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|National Uterine Fibroids Foundation|
|Incredible Things Doctors Say...|
Thank you for visiting the uterinefibroids website. It is truly important that women have the opportunity to share their experiences with uterine fibroids with other women. And, it's even more important that women have the opportunity to read about more than just my story. Won't you please share your story?
Feel free to Add to the Share Your Story page.
Lise Cloutier-Steele, a good friend of mine from Canada, has recently written a book entitled Misinformed Consent which contains the intensely personal hysterectomy stories of over a dozen women. For more information about this book, check out Lise's new website: Misinformed Consent.
My Story by Susan
I'm 51. I found relief from excessive menstrual flow with vitex (chasteberry) herb. I'm not menopausal, yet. I have cycles, 2 last year over 40 days, but most about 24 days apart. I've heard a woman isn't considered menopausal until they've gone without cycles for 6 months. I took provera for a year (August 1998-July 1999). Haven't taken any estrogen. (Except bc pills way back. Had tubes tied in 1986.) I take daily, every morning, 2 capsules 500 mg Vitex, GNC brand, 2 capsules echinicea 400 mg each, a multi-vitamin, and .125 mg synthroid, which I have been taking for 30 years, due to a pituitary insufficiency.
I read Fibroids, The Complete Guide for Taking Charge of Your Physical, Emotional and Physical Well Being by Joanna Skilling last year. Has lots of good ideas. I subscribed to Dr. Christiane Northrup's newsletter for a year around 1996. Read her book, Women's Bodies, Women's Wisdom.
I first heard about a fibroid 16 years ago, about 1984. The family doctor told me about it and offered a hysterectomy. I had 2 young children and ideas of more, and the offer upset me, that he would offer that, not that I was upset that I had a fibroid, although I didn't know much about it. I don't remember doing any particular research at the time (may have), but I changed family doctors. When I was pregnant the last time, 1986, I asked the obstetrician about the fibroid. I can't remember if he even commented about it. He wasn't concerned about it. Anyway raising 3 kids I saw the family doctor at least annually, but would have to go to Lawton for a gynecologist. I didn't go. I can't remember when the heavy flows started, for sure by 1990, but didn't think about it being a problem a gynecologist could help. Most often I deal with problems by trying to handle it myself anyway.
Sometime in June 1998 I went for check-up to renew my synthroid prescription. The doctor reminded me I needed a gyn exam (at my age, 48 then), so I scheduled that. He makes a big deal about size of fibroid and tries to make me feel like I have cancer. Well, my gut instinct said I didn't have cancer. I had regular (tho heavy) cycles, and no pain. I went to the library and checked out 5 books on gynecology, fibroids, menopause, and hysterectomy.
Anyway, the doctor would have sent me off to Oklahoma City immediately, but would offer a sonogram first. Well the sonogram showed the fibroid, but didn't show the ovaries clearly. They still wanted to yank it all out because the ovaries are hiding. So the doctor schedules me to see a gynecologist in Lawton (SW Oklahoma), a 90 mile drive from here. I think, okay, maybe this woman gynecologist can talk turkey with me. She wouldn't discuss any options, and when I left I saw she had the bill coded for "surgical menopause." That was it. I wasn't going back to her. Anyway, she did give me some iron tablets, as I was very anemic.
I kept reading at the library, and did a lot of research on the internet about fibroids. I filled two fat notebooks with printouts. I asked friends about finding a doctor that would listen to me. Found a doctor nearby, not associated with the first doctor. (Between the first doctor appointment and second doctor I had two cycles 16 days apart. Another experience: August 1998, padded and tamponed I drove to a drugstore 45 miles away with my youngest son. By the time I reached the parking lot, I had flooded. Pulled down t-shirt over my dark slacks and headed to the rest-room.) Doctor #2 wrote a prescription for provera, 5 mg, 1 daily days 14 through 24. It helped. I kept researching. I also asked for copies of the sonogram records, and medical records back to 1982. Doctor #2 sent me to woman gynecologist in Oklahoma City. She offers myomectomy, but I'm leery of that because she said there could be a lot of blood loss and couldn't guarantee that it wouldn't turn into a hysterectomy. Kept appointments with gynecologist #2 every 6 months. I kept track of cycles on a calendar and gave the doctors a copy of the calendar. Last appointment, in August 2000, they said, come back in a year, slight reduction in fibroid size.
