August 1, 2007

My Myomectomy:
A Woman’s Personal Quest to Save Her Uterus

I am a "soccer mom" living in Brooklyn, NY. A lot of my time is consumed by my work as a teacher and my duties as a mother. This past summer, my health necessitated that I spend a considerable amount of time searching for information about hysterectomies and when, if ever, they are necessary to preserve a woman's health. I began an adventure, or a quest really, to save myself from hysterectomy.

I decided to publish my story in the only way I knew possible, precisely because I had such a hard time finding information about hysterectomy. Many OBGYNs are very quick to recommend hysterectomy to remedy a host of women's troubles. In many cases, hysterectomy is unnecessary. Since I had been told by two OBGYNs that I needed a hysterectomy for my problems with fibroids, my question became, "When is hysterectomy necessary?"

After my diagnoses, I read many articles on line and several books on the subject. I learned that there are other doctors who are of the opinion that hysterectomy is only necessary in cases of cancer, which is currently about 10% of hysterectomies performed in this country.

Below is the story of how I saved my uterus and my ovaries while having my fibroids removed by a very special doctor in NYC. My article is long, so feel free to skip any boring parts.

If you have a story to tell about hysterectomy, or about avoiding hysterectomy, please share your thoughts.





My Fibroid History
My fibroids were first diagnosed shortly before my wedding, in 1990. I was 32 and seeing an OBGYN by the name of Zinberg. It was my first of many experiences with traditional doctors who overreact and scare their patients to death. Based on the level of concern on his face at the moment of detection, I thought I had a terminal condition. He immediately ordered a batch of tests, barking instructions to his nurse who was frantically scribbling the dictation, including a sonogram and a CA125, which is a blood test I had read about in Gilda Radner’s book as a way to detect ovarian cancer. Wonderful. Zinberg only referred to the fibroids as tumors leading me to believe that I, too, must have ovarian cancer. This is exactly what happens to women all across this country. Doctors act as if finding fibroids is a monumental and hideous event. In reality the incidents of fibroids is actually very common. Fortunately, in my case, the sonogram technician was much more relaxed. He kept asking me why I was being tested, as though he saw no problem with my uterus. My fibroids were relatively small and there weren’t that many of them. He saw nothing unusual, thank goodness, and I was left to wonder why I had “broken” this terrible news to my teary mother and fiancé just before our wedding, complete with hugs, fear, and bleak hopes for the future.

A year after my wedding, I was pregnant with my first child and Dr. Zinberg deemed that he would consider my pregnancy “high risk” because of my fibroids. I had been doing enough reading about pregnancy and childbirth to know that I wanted to have as natural a delivery as possible and nothing at all associated with a “high risk” pregnancy and a cesarean section delivery. I left Dr. Zinberg’s practice and promptly found excellent prenatal care at CBS Midwifery. There I met a variety of kind, relaxed, supportive women who chuckled at the idea of my pregnancy classified as “high risk” and told me that the biggest problem with fibroids is that they can prevent pregnancy. As I was pregnant, the most difficult part was over. The midwives did acknowledge that I had a lot of fibroids and during subsequent sonograms, my uterus was referred to as a “fibroid farm.”

I successfully delivered vaginally twice: my daughter in 1992, and my son in 1995.

I continued to use CBS Midwifery for my GYN care. I primarily saw Barbara Sellars, my favorite of the midwives. Barbara monitored the activities of my fibroids but believed that if I could “wait it out”: that the fibroids would shrink with the onset of menopause. I wasn’t experiencing very bad symptoms, except that the fibroids were visible to others. My abdomen was distended and I was often mysteriously offered seats on the subway. But, I decided that I could and would live with that, and thus decided to “wait them out” as Barbara suggested.

As much as I love Barbara, with two babies, a house, a husband, and a full time job, I decided that I might better be able to take care of my health if I saw a midwife closer to home in Brooklyn. I decided to try Park Slope Midwifery and upon my first examination, I was sent again for a sonogram that had to be “read by a doctor” because of the possibility that my fibroids were beginning to impact my kidneys. I was a bit perplexed as Barbara had never expressed this concern to me, but in fairness, a few years may have slipped by since my last visit to her and my fibroids might have grown considerably.

