Endometriosis, Ovarian Cysts, Misdiagnosed Fibroids

Age: 42 years old
Resides: Florida

In 1997, I turned 40 years old. Up until that time, I had had perfectly regular periods and though my lower back would ache some, I hardly knew what a cramp even felt like. I had one healthy, normal pregnancy. In 1997, my periods started becoming a little irregular. I’d have a period every 3 weeks, then every 4 weeks and I’d occasionally flood with lots of blood clots. My legs and back would ache during my period. I figured I was just getting ready to go through menopause. The same summer I turned 40, I had an ovarian cyst on my right ovary that was treated with birth control pills for about 3 months.

In August of 1999, my family moved to another state. A month later, I experienced a sharp pain in my right side during my period. I made an appointment with a gynecologist because I thought I’d gotten another ovarian cyst like the one I’d had two years before. In my new state, I specifically chose a female doctor because I thought she’d be more understanding since she was a woman, too. She did the regular pelvic check and didn’t find anything unusual, but she sent me for an ultrasound. The ultrasound came back normal. She advised me to wait and see what happened during my next period.

My next period came with no pain in the right side. I thought whatever had caused the pain was gone and I was okay. Two weeks went by, and though I wasn’t having my period, the pulling, burning sensation in my right side came back, along with a feeling of weakness and back pain and a dull ache in my legs. My appetite disappeared and I felt queasy. The burning, pulling sensation became a sharp pain again so severe, I couldn’t get out of the bed.

In the emergency room, I was told I had all the symptoms of appendicitis. But before they sent me to have my appendix removed, they did a CAT scan. The CAT scan revealed a solid mass on my right side that was not my appendix. They called in my gynecologist who did a laparoscopy. She found a tumor on my right ovary, endometriosis and fibroids on my uterus. I was a mess and needed a hysterectomy.

I was both relieved and scared to death. I finally knew what was causing the pain on my right side, but I was afraid the tumor on my ovary was cancer. I’d never heard of anyone having a benign tumor on her ovary, but I’d heard a lot about ovarian cancer. I had friends who’d had endometriosis, but they were young when they found out about their endometriosis and they’d had terrible, painful periods from the get go. They’d had a hard time getting pregnant and several ended up having hysterectomies. My periods didn’t cause me any real pain until I turned 40. I’d never heard of fibroids, but maybe they were the reason my periods had changed.

The gynecologist wanted to wait 6 weeks after the laparoscopy to do my hysterectomy. I figured, why wait? My doctor was a woman, too, and she surely wouldn’t have suggested a hysterectomy if it wasn’t necessary. My husband, however, wasn’t convinced. He asked me what the side effects of a hysterectomy were. I told him no more periods and no fear of pregnancy. He said if I was going to submit to major surgery, I should educate myself as much as possible. So, I went online and started doing searches on endometriosis, fibroid tumors, ovaries, hysterectomy, etc. One of the websites that educated me about the side effects of hysterectomy was Female Alternative Surgery with Dr. Tirso del Junco Jr. The side effects included: a potential permanent hormone imbalance. (I found out my sister’s breast cancer was hormone induced, and that I should not be on hormones because of my family’s breast cancer history),possible sexual dysfunction and prolapse of my bowels or other organs into the empty space where my uterus used to be.

Family and friends suddenly started coming out of the woodwork to tell me their horror stories concerning hysterectomy. My mother had a hysterectomy 12 years ago and is now beginning to experience the symptoms of prolapsed bowels. A friend at work has a mother who suffered for 5 years before her doctors got her hormones back to where she felt like a “normal” person again. My sister-in-law’s boyfriend blames his divorce from his ex-wife on her hysterectomy. She became a different person after her hysterectomy, their love life disappeared and she became unbearable to live with.

I decided to re-visit my gynecologist as an informed patient. I asked about the hormonal imbalances, the sexual dysfunctions, the prolapsed organs, etc. She said none of her patients ever complained about these things, though they could happen.

How could I know I wouldn’t be one of those women who experience the side effects of hysterectomy? My gynecologist more or less brushed me off then told me I had nothing to worry about. When I questioned her about having another procedure to remove the fibroids from my uterus instead of a hysterectomy she told me that because I had so many fibroids, there would be too much bleeding, making me an unfit candidate for this procedure.

I wanted to be sure, so I contacted Dr. del Junco Jr’.s office. Not only were all my questions answered, but the answers made so much sense. Why would I have my whole reproductive system removed if I could save it and not suffer the side effects of a hysterectomy? I had my medical information sent to Dr. del Junco Jr.’s office immediately.

Before my surgery, my husband and I had a pre-op visit with Dr. del Junco Jr. The doctor did not think I even had fibroids on my uterus because he had never seen fibroids that did not show up on an ultrasound. So not only did my gynecologist not have my best interests in mind by suggesting hysterectomy, she misdiagnosed fibroids on my uterus, the alleged fibroids that I couldn’t have removed to save my uterus because there were ‘so many of them’, and it turned out I didn’t have any fibroids on my uterus at all!!

In December 1999, I had my surgery and Dr. del Junco Jr. was right…. I had a perfectly healthy uterus, no fibroids. I did have endometriosis as well as and a benign tumor on my right ovary. A laser was used on the endometriosis and the benign tumor was removed and my ovaries reconstructed.

Dr. del Junco Jr. and his staff are so caring, not only for their patients, but for the family member who accompanies the patient to the surgery. My husband did not have to sit in an isolated waiting room worrying about me during my surgery butwas able to watch the surgery as it happened on a closed circuit TV. At night, he slept in a bed right beside mine for the 5 days I was in the hospital. Not only did this help me recuperate faster, but it gave my husband peace of mind as well.

About 4 days after my surgery, I remember telling Dr. del Junco Jr. how I had a surge of energy running through me. I did not realize how run down and tired my condition had made me, and before I was even out of the hospital, I felt this energy I’d forgotten about coming back. Four weeks after my surgery, I had to really hold myself back from doing things I was not supposed to because I felt so great. I kept having to remind myself it was too soon after surgery to be lifting heavy objects and to slow down or I might wear myself out.

It has been a year and half since my surgery, and I feel 15 years younger and stronger than I did before my surgery. How many women out there can say that after a hysterectomy?

Kimberly

Addendum:
We heard from Kimberly again in November 2001. She said,

“It has been two years since I came to the crossroad that forced me to make a life changing decision and it will be two years in December that I didn’t have a hysterectomy. I have many things to be thankful for. Since my surgery, I have so much more energy and actually feel 15 years younger. My life has been blessed with a wonderful husband and I truly believe I was given a second chance to live a healthy and whole life because I stumbled upon a web page that offered hope and an alternative to hysterectomy.

Thank you once again Dr. del Junco Jr., your staff, the surgery team, and the kind nurses at Temple Community Hospital.”

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