To back up a little, June 1999 the research I had accumulated made vitex agnus-castus or chasteberry sound very good to try. I looked for it at the local GNC. The first month of it made such a difference in the next cycle. I told the family doctor, I would drop the provera and continue with the vitex and gave him information on the vitex. He wasn't too sure about that, but the last appointment he seemed pleased with my choices. I had read about provera changing good cholesterol/bad cholesterol and since heart problems run in my family I didn't want to mess with it any longer. I've been real happy with the vitex. When I read the book by Joanna Skilling, I added the herb echinicea, which I had took occasionally for colds.
In the almost two and half years since, I have bought other herbs and supplements, but didn't take any consistently, while I've taken vitex consistently. It made sense to try one thing at a time and I didn't want to stop taking vitex. Vitex is a normalizer of hormones. Echinicea supports healthy immune function and promotes general well-being.
Sometimes it's difficult to ask questions and share with a stranger personal female problems. And then again, sometimes it is a little easier than talking to neighbors, friends and family about it, depending on their experience. Some women I've had good rapport with, had already had hysterectomies and didn't see my need to object to that. I subscribed to the Hotflash (peri- and menopause) list from Feb 1998 to October 1999.
My Story by Sara
I found out I had several fibroids when I became pregnant last February (2000). I had no idea they were in there! Fortunately, the pregnancy miscarried; my uterus wouldn't have supported a pregnancy in the condition it was in. After recovering from a D&C, my OB/GYN ordered several diagnostic procedures including a sonogram and a CAT scan to determine location, number and size of the fibroids. He suggested a myomectomy, as I am 31 years old and have no children-I definitely wanted to preserve my uterus! Of course I was scared -- afraid I'd lose my uterus and my fertility. My doctor was very understanding and patient. He answered all my questions (no matter how "silly") and reassured me that he had done "hundreds" of myomectomies. I was told the only way he'd do a hysterectomy would be if he had to to save my life (this is possible due to the "bloodiness" of this type of surgery).
So, feeling confident, I proceeded with surgery where my doctor removed 2 grapefruit-sized fibroids and 5 golf ball-sized fibroids! He jokingly asked later if my stomach seemed nice and flat now (I'm fairly thin and even with 2 huge tumors had a flat stomach to begin with). After the surgery, which was quite painful but tolerable, I was told my problem would definitely recur as my doctor said there were several tiny fibroids beginning. But the uterus will only tolerate so much cutting. After a 3-day hospital stay, I went home to heal. After 6 months of healing, my Dr. ordered a "hysterosalpingogram" which is an uncomfortable procedure allowing techs to view (through x-ray) the shape of the uterus and condition of the fallopian tubes (to see if they are open). This can determine if there were any adhesions or scarring. The report came back a "thumbs-up" to try to conceive. As of December 2000, my husband and I have been trying (2 months) and my doctor said I shouldn't experience any trouble conceiving -- after all, the fibroids didn't stop conception last time! The only thing he said was that I'd have to deliver via cesarean. Now my concern is, if I want 2 children can my uterus survive a second myomectomy? I haven't asked my doctor about this (he says to cross that bridge when I come to it) and can't find any info of women who've had 2 myomectomies. Also, if I'm faced with a decision to have a hysterectomy, should I? My doctor is the type to make a recommendation but let the patient make her own decision.
Women out there facing these issues, get second, third, or even fourth opinions until you find a doctor you have confidence in. Don't be intimidated to ask questions and if the doctor acts like your questions are stupid or silly, thank him and get up and leave!!! Find a doctor who is willing to help you make the decision that is right for you without pressuring you to do what he thinks you should do. And, SCREW THE INSURANCE COMPANIES! I had crappy insurance and my doctor said "not to worry" about it -- we'd take care of me first and work out the payments later. Lots of luck to all who are facing these choices!
My Story by Tawanda
My story starts after spending 19 months without health insurance I decided to get my health checkups in order once I got my new position in 3/96. This included physicals, dental visits, pelvic exams and alternative therapies.
At my second standard pelvic exam since the starting of my new position in 1997 the nurse practitioner noticed that my abdomen was distended. I remarked "oh, yeah", I've been having a lot of gas lately. She ordered a sono which came back with a finding of fibroids. I then met with the nurse practitioner and a male gynecologist who wanted to know if I was having any problems and if I was conducive to a hysterectomy. After responding no to both questions he recommended we watch and wait, but wanted me to make an appointment with a surgeon.
While not knowing anything about fibroids, hysterectomies, or myomectomies - I knew that I would better be able to retain my health by retaining my organs. So I would wait for open season and change my health option from HMO to PPO and strike out on my own for a doctor who could do a myomectomy.