I was really stuck for an OBGYN to read the sonogram report, having let Dr. Zinberg go so long before. I remembered the doctor who backed up CBS Midwives when my son was born, Dr. Donald Matheson, who actually ended up delivering my baby because of complications during delivery. He has a beautiful office in a cool Chelsea building, complete with the most modern equipment. However, Matheson was tough to see and missed a few appointments because he was called to deliver babies. When I finally saw him, he expressed dismay with my fibroids and told me that they should be surgically removed. He didn’t express as much concern for my health as he did for my looks. He asked me, “Why would you want to be like that?” I listened to him, thought about his suggestions and told him I would speak to my husband about the possibility of surgery. I hadn’t done much research, so at the time, I didn’t really know what would have been involved. I guess I was expecting him to recommend treatment for the fibroids before surgery.

Through a Weight Watcher’s chat room, I heard about a book written by Dr. John Lee called "What Your Doctor May Not Tell You About Premenopause…." I read it, and I learned that I was, indeed, premenopausal. Many of my monthly emotional symptoms such as irritability, depression and anxiety, as well as the physical bloating and cramps, were all typical symptoms of premenopause. I felt so comforted after reading Dr. Lee’s book. It was great to hear the voice of a sympathetic and supportive doctor who was trying to provide sensible information to women. Dr. Lee’s book explained hormonal imbalance and the effects of estrogen dominance in women. Fibroids, he wrote, are indications that there is too much estrogen in the body. To treat this condition, he recommended a holistic approach which included stress reduction, therapy when needed, a balanced, healthy organic diet, vitamin and mineral supplements and additional progesterone applied topically. Armed with a plan to treat myself, I decided to hold off on any surgery.

Two years later, my abdomen was much bigger. My clothes were all too tight. Although I ate well and tried to exercise, and I faithfully applied progesterone cream, the treatment wasn’t working for me. Dr. Lee wrote that my fibroids, which I could feel with my hands, should have shrunk to the size of walnuts. Mine felt more like California avocados. I have to say, though, that other than their size, I didn’t really feel that I had many other serious problems. I had pain during my periods, but not that much more than I’d always had. I had some heavy bleeding each month, but again, not for many days, just two or three. Sometimes I had pain that felt like the back labor I experienced during my daughter’s birth. I also sometimes had pain in my legs. But, again, compared to some of the stories I was hearing from others and reading about on line and in magazines, I didn’t think my situation was that bad.

My Resistance
Still, I decided to revisit Matheson last summer to talk again about surgery. When I finally saw him, he rescinded the invitation for fibroid removal and instead suggested a hysterectomy. I asked him why he couldn’t just remove the fibroids and he said that they were too big, and what did I need my uterus for anyway, at my age? I feebly replied something about the importance of those organs. As if striking a deal, he offered to leave my ovaries in tact, if I wanted them. I thanked him, and I told him again I would think about surgery and left.

My dental hygienist is also a Chinese herbalist and acupuncturist. She takes great care of my teeth and gums, and is also acutely alert to changes in her patients’ health, which she can sometimes see orally. Jeannette never expressed concern about my oral bleeding, just about the rapid build up of plaque my mouth develops each month. She, and many others, believes it is the same type of plaque that clogs the arteries of the heart. Because of the rampant heart disease on my father’s side of his family (basically everybody died young of heart disease,) that has always been our focus. When I told Jeannette that Dr. Matheson recommended a hysterectomy for me, she suggested that I see her OBGYN, who was reputed to be calm and rational and not quick to jump into surgery. Because of conflicts in our schedules, it took a year for me to see him. I finally saw him July of this year, 2007.

I waited over two hours to be seen, and when I met him, Dr. Richard Slatkin didn’t touch me or measure me. He simply looked at me and concurred with Dr. Matheson immediately. “Hysterectomy,” he said, “and soon.” He was concerned about my ureters and the pressure the fibroids were placing on them and how that might affect my kidneys. “Yes, hysterectomy will cause instant menopause. If you have any symptoms, we’ll give you a little estrogen to protect your heart. If you really want, I can try to keep your ovaries in, but I don’t see why you would want them. They may become cancerous. Let’s just get them out.”

They use the “c” word to scare you. Fibroids are not malignant. There is no ovarian cancer in my family. And yet, he scared me into consent. I became afraid not to have a hysterectomy. In Slatkin’s office, I verbally agreed to the surgery. Slatkin gave me a prescription for an MRI to get a close look at the fibroids’ size and location. I left his office in a daze.

