My Endometriosis and Hysterectomy Story
I wrote this for the Sans Uteri positive hysterectomy web pages and decided I should put it on my own site, too.
I had my hysterectomy in 1997 and wanted to share some of my experience.
I began having trouble with ovarian cysts in 1988 at the age of 21. After being on estrogen for a few months, my first cyst had not deteriorated or ruptured, so I had surgery to remove it. Two years later I went through the same thing, a cyst on the same ovary, and was advised to have the ovary removed. So in 1991 I had a second surgery. The cyst was the size of a small cantalope. After the surgery I went on birth control pills, as I was now married but not ready to start a family. This seemed to keep the cysts at bay for the most part, although I did complain some during this time of pain during intercourse and before and during my period. When I mentioned them to my doctor I was told that "some people just have more pain than others" and that I had a "low pain threshold." My husband felt that I was rejecting him and when we eventually divorced I attributed some of the problems that we faced to this.
In 1994 (shortly after remarrying) I underwent a laparoscopy due to pain, but the cyst that the doctor expected to find was not there.
In 1995 I began having pain again, similar to the pain I had with the cysts. I had moved to another state and was now seeing a different doctor, and as we discussed the pain and its frequency he started asking other questions, such as whether I had pain during intercourse, painful bowel movements during periods, general pain before and during periods, other gastrointestinal upsets such as diarrhea, constipation, nausea and frequent yeast infections. All of these I had. (A complete symptoms list can be found on the Endometriosis Association site.) Without even examining me, he told me he thought it was endometriosis and sent me to a specialist who confirmed his diagnosis. When we received my records from my previous doctor we discovered that he had already diagnosed endometriosis but had never told me, nor did he attempt to treat it. I spent a good bit of time dealing with my anger at my previous doctor for belittling my pain and not informing me of everything he knew from my surgeries.
In 1995-6 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! (I have no history of breast cancer in my family, so I felt it was the best option for me.) During this time I also tried several diet changes but did not find them helpful for me.
After coming off the Lupron treatments, my husband and I started trying to get pregnant, thinking that this could be our only chance. Intercourse was still sometimes painful and after only a few months, the menstrual cramping was severe enough and frequent enough that the doctor performed another laparoscopy. He found quite a lot of scar tissue, even some on my liver that he removed or cauterized. This helped for a while, but, again, within 6 months the pain began to return. We continued trying to get pregnant, but the pain made it very difficult. After a year of trying, I had not become pregnant and the pain was severe enough that I was taking 1600mg -2400mg of Motrin or stronger medications for 2 weeks a month just to be able to function. My husband and I finally decided that a hysterectomy was the best decision for us. It was scheduled for late in May of 1997 - right after my 30th birthday.
The surgery went well, although I had allergies to the pain medication and had a horrible time the first day. I also had trouble with my iron levels and was nauseated the first few days until we figured out the problem. Vitamins added to my diet helped and I went home after 5 days. I went on estrogen immediately upon coming out of surgery and, probably as a result did not have too much trouble with many of the annoying symptoms of menopause such as hot flashes, anger, etc. (There is a list of the most common menopause symptoms here). The only ones that plague me a bit are what I call "word losses" (I forget words, right in the middle of a sentence. Most annoying.) and was more insecure and sensitive than usual. That seemed to get better after about 6 months, and I associate some of the problem with the “word losses,” as it can be very frustrating. 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 inability 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; basically, I had already gone through that. I scheduled my surgery 4 months in advance and used the time to prepare myself for the loss.
At home, I immediately began a prescribed exercise regimen, walking every day, 15 minutes the first day and adding 5 minutes to that every day. 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, then added 2 lbs. every week. I was surprised by how quickly my strength returned. I found myself able to lift and carry 10-15 lbs much sooner than I expected to be able to.
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 before I had been 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.
After 6 months, I heard about a progesterone cream that might help with the memory problems and occasional hot flashes that I was still having. I tried it and, after a few weeks noticed a huge difference. I stayed on the progesterone cream for about a year, then began to use it less and less often. I currently do not use it at all. I still have trouble sometimes with the word loss, and occasionally I have trouble concentrating, especially when I am tired. The cream might help, but I have not tried it again, mainly due to laziness.
I attribute some of the success of my hysterectomy and recovery 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.
After a year or so, most of the problems I’d encountered had disappeared. At this point, 4 years later, I am very happy with the decision to have a hysterectomy. My husband and I now cycle several times a week together and I have done a few 50 mile rides. I could not have even considered doing this kind of physical activity before! I can finally make plans and fully expect to carry them out! I no longer have to check the calendar before making an appointment (to be sure it isn't *that* week!) I am able to consider committing myself to my friends and my church because I know my health will not keep me from meeting 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!