My excision surgery seemed, on the surface, to have been successful. My endometriosis had been extensive. It was found on the walls of my abdomen and pelvis, on my left ovary, on my large intestine, and on my left ureter. In addition, I had extensive adhesions (bands of scar tissue) that had bound those organs together and attached my intestines to my abdominal wall. My doctor had removed all the endometriosis, cut all the adhesions, and removed my left ovary and tube, which were badly damaged by adhesions and were unsalvageable. I cried when I heard the news, out of relief. My severe symptoms were explained, and the cause of them had been treated. My doctor had characterized my surgery as long, difficult, and complicated, but ultimately successful. I felt that once I healed I would have a very good chance of feeling much better.
If someone had told me that the next year would bring another surgery, several ER visits, several hospitalizations, a new diagnosis, and a new set of chronic problems that rivaled my old symptoms in severity, I might have questioned their sanity. I went home from my surgery sore, but very relieved that it was over with. I didn’t know that my battle with adhesions was just beginning.
Adhesions are scar tissue that forms inside the body in response to injury. Some adhesions are thick bands, and some are more diffuse and filmy. They can glue organs together and to the abdominal wall, which can interfere with the function of the organs that are affected, and cause pain. Many organs need to move in order to be able to function: for example, the intestines need to be able to move to push food through, and the ovaries and Fallopian tubes need to be able to move for the ovary to release an egg and have it move down the tubes into the uterus.
Surgery is a major cause of adhesion formation. One third of patients are readmitted to the hospital an average of 2 times in the 10 years following open abdominal or pelvic surgery, for conditions related to adhesions. The most common problems caused by adhesions are chronic abdominal or pelvic pain, small bowel obstruction (where the intestines are kinked or twisted, and are partially or completely blocked), female infertility, and inadvertent bowel injury in subsequent surgeries. Although minimally invasive laparoscopic surgical methods are superior to laparotomy (open surgery) for many reasons, laparoscopic surgery does not necessarily result in fewer adhesions.
Surgeons typically underestimate the incidence and complications caused by adhesions, and information about adhesions is provided in only 9 percent of surgical informed consent forms. Adhesions occur in 70 to 95 percent of patients undergoing gynecologic surgery, and post-surgical adhesions are cited as the primary cause of bowel obstruction. Adhesions are responsible for over one billion dollars annually in health-care costs in the U.S.
After my excision surgery, I had complications due to an undiagnosed bleeding disorder (see my story here) that resulted in another surgery 7 weeks after the first. Adhesions were once again found and cut during that surgery, but despite that, about 6 weeks after the second surgery I started to experience symptoms that eventually turned out to be adhesions again. The conundrum of adhesions is that surgery is both a treatment, and a cause. Multiple surgeries can increase the number of adhesions, although there are some surgical techniques that minimize adhesion formation to the extent possible. My problem with adhesions was likely exacerbated by my undiagnosed bleeding disorder, since meticulous control of bleeding during surgery is one important way to minimize adhesion formation.
By four months after the second surgery, my symptoms were once again greatly affecting my quality of life. I had severe pain in the left lower pelvic area that prevented me from doing many activities. I had severe lower abdominal pain and nausea after eating, even when eating only small meals of food that should have been easily digested. When my intestines would get partially blocked due to bowel obstruction, the pain was intense and I couldn’t eat without throwing up.
The pain I would get after eating would come on suddenly and intensely. It was waves of sharp, stabbing, knifelike pain that would leave me doubled over. I was afraid to eat while I was out of the house because sometimes I would end up on the bathroom floor, unable to move without throwing up due to the intensity of the pain. I started to hate food and avoided eating whenever I could.
My doctors (a general practitioner, an endometriosis specialist, a gastroenterologist, and a pain management doctor) all agreed that I likely had a problem with adhesions, but they all also agreed that little could be done about it. Unanimously they said that although I might get better with another surgery to cut the adhesions, I might also get worse. I was offered the typical array of medications, including antispasmodics to decrease the intestinal pain I had, antidepressants, which can sometimes be helpful for visceral (organ) pain, and the fibromyalgia/anti-seizure drug Lyrica.
After doing some research, I decided that a specialized form of manual physical therapy that treats adhesions non-surgically (Clear Passage Physical Therapy) was probably my best hope. I travelled to Miami twice for treatment with an amazingly compassionate and skillful physical therapist. I was amazed on my first trip to notice a big difference in my symptoms fairly quickly—on my second day I was able to walk up a small hill and a set of stairs without any pain, something that hadn’t been possible since the problems with adhesions had started. I also started being able to eat a little more normally. By the end of the second trip, my symptoms had improved very significantly.
I still have to watch what I eat quite carefully, and even as I write this I am recovering from another partial bowel obstruction. I don’t think my intestines will ever be the same as they were before my surgeries; they may always be affected to some extent by adhesions. However, I have to keep in mind that the gastrointestinal symptoms I had due to endometriosis on my large intestine prior to surgery were also very unpleasant and affected my quality of life. So fear of adhesions is not a reason to avoid surgery, but it is important to be aware of the potential for problems. I was lucky that my doctors recognized the problem as adhesions very quickly, since many doctors do not. And I was also fortunate to receive physical therapy treatment that finally, a year after my excision surgery, has allowed me to feel like I am really getting my life back.
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This article was published originally on Hormones Matter on July 22, 2013.