As I was driving home, I called Jeannette but got her voice mail. I left her a message and I actually broke down as I told her what Slatkin had said. When she called me back, she tried to be reassuring. I made an appointment with her for acupuncture and herbal therapy. I was sure that she would disagree with the idea of hysterectomy. I assumed that we would talk then and I fully expected that we would come up with an alternative plan for my treatment, either to shrink the fibroids to enable me to have a myomectomy or to find a surgeon able to perform this procedure on me as I was.

I was so wrong! When I got to Jeannette’s office for my first visit, she made it clear that her plan was to “prepare my body for surgery.” She said to me, “If Slatkin wants you to have this, there must be a reason. He would not suggest it otherwise.” Then she went on to blame me for letting the fibroid situation “get so bad” without letting her know about it. Further, she did not want me to discuss the hysterectomy any further during my acupuncture visit. She wanted me to relax and get the most out of my treatment and not think about the impending, life altering, irreversible operation I was supposed to have.

I was baffled by Jeannette’s reaction to Slatkin’s diagnosis. It seemed so easy for all of these other people to be comfortable with the idea of my organ removal. I didn’t feel as though anyone, not Matheson, not Slatkin nor even Jeannette, was taking my discomfort with this idea into consideration. Who was advocating for me? No one was, not even me! I kept trying to talk myself into the idea of having a hysterectomy, thinking, “Well, if everyone agrees, this decision must be the correct one.” If Jeannette, an alternative healer, believed that hysterectomy was indicated in my case, it must be so. But I just couldn’t wrap my head around this idea. Me, Ms. Natural Childbirth, Ms. La Leche Mom. Me, who had resisted the idea of any surgery for so long. I couldn’t articulate, in my own words, why such a drastic, irreversible procedure was required. I just couldn’t get myself on board. I felt alone and unsupported.

So, I went home and decided to find evidence for myself that there are times when hysterectomy is necessary. I spent the next week on line Googling articles about hysterectomy. At first, I just found chat rooms of women discussing their hysterectomies, and I found definitions of different types of hysterectomies, but I couldn’t find justifiable reasons for hysterectomies. I tried many different searches and had the most luck when I searched “Hysterectomy for Fibroids.” Article after article that I read indicated that hysterectomies were over prescribed for the treatment of fibroids and that hysterectomy is only really necessary in incidences of cancer, which account for only 10% of hysterectomies performed in the US. I found no written evidence of the benefits or of the necessity of having a hysterectomy. I found only reasons not to have a hysterectomy, and lots of them.

One article provided a link to a book called "The Hysterectomy Hoax," by Dr. Stanley West. It included Dr. West’s job title, Chief of the Division of Reproductive Endocrinology and Infertility at St. Vincent’s Hospital and Medical Center, NYC. Fantastic, I thought, I had found a NY doctor who is opposed to hysterectomy! To rid women of troublesome fibroids, instead of hysterectomy, Dr. West performs myomectomies, which remove only fibroids and leave the uterus and ovaries in tact. I called St. Vincent’s and tracked Dr. West to his office. I was thrilled to learn that 1. He still saw patients, 2. He would see a new patient and 3. He would see me in a week.

The Decision
Dr. West’s office is on Madison Avenue. It’s a simple building, fancy, and his office is clean, and simple as well. His receptionists, Sondra and Lynn, were as nice in person as they had been over the phone. On a table in the waiting room, are photo albums full of pictures and letters from patients thanking Dr. West for his help. There are two huge photomontages on the walls, full of pictures of babies, prompting me to ask if Dr. West delivers babies. Sondra’s response was, “No. Those are babies that Dr. West helped his patients be able to have. He doesn’t deliver them. He just helps the mothers get pregnant.” I was seen right away, at the time of my appointment.

Dr. West himself had come into the waiting room with another patient so I saw him before I met him. He was much older than I expected, and I wondered about someone his age performing surgery safely. One thing that struck me instantly about Dr. West is that he was “like me.” His race is not obvious at first glance. There are numerous African Americans who seem in between, or biracial. My family is full of black people who look white, and Dr. West would fit right in. He could have been my father. I felt connected to him right away.

