If you are reading this, it is because you have been one of the people to treat me over the last two years, and I believe completely that you had my best interests in mind. However, no one should ever have to go through what I have been through in the aftermath of my hysterectomy, and I am writing this by means of providing an education.
In December of 1996 I began having extremely irregular periods--four times in eight weeks, then not at all for two months--that sort of thing. About six months later, the abdominal pain which had been growing in intensity and frequency became quite severe, and I knew I had endometriosis again. (I had had the disease for the first time in 1985, and had my left ovary and tube removed.) I was subjected to an endometrial biopsy and a sigmoidoscopy before finally having a laparoscopy. Dr. A told me in the recovery room that I had endometriosis and I said, “Yes; I knew that.”
Dr. A told me I had three options: 1. Deal with the pain, since endo is not life-threatening; 2. Take Lupron or a similar drug; 3. Have a hysterectomy. At that point I was already unable to walk upright, so “dealing with the pain” was not a realistic option. When I had endo in 1985, I took danazol for six months. Side effects included weight gain (30 pounds in two months), hot flashes, morning sickness, sleep disruption--needless to say, taking a similar drug did not seem like a logical option. So I opted for a hysterectomy, assuming that after about six weeks life could get back to normal.
My surgery on Tuesday, December 30, 1997 seemed to go very well. Early the next morning I asked to be taken off morphine so I could be up and about and lose the catheter. Other than some pretty intense nausea, I was fine. In fact, I rejected stronger painkillers because of the nausea and opted for plain tylenol, and that worked great.
Wednesday, a nurse with a rather strong accent slapped me on the bottom and said what after four tries on her part I realized was, “no hot flashes”. After a moment’s consideration, I realized she had put a hormone patch on me. This was the first I heard that I would need to take hormones; Dr. A had never said a word to me about it.
Friday I was able to go home. I looked forward to curling up in my own bed and getting some much needed overall rest. Friday night I was up until 4 a.m. It was my first indication that my life had just changed forever, although of course I didn’t realize that at the time. In my “past life” I NEVER had trouble sleeping unless I was in severe pain from something like a sprained ankle. Since that day, the pursuit of a normal night’s sleep has become the overriding concern of my life. I called Dr. A, who gave me two weeks’ worth of sleeping pills and said after that my system should adjust.
After about six weeks of not sleeping, and beginning to get rashes from the patch, I was put on premarin. Immediately I began sleeping much better, and I thought all would be well.
What I did notice was that I did not have much energy. I attributed this to having had pretty major surgery and just tried to get extra rest. I tried to drag myself through my normal exercise routines, but often I could not muster the energy. I thought this would go away once I was fully recovered.
In June I went to California for a short conference and to visit my family. When I came home I discovered that I had left my premarin at my Mom’s. By the time I called her and got the prescription number and called the doctor and pharmacist, I had been off the pills for four days, and an amazing thing had happened: I suddenly had all kinds of energy! I told Dr. A, who said I could try taking nothing and if I felt okay, he would prescribe a medication to avoid osteoporosis and all would be well.
Two weeks later I was up all night again. Dr. A tried me on estrace and then ogen; same results. The bottom line is that on estrogen I feel like I am living underwater. I have no energy and the weight gain is enormous. Off estrogen I cannot sleep at all.
At about the same time, I began seeing a psychiatrist and psychotherapist. I had suffered from clinical depression in the past and prozac had been very helpful, so I was immediately put on the drug again even though I didn’t believe I was depressed.
In the meantime, I was sent to an ear specialist because I had had an earache in June for which Dr. B, my internist, had tried some drops. They had some effect on the ear pain, but I had developed a persistent dizziness which continued to get worse. The first ear specialist heard my jaw click while he was examining me (I have had TMJ for years) and immediately decided my problem was my jaw. I told him the jaw hadn’t changed for years; occasional chiropractic adjustments seemed to take care of it; but he was not convinced. He recommended jaw surgery. I won’t go into all the reasons why I refuse to have the jaw surgery except to say that I’ve been advised not to have it by two different endodontists, a periodontist, and every dentist I’ve ever seen in the course of all my moving around; and, frankly, the TMJ pain I experience is no fun but is much more tolerable than the thought of unnecessary surgery.
