Susan Beth's Story

This is Susan Beth's story.

Gallatin Gateway, Montana

Even before my first period I had that terrible ripping sensation in my gut when I stood up or stretched.  I was young and just assumed that was what the term “growing pains” referred to.  By the time I was 18 I knew these pains were really the sign of aggressive endometriosis.

I had difficult heavy periods with cramping and vomiting for days from my first cycle on.    My mom and I just thought that was the way I was.  From the time I was 14 years old I was pretty much disabled three days a month, and somehow I thought this was within the realm of normal.

By the time I was a sophomore in college the pain was far more than 3 days a month – it dominated days 15 – 28 of my cycle to the point where I could not stand up straight. On Halloween of that year I had my first of what would be seven surgeries - 6 laparoscopic, 1 full on huge incision.  That first surgery confirmed the diagnosis of stage four endometriosis (chocolate cysts on the ovaries).  I was 18 years old and had never heard of it before, but it would dominate my life and my identity for the next 25 years.

As was typical for 1983, I was put on birth control pills without the placebo to suppress my hormones and hopefully control the disease.  Unfortunately, within a year the doctors determined I had a latent seizure disorder that was triggered by the pill, and I was allergic to the three anti-seizure drugs that were available at the time.  Danazol, (the next and only other course of treatment for endometriosis at the time short of hysterectomy) had an even greater propensity to cause seizures so no doctor would risk putting me on that.

There I was, under 20, with an extremely aggressive case of the disease with no non-surgical treatments available.  A hysterectomy was not recommended because to be effective they would have to take my ovaries, and that would leave me in need of replacement hormones (eventually), which would also bring about seizures.  It was a bit of a “Catch 22” and the only option was to allow the disease to progress, with surgeries more and more frequently to help alleviate the pain.  One of my doctors even went so far as to politely suggest that although I was not married, the best medical course of action for me was to find someone willing to get me pregnant and have a baby because that often is a “cure” for endometriosis.   I had no boyfriend, or I might have considered it.

In 1988 I was admitted into a trial for a new drug, nafarelin acetate (now sold under the trade name syneral), and it worked without causing seizures (it stops the hormone production at the pituitary instead of working on the ovaries, and that avoided the seizure trigger for me).  I was under the care of one of the leading endometriosis physicians in the world, and they were paying me to be there.  God knew what He was doing!

Although nafarelin was not approved for more than a one 6-month course of use, my physicians were able to keep me on it for six months out of every year over the next three years.  However, the drug was only partially helpful, and I had to have surgeries (sometimes twice in a year) to clean out the lesions and softball size endometriosis cysts that were causing scars throughout my abdomen.  At one point I knew I was in need of another surgery because I could not lift my left leg to push the clutch in on my car without terrible pain.  Those years were dominated by pain and pain management techniques.

I married when I was 32, but even before that the endometriosis had impacted my relationship with my future husband.  My periods would come and all of life came to a halt – my man cared for me as I was incapacitated.  Many of our dating photos show me hunched over holding my abdomen to try and smooth the pain.  And probably hardest of all, as our relationship began to get serious I had to tell my future husband that if he really wanted to have children I was probably not the best choice of a dating partner because in all likelihood I could not have a child.

For my husband and me, it was a blessing to know in advance that infertility was part of our future.  We avoided the shock that so many couples suffer when they try to have a baby and find unexpectedly that they can’t.  After our wedding we immediately tried to get pregnant, and were unsuccessful.  Straight to in vitro fertilization is where we went since the medical research was clear that with endo that is the fertility treatment of choice.

It took 5 rounds of in vitro before we were successful, and that pregnancy was terrorized by complication after complication.  But we had a son, and what a gift from God that is!

True to the medical prediction, the endometriosis was really helped by the pregnancy.  No new disease since having a child 11 years ago.  But I do still deal with the scars and the havoc they play with my digestive system.  One doctor explained that it looks like a hand grenade went off in my abdomen. 

I’ll always have some pain from those scars, and other unmentionable digestive system troubles.  And of course, infertility is still an issue.  I’ve gotten too old to seriously consider trying to be pregnant again, but there is a sadness in knowing that we couldn’t have more children. 

I honestly have to say that who I am, my reliance on God, my strength, and the way this battle drew my husband and I together are all gifts that came about because I had endometriosis.  It is a terrible disease and I wouldn’t wish it on anyone.  But I cannot claim that it ruined my life – made it harder at times, but did not ruin it.  For that I am eternally grateful.

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If you have questions or comments for Susan that you do not want to post here, feel free to send your emails to her at ajsb2 (at) littleappletech (dot) com.