Dr. West introduced himself and led me into his office. I told him my “story” and he smiled. I knew he had heard it more than a thousand times, having read his book, and I knew he’d written my story in his book as well. After a brief conversation, he examined me, quickly and gently. Afterwards, I got dressed and we spoke again in his office. Dr. West had asked me to have the results of my MRI sent to his office, so that he would have them when I came in. He read over the report and then he drew a picture on the cover of my chart of a uterus and added fibroids. He explained how he takes each one out, leaving the uterus and the ovaries in tact. He explained how he reduces bleeding in the uterus using a special drug, and how he recycles a patient’s blood to reduce blood loss. He addressed each of the concerns Dr. Slatkin had raised against myomectomy, prompting me to ask why more doctors do not perform myomectomies. Dr. West smiled and opened his hands as if to say, “I don’t know.” “It takes more time to do this procedure,” he explained, “It takes more care. I can only do one of these a day. Other doctors can do two, three maybe four hysterectomies per day.”

We then spoke about dates and insurance. Here, I learned, was the rub. My insurance company, GHI, would not cover Dr. West’s fee for the myomectomy. He charges $15,000, and he said that they might pay one third of that. I would be responsible for the balance. I realized that I could have had a hysterectomy for free, but to keep my uterus and other parts would cost me $10,000. Is that fair? Dr. West and other authors write about this financial phenomenon. Insurance companies will pay for hysterectomies because they are quick, simple surgeries (for the surgeons,) that remove organs that can cause problems and cost money in the future. Interestingly, Dr. Lee makes the opposite argument: that removal of the uterus causes so many problems for women, that they are tied to their OBGYN’s for years afterwards, for treatment for menopause, for HRT’s and for treatments for the hosts of other problems that can develop after hysterectomy. He believed that hysterectomy is the deliberate beginning of the cash cow of continuous medical care that post-hysterectomy women provide for many doctors.

At first, looking at his calendar, Dr. West thought he was booked for the summer. Then Sondra reminded of a cancellation for August 10th. That was the original date I was given for surgery. A few days later, another patient rescheduled, And Sondra offered to move my surgery up to July 24th, my son’s birthday.

Okay. Surgery. This was really going to happen. I felt it had all been decided very quickly, and although I was grateful to not be having a hysterectomy, I wasn’t sure I was ready to submit to major surgery. I imagined trying to explain these developments to my emotionally unstable 81-year-old mother. Could I really convince everyone, my friends and family members, that the decision to have surgery with an older man whom I found on the Internet, and who was charging $10,000, was wise? It seemed crazy. I have to say that my decision to go through with the surgery was based on my gut feelings about Dr. West, and about the voice I heard as I read his book (which may very well have been the voice of his co-author, Paula Dranov.) He is so sensible, so sensitive to women’s feelings and so experienced in this field, I felt he would really take the time to remove my fibroids and save my uterus. I didn’t hear that flippant, condescending, “Why would you want to be like that?” which I’d heard from Dr. Matheson, and I wasn’t hearing that, “Well, if menopause gives you any problems, we’ll give you a little estrogen,” that I heard from Dr. Slatkin. It was the offhandedness of these two doctors when discussing my body and its future that really put me off. Dr. West, on the other hand, was respectful and serious, and at the same time reassuring. “You’ll be fine,” he told me.

The Surgery
Sondra instructed me to go to St Vincent’s for “pre-op” the day before, and then to come up to Dr. West’s office afterwards for pre-operative instructions from him.

I was late for my pre-op appointment at St. Vincent’s. When I arrived, I was sent to Room 151 on the first floor. Apparently all patients come through this room. I filled out a form, and while I was there, happily, the authorization from my insurance company arrived by fax. The woman behind the desk, orchestrating everyone’s preoperative activities, was highly competent and very friendly. When it was my turn, I was taken to the back and I met with two nurses. The first took my vitals and some blood, and then asked for a urine sample to be put into a test-tube sized vial. That was a multi-step process, but doable. Then I met with a nurse-counselor who explained what the steps would be the next day from the time I arrived at the hospital, where I would enter, what to bring, etc. through the surgery and post op. She seemed to know how Dr. West operates and warned me, for example, that I would be expected to get up and use the bathroom after the operation. The nurse was willing to answer any and all questions that I had. I felt very prepared mentally to have surgery the next day.

I stopped for lunch in Union Square and headed up to Dr. West’s office. Again, I was seen right away, although there were other patients in the office. Dr. West reviewed what his procedure would be in the morning. I told me that he would see me before the operation, and about what the anesthesiologist would do. He told me that all tubes would be removed in the operating room and that I would go to recovery with just an IV. Dr. West reiterated that he would expect me to get up and use the bathroom in the afternoon, after the surgery. I signed a contract promising to pay the fee in full, and in which Dr. West promised that I would not have a hysterectomy.

