Today’s article is a story by a reader Aimee who experienced abdominal and pelvic pain for many years. She hopes her story brings attention to adhesive diseases. On Friday, I’ll provide more information about adhesive disease.
My name is Aimee A. and I am 45 years old. I am the youngest of 3 children and have the most supportive family. They are my best friends and my constant caregivers – emotionally & physically. My husband Jim and I have been together since 1998 and have gone through the past 6 of my 7 surgeries for abdominal adhesive disease. We finally were able to get married in 2000, when I was feeling well enough, after multiple surgeries delayed our plans. I’ve been a Gynecologic Oncology RN for the past 13 years and feel I have a true calling. I have a strong passion for what I do and pride myself on being a true patient advocate. I feel that all I have been through over the past 30 years allows me to care for my patients more effectively, and with not only sympathy but empathy.
My first abdominal surgery was in 1978 when I was 13 for unexplained weight loss, nausea/vomiting, and abdominal and pelvic pain. At the time, “adhesions” or “Pelvic Adhesive Disease” was not mentioned.
The years following the surgery were wrought with innumerable doctor visits as I continued to have upper abdominal pain, bloating, nausea/vomiting, constipation, and weight loss. I was treated for ulcers for the most part and given multiple pain medications to use when I had pain. I was also regularly referred to psychiatrists, since no tests showed any cause for the pain. Not only was I dealing with severe pain, but also with the medical community doubting my own assessment. I had many more surgeries that found lots of adhesions, and tried to eliminate them. [Note: adhesions are scar-like connective tissue bands that form between tissues. They often occur after surgery. -HtCwP]
It’s difficult to simply sum up the effect of 30 years of pain caused by abdomino-pelvic adhesive disease. I never allowed pain to rule my life. Not to say that it didn’t have an affect, but I found ways to cope. I had to take varying pain medications on a regular basis to function – but function I did. I never missed work unless I was hospitalized or recovering from surgery. I never allowed it to interfere with life outside of work – except for life issues of marriage and having children. I was advised that it would be very difficult for me to go through a pregnancy and ultimately didn’t have children.
With each surgery, I prayed it would be my last and that I would be able to live a “normal” life. As I became educated about adhesive disease, I was aware that with each surgery, the problem could become worse. This is because as adhesions are removed, more form. This can cause a cycle of adhesions causing pain, but surgeries causing more adhesions and thus more pain.
What finally helped me was using a membrane product which works to prevent adhesions. I’m still realizing the benefits today. My advice to anyone who undergoes abdominal surgery is to ask the surgeon if they utilize an adhesion barrier in their practice.
My experience has helped make me the person I am today. I’ve become a very knowledgeable and compassionate patient educator and advocate.
I appreciate Aimee telling her story and being an advocate for patients, not only with whom she works, but others by sharing her experiences. On Friday, I’ll provide more information about adhesive disease.
This week’s Grand Rounds is at Pharmamotion.