Today, August 22, 2002, I have been pain free for 1 whole year!!!! For me this is a great achievement. I lived for several years prior to having a lap with a specialist in constant pain with nothing that would take it away.

Thanks to my specialist, Dr. Lie, I have spent the past year with my life back. I was able to focus in classes. I didn’t have to take high doses of pain killers just to make it through the day.

To not be in pain for an entire year, except of course for the pain with my period which was mild, is something that I have never really known since starting my period. It is a totally amazing feeling.

I hope that one day, all of the women who suffer from endometriosis, will know what it’s like to be pain free, forever.

Arianna
August 22, 2002

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.

It’s now August 13th, 2002, almost a full year has passed since my laser laproscopy that I had with ob/gyn #3. The morning after the surgery, I wanted to clean my room but Michael wouldn’t let me know. That’s how good I felt. I had no endo pain – just surgery pain.

I started my 5th semester at college in September and it was so nice to actually sit and be able to focus. Of course, I over did it like usual and ended up taking a full 3 months to recover from the operation. I guess driving just over an hour to and from college every day, walking around with a heavy backpack, running up and down stairs and working in the bookstore was just too much two weeks after my surgery. The first period after my lap came as quite a shock to me. It hurt so much that I was completely shocked by the amount of pain I was now in. Once the period was over, so was the pain. My periods continued on this way, being very painful for a few months. I of course no longer had the pain 24/7 and was actually sleeping, but as soon as my period came, I was hunched over.

During exam time in December, I had a really bad bout with pain. It was so bad that I even broke down crying in front of everyone. I don’t think anyone really knew just how much pain I could be in until that day. I was writing my accounting exam in the LRC, as I did not get along with the professor – he believed that women had no place in the business world. I wrote my exam hunched over my hot water bottle crying. Needless to say I somehow managed to pull my mark up above 60%.

Around the end of January, I started to have some pain on the left side. I kept brushing it aside saying it was just endo pain, nothing I couldn’t cope with. Even though inside I was really scared that it really was the endo coming back. At the insistence of my boyfriend, I finally caved in and went and saw my family doctor. It was not endo – it was a very severe kidney infection. She gave me some tablets called Macrobid and sent me on my way. Since having those tablets, my periods have been pretty much pain free. I get mild cramps for the first day, which I can get rid of by taking Extra Strength Tylenol. Other than that, I have no pain. Now this points out that I probably wasn’t just experiencing endo pain with my periods, but also pain from a kidney infection. This doesn’t really surprise me at all since I did have endo on the ureter and I had kidney problems when I was younger.

I have discovered in the past couple of months just how much stress can effect a person’s body. I have found that my periods are worse when I am under a lot of stress and the pain increases.

The doctor who did my laser lap a year ago, is my saviour. He gave me my life back. I was no longer in a dazed state of painkillers and I was no longer crying all night from the pain. I could hold my head up and actually focus on what I was doing. I could sleep at night in a comfortable position as opposed to getting a couple hours sleep curled up in a ball. I am very thankful that I found this doctor when I did.

I wanted to update my story on the pulmonary endo. I keep logging on to chat, but I miss everyone.

I am currently looking for a specialist for the lung endo. I have a doctor in PA that I have spoken with. He sounds confident that he could treat me. On one condition; I quite smoking. Keep in mind, I have never met this doctor before and we were on the phone. He was very specific about NOT treating a patient who smokes. Okay……..I know a lot of you are saying “I should quit”. You are absolutely right. But, on the other hand, have you ever been told by a physician he could not treat you because of your drinking habits? I found this amusing. I believe that is against the law. But, what do I know. lol

I am still researching this doctor. I have found some problems. He wants $$$ up-front. He doesn’t care if you have insurance. He still wants the money up-front. I read a posting on another website about him and it wasn’t very comforting.

Well, that is about it. I hope everyone is well.

Take care.
Debbie