Endometriosis is a disease that occurs when tissue similar to the uterine lining is found in other places of the body like colon, ovaries, Fallopian tubes, as well as others. The only true way to diagnose endometriosis is through laparoscopic surgery.
Two techniques that doctors use to remove endometriosis are ablation and excision. Ablation is burning the diseased tissue and doesn't remove all of the disease, only the surface. Excision, on the other hand, is cutting the disease and allows the surgeon to remove most, if not all, of the disease. Excision has a much higher success rate than ablation, but all doctors are not trained in excision laparoscopic surgery or frankly, what endometriosis is.
Because of this, patients with endometriosis have multiple surgeries trying to treat their pain and other symptoms. Each surgery requires at least one incision, most likely two to four incisions depending on the instruments the surgeon needs and where the disease is located. Along with incisions, the patient is put under general anesthesia, which can have its own risks. Being put to sleep multiple times can be dangerous. Having multiple surgeries can increase the amount of scar tissue patients have and can cause adhesions or organs sticking together. People can also get hernias from surgeries. Something as simple as sneezing can send someone who has just had abdominal surgery into increased pain and feel like a pulled muscle. As you can imagine, this is all extremely painful.
The recovery time for laparoscopic surgery can range from two to six weeks depending on what your doctor recommends and how extensive the surgery is. This means patients have to take time off work, which can cause financial strain.
Imagine you're living with pain that feels like barbed wire is around your abdomen and your insides are going to fall out. This is how at least 176 million people worldwide live every day. Now imagine that there is no blood test to properly diagnose your illness, but instead, only surgery. This is the reality of those who suffer with endometriosis.
Endometriosis has been found on the bladder, gallbladder, stomach, even the brain, lungs, and eyes. This is tissue that bleeds, causes inflammation, and doesn't belong on any of these organs. This is why other illnesses often accompany endometriosis.
In essence, a surgery is trauma to the body. When a doctor burns or cuts tissue, that causes trauma to the body so the body needs proper time to heal. I use the word trauma because trauma is physical injury and is synonymous with injury, damage, hurt, wound, sore, and lesion.
Doctors who are operating on patients with suspected endometriosis should understand the anatomy of each organ to properly diagnose and remove disease. Otherwise, there could be complications immediately or later down the road for the patient. It seems that doctors would rather operate on patients instead of referring them to an endometriosis specialist for proper care.
Personally, I have had six abdominal laparoscopic surgeries by six different doctors for endometriosis. I have had endometriosis on my bowels, ovaries, and pelvic wall. Five years ago I made the decision to have a complete hysterectomy (removal of both ovaries, uterus, and cervix) in hopes to find some relief even though I know it's not a cure and wouldn't be able to have biological children. I still experienced pain until I had excision surgery by an endometriosis specialist. I have also had my appendix and gallbladder removed. I tried several different treatments for endometriosis, but couldn't find much if any relief. This is why I had multiple surgeries.
Unfortunately, this is the truth for so many who suffer with endometriosis. It's time we get endometriosis sufferers proper care from an endometriosis specialist and better options for treatment that aren't as invasive and life altering.
Samantha Bowick, MPH is the author of "Living with Endometriosis: The Complete Guide to Risk Factors, Symptoms, and Treatment Options" and upcoming book "Living with Alpha-1 Antitrypsin Deficiency" as well as a fellow sufferer of multiple chronic illnesses and patient advocate.