I went home in terrible rain and packed my suitcase for the hospital. Hysterically, I packed a basket full of non-perishable foods to have as snacks in case I didn’t like the hospital food. Obviously, I knew nothing about serious surgery.

The next morning, my husband dropped me at St. Vincent’s at 6:30. I wheeled my suitcase behind me, back to Room 151, which was almost empty of patients. The man behind the desk asked my name, and sent me directly to the 4th floor. “They’re waiting for you,” he said, as though I was again late. When I stepped off the elevator, a male nurse in the hallway asked my name and then led me into a room with small, curtain divided cubicles along one side. I was placed into the last one, cubicle #12. Another nurse came along and gave me a hospital gown and told me to get undressed. She came and went a few times, and returned with labels which she applied to my suitcase and to my eyeglasses case, among other things I was momentarily horrified that she was going to slap a label on my new book, but she didn’t. After I undressed, I sat in a big armchair and waited to see what would happen. Harry Potter and the Deathly Hallows happily distracted me. I think reading kept me from panicking or worrying too much. While I was in the cubicle, Dr. West stopped by to say hello and to see how I was doing. He patted my head and assured me once more that I would be fine before he walked off. A few nurses came and asked me about the last time I’d eaten and drunk. Then I met two anesthesiologists, one a resident and the other, the attending. We made friendly conversation the attending had some story to tell, but I can’t now remember the details. The resident inserted my IV. He did it without causing my pain, but he was hesitant want worked slowly. Halfway through his first attempt, he decided to switch arms. One of the strangest aspects of my surgery to me was that when it was time to go, the resident led me on foot to the OR. I somehow imagined traveling on a gurney, or at least in a wheelchair. But we walked, him in his scrubs and me in my hospital gown with a blue hairnet on my head and bare feet.

We entered a room labeled OR#2. Inside was a big, bright, cold room with a thin, metal table in the center and lots of equipment and big machines all around. There were several people inside, all dressed in scrubs and wearing silly hairnets like mine, scurrying around getting ready. They greeted me asked me to climb onto the table and to lie down. I remember thinking that I knew a lot of people that wouldn’t fit on that table. A nurse strapped me to the table so that I would not roll off. I felt like an astronaut getting into a rocket. The table had special extensions for arms and I was asked to spread mine. Someone placed a clip on my thumb to monitor my oxygen levels. Someone else placed electrodes connecting me to an EKG machine on my chest. A nurse was careful to keep as much of me as possible covered by the gown, which was now acting more like a blanket than a dress. The attending anesthesiologist told me that he was going to start the fluids that would put me to sleep. Someone put an oxygen mask on me and told me to breathe. The last thought I had was, “I’m not going to sleep yet...”

My Recovery
“We’re waiting for transport,” a female said. I repeated the statement. I tried to open my eyes. I was extremely groggy and sleepy, but I felt fine. I had absolutely no idea what time it was or where I was. I drifted off again. Next, somehow I knew I was going to be moved from a gurney to a bed and thought I should somehow help. A female voice was exclaiming something about my eyebrows and how fantastic they looked. I told her I had had them done especially for my hospital stay and asked if she had noticed my toes as well. Another nurse, Kelly, introduced herself and told me she would be taking care of me. The first nurse, who I later learned was Rose, mentioned that my husband had been waiting for me. At some point, Dr. West was standing in front of me, talking about how the surgery had gone. He said the operation had lasted 71/2 hours and that he had removed 117 fibroids. I felt terrible for him. I knew that he had expected the whole procedure to last about three hours. I was worried that Dr. West had had to work too hard. All I could think was that he must have missed his lunch. Then I realized I had missed lunch as well, and hoped I had made it to my room in time for dinner. After a while, my husband came in and kissed me. I was trying to talk. Everyone was amazed by how many fibroids I had had and how long the surgery had lasted. I had such trouble with word retrieval and thinking clearly. I kept apologizing. I remember Kelly saying, “I think you’re doing great!” I remember being grateful, so grateful to be alive.

