Submitted by Kathy Davies

July 1997

I am currently 8 1/2 weeks post-hysterectomy with BSO (both ovaries and tubes removed). I wanted to share some of my experience.

A few years ago I went on a six-month treatment of Lupron, which causes temporary menopause, as a treatment for endometriosis. After one month of Lupron with no estrogen replacement I was having several 10-minute long hot flashes every hour, woke up often in the night with hot flashes, became suddenly angry for no apparent reason, alternately wanted to laugh, cry, cuddle or kill my cat, etc. Two days after taking Estrace I felt better emotionally than I'd ever felt before! As a result of this experience I went on estrogen replacement immediately out of surgery. (I have no history of breast cancer in my family, so this was not a worry for me.)

Probably as a result of the estrogen, I have not had many of the annoying symptoms of menopause such as hot flashes, anger, etc. (There is a list of the most common menopause symptoms). The only ones that plague me a bit are what I call "word losses" (I forget words, mostly nouns) and I'm more insecure and sensitive than I used to be. I don't consider the problems to be severe, but I don't know if or when they will get better, either. Mostly, I would call this a positive experience because some of these types of changes are to be expected with the change in estrogen level, the loss of the reproductive organs, etc. I haven't gone through the mourning [of the ability to bear children] as some do, possibly because I have been expecting to have this surgery and not to be able to bear children for several years. I scheduled my surgery 4 months in advance and used the time to prepare myself for the loss.

Five weeks after surgery, I started a very simple strength training program put together by Dr. Miriam Nelson, discussed in her book "Strong Women Stay Young." I began with no weights and have been adding 2 lbs. every week. I have been surprised by how quickly my strength has returned. I found myself able to lift and carry 10-15 lbs without really thinking about it, where a week before I couldn't lift 10 lbs.

Six and a half weeks after surgery I went hiking in Utah and, other than having to stop and catch my breath more often than the others on the hike, I kept up with them quite well. A year ago I went on a much easier hike and had a great deal of trouble; I tired at least as easily, although I wasn't recovering from surgery, and I had pain in my abdomen and diaphragm very early in the hike. I think the surgery and the exercise made the difference.

I attribute some of the success here to the support of my husband and family and to the women I have corresponded with via email and listservs who have had this surgery and were willing to share their experiences with me. Knowing that what I was going through was normal helped me to be patient and give myself time to heal. When I had pain I didn't understand or thought I was too tired or not healing fast enough it helped a great deal to know that I could turn to someone who had been there and could tell me from her own experience that my experience was not abnormal.

I have more healing to do and am wondering if I will have any changes in my emotional state, but I am very pleased at my progress so far. I can finally make plans and fully expect to carry them out! I haven't been able to do that in 5 years! I no longer have to check the calendar before making an appointment (to be sure it isn't *that* week!) I can expect to continue getting stronger and healthier as my body becomes accustom to itself again and I expect to be able to be more active. I am already as active as I was before surgery (not that I was very active!) I find myself already more outgoing and more interested in people. I am able to consider committing myself to my friends and my church because I feel I will be able to meet those commitments.

I encourage any woman contemplating surgery, or looking for alternatives to surgery to research her problem as thoroughly as possible, to contact other women who have had the same problems and have tried different remedies, and to do what she feels in her heart to be best. When we have the information we need, we truly are the only ones who can make the decision that is right for us. Just because a doctor says it doesn't make it true! And just because it worked for one woman, or for most women, doesn't mean it will work for you!

At Beth's request, I am posting my very positive hysterectomy experience. Some of you may have read this before. In a word, it was a Miracle! I was 49 with 3 children. I had been been bleeding continuously for 3 months, with only a couple of dry days. I have, over the past 4 years, had several severe and uncontrollable hemorrhages, which had been increasing in frequency and duration. I started making the rounds of doctors in late December. I was diagnosed with a huge fibroid and uterus the size of a 20-week pregnancy (and I looked it). My hemorrhages lasted 2 - 2.5 hours, during which I literally could NOT get off the toilet, stuff was pouring out of me like a volcano. I was terrified that this would happen at work, in the car, out somewhere. I had a couple of times of bleeding through all my clothing (with tampon and napkin in place). One time, I flooded through the tampon and napkin by the time I left the bathroom (10 seconds). I carried a change of clothes in my car, just in case. I was severely anemic. I was afraid to leave the house. I was starting to have some severe pain.

My hysterectomy was scheduled for Feb. 11 (TAH, BSO). I was thrilled, counting the days. My greatest fear was that I would have another hemorrhage before the surgery. I could not go to work the week before the surgery, I was bleeding so much. All I wanted in the world was for the bleeding to stop. (Funny how narrow our goals can become).

And it has stopped. That was one miracle. The second is that I no longer look 5 months pregnant. The third miracle was the feeling of peace and well-being that came over me immediately after the surgery. I was weak and tired, of course, but I felt so GOOD. I had no pain from the incision. The morphine drip worked great. Never took anything afterwards for pain. I had the surgery on Tuesday. Left the hospital Thursday. I would have thought that was impossible, but I was getting no nursing care and knew I would be more comfortable and taken better care of at home. The 6 weeks recovery were a very stress-free and pleasant interval in what had been a very frantic paced life.

