PERSONAL STORY: KIMBERLY BRADFORDMy diagnosis of Endo came in October of 92, but my ordeal started when I was 11. Like most of us, I had the usual, painful period then painful ovulation. My period kept getting longer and longer despite being on birth control pills at age 16. I complained to my GYN for years about the pain, but it was not until I had a class II pap (Dyplasia) that she finally listened. She wanted to do a biopsy and laser my cervix so she agreed to do a Lap at the same time. I was 24 at the time of my lap. I worked in the same hospital as my doctor so she knew me by name. She was also my mother's doctor. Needless to say, I trusted her. I think she agreed to do the lap to try and prove me wrong. I had been doing research on my pain and knew I had Endo. Well, I had it. It was covering my bladder. This explained why I always thought I had a bladder infection or UTI only to have the tests come back negative. It also explained why Sex hurt so much. She told my parents afterwards that she didn't remove any, she told us it was inoperable and wanted to put me on a drug called Lupron. I had to watch a video prior to getting an injection. It was made by TAP holdings, the pharmaceutical company that makes Lupron. In the video was this very perky women spewing the benefits of Lupron and how you can find relief for up to a WHOLE YEAR. A year sounded like a long time then.... Little did I know. The only info I could find on Lupron was mostly for men with Prostate cancer. It was listed in the PDR but that doesn't really give you an idea on how "real" people react. I gave up my search and took the drug. I mean, after all, I trusted my doctor. I was told about the pseudo-menopause symptoms, hot flashes and such. She also told me to drink milk, but not to worry about it too much because of my age. I started complaining right after my first injection. The hot flashes were horrible. My poor mother felt so sorry for me she stopped taking her hormones so we could "flash" together. It was winter so at least we could just go outside and melt snow. But this was fun compared to the rest. I started bruising badly, just from wearing shoes. No one could touch me without an imprint of their finger or hand showing up on my skin. I called the doctor, the one I trusted, and was told "don't go horseback riding". She said it as if it was part of my daily routine. I felt like I was in a "fog." I couldn't think. Decisions like what color sweater to wear became a major ordeal. When I looked in the mirror I always expected to see someone else. I felt 80. Everything hurt, like someone drained my blood and replaced it with acid. The shots were given by one of the nurses in her office. When I received my records in the mail a few months ago the notes were filled with notes like "Kim is very excited about planning her wedding". No complaints, nothing medical! Nothing I said was documented. I did complain, about headaches, insomnia, joint pain, and pain at the injection site for days. I was told that none of these things could be caused by Lupron and not to worry about them. I was left believing that I just had an overactive imagination. My doctor did only one exam during those 6 months and it was really bad! I wanted to kicked her in the face. I told her it hurt and she said "what about sex?" Was she kidding? I couldn't stand the Q-tip never mind actually having sex. She said "everything looks great, you're going to be just fine." I was so naive. I wanted so badly to believe her. I tried to put it out of my mind. After all, I had a wedding to plan. All my energy went to that and just trying to get thorough a week of work without missing too much time. I got married on June 5, 1993, one month after my last injection. 400 invited guests, family, friends, and members of his family I had not met yet all witnessed my total emotional breakdown. It was REALLY awful! I can't even bear to watch the video as all you see is my head bobbing as I cried. I should have bought stock in Kleenex. I must have gone through 4 boxes during the service. I could not even say my vows because I was crying so hard. My husband thought I wanted out. I did but only to put an end to the embarrassment. We could not kiss because I had to blow my nose, as if no one would notice. Somehow we got through the night. Next came the honeymoon and a week of unbelievable pain. I kept quiet, I was supposed to be OK, this was just in my head. When we got back we moved from Maryland to Virginia, about 3 hrs away. By August I couldn't stand the pain anymore. I finally broke down and told my husband everything. I told him he could leave me if he wanted. I was not the same person he thought he had married and I was not sure if I would ever be the same. The pain was getting worse, not better as the doctor had promised. I called her, desperate for answers. Her reply "there is nothing more I can do for you, find another doctor." I was devastated, but I needed help so I searched for a new doctor. I finally found one who specialized in high risk pregnancy and GYN disorders. She met with my husband and I for over an hour. She had lots of questions. The biggest being "why was the Endo not removed"? Good Question!!! I was told it was inoperable. This was the beginning of an eye opening experience. I finally realized that my doctor of nine years had deceived me. Anyway, the new doctor wanted to do another lap. I had it in October 93. Almost exactly a year from the first one. Despite my old doctor's promises of Lupron helping me it actually made it worse!!! It had gone from just my bladder to my bladder, cul de sac, ovaries, and tubes. Basically there was a little bit everywhere and I would