The good thing about an IV is that you can use it as a walker to help support your weight. In my case, I also had a self-controlled morphine drip. Whenever I felt pain, I could give myself a dose of pain medication which took effect after about five minutes. Dr. West told me that few of his patients experienced pain after surgery, but I, apparently, was an exception. I felt plenty of pain, from the incision, from the battering my body had suffered, and from the gas and liquids that were left in the abdomen. That first evening, I was able to get up out of bed, with tremendous difficulty, and go to the bathroom. Unfortunately, I was not able to use the toilet. I felt the urge, but nothing came out. I later learned from Dr. West that this is normal after anesthesia because all of the muscles are so relaxed. The attending physician told me that because of this, Dr. West ordered my catheter to be replaced for the night. I was resistant and was very afraid that it would hurt. To tell the truth, I didn’t feel it at all, and the relief it brought was worth it.

One aspect of the surgery that I hadn’t anticipated was oozing from the wound. Each time I tried to move, to get up or just turn to one side, a slightly bloody substance would flood my gown and my bedding. I had to be cleaned and changed three times during that first night. Everyone assured me that this was normal because of all of the fluids left in the abdominal cavity, but I couldn’t see how this was a good thing. After the third flooding, a different attending, a young, soft-spoken African American woman doctor taped my belly up tight to stop the oozing.

Another aspect of surgery that I hadn’t anticipated is that surgical patients cannot have food after surgery. This seemed particularly unfair to me as pre-surgical patients aren’t allowed to eat either, and I felt very, very hungry. When I asked for my dinner tray, the attending was brave enough to tell me that Dr. West had not ordered a dinner tray for me meaning that I couldn’t have any food unless he “changed the order.” I was furious and starving, and felt that I couldn’t possibly begin to recover without nourishment. Fortunately I was so sleepy that I was able to sleep and hoped that I would be allowed breakfast.

The best part of my hospital experience was my roommate, whom I will call Lily. I remembered hearing Lily’s voice before surgery. She was in cubicle #11. Then, she was my roommate in Room 931 after surgery. Lily had had the same procedure as I had, but with a different doctor. We seemed to have so much in common. Lily is also a 3rd grade teacher. Lily had 29 fibroids removed. We were close in age. In the hospital, as we were recovering, we did everything together. We compared our urine output, noting the number of cc's each time. We competed for the lowest blood pressure each time our vitals were checked, which was every four hours or so. We encouraged each other to sit up in bed or to get up and sit in a chair. We each had the exact same reaction the first time we tried it: instant nausea and dizziness. We both had painful gas, and we were both reluctant to take pain meds. We would tend to sleep at the same time, in two to four hour blocks. Once, we both woke up at 2am and walked together to look at the newborn babies in the nursery. We watched this rough old nurse change a baby and were horrified. Lily learned how to use the staff kitchen and brought me tea one morning when breakfast was late. Lily walked more than I did, and she got to eat solid foods before me but I ate more, once I was allowed, and I peed more than she did. And I had way more fibroids.

Lily and I were both discharged on Thursday, two days after our procedures. My husband and daughter arrived at 9:30 to pick me up. Dr. West stopped by to check on me and met them. I was dressed and packed and ready. Lily’s husband was coming at 11. I hugged her goodbye and promised to keep in touch.

Back at Home
It felt wonderful to be home. It was so quiet, and peaceful after the busy bustling hospital and Lily’s TV constantly on. With fans gently blowing, my bedroom was cool and inviting. At first I was nervous about cooking for myself, climbing the stairs to my bedroom, and dealing with pain if I had it. But quickly, I felt healthier at home, and psychologically less like a helpless patient. The stairs were no problem at all.

My abdomen was bigger then than it had been before the surgery and it was still oozing liquids. I couldn’t see me feet or my wound. Dr. West assured me that over time, it would get smaller and that the oozing would stop. Everything around there still hurt, and it was hard to get into and out of bed, and harder still to turn from side to side. My worst fear was my impending first bowel movement. I hoped everything inside there still worked correctly. I had overheard Lily’s doctor tell her that the bowel was the last organ to recover from surgery. Dr. West had told me that once I passed gas through the rectum, I could eat anything I wanted. Within a day, that was happening regularly, and when the “event” happened, it wasn’t too painful, and I felt much better afterwards.

