DES Info: A DES Daughter shares her story about DES [Diethylstilbestrol] exposure and brittle bones…
It’s interesting watching our roles within the family change over time. I saw my mother and grandmothers grow old and slow… Now, I am there, but I am in my 60s and a DES Daughter (more on that later).
In the 1980s, I had a back x-ray following a fall. The orthopedist said, “Your bones look like that of an 80 year old!” Deep breaths, I am ok and only in my 40s…but what will this mean for my future?
I went to see my primary care physician who referred me to an Endocrinologist. The bone density test showed osteoporosis. I was young and hoped for a magic pill to help. I was prescribed medication and took it for many months with no side effects. One day, I started itching in various parts of my body, went back to the Endocrinologist who felt I was having an adverse reaction to the medication and I was advised to stop it. Years went by. I tried a new medication, but began experiencing stomach discomfort. I decided that I could not deal with that, so I stopped that medication.
In 1984, I broke a rib during an excited “bear” hug from my son who played college football. I lived through the pain and chocked it up to a chance occurrence. In 2004, I miss-stepped off a curb, my ankle rolled and I thought I had suffered a sprain. When my symptoms did not improve after a couple of weeks, I saw another orthopedist and found out that I had experienced a fractured ankle in addition to the strain. It was a rough recovery, but I made it.
I started a consulting business in 2004 and it had been going well until the fracture of my left ankle. My primary physician referred me to a new orthopedist. He ordered X-Rays and a MRI. When I returned for the results, he told me that I must retire. I had osteoporosis and degeneration of my entire spine along with stenosis. I was shocked and distressed.
I continued to work and in July of 2008, while leaning over the arm of a chair, I felt my right ribs “Pop”! Fractured ribs… it was tough sleeping and being patient with the healing, but I returned to normal. In October of 2008, I was flying for business and leaned over my lap to retrieve my purse. I felt the right ribs fracture again. This time the pain was severe, the recovery longer and more difficult. Later in 2008, I fractured my left toe by stubbing it in a hotel room…crutches and a boot!
From 2009 to 2011, I suffered a series of bad falls and painful fractures – all requiring long recovery periods and a lot of time spent in a boot with crutches. My ribs seem to be especially fragile. I fractured multiple ribs 2010, 2012, 2013, 2016, 2017 and another just before Valentine’s day 2020 . 18+ fractures and counting….Recovery is long and painful, especially trying to sleep. In 2012, I saw my rehab physician again, who said, “I don’t know why you are breaking so easily!”
As I mentioned earlier, I am a DES Daughter. Throughout life I have experienced reproductive and infertility issues. DES Researchers have now noted the link of DES Exposure to skeletal effects. Another facet of the many body systems affected by DES exposure.
I believe that DES affected my skeletal structure before I was born and have had lasting effects. Knowing the reason why I have osteoporosis and brittle bones helps, but it does not change the difficulties I face. One is “The FEAR of Falling.” After a few falls, which resulted in fractures that fear is always with me.
Second, given that I have experienced so many fractures, the Fear of Fracturing is more severe that the fear of falling. I am a nurse and have cared for patients that had fears…now I live with both of these fears every day!
One day at a time. I love to say.. “Today is a good day.” . I have not been able to say that for 5 weeks since my last fracture but the pain in now gone! So…. “Today is a good day!