About Me--My Health Challenges Story and Medical History

This is a summary of how I went from a fully functioning (though often ill), working adult, to a chronic pain patient disabled by the symptoms of illness.:

Though I've had debilitatingly painful periods since adolescence, I did not experience daily endometriosis pain till the past several years. First, my premenstrual pain worsened and lengthened, until it eventually began lasting about two weeks per month, getting worse as my period approached. Then, I'd have to weeks of normalcy, until the next cycle.

From the start, I was forced to use pain medication for the period pain. When my pain extended to two weeks, I was told by my doctors (who were adamant about avoiding prescribing narcotics) to take high doses of non-steroidal anti-inflammatories (NSAIDs) every few hours at the first sign of pain until the pain ended. They recommended this even though they knew the painful time period lasted two weeks. They did not once warn me (nor did the pharmacists or the prescribing information) that this could lead to stomach problems. Eventually, because of these high doses of NSAIDs, I developed a gastric ulcer in my twenties that did not go away for many years, despite treatment (I did not have the H Pylori bacteria that often causes ulcers, and mine was most definitely caused by this medication).

At some point, my pain worsened again in intensity and length. The break from pain I used to experience for about two weeks shortened and shortened until it was nonexistent. With severe daily pain, and about double that pain during and just before my periods, managing my life became increasingly difficult. I had always missed work during my periods (starting from my school years when I had to stay home for days during that time of month), and that had always been a problem for my employers (one I couldn't do anything about, and I couldn't understand why I was being reprimanded for a medical problem I couldn't control--I don't think had it been anything but a woman with "supposed" menstrual "cramps" that this would have occurred, but that's an issue I'll write more about another time.) But with the advent of the daily pain, I began missing work regularly and really struggling to keep up and fulfill my duties. Life became only about two activities: pushing myself to make it to work or laying in bed in pain (despite medication).

Though my pain was so much worse and now a daily state for me, my doctor did not want to increase my medication. In fact, she wanted to take away even the medicine she'd been giving me for years to control the period pain and some of the premenstrual pain. I had been taking that medication for 10-15 years! The truth is the dosage was so useless by that time with my pain so much increased that I found the prescription she'd been giving me to be useless anyway. I insisted on a referral to pain management, and wanting to stop prescribing my pain medication altogether, she readily complied. That is when I finally got some medication strong enough to at least partially affect my pain.

Not able to work any longer, I applied for an extended sick leave from work and was approved. Thankfully, I'd had the forethought to sign up for a disability plan at work when it was offered to me (I'm very cautious about things like that, even though until it actually happened--and even then I had a hard time believing it was really happening to me--I would never have guessed that I'd suddenly begin to suffer from disabling enough daily pain. It just wasn't the future I expected for myself, but who really does expect that type of future?). I was sure with that by working with my pain management doctor during my sick leave, I'd get my pain under control and be back to work in a few months. This never happened. I continued to not get better and my pain was only slightly under control on occasion.

My short term disability plan kicked in when the sick leave ended. Two surgeries and many treatments and one year later, I was still not better and not back at work. In fact, after the surgeries, I felt even worse, with adhesions now also being a problem for me, among other issues. I applied for long term disability through my private plan from work once the one year, short term one ran out, and was approved. I had one more surgery that was the last resort for me, and it, too, did not work. It also, like the previous surgeries, worsened my pain.

That is where my story currently stands. I am working to maintain my disability and desperately trying to figure out how to live life with a disability, while home alone all day and able to do little for myself. I am struggling with financial issues as a result of being young and not able to work and of course am dealing with plenty of emotional and relationship issues (with friends, family, and even acquaintances) as well. I am doing my best to be proactive about my situation and starting this blog is one of the ways I'm doing that.

If you'd like, please share your story, about your health challenge (or the challenge of a loved one--if they don't mind). I would love to post your story here (as long as it's well edited and checked for typos, etc., and seems appropriate to the tone of this blog) if you're interested in sharing it. Or, you can comment with your story, or a link to your story on your or someone else's blog, too.