My History With Endometriosis

I got my period the last day of 8th grade. I was 14 years old. I came off the school bus noticing that I had abdominal cramping and by the time I got to my home, I needed to change my outfit. I went into the house and told my brother to take out the dogs. I needed a change of clothes and to go into my closet that had my box for when I "grew up and became a woman". In it contained the pads that I needed. I went down to the bathroom and sure enough it was my period. I can tell you what pants I was wearing too that day...white ones that I had picked out recently at JCPenney. After doing all of this, I called my mom at work to let her know.

I remember her telling her office staff that I got my period. She worked at a small credit union office with two other older women at the time (one was my Great Aunt) and two older Italian men who came in part time. I was embarrassed because I didn't know who was there at the office. I didn't bother calling my dad up at his work...although I couldn't imagine him doing the same thing my mom did I was embarrassed enough already. I had cramping pain with my periods.

In talking with one of my best friends, I learned that she was out during "that time of the month" because of the pain. I wished that I could have stayed home many months during my period. I hurt too much...I had difficulty focusing in class, difficulty in going from class to class, difficulty in carrying my books, and more. My best pain medication that I could take extra strength tylenol until I got prescribed prescription motrin for a knee problem I was having. Unfortunately the motrin had other problems associated with it: it ate away at my stomach lining even when I ate it with a meal and it caused me to have heavier periods. Not the thing that I wanted...to be going through an overnight pad in less than an hour!!! I ended up taking myself off of the motrin because of the side effects.

I was told by the pediatrician that my periods were "normal". So I grew up believing what my doctors had told me...I mean, why would I even think about second guessing my doctors. Afterall, they have had medical training and all....right????

In college, my 2nd roommate in my Junior year was on birth control pills. Her periods were at most 3 days on the pill. I was absolutely envious of her. I had my for 7 days and they were heavy. I attended classes because I had to due to attendance but I wished that I was in my dorm room curled up into a ball due to the pain. I'm surprised now looking back that I was functioning in high school and in college. Somehow I managed to earn my college degree in 4 years and I had a boyfriend from a college 15 minutes away from mine and that relationship was serious.

Less than a month after I graduated, my boyfriend proposed to me. It was Father's Day of 1993. He called my father up for my hand in marriage but my dad was at his weekend Air National Guard duty. He called up my mother and she gave him my dad's number and he finally got permission for my hand in marriage. I told my dad that I was going out to eat at a restaurant that night with my fiancee to celebrate and after a bit my dad said fine. That fiancee is my dear husband (DH) Jeff. We got married 4 months after he graduated from college in September of 1994.

At that time, we had no idea that I have something called endometriosis or the infertility it would cause. Towards the end of 1995, I started having pain with sex. I could have it but I ached for a day afterwards. By 1996, I think I had just about stopped having it altogether. It hurt so much. I complained to everyone involved with my care...the receptionists at my then obgyn's office, the nurses, and the obgyn, Dr. Who-Didn't-Care...I wanted this pain known and documented. In 1998, my husband and I moved from NJ to where we are in Upstate NY.

I found an obgyn that I thought I could trust in Upstate NY, Dr. I'm-the-Doctor-and-You're-the-Patient. I mentioned to her about the pain with periods and painful sex. Finally in late 1998, she told me that she thought that I probably had endometriosis but gave me no information about this thing. I drove 45 minutes home trying to think of the spelling of that word. I thought that all I had to do was take a regimen of pills (like maybe antibiotic or something) or have a small surgical procedure and I would be cured. Once I got home and after I took out the dog and got the mail, I went online and tried the spelling that I thought endometriosis was.

While I was wrong with the spelling that I chose, I did managed to find the http://www.endocenter.org/ and read their site. I brokedown and cried. If I did have this disease, I thought that I would be one who would experience the infertility so I started researching adoption back then on and off. Jeff didn't believe me at the time that I had something such as endometriosis. He didn't want to believe that his bride would have something like this...an incurable disease.

After having an appointment scheduled with her to have a lupron shot administered, I read up on lupron and decided "no way is this for me". I called the office back up to tell them to change the appointment to a consultation with my obgyn instead.

In the meantime, my mother-in-law mailed me a copy of a newspaper article about a woman with endometriosis who was on lupron and what it did to her that the doctors didn't tell her about. I also went online and printed off sutff from the manufacturer of lupron's own website of side effects that my obgyn didn't even tell me. And the information that I found that the only way to diagnose endometriosis was through surgery not medications.