So I went to a different ear specialist. He was extremely kind and did several tests. The results of the tests could be summed up by saying: You are dizzy, but there is no immediately apparent reason why. He did suggest trying verapamil. While my blood pressure was not elevated, he had had good results with it for people with my symptoms. Sure enough, within two weeks the dizziness had abated considerably. He did not suggest the dizziness could be related to hormone replacement. Only recently did I check the warnings accompanying my premarin prescription and notice that dizziness is listed as a possible side effect. If pharmacists know this, why don’t medical doctors?
In January, my persistent overriding exhaustion sent me back to Dr. B. His nurse did the initial interview and she said, “How old are you?” I said, “42.” She said, “How old to you feel?” I said, “92.” She nodded and told me that hysterectomy will do that to a woman.
I told Dr. B about my total lack of energy, short-term memory loss, and shooting pains that had increasingly been occurring in my legs and hips. He refused to attribute any of this to the hysterectomy or hormones, deciding instead that I probably had chronic fatigue syndrome or fibromyalgia. He put me on a pain medication. That day I finally canceled the last of all of the social and other non-work activities for which I simply no longer had the energy.
By this time, my therapist had told me that I had no signs of depression and that, considering that I was not sleeping at all, I was doing pretty well. She asked the psychiatrist to prescribe a sleeping pill. I asked to be taken off Prozac, and she agreed.
One evening I attended a seminar at the local junior college. It was put on by a woman pharmacist and dealt with herbal remedies, with emphasis on natural hormone replacement. This seminar marked the first time I realized that I might not be the only woman alive to have all the problems I was having. She had a list of recommended doctors who were sympathetic to NHRT.
I decided to call a woman doctor from the list. At first, Dr. C was extremely attentive. She listened carefully while I told my whole story. She said, however, that my problems could not be due to hormones. Instead, she insisted that the five surgeries I’d had in only two and a half years had probably just worn out my body, and I needed to get back on my feet. (I’d had a benign breast lump removed, a plantar neuroma removed, a rotator cuff repair, and the laparoscopy and hysterectomy.) She suggested I try ginseng for energy and St. John’s wort for insomnia.
I did find that regimen to be extremely helpful. Finally, I was sleeping and having energy at the same time, something that had not been true since before the hysterectomy. However, I was still having some short-term memory problems. In two months, without making any particular effort to do so, I dropped about ten pounds. I also found that my voracious appetite was slowing down.
The next time I saw Dr. C, I told her that I had begun having some persistent vaginal pain. She told me it was probably dryness and that I really needed to get back on hormone replacement in order for it to go away; and that I really needed its protection against cardiovascular disease. By this time I had decided to leave my wonderful job and friends and otherwise terrific life in Illinois to live with my mother in San Diego. I had decided I just couldn’t find the energy necessary to live alone and take care of a house by myself.
So I went back on a very small dose of premarin. I was still feeling pretty well, but a little less energetic. I had begun a huge exercise regimen: 30 to 45 minutes of brisk walking on the treadmill in the morning; after work one hour on the treadmill plus one hour kickboarding back and forth in the pool; plus some work with light weights. I did not feel the “exercise high” of energy burst that I used to get, but I knew the exercise was important and I kept hoping it would pay off in helping get my old body back. I was really toning up, but didn’t lose an ounce of weight. By then I was in the middle of moving and was staying with a friend. She said to me one day, “You must not have much of a sweet tooth--you never snack!”
On my 43rd birthday, I had my follow-up appointment with Dr. C. I waited about a half hour in the waiting room and then one hour in the exam room. She breezed in, apologizing that she had seen people out of order. I told her I was feeling a bit less energetic, but that I was still exercising like crazy but couldn’t lose any weight. She told me I was probably eating more than I realized. I told her I had spent two years on Weight Watchers losing seventy pounds and then keeping the weight off for over a year, so I had a pretty good idea of how much I needed to eat (or not eat) in order to lose weight. She flat out did not believe me, but repeated a number of times that I must be overeating. Finally I gave up trying to convince her, left the office, and cried all the way to the pharmacy and then all the way over to the restaurant where I was meeting several friends for my birthday dinner. Recently I looked up premarin on the internet and found the Wyeth labs own website. Among the side effects listed are dizziness, weight gain, breast enlargement, and asthma. So much for me “eating more than I realized”! (Incidentally, I suffered from terrible seasonal bouts of asthma when I lived in Sacramento, so why on earth would anyone give me a drug that might aggravate that condition?)