My sister recommended a female doctor, Dr. M., who I met with in Jan 1998. At this initial meeting I brought along my bloodwork and radiological findings report from the HMO. I explained that I had fibroids and I was not in any pain, bleeding, or having irregular periods. I explained I did not want a hysterectomy, but wanted a myomectomy instead. She proceeded with a pelvic exam, and ordered a sono and MRI.
In spite of also giving the HMO findings to the staff that performed the sono, they came back with a finding of no fibroids, my uterus was of normal size with a mass outside of it. Since this was in direct contradiction to the HMO report, I inquired whether Dr. M. was sure of these findings. She replied "that's what they said". The MRI came back with a finding of fibroids, but deferred to the sono on the location (outside of uterus).
So at the end of January 1998, I find myself being asked to sign a myomectomy consent form - the surprising thing is that it made references to performing a hysterectomy in the evident of. I was surprised at finding these references and asked the doctor if there was a reason I would have to have a hysterectomy? Dr. M. started shaking her head and waving her hands no,no,no (but because of my hesitation) she wrote on the consent form "Not likely that uterus will even be invaded by wounds because of the preoperative sono and MRI reports.
Of course this provided me relief and reassurance, and I signed consent form and prepared for surgery. The scheduled date was 2/6/98, and the length of surgery extended to 1 hour. I awoke to be told that I had indeed been given a hysterectomy by my niece. I had an incision running up and down my abdomen instead of across my lower abdomen like we had discussed when Dr. M recommended having a tummy tuck, so the plastic surgeon would go in after her.
In the end Dr. M. claimed the fibroids had eaten up the uterus and there was no uterus left to save, so I lost my uterus, right ovary, and cervix in 1 hour. The pathology report revealed that there was nothing abnormal about my uterus other than its enlargement.
It has been a tortuous struggle since the surgery to maintain any semblance of myself and life. Besides finding myself sterile at the age of 35 (with no children), I also find myself sexually dysfunctional, horribly violated, and trapped inside a body unable to function on its own. I live in terror as I try to avoid inflicting additional harm via drug therapy for the many symptoms resulting from the imbalances created in my entire endocrine system. I have not been able to continue my education that I was pursuing directly before surgery and all my financial resources have gone into making me feel as comfortable as possible without drugs.
The question that I can't help but continue to ask is "What did I do to Dr. M. to deserve this?" Don't women have a right to decide what treatment they are willing to live with?
Dr. M. handled me masterfully and told me everything I needed to hear in order to agree to surgery - I think any gynecologist skilled in the surgical procedure of myomectomy would have been able to spare all my reproductive organs, I believe this same physician would have reconciled the radiological findings, and would have done extensive pre-operative work so that apparently incorrect radiological findings were not relied on. Because of her lack of correct pre-op work and intent to do a hysterectomy - I was not able to get the treatment I desired, the treatment Dr. M. agreed to, or the treatment that would have left my body with the ability to maintain normal hormonal levels and communication between endocrine system for my age.
My Story by Sonja
I am 29 and have just recently been diagnosed. They have only done the invitro ultra sound to look at it and say it's 5 by 5 and that because of its location it could only be removed via hysterectomy,which totally scares me. My symptoms are back pain, little or no period, and breast pain and swelling. Anyway I'm still researching, praying and trying to decide what to do. Thanks for the website with all the info.
My Story by Debi
I was diagnosed about 7 years ago with fibroids. I lived in Greensboro, North Carolina at the time and, then, moved to upstate NY. I saw a gyn there who, initially, strongly suggested I have Lupron Depot shots for 6 months. She told me that this treatment would shrink the fibroids "permanently" and there was little side effect.
Fortunately, I worked in a doctor's office and a nurse looked up Lupron Depot and we discovered that there are many side effects and quite damaging ones, at that. Also, I learned that the fibroids grow back after that sort of treatment. I chose not to do anything.
Let me add here that I do not have any symptoms that I notice. I am active - walk regularly. I do a lot of volunteer work - one special focus is therapeutic horsemanship for the disabled. I have not been -- never been unable to do whatever I want due to the fibroids. I still have regular periods, although they may be a bit heavier, still lasts about 7 days - only 3 of which are that bit heavier. I do notice that if I do heavy lifting (we have moved back to NC and I also helped my daughter move), that will bring on a period. I have no back pain or more frequent than normal urination. Now, there may be things that I have grown accustomed to but nothing has "debilitated" me in any way. The only thing I've had to deal with is that I am slim (5'7" and 135 lb) and my abdomen sticks out due to the fibroid which caused me to deal with my ego more than anything else.
