Helen’s story
After seven months on Duphaston I returned to my doctor and told her how miserable I felt and that I wanted to try some of the alternative treatments. She suggested laser surgery and referred me to a surgeon experienced in the procedure.
I was a little apprehensive after my interview with this surgeon for he rather casually mentioned dividing the utero-sacral ligament as a way of relieving pain. My initial reaction was distrust as I imagined that the uterus would be unsupported. However this isn’t so and he carefully described the procedure explaining that as there were a lot of nerve fibres in the ligament it would give me relief from the pain experienced every time the uterus contracted.
I went home and looked up all the books and articles I owned. I telephoned the Endometriosis Association and received all their latest information as well as the opinions of a few professionals. I then spent a day in the Health Department Library but didn’t find much material. It appeared that there was very little information available because very few surgeons were doing the procedure here in Australia. I hoped that maybe zapping off my spots of endometriosis was all that was necessary to relieve the pain.
I recontacted my original doctor and told her of my concerns and asked her to speak to the surgeon. She relayed the message that he would be conservative but couldn’t really be sure of the best treatment until the laparoscopy. This made sense to me and I decided to trust them.
I awoke from the anaesthetic to hear the good news that all the endometriosis seen had been removed with the argon laser and that one of my utero-sacral ligaments had been cut (a utero-sacral neurectomy). I would not need to follow this surgery up with drug treatment.
Two menstrual cycles were pain free. It is hard to describe the feeling of liberation when you realise that the quality of life you had previously experienced was so compromised.
I hasten to add that I am quite realistic about the nature of endometriosis and know this current euphoria can only be guaranteed for twelve months. But as I am only experiencing a slightly rotten day on the second day of my cycle it all seems worth it. Most importantly I am getting on with my life.
Cathy’s story
One of the most difficult decisions of my life was deciding whether or not to have a hysterectomy. I had been seeing a gynaecologist who was treating me with Duphaston which wasn’t working. I was in severe pain, had no control of my bladder and I had bowel problems. He seemed to think there was not much wrong with me. He had performed a laparotomy on me seven months previously and diagnosed and cleaned up mild endometriosis. He was now suggesting that my only option was Danazol — mainly, to calm me down, I think, as he didn’t feel the endometriosis could have grown back so quickly.
I felt upset and humiliated by his attitude towards me and I felt there must be other alternatives. I knew I was in trouble — I was living on Panadeine Forte every day. Sometimes I couldn’t pass urine and other times I couldn’t retain it. The pain became so severe I couldn’t even drive a car. My family was suffering terribly with me also — I was always irritable and unable to function. Taking Danazol as was suggested worried me as I have a severe allergy condition to the extent that my husband and I had to build a new chemical free house in the hills. I had suffered bad side effects with both Provera and Duphaston.
I decided to get a second opinion a month later. The next gynaecologist said that the disease can grow back quickly and be very aggressive. He said that laser therapy via a laparoscope can control the endometriosis if it was mild and perhaps no drugs would be needed. However, when he gave me a gentle examination he thought he could feel a large cyst and sent me off for an ultrasound which showed a large cyst of four centimetres plus.
I now had to have another laparotomy and lose the right ovary. Drugs would not work on an endometrioma of that size. As I was 37 years old and had two children and didn’t want any more, he suggested I think about having a hysterectomy as my side effects were so severe — by this stage I was also bleeding from the rectum. After two months of agony, both physical and mental (my husband listened patiently for hours and supported me — I felt a failure for needing a hysterectomy), I decided I wanted my life back. I could no longer function — I had given up my work, my study and my social life. I was trapped by endometriosis in all my waking hours and sometimes in my sleep — it never left my thoughts.
So, in July 1990,1 had a hysterectomy during which a bowel surgeon was also present and needed. My right ovary was stuck to the uterus and was enlarged to the size of a tennis ball with endometriosis. There were also other cysts and spots of endometriosis. As I had agreed to a hysterectomy, the surgeon was able to remove the ovary and cyst with the uterus, without spilling the contents of the cyst.
Since the operation I have been feeling significantly better and pain free. I can now enjoy my life again, my husband, my children, study and work. My sex life has also improved remarkably. I never knew one could have intercourse without pain — it is now a wonderful experience for me. I honestly believe I made the right decision to follow my instincts and seek a second opinion. My pain and my disease were very real and very debilitating.
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