I’ve had the ‘H’ word thrown at me a lot over the last few days. People who care about me, and just want this to be over for me; thinking that a hysterectomy is clearly the best answer. Thinking that I just need to get over this discomfort of mine surrounding the idea (a discomfort I'm sure they believe is fueled 100% by my inability to let go of the hope of one day carrying a child). That I just need to submit to the big ‘H’, and then I can move on with my life.
The problem is that a hysterectomy is not the answer. Despite what so many people (and doctors) believe, it is not a cure in this situation. And for women with stage III and stage IV endometriosis; more often than not, it doesn’t resolve anything.
That’s because with those later stages of endometriosis, the endometrial tissue has implanted itself to areas outside of the reproductive organs. It has traveled to the kidneys, or the diaphragm. To the nerve endings or the liver. It has moved far beyond the reproductive organs. And so going in and removing the ovaries and the uterus really isn’t a resolution. Because it still leaves all this bad tissue throughout the body.
I’ve done my research. I’ve talked to women who have had hysterectomies only to have a recurrence of their endo. I’ve done simple Google searches that produce a plethora of articles just like this. Articles that explain why a hysterectomy should not be considered a viable treatment plan for this disease.
A hysterectomy is not a cure for endometriosis. At least, not for severe endometriosis like I have.
I’ve read, and I’ve researched, and I’ve learned that the big 'H' is not the answer. It’s not an option for me. Because there is a strong likelihood that with my level of endometriosis, I would still be in pain. I would still have issues. There would still be a lifetime of surgeries in my future.
The only difference is, I would no longer have the pieces of me that could one day hold the hope of carrying a child.
I would have allowed a doctor to remove a vital part of my body, without any guarantees at all for relief.
This is the part of Western Medicine that I simply do not understand. The part that says if all else fails, let’s just take it out. I am a big believer that we have these organs for a reason. That choosing to cut and remove at will is compromising everything the body is actually supposed to be. Going into menopause at 27 is not natural. It is not healthy. It would involve a lifetime a synthetic hormones for me. Synthetic hormones which carry along with them their own sets of side effects, some quite scary in fact. Hormones that would likely only serve to agitate the endometrial tissue that’s been left behind.
We are so quick in this society to simply trust our doctors. To believe what we are told, and do what they recommend. But the more and more research I do on this, the more wrong I am realizing that is. Most doctors have the best of intentions, but this is a disease that very few are adequately trained in treating. And so while the specialists who have dedicated their lives to this disease are touting excision surgeries and veering away from hysterectomies and Lupron, the gynecologists and RE's that most of us see for treatment simply don't know any better. They keep doing what they were taught in medical school, even though the research has shown better ways.
From the beginning, I have felt incredibly uncomfortable about the idea of a hysterectomy. I know there are those who assume this is entirely about my inability to let go of the possibility of ever carrying children. And maybe to some extent it is. But there is more to it than that. I have now spoken to countless women who had hysterectomies to treat their endometriosis and have lived to regret it. Deeply. Women who have e-mailed me imploring me to be my own advocated. To not submit to a hysterectomy simply because it's what I'm told I should do. Women who listened to and trusted their doctors, only to face the heavy disappointment as they realized they should have sought the advice of specialists. Because a gynecologist is unfortunately no more equipped to treat severe endometriosis than a family practitioner would be to treat leukemia.
Unfortunately, these specialists are few and far between. Doctors who treat nothing but endometriosis are hard to find. There are RE’s who fancy themselves in that realm, but even they are known to leave some endometriosis behind when they perform these excisions surgeries. From all my research, I am learning that one thing is very clear; if you want real relief, you have to be willing to seek out a professional who specializes in endometriosis treatment and nothing else.
Not one who is going to jump to a hysterectomy simply because they are at a loss for what else to do.
The thing about a hysterectomy is, there are some women who will find relief from it. There are those who will go on to never have another issue. Those who submit to the knife, and then live a relatively pain free life from that point forward.
The problem is, there are also those who don’t. Those who agree to a hysterectomy believing it is the answer, only to be wholly disappointed when they discover it isn’t. And I have to be honest; that is the point where I do not believe I could take it anymore. The point where the heartache would become too much to bare.
Because if a hysterectomy doesn’t work, there is no going back. You can’t change your mind, or take back that choice. You can’t reconstruct what you allowed someone else to tear apart.
If you have a hysterectomy and still find yourself in pain, it’s not the doctor who recommended it who suffers. It’s not those around you who encouraged it who now face that blow. It’s you and you alone. You’re the one who allowed a vital part of your anatomy to be removed, and you’re the one who has to face that it didn’t work and that there are no take-backs.
This is true with every treatment option for endometriosis unfortunately. There are no guarantees, and some things will work for some women and not others. But the difference is, if I spend $10,000 on this surgery with Dr. Cook for instance ($10,000 that I still have no idea how to obtain, so this is purely hypothetical), and in 6 months I realize it didn’t work and my pain returns; all I’m out is money. But if I submit to a hysterectomy and realize 6 months down the line that it didn’t work, I’m out far more than money. I’m out a piece of me that I can’t ever get back. I’m out a dream that I will never be able to revisit. I'm out a world of sacrifice, that didn't work. And until someone has had to face that same choice with absolutely no guarantees of success, they really can’t weigh in.
I refuse to be made to feel like I don’t want relief enough if I’m not willing to consider it. I refuse to be treated like I’m ignoring a valid option.
Because it’s not a valid option. It’s not one typically recommended by those specializing in this disease. It’s an option that involves a lifetime of drugs, and on a logical level doesn’t even make sense if your disease has spread beyond the pelvic area.
A hysterectomy is not the answer.
Not for me anyway.
And it never will be.
Beyond that though, I guess I’m still not really sure what is.
ADSPACE