not have be able to have children without her intervention. She removed all she could and did a LUNA as well but could not get to as much of the nerve as she would have liked. We had no time to waste planning a pregnancy. My husband knew when we got married that our window of opportunity for children would be small. We got the green light and I was pregnant by January 94. Sadly, Our happiness did not last long. I miscarried in March. I shut myself off from the rest of the world for a while. That summer I drank. A lot. Looking back it wasn't fully out of depression, it was also to hide my other problems. It was easier to hide my dizziness and stumbling and visual problems if I had a few drinks than to admit there was something else wrong with me. Somehow we got through it and by In September, I was pregnant again. This time I told no one until I was past the point of my last miscarriage. I was so fearful of losing this one I would wake up thinking I was in labor, pushing and everything. The pain was pretty intense the first couple of months, but it did give me an excuse again for my klutziness. Then around 3 1/2 months an amazing thing happened, I felt great! For about 5 months I was almost pain free, symptom free, headache free. WOW! My son was born on May 11, 1995. I nursed for about 3 months then tried to go back on birth control pills. But to my surprise, I could not remember to take them everyday. I talked to my doctor and finally decided that Depo Provera may be the best choice. It offered me a chance to "save" my uterus until I was ready to have another one. I wouldn't get a period so the pain I had with them and ovulation would be gone. At the time it made sense. But with it I also lost my excuses for not facing the other problems my body was having. And just to prove it they started knocking me on my butt. I started to get sinus infections. I should say again, my VERY first sinus infection ever came after my second injection. I never had allergy problems before. After months of trying different antibiotics my doctor finally sent me to an allergy specialist. That's when I found out I now had an IGA deficiency. This had been checked by the doctor I saw for the infections I got while on Lupron. My IGA at that time was low, but still in normal range. Basically your body has five different Ig's for different systems in your body. They are the "brains" behind your white blood cells and tell your white blood cells what to attack when you have an infection. I don't have enough to fight infections in my respiratory system. I also learned that when I get a sinus infection I am more susceptible to other infections like strep throat and bacterial laryngitis. They put me on Prednisone and a long course of Biaxin. Still it took months to get well. I was miserable and thought for sure I was going to lose my mind! When the infections finally settled down I went back to work for the Orthopedic practice I was with before I had my son. He was almost two and I thought he needed to be with children his age, rather than a mother who was sick all the time. It didn't take long for myself and others to realize something was wrong. I mean you can only walk into so many walls before someone asks if you're all right. My right foot has a tendency to "disappear" on me at times. I hardly noticed my tripping over it anymore, but others noticed. I started getting these intense migraines with an Olfactory aura. Everything smelled like it was burning. My PCP thought I should have an MRI of my brain. I had it on a Thursday. That evening I got a call from my doctor. They wanted to do more. I needed to go back to the hospital in the morning for more MRI's. Then when we got home I got another call. They still wanted more, so back we went. Since it was a Friday and I was scared to death, at this point my PCP gave me her home number to call if I needed anything. She also wanted to see me Monday morning. She didn't have the results but thought I should see a Neurologist. The one she had called in to read my MRI was not in my insurance plan, so she went through the book and found one that could see me right away. I can tell you this was the single most humiliating experience in my entire life! He came into the exam room abruptly, he did not even introduce himself. He picked up my chart and looked at me and said "So your feeling dizzy, what does that mean? Look at the wall, is the wall spinning or are you spinning" I was speechless! I was also very scared, I still didn't have the results of my MRI, but I had brought the films with me and he proceeded to read them by holding them up to the light above his head, no light board. The whole time he is looking at them he's saying "Well you get headaches because, unfortunately, you are a woman." I kid you not he really said this! Then he looks at my eyes and asks if I had been checked for syphilis. I had enough and left. What a jerk! I took my MRI films back to the hospital and called my PCP to tell them what happened. That doctor's name is no longer in their book! They still had not received a report on my MRI. In the mean time I went to an ENT to rule out Menergies disease. The doctor was very nice and said I had classic vertigo but did not know why. He said maybe it was just a virus and would go away. At this point all I could do was hope and pray. I made an appointment to see him back in three weeks. He said he would run more tests if nothing had improved. About one week before my follow-up with him I got a call from my PCP. She said she really wanted me to see another Neurologist. I got nervous and told her I was willing to go out of my Insurance network if she could get me in. The best the Neuro's