My Story
I'm not very good at introductions, so suffice to
say that some of what you read here will sound all too familiar and with a
bit of luck, some of it won't and might actually offer some new ideas on how
to live with Endometriosis.
Here goes:
I was 'officially' diagnosed with Endometriosis in June 1991, three months
after I got married. Talk about the "summer of discontent"!
Most of my late teens and early twenties passed quite normally with the
exception of the terrible pain I used to go through during my periods. As I
got older, I was told that once I had a baby, the problems would all go
away, but deep down, I knew that something was wrong.
Almost 16 years on, I learned a new word: Endometriosis!
I left the Consultant's room that day, sore but relieved that at last I had
managed to put a name to what I had been feeling for so long. I rushed round
to the library to find out more about Endometriosis.
In hindsight, I should have left it for a few days and just taken the time
to get used to pronouncing the word 'Endometriosis'.
What information I could find was often tucked away at the end of a chapter
in a book that seemed to cover everything else in depth and the further I
searched the more desperate I became to improve my knowledge of
Endometriosis.
Later that year, I had my diagnostic laparoscopy,
got given a bottle of Ponstan and sent home.
Six months later, as the pain got worse, my GP sent me back to the hospital
and I was told that I shouldn't be in any pain at all because my nerve
endings had been severed and it took a lot longer than six months for them
to grow back. When I asked why I hadn't been told this before, the doctor
mumbled something about "Should have done.........probably the effects of
the anaesthetic...."
The doctor then suggested I try Danazol, but I refused, stating that, at the
time I had read it might be responsible for causing cancer in Beagle dogs
and that I was also most concerned about the side effects. He said that he
had never heard about it causing cancer in Beagle dogs and demanded to know
where I got the information. I responded that I had read about it in the
library. In my opinion, he then tried to play down the side effects of
Danazol, but I insisted that I was not happy about taking it and would
prefer to try some other available treatment. No offer of any other
treatment was made and eventually I had to insist on laser surgery, to which
he reluctantly agreed. As I got up to leave, he told me not talk to his
other patients in the waiting-room as he didn’t want me giving them ideas.
The following year, I had the laser surgery and
although the symptoms did not disappear, I felt a lot better.
Six months later not only was I back where started, but the pain was
progressively getting worse. I saw another doctor (since I had made a formal
complaint against the previous one) who recommended a Hysterosalpingogram (HSG).
It was the most painful procedure I have ever had or wish to have. If anyone
out there is intending on having one, please insist it is done under general
anaesthetic.
The results of the HSG were that one of my fallopian tubes was blocked and
that the other had a ‘balloon’ in it and that my chances of having a child
was about 10 – 15%. My new doctor felt that if I wanted a child, then now
would be the time, as my condition would probably worsen with the passage of
time.
So, I was scheduled for another round of laser surgery to help ‘clear the
way’.
The day after surgery, I was told that the surgeon had performed an HSG,
laser treatment and a D+C and that my tubes were in fact ‘patent’ (open) and
the previous result i.e. the ballooning of one and closure of the other was
most likely due to muscle spasm because of the painfulness of the procedure.
Less than a year later, I was back where I started and my GP prescribed
Provera, which I took for six months. I felt no different during that time,
in fact I was feeling worse. I then came to the conclusion that perhaps I
was not fated to get any long term relief from the condition and made the
decision to stop all treatment and make the most of what I had.