Two 6 month checkups later with the same doctor, she told me that I had only two choices - the Lupron Depot or hysterectomy. She said that she, too, had large fibroids that she ignored and she hemorrhaged in a very embarrassing situation and had to have emergency surgery. Of course, that scared me to death. I wouldn't lift an orange for a while until I got mad! I sought another opinion from a doctor highly recommended by the staff at the office I worked at. He totally disagreed with the Lupron Depot and said that with my lack of symptoms, watchful waiting was OK with him.
Well, as I said above, I have moved back to Raleigh, NC, and found a doctor who I felt by the literature in the waiting room and examining rooms that she was along my lines of thinking. I am VERY in favor of alternative methods of healing and encouraging our bodies to work for their own good - or at least giving that a fighting chance. I met with her PA, who was wonderful at the checkup. She suggested that I see the doctor because my fibroids were so big and that the dr. would do an ultrasound at that visit. Well, the doctor examined me and asked me to get dressed so we could talk. When she came back in, she told me that my fibroids were so big that they fill my whole pelvic cavity and that she can not examine my ovaries so doing a pelvic exam is useless. She recommends a hysterectomy. Just like that!!! I am 47 years old and I assume somewhat close to menopause at which time these should shrink back - I assume that they won't disappear.
I keep feeling like there's another answer! The doctor here that told me I needed a hysterectomy said she has sent patients to Chapel Hill to have UFE and now she is dealing with them having significant amounts of pain.
I emailed a doctor I had an article about who is an MD and does a very minor-invasive form of hysterectomy (C*I*S*H - Dr. Paul Vietz). I sent him my ultrasound reports and he verified that he felt I should have a hysterectomy because of size. I feel very much at a disadvantage because I am new here, I do not work so I am not presently in contact with a lot of people to get recommendations. I have a call in to a holistic doctor that my husband saw when he first moved down here. In conversation, she told him that she also has large fibroids and she is "watchfully waiting". I am hoping that she can provide me some guidance.
I am aggravated that this decision for a hysterectomy was jumped on. The last ultrasound I had was just before my period - things do seem "bigger" before that time and probably for a day or two I notice I may have to urinate more often. Once my period is over, things seem to "recede". I don't know if that would make a difference with the ultrasound.
My Story by Patty
I first discovered that I had fibroids 3 years ago. I had been in a head-on collision and had a cat scan done of my abdomen which stated that I had a "2 cm leiomyoma in the dome of the uterus." I had no idea what a fibroid was and at that time was symptom free. I had periodic ultrasounds and every time there would be more fibroids. Last year, I started becoming symptomatic, first with bowel problems and then with back pain. I had also started trying to get pregnant. My doctor felt my fibroids were not affecting my fertility, so I tried for 8 cycles unsuccessfully. All the while my back and bowel problems got worse and worse. I finally asked how much discomfort I needed to be in before I had them removed and my doctor suddenly changed from the "wait and see" approach to "let's take them out." It was such a relief to know that I could finally have a myomectomy. I finally had really good insurance and I knew my doctor was an excellent surgeon, so I was never worried about the procedure itself.
My Story by Ginny
Thank all of you for sharing your stories - it is incredible to have persons willing to do this in order to support and assist others with fibroids. I was diagnosed with a small (walnut-sized) fibroid when I was about 30. Being a nurse, I freaked out thinking that it could be cancer and that I didn't want anything foreign in my body. It is a pedunculated subserosal, meaning it is on the outside of my uterus. I was told the same thing that most everyone is told at one time or another - that I should have it out right away. I was asymptomatic and planned to have children in the future. I was again told that it would be doubtful if I would be able to carry a pregnancy to term. I canceled the myomectomy in part because I didn't want to have any type of surgical procedure. In other parts because I had done some research and had also been seeing a naturopathic physician (I lived in Seattle at the time). Although I decided on the "watch and wait" approach, I was really unable to keep up with the dietary recommendations of being vegetarian, etc. When I was 36 I became pregnant very easily but my fibroid grew to the size of a grapefruit.
My Story by Doddie
Diagnosed at 26 with fibroid. Had Myomectomy. No problems since. Did a lot of research before the surgery so I knew what surgery I was going to have and wasn't going to have. Had a wonderful fertility doctor/surgeon. There was a family history of fibroids and everyone else opted and had a hysterectomy. Not me as I hadn't had any kids and I knew there had to be another option. My relative had just had a ten pound fibroid removed along with her uterus five months prior to my diagnosis. Had numerous problems with mine; back pain, severe muscle spasm, nausea, bloating, clotting extended cycles. Took it for almost 9 months until I had to go into emergency because of the pain. The surgery was still put off for two months.