office could do was 2 months away. I took it and kept my appointment with the ENT. This is when I learned what everyone already knew. My MRI showed lesions on my brain. There was a question of "demylinating lesions" or Multiple Sclerosis. I don't remember the drive back to my office that day. Only my supervisor driving me home. And the look on my husbands face when he came home and found me curled up on the kitchen floor. We had tried to convince ourselves that no news was good news. I kept thinking "this is not real, this is not happening to me, to us." I kept calling the Neurologists office in hopes of a cancellation or something. I was very angry, how could everyone just expect me to put my brain on hold? When I finally saw him he showed me the area everyone was fussing about. I have come to call it "my spot." It is an area about the size of a quarter on the left side of my brain. It's in the white matter, in the middle, near the pituitary gland, but not in an area they can biopsy without causing more injury. He wanted to do a battery of tests, lab work, visual evoke potentials and a spinal tap. So far so good, then about four days after my spinal tap on a Saturday morning my husband tried to hand me the phone. It was my parents. I could hardly move the right side. I couldn't grip the phone with my right hand. I couldn't talk, just slur. My husband was scared, I was worse. I tried to get up, the right side of my body felt like it weighed 300 lbs. We called the neurologist and he met us in the ER. He did some tests and seemed worried. He decided that I should stay in the hospital for a few days and take IV steroids, salumedrol. He also thought that I may still be leaking spinal fluid and should have a blood patch, and more MRI's. While I was in the hospital he got the results of my Spinal tap, No Multipe Sclerosis. But that did not help tell us what was going on. They took me to the O.R. and did the blood patch, YUCK!!!! And then off to MRI to do more MRI's and a MRA to check for stroke. Lesions still there but nothing else. After four days I still did not have the use of my right hand. Two days after I got home I started to swell. I though I was having a reaction to something, but did not know to what. As I swelled it felt like every cell in my body was exploding. I called the Neuro just to have him refer me back to my PCP. They wanted to see me first thing in the morning, but that meant still getting through the night. I should have gone to the ER but instead just sat up all night. I felt like I had been hit by a Mac truck. When I woke in the morning I looked like I had the chicken pox, but I could finally move my hand. My stomach hurt pretty bad but I thought it was just from the swelling as everything else hurt as well. When I got to my PCP's office she did an exam, made an appointment for me with a dermatologist for the rash and to top it all off she explained that the stomach pain could possibly be a from the steroids. I have stomach problems anyway and she was afraid it ripped a hole in my stomach. So back to the hospital for an Upper GI. That turned out OK, no holes. She gave me darvocet for pain. That to go along with the bag of Meds I already had from the Neurologist: Fiorocet, imitrex, erogot, Noratryptoline, Inderol, and midrin. I am a walking pharmacy. Now I add Zantac back to my list. My Neurologist thought it would be a good idea for me to get another opinion since he was still not sure what to pinpoint everything to. So I took my MRI's and records to The Medical College of Virginia (MCV), to the Neurology department. There I was examined by three students, one resident and one fully certified physician. After two hours of questions and following pen lights they finally looked at my MRI's. The doctor turned to everyone in the room and said "Do you see it?" I felt like a lab rat!! "WELL" he finally gets back to me, "The good news is you don't have M.S., the bad new is I think you have Lupus"? When will this nightmare ever end? It took a while to let this "new" diagnosis set in. Then to organize it in my mind as to how they could go from one end of the spectrum to another. I started to do some research and it seems that Lupus and Muliple Sclerosis have a lot of the same symptoms. Even the treatment is the same. Change your diet, get more exercise, take steroids when you have a "flare." Someone at work recommended a Rheumotologist and I made an appointment. He is known for having the longest living Scleroderma patient and very well respected in our community. Unfortunately it made his ego quite large. He, like ALL the other doctors spent a great deal of time with me during the initial evaluation. He ordered his own round of blood work and checked all my joints and muscles. He told me to bring my husband with me for the follow-up because he wanted him to understand EVERYTHING that was happening. A month later we found ourselves in the exam room with the doctor telling us that as far as the question of Lupus goes my SED RATE was OK so we should talk about something else for now. Fibromyalgia. I sat there for a half hour and only heard about 3 words he said. Rub here, Rub there, get more exercise, see me in a month. Now this time I am sure I was losing my mind! I have to be, that is the only explanation for what has been happening to me the past few years. I went back for the follow up and with a list of questions. None of which were answered. He seemed uninterested in the Neurological things that were happening. I was worried about this happening in public or while I was alone with my son, what would happen to him? Then it happened. I picked him up from preschool and wanted to buy him a new