‘The worst case of endometriosis I have ever seen’. These were the first words I remember hearing through the haze after an anaesthetic.
I tried repeating the word to myself — ENDOMETRIOSIS. I drifted back to sleep, happy that at last a name had been given to the cause of my debilitating period pain.
The doctor’s voice roused me once again: ‘You’ll probably never have children’.
I wondered who the doctor was talking to. I knew it was not me because I had not even tried to get pregnant.
The truth dawned the next day when once again the doctor described the severity of the endometriosis and repeated that pregnancy looked very doubtful.
He told me that I was to take 400 milligrams of Danazol a day for three months and then he would perform major surgery including the removal of my diseased ovary.
As the endometriosis was so extensive, he felt the Danazol would only marginally improve my condition and he could not guarantee the success of surgery.
I was devastated. One day I was in hospital with a suspected ovarian cyst. The next I was told I had a disease that I could not even pronounce, I had to take male hormones, I had little prospect of ever having a baby and I was to have major surgery in the near future.
I knew very little about Danazol as it was then a relatively new drug in Australia and I asked my doctor about any side effects. He tried to assure me that I need not worry about little details and that he would look after me. I did not feel at all reassured.
The week after being diagnosed as having endometriosis, my husband’s firm transferred him interstate. I was in turmoil, life was caving in around me.
Once settled in our new home, I decided to seek a second opinion. The news about the endometriosis had been so shattering I did not want to believe it. I wanted to hear something positive, something encouraging.
My new doctor had received a letter from my first doctor giving details of the disease. The new doctor asked me if I had any questions. Did I have any questions!
For the next half an hour he quietly explained in detail all I wanted to know, including drawing some diagrams so that I understood more clearly. He felt it was essential that I knew all the possible side effects of Danazol.
After I had exhausted my list of questions, he told me that he wanted to change the dosage of my treatment. I was to increase the dosage of Danazol to 600 milligrams daily and take it for six months. He hoped he would not have to perform major surgery. At the end of six months I had a laparoscopy to see how effective the Danazol had been. Much to my doctor’s surprise there was no visible endometriosis. There were certainly signs where the disease had been, but everything appeared normal.
My doctor suggested I continue taking Danazol for another three months just to make absolutely sure the endometriosis had been completely eradicated.
A few weeks after finishing the Danazol tablets I discovered to my delight that I was pregnant.
I often wonder how my story would have ended if I had not decided to have a second opinion. Would the smaller dosage of Danazol have cleared my endometriosis? Would the major surgery have eradicated the endometriosis? Would I have been left with painful adhesions? Would I have lost an ovary? Would I ever have become pregnant?
Of course, I do not know the answers to these questions but I am grateful I decided to seek a second opinion as the outcome was more than I ever hoped for.
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