Meds taken were motrin--which can worsen bleeding, codeine--which irritates the stomach, antispasmodic meds, and numerous over the counter meds to help with reactions to other meds. And all this pain for a fibroid that was only half the size of a small lemon. I was awake for the surgery (epidural). The little "gremlin" as I call it just popped out when he cut my uterus open. RELIEF! Walked out of the hospital 3 days later. But still I did more research as not to have a recurrence.
A lot of people said "oh you should have just let them take out everything and went on with your life." I was in shock at the comments I received. Even one of the nurses before surgery was harassing me to sign a waiver for a full hysterectomy so she wouldn't be bothered with waiting for me to come back out of surgery if they found out they couldn't save my organs. I was so thankful the doctor was sitting listening just off in the distance of the prep room. He told the nurse "...a patient doesn't have to sign anything they don't want to and she is not having a hysterectomy and you have no right to upset her before surgery she is my patient and we have discussed and decided on a myomectomy." Yes, all the love to the doctor.
Anyway to make a long story short, I commend you on sticking to your guns, so to speak, and in making your own medical decision. I will forward web sites that I've found to you at a later date. I've been compiling my own history file for myself and for sharing with others so they don't get blindsided by the in and out surgeons (hysterectomy only group). One book I found very useful for helping me get rid of the hormones in my diet which I feel contributed to my fibroids coming out of slumber was "The Hundredth Woman.". You can also check the Oprah Winfrey show archives she had a whole segment of female problems that gave a lot of wonder links.
Thanks for you further information and support to women. Knowledge is the key. If you don't know your own body how can you think anyone else will?
My Story by Mary
Just after my 40th birthday, during a routine (albeit long overdue) pelvic exam, I was diagnosed with uterine fibroids. My doctor sent me for an MRI, which revealed that I had 3 fibroids, two of them rather large. My uterus is the size of an 18-week pregnancy.
More disturbing to my doctor was a statement in the radiologist's report which said that one of the larger fibroids is degenerating, and that it could not be determined if it was "hyaline, cystic or sarcomatous" and that "cancer could not be ruled out." My doctor called me right away to recommend surgery; I thought she just meant to remove the fibroids themselves, but to my horror, she meant a hysterectomy.
On further discussion, she told me she didn't consider me a candidate for myomectomy because my fibroids were so large "there wouldn't be enough left of my uterus to put it back together." I'd done my homework and had found that the odds of a woman my age having cancer of this type were extremely small, but when I told her what I had learned, she remained unimpressed and said that although I could choose NOT to have the hysterectomy, she was merely advising me on what a prudent person would do. To her credit, she did give me a referral to an oncologist/gynecologist at Yale-New Haven Hospital. I will be seeing the second doctor in a few days.
On another front, I did get some good news. My doctor sent me for an ultrasound on my kidneys to see if the fibroids were causing hydronephrosis. To my relief, the tech told me she didn't see any dilation in the kidneys. My doctor hasn't called, and since I know she's not shy about delivering bad news, I'm assuming that I'm OK in this area.
Aside from a slightly heavier flow on days 2 & 3 of my period, I'm pretty much asymptomatic. If I could only get this cancer thing resolved, I'd be content with just leaving my body as it is. The frightening thing is I don't know how to get cancer ruled out. I asked my gynecologist about the possibility of some sort of nonsurgical biopsy, but she said it couldn't be done for this type of thing. She made it sound like the only way to tell for sure if this is cancer is to open me up and take it out. I am haunted by the thought that it's probable that if I consent to a hysterectomy, it will turn out I don't have cancer, and I'll have lost my uterus for no good reason. I will never get over it if I let that happen.
My mother is trying to be supportive and non-smothering, but when I tell her the latest thing that I've found that says this is unlikely to be cancerous, she just gets nervous and says "But what if it is?" She had her own brush with cancer almost 20 years ago (breast cancer) so the very word resonates with her. I can't make her understand this isn't the same circumstance at all. She doesn't want me to risk death. Heck, *I* don't want to risk death, either. I just don't think that I'm doing that by refusing surgery.
I don't know if any of you out there reading this can help me, but it does make me feel a little better to put this out in a forum of people who've been through something like this. Thank you.
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This page last updated Saturday, February 02, 2002