Oh, God….. Please, please don’t let it be Cancer.
Fifteen months after my ovarian cancer surgery, which included a total hysterectomy, I now look four months pregnant.
The first time I look four months pregnant is six months before my cancer surgery. I complain of “bloating” to my primary care physician.
“Bloating”?? Why don’t I describe it better?? Doctors hear that word every single day. It is not the right word. The unnatural shape of my belly is not digestive gas; it does not move; it does not progress along the digestive tract. Steady and relentless; my abdomen expands, like a balloon, from my pelvis to my ribs; and is so uncomfortable. It is there, all the time, no matter what I eat.
Persistent “bloating” is one of the symptoms of ovarian cancer, a disease known for its suite of vague symptoms. Personally, I think the term “abdominal distension” is more descriptive than the word “bloating”.
And now, 21months after I first experience “bloating/abdominal distension”, and 15 months after my cancer surgery, and nine months after completing chemo treatments: I look four months pregnant; my abdomen, swollen, and firm, and uncomfortable.
I make an appointment with my oncologist’s office. A CAT scan is ordered. Several long days later, I learn there are no sign of cancer: YAY! The Nurse Practitioner concludes it must be digestive and suggests I see my primary care physician. Over the next six months, I have appointments and tests with two different GI doctors; one diagnoses IBS and prescribes IBS meds, which make my symptoms significantly worse. Finding no relief for the abdominal distension, I return to my oncologist’s office and see my medical oncologist physician. He recommends a GI doctor whose insights, combined with the ability of a wonderful physical therapist, lead to a diagnosis -- abdominal lymphedema.
Finally, I have a diagnosis; I now know the root of my digestive issues. In my research, I learn that there is very little information available about abdominal lymphedema. There is a great deal of information about lymphedema related to breast cancer and swelling of the arm, and some information about lymphedema in the legs from various cancer treatments. However, abdominal lymphedema, sometimes called, truncal lymphedema, is not well-covered.
Over the next year, I learn a great deal about managing this chronic condition.
In sharing it on The Omentum Project Blog, my goal is to help other cancer survivors struggling with digestive issues so that we can learn more together. And maybe even inspire some researchers to know more about abdominal lymphedema.