March 18, 2008

SIDE EFFECTS: intense headaches (non-responsive to ibuprofen); pain that goes from left groin to left ovary (maybe a little higher) wraps back to left kidney and wraps forward to just below rib cage; hot flashes now also during the day; menstrual pain seems less today; spinal pain with focal points between shoulder blades and again at tail bone (more on left top corner of sacrum); heart racing; dizziness.

Obviously today is really ramping up so I am blogging early and may blog again tonight if things change or I feel up to it. Today is already hard. It's the first day where I feel that I might not be able to carry on a normal conversation with someone who doesn't know what is going on.

More history...
A few years ago I was diagnosed with a late-stage pre-cancer/ early stage cervical cancer. I was already having the groin pain (endo), but just thought it was a running injury (in my less painful days I was a not-so-great distance runner). After my surgery for the cervical cancer (I kept my cervix), the pain grew more intense. I was mostly afraid the cancer had spread. My doctor, who had been so brilliant with the cervical surgery, told me to ignore it. So I tried. At that time, the pain was cyclical and I did have some days that were pain free (hard to remember was those were like). My periods were awful, passing heavy clots and feeling very tired and fatigued.

Eventually, because of my travel schedule, I needed to see another doctor. When I mentioned all the pain I was in, he immediately ordered a transvaginal ultrasound. We found a moderately-sized cyst on the left ovary that appeared as though it were torquing. When we did the laparoscopy, the endometriosis was discovered. We have attributed the pain to that ever since.

Until recently, I never knew that endometriosis could also be part of an immuno response illness. I was recently talking to another doctor (I was pretty afraid after I read all the side effects listed on http://www.askapatient.com/viewrating.asp?drug=19010&name=LUPRON). This doctor, a friend of a friend, is an oncological surgical OBGYN. This means when he goes into surgery, he is dealing with more than just reproductive organs because the cancer has advanced. When I described my pain symptoms, not all of them follow the typical endometriosis pattern. There is no doubt that I have endometriosis, but it can also be asymptomatic. He thought I might be having other problems and recommended that I do Lupron as a diagnostic. If the pain goes away (after these initial flares), it's the endometriosis causing the pain. If it doesn't go away, then it's something else. The other opinions I have received thus far are a mass growing in the wrong place, something benign, something more dangerous or Lupus (as the overall condition).

After researching Lupus and considering my entire health history, this is a strong possibility (one I'm not too thrilled about). I've had a history of strep, scarlet fever, bronchitis, pneumonia, photo sensitivity, back pain, blisters inside my mouth, Raynaud's coloration and a number of ailments that have caused high fevers. I do not have the arthritis or the shoulder pain they describe, so I am not 100% sure. Not something I am exactly wishing for.