Finally, I have someone I can share my story with. You will never know how excited I was to read about others who have had this problem and are living and dealing with it every day.
In January 2002, I awoke one morning feeling miserable. I had just spent the entire night jumping up and down going to the bathrooom. I literally went to the bathroom 14 times that night(I really counted). The pain was incredible. The burning, stabbing pain just would not go away. All week long it plagued me.
I didn’t bother to go the doctor as I knew I had a GYN appointment the following week. When I got to my doctor, I explained to her the symptoms I was having. The frequent urinating, burning, stabbing. We did the usual tests , UTI, STD’s etc. Everything came back normal. She suggested I have a laproscopy to look for endometriosis.
I had the test done and sure enough came back as stage 2 endometriosis. She said there were a number of ways to treat it. Birth Control pills, a shot called Lupron that would throw me into menopause or a full blown total hysterectomy. Well needless to say, I was not crazy about either one of them. I opted to try the Lupron as I didn’t really care about going into menopause as I couldn’t stand having periods anyway. ( Anything that would make those go away short of pregnancy was welcome by me).
I did the lupron for about a year. Even though I was in a menopausal stage the pain just would not go away. Well, Two years later, I finally relented and decided to do the hysterectomy. I was only 39 at the time. Was never going to have anymore kids as my body couldn’t stand that excrutiating pain (childbirth) either. My doctor assured me once I had the hysterctomy, I would be pain free and could begin to lead a normal and sensible life again. You see, I was living my life centered around how I was going to feel when I got up that morning.
I had the total hysterectomy in July of last year. Let me tell you, I have been in worse pain ever since. I went back to my doctor again and again. I cried daily. I called them up anytime of the day in such terrible pain begging for pain medication. They were baffled. They could not understand why was I not only still having pain, now I was having worse pain. I went to so many different doctors I lost count. Specialist here, specialist there. Bill collectors are calling me daily to collect on the monies I owe from so many doctors/hospital visits.
I happend to mention my situation to a co-worker, and she suggested I see her doctor at a pain clinic. I thought what have I got to lose. The depression was over-whelming. When I got off from work, all I could think of was how quickly I could get home and go to bed. My 11 year old son never saw me even though we live in the same house. I just wanted to shut the world off and never come out again. I could not stand to wake up.
I went to see this doctor. He ran some tests and diagnosed with me IC. What a relief it was to finally hear someone put a name to what I was feeling. He actually told me, I was not a hypocondriac and it was not all in my head. The pain was real and so was my feelings. I was really angry at the fact that I had been to so many different GYN’s and no one even mentioned IC. What have they never heard of it before?? Maybe I had IC before endometriosis. I don’t know. Maybe they are linked. What I do know is that with all the education our doctors ‘ seem’ to have, someone should have least mentioned it to me long before I got to a pain clinic. Well, I am on this drug called Elmiron. It hasn’t started helping with the pain yet, but I am hoping with continued use, maybe someday I will wake up feeling like a different person.
Still have a long way to go, but I will get there. Hope my story inspires someone else not to give up. If you tell your doctor you feel pain, then they had better believe the pain is real. Many times, I felt like giving up. They wanted to put me on Zoloft. With all that I have heard about that drug, I probably would have committed suicide if I had taken it. Maybe soon I will write to tell about how good I am feeling. (When the time comes).
Sharon