Each day after surgery, I felt stronger and more able to move around. I remember being able to focus well enough to read after a few days. I finished Harry Potter. I remember being able to sit cross-legged on a chair or a bench. I remember being able to sleep on my side, which was a huge relief. I remember not needing a nap anymore in the middle of the day after a week or so. I got to shower on Saturday, four days after the operation. That was the first day I saw myself in the mirror and was horrified that my whole abdomen was purple. (That prompted a late night call to Dr. West who had to explain the discoloration to me and assure me that it was normal.) I drove on Sunday, five days after surgery. I rode the subway the next day, to see Dr. West, walking in baby steps like a really old person and terrified that someone would bump into me and rupture my internal sutures. On day 8, I went to the beach with a dear friend and got a sunburn. On day 10 I went back to the beach and Dr. West gave me permission to go into the water. I waded all the way in and cooled off in the salty, healing water.

Since my surgery, I have continued to read everything I find related to fibroid removal. I know that there are several newer techniques for removing them, but I doubt I would have been a candidate for any of them. I feel that myomectoy was the correct choice for me. My fear is that the fibroids will grow back again. I know of several younger women whose fibroids have grown back after five to seven years. Because of my age and my proximity to menopause, Dr. West is not worried about this. Jeannette says that if I continue my acupuncture treatments and taking my herbs, she’ll make sure that they don’t grow back.

Given the size of my uterus and the number of fibroids I had, I feel grateful to have found a doctor like Dr. West who respects women and their bodies enough to take the extra time necessary to relieve their symptoms without removing their female organs. (Can you imagine the reactions of men if doctors suggested removal of their penises and testicles to treat a benign medical condition because they are done fathering children? It would never happen!) My goal is to get the word out to women all over the world, but especially in the United States, that hysterectomies are over prescribed and are often unnecessary. Women need to have access to current and relevant information for their health concerns. I plan to post as much information as I can find here on this blog, and hope that it is accessible and helpful to women who need information, help and support.

14 comments:

BBR said...

Wow, Jen. This is an amazing account and I am sure that it will help other women who face the same decision and the same obstacles you faced.

oxox
Bev

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Beverly said...

"Still, I decided to revisit Matheson last summer to talk again about surgery. When I finally saw him, he rescinded the invitation for fibroid removal and instead suggested a hysterectomy. I asked him why he couldn’t just remove the fibroids and he said that they were too big, and what did I need my uterus for anyway, at my age? I feebly replied something about the importance of those organs. As if striking a deal, he offered to leave my ovaries in tact, if I wanted them. I thanked him, and I told him again I would think about surgery and left."

I have no idea if you're still checking your blog: but I had the SAME EXPERIENCE with Donald Matheson!!! I couldn't believe my eyes!

He was recommended to me by a "feminist health counselor" (that was a wasted $275!). I saw him when I was 44, with large fibroids, and he proposed a myomectomy. BUT when I went back the next year, after examining me and declaring that they "haven't changed," he changed his tune. He said, "I wouldn't do a myomectomy on you for a MILLION BUCKS. You have to have a hysterectomy." And he went on to say that, since I wasn't likely to have kids anyway, what difference would it make?

BTW, it's 8 years later, and I'm still having my periods. Had I met a fellow I wanted to marry in the interim, and had I followed Matheson's advice [bullying], I would have been robbed of the chance to have a child.

When I asked Matheson why he refused to do a myomectomy on me at age 45 that he'd recommended at age 44, he started scribbling furiously on his clipboard and refused to meet my eyes, as he told me that he'd seen women who'd "had myomectomies done in Queens or New Jersey who were butchered; I had to reoperate to fix them up," etc.

None of which answered the real question, which is why ONLY women younger than a doctor-designated age are worthy of preserving their female parts. It also skirted the point that, presumably, he would be the one to do the "butchering."

Anyway. It wasn't you; it wasn't me; it was Matheson, the sexist/ageist jerk.
--Gail

Jennifer A. said...

Hi Jennifer,
I was lucky enough to read about your myomectomy through a google search. I really loved your story, it is truly amazing and I think Dr. West is a true hero. I hope you are doing well!
I read (and re-read) Dr. West's book too. I live in the Dallas suburbs. Dr. West pointed out that hysterectomy rates are the highest in the south, and it is so true. My ob/gyn recommended a hysterectomy for my adenomyosis, but so far I have resisted. I wish I could afford to see Dr. West, since I know he does offer other options for this condition, but I know it is just too expensive for me since I am out of state. I have searched for months within the Dallas area for a Dr. with even a fraction of Dr. West's experience but I don't think that his skill set is easy to find. All the innovation seems to be on the East coast. But I will not give up!
All the Moms in my area seem stunned that I don't want the hysterectomy, many would actually appreciate their doctors suggesting one. I really liked reading your story and knowing I am not completely alone. Thanks so much!!
Jennifer Azzelio

kelewele said...

