Introducing.....Jenny (Raven2Wren)
My Endometriosis Story--Jennifer Phinney (Raven2wren@aol.com) March 12, 1998
Let me begin by saying that I am 25 years old. I have been married to the love of my life for 7 years. We own our own home, have nice vehicles, and my husband has a wonderful career that he loves. We have two beautiful children, Megan is four, and Bradley is two. I am a stay-at-home mother with my own home business. It sounds like the American Dream. It is, except, I am in pain. I have Endometriosis.
I have been in daily pain for 6 months. When I ovulate and have my period, I hurt so bad that I can barely walk. What about pain medication? I have to take so much that I feel tired and irritable, just like I feel with the pain.
I was diagnosed with moderate (Stage 3) Endo in November 1997 (5 months ago). The general GYN that did my laproscope surgery opened me up, took four pictures, and sewed me up again. The whole procedure took about 45 minutes. She found endo deeply implanted in my bowel, on my uterus, and on my bladder. I had adhesions that connected the three organs into one large mass. She "disconnected" the adhesions, but did not bother to laser anything. I was told that I should take Lupron to dissolve the implant on my bowel before it broke through the bowel wall. I found out later that Lupron merely shrinks implants at best. I was given no pain medication to help me, as the Dr said that I may become addicted to pain meds. She also told me that the only side effects with the drug are hot flashes and vaginal dryness.
When my husband told her that we had heard about horrible side effects, she said "How dare you question ME" and then explained to us that the side effects only occur with the 7 mg shots that are continued beyond six months. I would be taking 3.75 mg shots and would not experience these adverse side effects.
She convinced me to take the first shot. We decided not to ever return to her because of her attitude and because she lost the surgical pictures and did not keep good records. My records only said that I have Endometriosis, no mention of the stage or the location. My next GYN explained that she does that so that her patients cannot go to another Dr.
I had mentally prepared myself to NEVER have side effects, but they started immediately. Swelling of my hands, rash, anxiety, stress, frustration, depression, chest pain, migraine headaches, racing pulse, spotting and a period, nausea, vomiting, lack of appetite, weight loss, constipation, shaking, lack of concentration, bone pain, insomnia, hot flashes, night sweats. I never did get vaginal dryness!
I had just had surgery, so I suspected that most of this happened because I was run down, and when my next GYN explained that the side effects get better each month, and that I would not have any spotting after the second injection, I thought I had nothing to loose. After all, he said that if I could make it through six injections, I would be better off in the long run.
The second month was slightly better than the first. I had only 15 total days of spotting so that seemed a great improvement over the first month. I really thought that Lupron was starting to work. I took comfort in knowing the side effects would only get better in time.
The third month was worse than any of them. I was still spotting. By this time I had daily migraines and my bowels did not work unless I took laxatives. The bone pain got so bad in my knees that I could not even walk for three days. I called my GYN to tell him that the side effects were too much, I had enough. He said that Lupron would not cause the side effects that I have been suffering and to see my Family Practice Dr about my complaints.
By this time I was angry. I printed out the information from the Lupron Victims web page, armed myself to the gills with endometriosis information, and limped into the office ready to defend my case and be heard. I started to rant, rave, and cry about the endo and the Lupron. My Dr stopped me, and for a brief moment I expected him to tell me to see a shrink. My jaw nearly hit the floor when he said "I think you are allergic to Lupron, and it won't help BOWEL Endo anyway. You need to have it surgically removed." I found a Dr that knew his stuff, and who cared about what I thought.
My days are hard. I take Perdium with a laxative twice a day to keep my bowels moving. My GI did a colonoscopy that showed a severe adhesion problem that is norrowing my bowel to 1/3 of the size it should be, and let me tell you it hurts so bad that I cry when I go. The implant has not broken through my bowel wall, but I feel like it is a time bomb waiting to explode.
I have bladder pain and burning when I urinate. The blood in my urine ranges from 2+ to 4+ depending upon how active my endo is. I have felt like I have had a constant urinary tract infection for 7 months. I have had four infections in that time. The fuller my bladder is, the more it hurts, so I wake up in agony and run to the bathroom several times a night.
I need to have surgery, but my GYN quit last Friday because he cannot help me with my bowel and bladder. He recommended that I see a laproscope specialist, my appiontment is in two weeks.
This nightmare did not happen overnight. I can remember my very first period, I thought that I had appendicitis for three days before it started. My mother teased me for complaining, after all every woman has PMS, and I was still a rookie.
When I was 14 years old I was hospitalized for possible appendicitis. I had a laperotomy that found that I had strange growths on three of my lymphnodes, they were biopsied. I was told that it was not cancer, and to stop complaining about "discomfort during my periods". I was put on the pill.
I found out, just last week, that the Dr that did that surgery lost her license because she left sponges in patients and walked out in the middle of surgeries. My mother trusted what she had said, so I was branded a hypochondriac.
I had missed a lot of school. My grades went from straight A's to D's and F's. I was in a lot of pain, moody, constantly fatigued, and even my own mother did not believe me. She called me a hypochondriac to my face. I hurt so bad that I literally passed out on my desk in Algebra class. The teacher had been informed that I was faking for attention, so she kicked me out of her class to teach me a lesson. I was given "tough love" to break my attitude problems.
I left home when I was 17, the verbal abuse was too much for me to bear. By this time I had become anorexic, and a high estimate of my weight was 95 lbs. I thought that if I was called a troubled teen, it was about time that I acted like one. I went from relative to relative for the months between then and my 18th birthday. My relatives, and my long time boyfriend, helped me by lying about my location. They knew that I should stay away from my mother's home.
I got married two weeks after I turned 18. I had my children at age 20 and 22. I can't tell you the hundreds of people that told me that I was making a mistake by being so responsible at a young age. I thank GOD everyday that I followed my heart and dreams of being a wife and mother. If I had waited, those dreams may have never come true.
My family keeps me going. The children make me smile, even when I am in pain. They are even more precious to me now that I have been diagnosed. I have beaten the anorexia. There is nothing like knowing that you are eating for a small baby inside of you, to change your eating habits for the better. I do not eat red meat, and I stick to a healthy diet.
My husband has an optomistic attitude. Just being near him makes me feel stronger. He could not live without me, nor I without him. We are soul mates, and we are standing together through this life. My pain does add stress to our lives, but we are making the most out of every day.
I have dedicated myself to help find a cure for endometriosis. I make yellow awareness ribbons that I give away in exchange for donations to the Endometriosis Research Center. I have educated myself, with the help of my "Endo Sisters" and my computer, to answer questions about the disease. I help to support women that are just as scared as I am.
Bad things happen to good people. How we deal with it reflects on our entire lives. I am dedicated to making the best out of my bad situation. I am currently gathering endometriosis information for my future web page "Raven's Nest".
Jennifer Phinney
Raven2wren@aol.com
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