My Hysterectomy and Consenting to be Informed

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I sat in my local gynecologist’s exam room, naked from the waist down. A flimsy, paper drape was all that shielded me from her intrusive exam.  I told her about my upcoming choice to have a hysterectomy. I told her that my periods had become unmanageable. I explained that the heavy bleeding, horrific cramps, and related leg pain were most likely due to three uterine fibroids and suspected adenomyosis. I needed to know if she would see me for aftercare, as I, like so many other patients, needed to travel out of state for my upcoming surgery. She assured me that she would look after me, but despite knowing my incredibly complex endometriosis history, she told me that she could absolutely perform my hysterectomy herself if I decided not to travel.

 

I didn’t argue despite the fact that my last endometriosis surgery required not only an endometriosis specialist, but a colorectal surgeon, an urologist, and a cardiothoracic surgeon. I let her comment go unchallenged. Weeks after my hysterectomy, and hundreds of miles away from my specialist, I would need her to make sure I was healing okay.  I assured myself that my silence did not make me powerless and that I did not have to fight every battle. After the exam, I threw out the paper drape and got dressed.

Before I left her office, she looked at me and said, “I am so glad you are finally making this choice. I mean, haven’t you suffered with endometriosis enough all these years?” The comment gutted me.

 

I, like so many other patients, suffered for years without an endometriosis diagnosis and had three ineffectual pelvic surgeries before finding an endometriosis excision specialist. I had two excision surgeries with a specialist that provided me with a good quality of life. Through nutrition, counseling, pelvic floor therapy, and mindful self-care, I was able to function, albeit with some limitations. But, these past two years, my periods have become heavy and it became hard to function the first few days of every cycle. An MRI showed fibroids and adenomyosis was also suspected.

 

From an outsider’s perspective, a hysterectomy should seem like an easy decision with my history. I am extremely lucky to have a ten year old daughter and right after her birth, I endured years of fertility treatments and suffered multiple miscarriages in the pursuit of having more children. Through failed treatments and debilitating periods, there have been many times I wanted to wish away my reproductive organs.  And yet, even though we have long resolved our family building, nothing about my decision to have a hysterectomy seems easy. I also resented the gynecologist for implying that by not making this choice earlier, I had somehow prolonged my suffering. I wondered how many times this doctor sold a hysterectomy as the definitive treatment for endometriosis, and how many patients of hers made this choice without informed consent.

 

The American College of Gynecologists and Obstetricians lists a hysterectomy as “the definitive treatment” for endometriosis, despite the fact that endometriosis is defined as disease outside of the uterus. It is estimated that over 600,000 hysterectomies are performed every year in the United States.  Some patients with endometriosis also have adenomyosis and fibroids and no doubt experience some relief after a hysterectomy. But those distinctions are important. Women need to understand which diseases they have, where they are located, and the various treatment options for each disease. Unfortunately, many average OBGYNs are not trained in the difficult surgical procedures that are able to improve quality of life, while sparing a patient’s fertility when possible, and they also do not refer to specialized surgeons who are trained to do so. I would argue that the lack of all available options presented to the majority of patients is what truly prolongs suffering and causes emotional and physical suffering and trauma.

 

My uterus and I have had a very complicated relationship over the years. I was so grateful to be able to stay pregnant with my daughter, and although I am grateful she is now healthy, I started having contractions with her at 34 weeks and she was born premature via c-section. Over the past ten years my uterus has painfully miscarried 6 times. Month after month, for decades, I have endured its’ bleeding, bloating, and have bent my life around its schedule. If I had gotten a hysterectomy years ago, I would not have developed fibroids or experienced adenomyosis, but, the endometriosis that existed on my bowels, that invaded my bladder wall, my appendix, my gallbladder, and that caused scar tissue on my diaphragm still would have existed. There are patients who have hysterectomies who go on to see excision specialists to have endometriosis removed from other organs, as it is a multisystem disease that not only impacts the reproductive organs.

 

I am ready to let go of my uterus. And while I know that I am so privileged to see a specialist and get the best of care, I am still dreading yet another surgery. I don’t do well with anesthesia and recovery is an emotionally and physically grueling process that I know intimately. The uterus has other functions other than “baby maker.” I worry about potential complications and what the impact will be on my sexual health. Like many endometriosis patients, I worry about what the specialist will find in my pelvis. How bad are the adhesions from my previous 6 surgeries? Will I need a bowel resection? Will my bladder be intact? Will my ureters need to be stented? Will this surgery ultimately improve my quality of life? There are so many uncertainties going forward.

 

During this challenging time, I feel grateful that I am able to share my thoughts and fears with a community of patients who understand.  Talking to others who have been through this has given me the courage to make this difficult decision. I don’t know what the result of this next surgery will be. But, I do feel confident that I have been presented all treatment options and after careful consideration, I move forward with the hope that after healing, gentler days await.

Written With Love,

Casey

Director of Programs and Partnerships, Endo What

Shannon Cohn