Thank you for sharing your story. I just had an examination that showed fibroids. Now I'm waiting for the next step. I appreciate you taking the time to show women that they do have options. K

Pamela Iloegbunam said...
This comment has been removed by the author.
Stephanie Holz said...

did they grow back?

Stephanie Holz said...

did they grow back?

Nicole the Lady Buddha said...

Thanks for sharing your story!

tsizzle said...

Wow what a great story. I'm day 3 out of myomectomy surgery. I was blessed to have a nurse yes a nurse explain my options. She stated that hysterectomies are overly prescribed. She also found my doctor for me. It was a tough decision to make. I mean this is major abdominal surgery! I am amazed at how quick doctors usually are to not even discuss options. Never ever accept the first option displayed to you. Do your research.. a college degree isn't a basis for a good doctor! Now back to my surgery. I wouldn't do anything different. I'm glad I had this procedure. Has been hard and painful.. yes. But all of me is still in there. It is my uterus and I wanted to keep it whether or not I decided to have children. I was born with it. By the way I was misdiagnosed with endometriosis by the first doctor.. she stated my only option was a hysterectomy. So my advice is be your own advocate. It is your body. Never accept the first option. There are drs. And nurses who do care about your well being. Some only care about money. Take your time.discuss with your family. And make your decision based on what you want and need.

Focused said...

Thank you so much for posting this. I am 29 and going in for a myomectomy on 8/15. So I am searching for everything that I can find about the surgery. I loved reading your story nearly 7 years later.

MELISSA said...

I WAS FORTUNATE ENOUGH NOT TO LISTEN TO A DR APPELBAUM FROM NSLIJ, AND HER COLLEAGUES WHO WITH THEIR VAST EXPERIENCE AND BEING FEMALES SAID THAT I HAD CANCER AND NEEDED A HYSTERECTOMY!! AT AGE 46, WITH NO CHILDREN, NO BIOPSY, I WAS BULLIED, TO BELIEVE THIS WAS NECESSARY. AFTER A DAY OF TEARS, I PULLED MYSELF TOGETHER TO GET MY OWN DR FOR A REAL SECOND OPINION, THE GROUP OF DR'S KIND ENOUGH TO GIVE ME 5 SECOND OPINIONS, WERE NOT MY CHOSEN DR'S. FORTUNATELY I FOUND DR STANLEY T. WEST, WITH HIS HYSTERECTOMY HOAX BOOK, AND PERFORMING OVER 60 MYOMECTOMIES THE PREVIOUS YEAR, I WENT TO HIM. I HAD A SUCCESSFUL SURGERY, NO COMPLICATIONS, ( I WAS A BIT DROWSY FROM THE PATIENT CONTROLLED ANESTHESIA ) BUT I AM FINE TO THIS DAY!
I HIGHLY RECOMMEND DR WEST, HE IS AN EXCEPTIONAL SURGEON!
WHEN GOING TO ANY DR, ALWAYS RESEARCH THEM, AND DO WHAT IS RIGHT FOR YOU.
UNFORTUNATELY, MYOMECTOMIES ARE LONG SURGERIES, WHEREAS A DR CAN PERFORM A HYSTERECTOMY IN LESS THAN AN HOUR AND GET PAID MORE.

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Unknown said...

Thank you for writing this. I am a jersey girl living in AZ. Six years ago at the age of 42, I was experiencing heavy bleeding from 9 fibroids that I was carrying around. My Dr offered a hysterectomy, I had a read books on other options but she told me I was not a candidate for any if them. I sought a second opinion and again, hysterectomy. I asked about a mymomectimy but was told I was too old. Long story short, I went to an interventionalready radiologist who did a uterine fibroid embolization and saved my life.

Fast forward to 2016. Now 48, my periods are changing, getting heavy again. Dr pressed against for a hysterectomy. ..said I was LOADED again with fibroids. Went for a second opinion and had an ultrasound done. I am left with 3 fibroids all of which are calcifued, meaning they no longer have a blood supply. I asked for a mymomectomy but again, am told I am too old. All I want to do is get to a natural menopause but the doctors out there do not want to help women. I am lost for what to do at this point. But your story renews my hope.