All my life I’ve had horrible pain whenever “my time of the month” came and we never knew why. In August of 1999, the pain was so bad my boyfriend physically rushed me to the emergency room.
The nurse on duty mentioned that since there were no visible problems, I might have a disease called endometriosis. For those of you who don’t already know, endometriosis occurs when the lining of the womb develops outside of it and attaches to ligaments and other organs. It can cause pain, bleeding, inflammation and infertility.
For the next year after my first oif what was many visits to the E.R., I devoted most of my time too finding out as much as possible on “endo”. After readings story after story, I was inspired to keep an endo diary, and even though it doesn’t relieve any of the physical pain, it tends to unload some of the emotional pain.
Here is an excerpt: 06.29.01 – “Everyday it’s the same damn thing,: I wake up in pain. I lay here in pain. I cry because if the pain. I am scared everyday. How do I know that the pain I have today, isn’t going to be the straw that breaks the camels back. The one that seals my faith. The one that pervents me of having childern… ”
Here is my personal story.
I had been going to a trusted family gynecologist for years, who assured me my pain was normal, and that there was no way I had endometriosis. He said I had a small cyst (the same one I’ve had since I’m 15 years old) and that was the cause of the additional pain; and that I wasn’t displaying any symptoms of endo. But I knew in my heart that this pain was here prior to the cyst, so either I did indeed have this disease, or there was another valid reason for the amount of pain I’ve been going through since my first period at 9 years old. Throughout grammar school and high school, I would constantly miss 5-6 days a month do to pain. But my parents always thought it was normal and that I had a low threshold for pain. I missed three years of college because I was physically unable to attend. I was unable to do anything. I rarely left my apartment except for doctor appointments and to occasionally see my family. I’ve lost numerous friends because of this disease and it’s definitely put a strain on my relationship with my boyfriend. He’s been taking care of me, everyday now for over 3 years. He puts up with everything this disease puts me through, from the mood swings to the crying attacks. I’ve called him on numerous occasions in the middle of the night because I am in such horrible pain I need someone to talk to. He has been incredible.
Even though this is a physical painful disease without a cure, the hardest part to deal with was the emotional aspects. I sometimes feel helpless and a burden on my boyfriend. It was very easy to fall into a depressive state, where nothing brought me joy. The smallest gesture on his part to bring a smile to my face, had an adverse effect and made me cry. I became an incredibly good actress around my family, because I didn’t want them to worry. I increasing felt guilty for not visiting as often as I should have or consistently canceling on them, especially on my little brother.
I was a very active person. I loved just being outside. I loved going for long walks and swimming. I especially loved going out with my friends dancing, but I can’t do any of the things I love anymore.
It wasn’t until June 19th of 2001, that I was able to take my first real step to relieving my pain. I had my first laparoscopy done with one of the best gynecologists in Brooklyn, NY. From my first visit with him, a month earlier he suggested that endometriosis was the cause of my pain. I experienced 5 out of the 7 most common symptoms for this disease. The laparoscopy was my first operation so I was understandably nervous, but I had my boyfriend, mom, grandmother and little brother there with me. When my doctor spoke with us after the procedure, he confirmed what I already knew… I have endometriosis and that he was going to put me on Depo Provera. I was 21 years old at the time and I was/am most concerned with how this disease is going to effect my ability to have children. He was going to put me on Lupron Depot but said there is a high chance I won’t be able to have children in the future, plus there are numerous side effects of this drug that I was not willing to face. I read too many horrible stories about this drug, that I didn’t want to chance it. Therefore, I went with the Depo.
It’s been a year since I started my Depo treatments and it had helped a lot in the beginning. Even though it had a few side effects (consistant bleeding for about 6 months; significant weight gain; slight loss of hair; and more breakouts on my face), I was able to do more without being in pain. One week in Feb. 2002, was the first time that I went food shopping and didn’t have to stop at every aisle because it hurt too much to walk, and I didn’t have to lean in the shopping cart for fear I might fall. It was a very freeing moment. However, over the last 3-4 months the pain has gotten unbearable again. It hurts to walk, stand for too long and I can barely stand. I am consistently taking Aleve to try to relieve the pain, but it’s not working. I am 22 years old now, and I’ve only been able to complete one semester of college. I actually enjoy going to college, so the fact that’s it’s one more thing I can’t do, hurts alot. I am in the process of seeking additional medical opinions on the possibility of have a laparotomy done.
Everyday is a surprise…”Will I be able to walk 5 ft. without crying or will I have to spend another day trying to stay perfectly still for fear that my next movement will be the one that sends me to the hospital?” I was asked by someone recently, what good does it do to tell everyone about my illness and my answer was quite simple. “It helps others who feel they are going through this torture alone to know there is at least one other person going through the same thing. When everyone around you is telling you to walk it off and that you just need to fix it… it helps to hear it’s ok to be in pain and not to feel weak or less of a person. And maybe if more people make a stir about this disease, a cure will be found.” One close family friend, said it was more information about me than they needed to know, and she is wrong. It’s the information you need to know, because it lets you into the separate world endo puts us in.
We aren’t broken… we aren’t weak… we aren’t lazy… we have a disease.
Thank You for reading my personal story.