PERSONAL STORY: JOANNE BARTLING

I am one of the seemingly few, on WITSENDO (an email support group for Endometriosis sufferers), who chose the hysterectomy route. I am 43, and though I've had extensive problems associated with my periods since menarche at age 10, I wasn't diagnosed with endo until the age of 36.

During a laparoscopy to rule out ovarian cancer, extensive endometriosis was discovered. My lap turned into an exploratory laparotomy with removal of all visible endo. A GnRH Agonist was advised post op, but I declined. 6 years later, with increasing pain, another lap was performed. Once again extensive endo, stage IV was found, but this time with impressive involvement of bladder, ureters and bowel. The intestines were also adhered to the back of the uterus. The endo was too extensive to deal with laparoscopically, so my gyn elected to remove what she could, and then advised me to seek out an expert in the field of bowel endo. She also strongly advised a hysterectomy. I declined.

I did my search on the internet, through WITSENDO, and found an RE, who is respected for his endo surgery in the Phila. area. He too urged a hysterectomy, and after conferring with my PCP's, I agreed. Prior to the hyst. I underwent a flex. sigmoid and an MRI. The flex. sigmoid revealed the fixed area of the bowel, found during the previous laparoscopy, but not other abnormalities. The MRI revealed a cyst, and some minor osteoarthritis of the spine.

I was scheduled for the hysterectomy just 4 months after my lap. By this time, the pain was so excruciating, and lasting most of my entire cycle. I began missing time from work, as narcotic use increased dramatically. Due to the severe back pain I was now experiencing, I could no longer walk without a severe limp. Fatigue was also a major problem as was my decreased appetite. I quickly lost 10 lbs. and appeared debilitated.

Though it was not expected, I not only had a TAH/BSO, with excision of all endo, I also required a bowel resection. Though I was told it was very rare, I had feared I'd end up with a colostomy. I did avoid that horror, because the bowel prep I took, prior to surgery, was very successful. Otherwise, a reversible colostomy would indeed have been placed.

I am now 9 weeks post op, and am totally pain free. I'm an RN, working on a Skilled Nursing unit, and no longer have difficulty with the demands of my job. In that respect I'm quite thankful for the hysterectomy.

All is not rosy, however. I am in surgical menopause, suffering through a lot of symptoms. I often feel I traded one set of symptoms for another. I now experience frequent mood swings; very frequent hot flashes/night sweats, though this has improved with the use of the clonidine patch; fatigue; painful intercourse, which no cream has helped, as yet; and the most troubling, forgetfulness!!

I thought the decision on whether to have a hysterectomy was difficult, but now I'm faced with the issue of HRT, and finding that decision even harder.

Do I decide on ERT and risk recurrence of endo and possibly developing breast cancer, or do I decide to forgo ERT and risk osteo, heart disease and stroke.

For now, I'm not on ERT. My RE had originally planned to start it, post surgery. However, he decided to hold off, for awhile, due to the extensiveness of the disease.

I knew prior to surgery, that a hysterectomy was not necessarily a cure. However, I am hopeful, but truthfully, not confident, that I will remain endo free.

Joanne Bartling