanted each child to have their time with mum and dad. I had made the decision to end my injections of depo provera to encourage weight-loss and to detox my body to ready myself for a pregnancy. Crazy, but I would have to lose some pounds to be better prepared for a pregnancy.
Eight months into being depo free I had gotten my period. (I had been menstruation free for a total of seven and half years, a common side effect to Depo that I really liked.) It was pretty easy. It came quickly and left quickly. I was quite surprised that there was no cramping and it was only four days, rather than the typical 7 to 8 days.
Things had changed by the next two months. The start of my menstruation had come within a finger snap with a good flow, which was not normal for me. By the next month's cycle my period was getting increasingly heavy.
I had had a pinch and an endless cramp on the left side of my pelvis. It was a dull, aching pain. I have a high tolerance for pain, but this was getting on my nerves. I was popping Advil like crazy and the pain was not letting up.
I had called the doctor and they had scheduled me for an ultrasound. I had a history of fibroids that were discovered after my daughter was born. The fibroid never bothered me and I never knew it was there until they told me about it. Well, they told me the fibroid had increased a little in size and it was laying on an artery. They said not too worry that this was good because if it's laying on the artery that it is feeding into it, the fibroid will die. I dealt with the pain a little longer and it did go away.
The last cycle I had was one that was out of a horror movie. I literally had to sit on the toilet. If I got up, blood clots by the handful were hitting the floor. My poor husband had to help me. It was the most horrifying and humiliating experience. The smell of the blood was really bad and the nurse said it is probably just old.
I went into the doctor again and they said that the fibroid grew the size of a small football. I was put on Lupron and had to make a decision: The decision to have another child or have a hysterectomy. Thankfully the fibroid did react to the Lupron and I went into surgery to have it removed and get ready for a new addition to our family.
We were all very excited it was finally happening after many years of talking about names and things we would do differently and how our daughter would be a great big sister.
I went in and had the fibroid removed. The doctor told me it was some other kind of condition and that we would have to get pregnant right away before the "fibroid" grew again. Well, the next morning came and the doctor sat on my bed. It's just like in the movies when the first sentence comes out and you're still stuck on those words and he has finished the conversation with you, and you should call your husband. Huh? I have cancer and what is it called again? Does this mean I can't have another child? Huh?? What is it called again?
I had a complete hysterectomy two weeks later. I worked without recovery after the first operation and the second was even harder to recover from, but got back to work two weeks later.
The doctors deal with the physical stuff, but not the emotional stuff. I'm working on my own and in my own way with it. There isn't a day that goes by that Cancer is on my mind. But there isn't a day that goes by that I know I have people who are there to encourage me and to help me get through my difficulties. I tell people imagine you get tipped upside down and everything in your pocket that you care about all comes falling out and somehow you try to put it all back in, but it won't work because you're still upside down. I'm still upside down and I know it's okay because it's never gonna be the same again. My medication side effects and the doctor's appointments are new additions my daily chores. But I have also met so many new people and friends who are on this same journey, and this something I wouldn't change.
One thing I've had to work on and presently still am is that one day at a time approach. Work on tomorrow, tomorrow and live in today.
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