pair of shoes. I was carrying him because it was a busy parking lot and he is very active. We had to walk up about 5 concrete steps to get into the shopping center. On the second step my right foot just "disappeared" and down we went. His back slammed into the concrete as did my right knee. He's screaming, I'm dazed and hurt and people are running at us, out from the stores. This has to be a nightmare. I shut my eyes and tried to wish it all away. It didn't work. We finally got up. His back was OK, just a little scrape and a lot of scared. I looked around and could not remember where I parked the car. Then I saw it but it kept getting farther and farther away. My heart raced and I felt cold sweat just pouring out of me. An anxiety attack on top of it all. The doctor heard none of this. He said "perhaps you're not getting enough sleep. He handed me a prescription for Flexeril and Ambien "See me back in a month or two". I wanted to scream! I finally sought out a counselor and saw her for about 6 months, once a week. It felt so good to be told that I wasn't crazy, I really needed to hear that. It also felt good to be treated like my problems were important. She never once said the old "it could be worse, you could have X,Y or Z." She was just as appalled at the way I had been treated and shuffled around from doctor to doctor, none of them taking into account the other's findings. She helped me come to terms with things I already knew, but could not accept. There is no going back, I can't turn back the clock and not take Lupron, it's already done. There most likely is no cure for what is wrong with me, but there can be peace. It's just finding a way to obtain it. She gave me the courage to do my own research and ways of reaching out to others who this has happened to. She helped me find my voice. Now I am able to share my story, this story, with others and possibly prevent this from happening to someone else. This is my path to peace. Through this search I have found that My illness is probably not Multiple Sclerosis, or Lupus, but something else, something somewhere in-between. I have begun seeking out other doctors. Ones to help me deal with the pain I have daily. Most of my physical pain is on the right side. There are signs of Arthritis in my neck, right hand and elbow and right knee. I also still see the Neurologist to keep an eye on the lesions and help with headaches. I see a Neuro-opt, one of my Neuro's partners to keep track of the Neuropathy and Adie syndrome in my right eye. My husband has been VERY supportive. He bought me this computer to help me research. He has gone to the library with me and tries to find contacts who may be able to help us. He kept me grounded when I found the information on the NLVN. He was with me when we brought all this to the attention of my PCP and was told by them that "the only way for the medical community to know these things is when a group of people search each other out and find that they have the same problems and the only common denominator is a certain drug...in this case LUPRON." He filled out my FMLA stating that this all started when I unknowingly got myself involved with the FDA's phase IV clinical trial of LUPRON. I did not know until my own research that I was part of a clinical trial. I never signed a consent for this. I am just as sure that the doctor who gave it to me NEVER filled out the MEDWATCH forms or reported any of my problems with this drug. I called TAP in the beginning just to see what they would say. I asked if they were going to do any long term studies on Lupron. They told me "Maybe in another 20-25 years, look how long it took them to find out about DES." I can't wait that long. For now I will continue to spread this story to as many people as I can. I will continue to have a battery of tests done every couple of months. I will continue to try to find doctors who have some answers. I will continue to take various combinations of medications to try to keep my illness as stable as possible. I will try to continue to be the best mother and wife as I can be. I will continue my search for peace. To those of you who made it this far in this story and are facing problems from taking Lupron, please know that you are not alone in your fears or concerns about what this drug has done to you. There is a lot of information out there and a few very good sources of support. If there is anything I can do to help you, just ask! There is info available on Medscape and from the national Library of medicine at pubmed. Dateline aired a show on Lupron on Jan.2, 2000. They interviewed 9 women who all have permanent damage from taking Lupron. One of those women, started a website to offer support: Julie's After Lupron Forum. I believe 8 of the 9 women post there as well as many, many others. There is also a petition: Lupron Petition. Kay Lazar, a reporter for the Boston Herald, wrote a 2 part article on our Lupron Damage in Aug 99. If anyone would like the links or the articles, just ask. Until we find a lawyer who will take our case our own stories are the most powerful tool we have. If you have not taken Lupron yet and are trying to decide please do your research before you do anything that could alter your life forever. I know that Endometriosis is VERY painful. I still have it. I know that pain can cloud our judgment. The promises of a painfree period of time. The HOPE it brings to be painfree is a very persuasive reason for taking it. Please do not take what I have said lightly. I am not the only one. This is only one story, I am only one person. All I ask is that you search. Search your heart, your mind and weigh the price of your soul.... Good luck to all!
