Comments and Personal Stories

A Woman’s Story

If I had only known!

I am a 58 year old registered nurse. Although I have not actively practiced nursing at the bedside for many years, I am a strong advocate for living healthy lifestyles, and being compliant with medical care, especially when it comes to preventative care. I also choose good providers of care and put my trust in them.

So when I found myself sitting in a urologist’s office one sunny morning in April of 2002 and was told that I most likely had ovarian cancer after an ultrasound, I was in total disbelief. The urologist was seeing me that morning because I spent several hours in the emergency room the previous evening. I could not void and had to have an indwelling catheter inserted into my urinary bladder due to a large mass obstructing the flow of urine. I was shocked to hear that I had a large mass on my ovary, because within the previous six weeks I had had a normal check up with my gynecologist.

With tears streaming down my face and as I pondered how I was going to tell my husband this devastating news, I went for blood work and an MRI. I kept praying for strength and acceptance as I lay still under the MRI machine.

Later that afternoon I saw my gynecologist. With my husband now at my side, I was relieved to hear that the mass first seen by the urologist was actually intrauterine with other large masses surrounding my ovaries. I was told that I needed to have a hysterectomy.

Quite honestly, I was so relieved to hear that I most likely did not have cancer, I was ready to go to surgery that day. I kept asking why my doctor did not feel these masses when I saw him only a few months earlier. He had no answer except to say that my uterus was tilted “backwards” and it was difficult to feel. I thought that this was strange, since I had such dramatic symptoms of not being able to urinate for at least four weeks, the last time requiring a visit to the ER.

When my gynecologist gave me informed consent, he skipped over the risks and alternatives but focused on the benefits. He said that I knew all about this since I was a nurse. I never knew that there could be any alternatives, and just wanted to be free of the masses that were causing all the pressure on my bladder, and to finally know if there were any possibilities of malignancy.

Within a few days I had a total hysterectomy which included removing my ovaries. Prior to surgery, I was still having menstrual periods at age 56. I had no hormone levels taken and had no idea of the radical changes that began to affect my body post operatively.

Following a six week recovery period from major abdominal surgery, I began to feel stronger but was tired. I know that it takes time to heal. But what surprised me the most was the major push for hormone replacement therapy by my doctor. I have fibrocystic breast disease and within four weeks of a hormone patch, I was feeling some breast lumps, so I took myself off the hormones. I went back to the office with these complaints and was again offered another hormone alternative. I asked for blood work to see where my hormone levels were at, but was told those tests were not reliable.

So the compliant person that I usually am decided to not go along with more hormones. I used diet, black cohosh, and reduced my caffeine intake to control the hot flashes and leg cramping. I am not sure if the herbal approach works or not, but if in my mind I feel better, I will continue to take it.

My most disturbing symptom post-hysterectomy has been my absolute lack of libido. I am tired a lot and have blamed this lack of energy and passion on work, grandchildren, and overseeing the care of elderly parents. But I am beginning to realize that since surgery, I have much less stamina physically. I also have very little desire for physical intimacy.

At first I thought I was at fault. My husband could not understand what was wrong with me. I thought it had to be something I was doing. I tried all kinds of things, like romantic evenings, weekends away, etc. Try as I might, I just did not feel like making love to the man I am so in love with. This has placed a strain on our marriage. My husband feels rejected. I feel guilty. It takes patience, trust, and understanding on both our parts to deal with this situation.

A few months ago a friend of mine suggested that I ask my gynecologist for Premarin vaginal cream, which I did. He willingly gave me a prescription, and I have noticed some slight improvement. But what is so disconcerting to me is that no one ever told me that losing my cervix, uterus, and ovaries would cause such dramatic changes in my body. And what is even more phenomenal is that other women are telling the same stories.

I always heard that you feel so much better after this surgery. Well, I do not. I am angry that the life I had has been changed. I know that I can and do have the ability for physical intimacy with my husband, but I wish I would have been given the alternatives to surgery and certainly a better explanation of the risks following the procedure. I don’t think that I would have felt so alone with my symptoms “if I had only known.”