Jeff took time off of work to go to the consultation with me. Dr. I'm-the-Doctor-and-You're-the-Patient wasn't pleased that I cancelled the lupron shot appointment. She wasn't happy that I was standing up for the first time in my life and telling her what I wanted and needed. She told me that she goes to the conferences on endometriosis and that she KNOWS what is going on with that disease, etc. I showed her the newspaper article and the printout from the Lupron's manufacturer about the side effects to it. She didn't want to read it and didn't care. She goes to the conferences on endo, I can't believe anything posted to the internet, yada yada yada.

She doesn't understand why I'm refusing Lupron since it cures endometriosis. Then she tells me that pregnancy will cure me of endometriosis, I have documentation stating the opposite. Of course I also tell her that I am completely unable to have sex at this point and with everything else going on, how can I try to have it??? She then tells me that I need to have a ultrasound (u/s) done along with a few other things to check for STDs since she thinks I have some.

I play her game...I get the ultrasound done. I had to go into the office to have it reviewed by the doctor. So I schedule an appointment for this and have it with a PA (Physician's Assistant). The PA tells me that the u/s shows lots of free fluid in the abdomen. All of the tests come back negative for STDs. My PAP smear though is abnormal since they didn't have enough cells to read it properly.

She reads my chart and notices that the obgyn is having problems with me. The PA then asks me if I am happy with my current obgyn. I'm taken aback and said no. She writes down a name and a number and tells me to call it and get an appointment with her.

I left the office in shock but willing to try another obgyn. I get home and call that office up to get an appointment for a repeat PAP with that particular obgyn. I get an appointment for nearly mid November 1999.

When I go to that appointment and finally get called back to the examination room, I am welcomed warmly by the nurse. She brings me back to the room, takes my pulse, my bp, and such and asks me why I'm there. I tell her and tell her about my pain with pelvic exams. She leaves and Dr. Most Beautiful comes in.

Dr. Most Beautiful tells me her name and shakes my hand. We chat for a moment and then she asks me a question that I have never been asked yet...do you have anybody in the waiting room for you? I am shocked. No doctor to date has asked me this. I tell her no and she says wait here a minute.

She comes back in with her nurse that I just met and her nurse repeats her name to me and holds my hand while I lay on the exam table. During the pelvic, I'm screaming out in pain trying to leap up onto the ceiling...anywhere to avoid the pain. Dr. Most Beautiful apologizes profusely while doing the exam. The nurse continues to hold my hand as I grip down on it completely.

When Dr. Most Beautiful finishes up, she apologizes more. I let go of her nurse's hand and she leaves the room. Dr. Most Beautiful gives me the box of tissues and she waits for me to calm down and says that she agrees with Dr. I'm-the-Doctor-and-You're-the-Patient that I have endometriosis. She ventures a bet that it's all on my left side as she felt some nodularity on that side.

She mentions that she would like to do surgery. I agree. The next month I have my pre-operative appointment with her. This time DH comes with me. She tells him everything that she already told me in my first appointment with her.

On January 28th, 2000 I had my first major surgery for endometriosis. It was done laparoscopically. When I came out of surgery in the recovery room I was okay until they started wheeling me to my room. I got so nauseous. They had to administer more oxygen. They tried again and slowly wheeled to the room. DH told me about that I have stage 3 endo...all on my left side just like Dr. Most Beautiful had said.

Dr. Most Beautiful gave me back my life. I thought I was going crazy since no doctor was willing to treat me or listen to my concerns.

In February 2001, I went off birth control pills to try to conceive (ttc). DH and I ttc'd until June 2002 when I went back to Dr. Most Beautiful. She ran a battery of tests and then referred me over to the reproductive endocrinologist, Dr. I-Know-that-I'm-Good. I went in for my second surgery on August 30th, 2002. I'm diagnosed now with Stage 4 endo...it's all over the place. Dr. I-Know-that-I'm-Good leaves my left ovary glued down to the sidewall. I learned in post-op appointment that both of my tubes are blocked. But my Uplift procedure worked...well sort of. It's more at a 90 degree angle.

I had left side pain that just ached each cycle. I was upset that I went through a surgery that didn't really work. I felt horrible especially since Dr. I-Know-that-I'm-Good told me that he gets paid the same from the insurance company whether it's a 15 minute surgery or a 6 hour one. I lucked out and had a 2 hour surgery. I decided due to the results of surgery not to pursue any more fertility treatments. My attention was once again focused on adoption to start our family.

I have been having this left sided pain each and every cycle which has been getting worse and more daily. My symptoms now are pain with urination sometimes but not always and I'm not diagnosed with UTI, pain with ovulation, and more. So I'm heading to an endometriosis excision specialist, Dr. Albee and Dr. Sinervo in Atlanta, Georgia this time to have surgery.