Now, almost 6 months post-op, I feel very well and am so glad to be done with all that. I would do it again in a minute. There were no negatives for me at all.

I had a wonderful experience with my hysterectomy and I hope you will be willing to publish it to calm women's fears.

Six weeks today I underwent a total hysterectomy. Mine was one of those cases no doctor recommended the operation. Why? Because they know a lot less than they pretend to! I listened to my body and I decided that though the only symptom was pelvic pain, low back pain and terrible gas/bloating/constipation, it had to be because the uterus was pressing the rectum, the large intestine and against my backbone.

Three ultrasounds only showed a very big fibroid and it was deemed not important enough to cause much pain or discomfort. Lack of heavy bleeding or inter-period bleeding obscured the diagnosis even more. Since I also have fibromyalgia, every specialist who saw me sort of thought the entire problem was either caused by FMS or aggravated by my own perception of pain.

I had the procedure on December 10 and I saw the pathology report on January 5: adenomyosis all over the uterus causing it to be the size of a 5-month pregnancy, 5 fibroids in the posterior wall and atypical cells at the end of the cervix that had been undetected before despite a colposcopy, scar tissue in one ovary probably caused by a cyst that had burst.

I was given a HRT shot 24 hrs after the surgery and seeing that I only had skin rashes and some headaches I decided to repeat it a few days ago. I feel completely normal, lost 4 pounds, got my waistline back and now my problem is that I have to reduce the fiber in my diet because otherwise, I get diarrhea. To think of the amount of fiber I've eaten in the last 15 years!

12 hours after surgery I was already doing 'wind-relieving' yoga exercises in my bed. I spent 3 nights at hospital and begged to be sent home 'cause I couldn't stand the food anymore (No Fiber there!). Though living in a city with severe weather (Toronto), December wasn't that bad so I could start walking outside the house the day after I was sent home. The stairs were never a problem. Yes, I was very tired, or tired one minute and energetic immediately after and then go back to being tired for quite a while, but made a point of walking a few more blocks everyday. Eleven days after surgery I walked about 30 blocks at 'window-shopping' speed. I think it was on day 12 that I had a set back with high temperature and a stinky discharge but it lasted only 2 or 3 days. I did stretching exercises easy enough for my legs and back, even in bed. 2 weeks after surgery (Xmas day) I went out on the subway and stayed up all day for the socializing. Got home really tired, I tell you! 18 days after surgery I went to the gym and did Stretch-yoga for one hour and muscle conditioning with light weights for another. After that, it was just a matter of adding little things to my exercise routine: 10 minutes of biking, heavier hand weights, more demanding yoga postures, abdominal crunches (still can't do the demanding ones with legs to the ceiling!). I went back to work to my part-time job 26 days after surgery. That very day the snow turned into ice and I fell down which brought back some bleeding so I postponed returning to my full time job for another week. Since January 12 I've been back to my previous schedule: 2 jobs and gym everyday! Yes, I'm very tired some times. Yes, I had to go home early one day last week. Yes I came 2 hrs late another day but I think Fibromyalgia had a lot to do with it (every time my exercise program is interrupted, FM flares up and it takes it while to control it again).

Oh, I forgot to say that I hosted a New Year's Eve dinner party, went salsa dancing on January 2nd and started taking flamenco dance classes on January 5. I do hope that sexual intercourse can happen soon - doctor says I have to wait another 2 weeks to be on the safe side. Oh.... and he apologized to me for not having recommended the surgery and praised my understanding of my own body. To finalize, I wish I had had this surgery 10 years ago! A lot of tears and pain and shame (remember I had stinky gas) would have been avoided. I'm sorry for the women who had such terrible experiences, I really do ... but I almost cancelled my surgery because I was terrified after reading what was being published on Internet ... and it'd have been a great mistake. Please publish my letter - it could mean a lot to a woman who is having second thoughts because she is not a 'clear cut case' like mine.

Wish your health improves in due time and that the Aquarius Era we are entering now brings The Light of Understanding to all our lives. Thank you for providing the forum and corresponding with all of us.

Lia Fernandez, Assistant

National Patient Services & Public Education
Canadian Cancer Society

10 Alcorn Avenue, #200

Toronto, ON  M4V 3B1
(416) 961-7223, X 323

lfernand@cancer.ca

I fought against severe bleeding for one year by having two blood transfusions, 4 months of Lupron and various alternative healers. I changed my diet and exercised religiously. When the MRI showed in early June that I did indeed have Adenomyosis I was stunned. I thought sure it had been fibroids and I would be able to hang on a few years until menopause. Surgery was contrary to everything I believed in.

Fortunately, I finally found a sympathetic gynecologist ( after fleeing from two others in Berkeley who insisted I have a hysterectomy and nothing else could be done) and we discussed the different types of hysterectomy. On June 21, the first day of summer, I had my uterus removed through a small (well, three inches) incision at the top of my pubic hairs. I spent two days in the hospital. Tomorrow will have been a week and I feel so happy to be alive and I am looking forward to leaving the nightmare of the past year behind. I wish everyone good mental and physical health. Resistant to surgery to the very end, but relieved it is over.

You can send comments to the author, Madeleine