By September I had moved to San Diego and decided to try convincing yet another gynecologist that something needed to be done for me, hormone-wise. Additionally, I had begun having increasingly severe abdominal pain. I felt like I had endo again, though I dismissed that as impossible and he agreed with me. He did a hormone levels blood test. (First one anyone had done.) When it came back, he told me that my hormones were fine and that the endo pain had to be something else, so I should see my internist.
I waited about two months because I was just getting covered under insurance; then I met my terrific new internist. He said that my abdomen seemed normal upon exam and that the pain was not in a place where it would make sense for it to be anything but endo.
He shook his head in amazement when I told him that the gynecologist had said I could not have endo. So I went to a new gynecologist. He said of course I could have endo, but that only a laparoscopy could tell for certain. I did have an abdominal ultrasound, and nothing appears out of the ordinary. I am currently trying to find a day to schedule a laparoscopy.
Finally I recently saw an endocrinologist. He put me on estratest. After four weeks, I felt no more normal and felt a return of the dizziness I had been experiencing some time ago. I also went back to taking trazadone because I was not otherwise able to sleep. The trazadone left me feeling too hungover and the doctor said he was open to my taking natural hormone replacement but that he didn’t know anything about it. He took me off trazadone and estratest.
In the meantime, I had found an internet “support group” for post-hysterectomy women. Some women had very good outcomes, but many of us have the same post-surgery complaints. There is not a single one of my symptoms which is not shared by many of these women. And this while many of my doctors have routinely patted me on the shoulder and told me it couldn’t be related to the hysterectomy, or, what is worse, suggested that this must all be psychosomatic and if I would just have a better attitude all would be well.
I have also discovered that the American Medical Association has published studies that show that up to 70% of women who have had a hysterectomy for endometriosis will have the disease return if they are given unopposed estrogen replacement therapy. Why don’t any of my doctors know this? I have also read the results of the very recent study which reinforces the work of an earlier study indicating that estrogen has no effect on prevention of heart disease. Why didn’t any of my doctors know about that earlier study?
At this point, I often feel that my life is over. This is not “attitude”. I live every day in some old person’s body, and dream of the times just over two years ago when I felt confident that my body would be able to do whatever I was willing to make it do. I was even planning to train for a marathon. Now I feel grateful if I can get through a day of work and have the energy left when I get home to sit and read a book.
To sum it up: Before the hysterectomy I was in the best shape of my adult life. I did suffer from periodic migraines, but the older I got, the less frequent those became. I did have increasingly severe abdominal pain. Since the hysterectomy I have managed to lose the migraines, but the abdominal pain has returned. So much for the “cure” for endometriosis. In the meantime I have weight gain I cannot get rid of; shooting pains down my legs and in my hips; dizziness; debilitating insomnia; “foggy-brain” feeling and frequent memory lapses; vaginal dryness which is sometimes quite painful (I am single and celibate, so I can’t speak to how that might otherwise have affected my sex life); breasts which have grown and sagged so dramatically that next month I am having my second breast reduction; a big fat belly that doesn’t go away no matter what I do (the one part of me which had never been big, no matter how overweight I was--last summer during my huge exercise regimen I did up to 1000 crunches twice each day to no avail); frequent and sudden incontinence which only gets worse when I try to follow a good walking exercise routine; many wrinkles in my face; and the persistent feeling that I had better work to ensure that my debts are paid and I can live cheaply because, at the ripe ol’ age of not-quite-44, I am not sure how long I will be able to continue working full time.
If you have read this far, I really do appreciate your patience. Believe it or not, although I feel some horrible mistakes have been made in my treatment, I have not written this letter to blame anybody. I just feel that I must do my part to try to ensure that no one else ever has to go through what I have been through. I can only wonder how many women have chalked up many of their symptoms to “old age”. I wonder why drug companies are not trying to find other ways to combat endometriosis or to help with more balanced hormone replacement therapies. I wonder why no one bothered to check my hormone levels before the surgery, so we’d be able to tell what “normal” looks like for my body. And as much as it galls me even to have to think this, I wonder what would happen if we castrated 650,000 men every year and then told them they’d be “good as new” and would never miss their testicles.