For the third time this week, I’m on my own helping the kids with their homework, driving them to and from sports activities, feeding them dinner, cleaning up the kitchen, and putting them to bed. My wife is upstairs in bed, in pain that is so excruciating that the only way she can cope by the end of the day is to load up on painkillers and sleeping pills and go to bed as early as possible. While ferrying the kids to their activities, I spend the drive worrying about how my wife is holding up, particularly emotionally. This is not an unusual occurrence for her. And for me, worrying about my wife is part of the life of being an endo husband.
My wife has had endometriosis since she was 13, but it only became debilitating when she was in her 30s. In the last decade or so, she has tried every type of medical and alternative treatment available, searching for solutions to her pain and many other related symptoms and secondary complications. Every day, we talk about how she’s doing that day. She rates her various organs on a pain scale of one to ten. “My bladder is a 7 this morning, unfortunately, but my gastrointestinal system is only a 3, and my uterus and chest pain are barely noticeable, so today isn’t too bad so far.” After the morning pain report, we often discuss medication strategy and any other health-related topics, trying to come up with the best plan for that day for my wife to minimize pain and get the most out of her day. This type of conversation is also part of being an endo husband.
Endometriosis is a particularly complex disease because it can affect almost any organ in the body. Every patient experiences it in her own unique, but usually excruciating, way. An implication of this fact is that, ideally, a team of specialists (especially surgeons) is needed to provide the best care possible for this disease, led by a highly trained laparoscopic excision surgeon/gynecologist. Unfortunately, this type of care is rarely available. More typically, women are simply prescribed one type of hormone therapy or another, and sent home to cope as well as they can. Their pain is often explained away by doctors as being either hypochondriacal, or drug-seeking. Considering how common and debilitating this disease is, the quality of care for most women is truly appalling. As a husband who has watched his wife suffer terribly for years, I have had a close-up, but second-hand, education in what it is like to have a chronic disease that the medical system doesn’t care much about.
Years ago, my wife and I would have discussions about how she should handle conversations with friends and colleagues about her disease. As a naturally introverted person, it went against my wife’s instincts to talk about her body and symptoms in a frank way, especially since her period or ovulations were inherently involved in her symptoms, not to mention organs such as bladder and bowels. My position was always the same: “Just tell them the truth. Don’t hide anything or gloss over anything. Why should you? You haven’t done anything wrong!” Eventually, my wife got used to having these types of conversations. It makes some people uncomfortable, but that’s their problem, not hers.
As an endo husband, I have gradually come to feel a sense of disgust and outrage at how ignored this disease, and the women who suffer from it, are. Research is virtually non-existent compared to other major diseases. Coordinated care is rare. Misconceptions and misinformation, even among gynecologists, is rampant. There is no standard of care, no evidence-based treatment guideline. Women are left to figure it out largely on their own.
Incredibly, my wife is in many ways one of the luckier victims of this disease. She is a Ph.D. scientist, so she can research the scientific and clinical literature while trying to determine the best care possible. She has a strong network of family and friends (including many women with endo). She was able to keep a half-time job until recently. And we have three beautiful children to help keep her motivated to fight this disease tooth and nail, even when it’s at its most discouraging and hopeless.
When my wife asked me if I would be interested in writing a brief article about endo from the perspective of a support person, I quickly agreed. I welcomed the opportunity to make the same plea to all women with endo that I made years ago to my wife. Please, tell anyone who asks how you are doing the whole truth. Don’t hide anything or gloss over anything. After all these years of watching my wife struggle and suffer, there’s one thing I’ve learned the hard way: The only way this disease will stop being invisible and ignored is if all women affected by it (and their partners) speak up together, and demand change. This is what endometriosis awareness month is all about. And this is my fervent hope as an endo husband.