July, 1999: I told my GYN at the first visit my problems from Lupron. He had me start taking pre-natal vitamins to boost my immune system. He also referred me to a Reproductive Endocrinologist. We have met with him once and his acknowledgment of my Lupron trouble has been the best I have received. He added more B-6 and evening primrose oil to my list of meds. The bad news is he has diagnosed me with secondary infertility. He does not think I am ovulating at all and when he did an internal sonogram he did not like the looks of my ovaries. I will have an HSG next month and possible start fertility drugs. His biggest concern with these meds is that they *do* make endo worse. They are all high in estrogen, which most of you know feeds the endo. He is also concerned about what other antibodies Lupron may have caused me to develop, so I will be tested for those soon. My pregnancy, if it happens, must also be followed by a Neurologist. I have an appointment with one soon. Basically I am starting from ground zero. Being a "new" patient, filling out endless forms, explaining my condition(s) and it's cause, hoping they believe me or at least understand. Not to mention waiting MONTHS for that new patient slot to open up.
August, 1999:
November 10, 1999: My follow up with him is on the 15th. I am not recovering as quickly as I should. I can't seem to shake the "flu" like symptoms and fatigue. I had a few complications after surgery. My blood pressure dropped and heart rate dropped very low. They had to keep waking me up. Plus I had trouble peeing. Don't understand why it never occurred to them that I might have a UTI since I had a low grade fever and pain. The pain meds they were giving me came by the way of hip injection. Well, one struck a nerve and now my leg feels like I have a HUGE gaping wound in it. It hurts to shave. Supposedly this will slowly go away. I hope so!!! I am not feeling well today! I am nauseous and my stomach hurts, right around my uterus. I have received more published articles on Lupron. 2 from the Boston globe from 1996. It details two women taking Lupron for infertility and it caused hyperstimulation of the ovaries. They both almost died. The others are from the HERS foundation from back in 1989-1990. The founder of this group had all the research info on Lupron prior to it's approval. She has proof to show that they knew of the dangers of this drug before it got approved. She also gives her strong opinion that Lupron will turn out to be worse than Thalidomide or DES ever was. For my son's sake (he is a post Lupron baby) I pray to GOD every night that he is spared! It is bad enough that he got me for a Mom.
November 20, 1999:
June 2000:
November 2000: I HATE that he saw me like this. I hate even more that he had to come with us to the ER. Oddly, in all my years with endo this was my first trip to the ER because of it. It took 2 shots of demerol to calm me down and be able to tell them what was wrong. When someone came into check my uterus I think I could have kicked him into the next room! The pain was incredible. They gave me another shot before sending me on my way. Nothing they can do for me there. I went to see the GYN the next day and the word Hysterectomy was tossed around again. He gave me more pain med and told me to return in 3 weeks. Well, I'm not going to make it to 3 weeks. Zak came into my room the 2 nights ago looking for the dog and when I got up to help him the pain started again. This time the pain was alone. I made it to the bathroom in time to pass a few large clots and am still bleeding today. I have an appointment friday morning. If I can just make it through the holidays. Lupron info: http://www.delphi.com/afterlupron/ Kimberly Bradford |