Our mission is to increase endometriosis awareness, fund landmark research, provide advocacy and support for patients, and educate the public and medical community.
  • Endo Shop
×
Donate Now

Why I Don’t Believe in Permanent Remission from Endometriosis

Why I Don’t Believe in Permanent Remission from Endometriosis

When I recently heard the word remission used in the same sentence as endometriosis, it stopped me in my tracks. Usually that term is only applied to cancer—and endo is a benign disease. Could a permanent reprieve be possible? What would it look like to me personally? Am I in remission? 

Or is remission just a state of being asymptomatic?

The definition of remission is “A diminution of the seriousness or intensity of disease or pain; a temporary recovery.” The opposite of this would be a relapse. 

I picture endometriosis as an aggressive beast growing in my body. It always seems to be putting down roots in places it doesn’t belong. After twenty years, I can usually sense when something’s wrong. And yet there are other times I never see it coming. An endometriosis expert might define endometriosis remission as “complete and partial response to treatment, where some people have a complete response, and though they may still have pain, their pain is sufficiently controlled that they get their lives back.” [Shakiba et al., 2008]

Others, like me, often get a partial response, or a relapse, and then we are back to where we started. I have read that 72% of women aged 19-29 have repeat surgery within seven years, and I wish I were in the 28% who do not have to go back again.

The chronic pain I endure reminds me of bad recurrent dreams. I never know when I'm going to have them. Or wake up from them. That’s not to say I don’t also experience grace periods of pain-free living. But when I’m actively ill, it’s hard to remember those rose-tinted days. Sometimes the pain is there, but bearable, and I can wear lipstick and rock a top-knot. I can pop pills when I need to, and disguise the worst of it. At other times, there is no way to hide it.

I’ve had many excision surgeries over the years, as well as a partial hysterectomy. I’ve taken plenty of different medications that suppress the symptoms of the disease. And yet endo has always come back after all these things. This makes it incredibly difficult to believe in the concept of a continuous remission. 

Isn’t the interval after every surgery just a temporary recovery?

Sometimes these interventions make the beast sleep, and I live without the dragging feeling of chronic pain. I bloom in what I perceive as total remission, and it’s so easy to forget about my condition. But eventually those lulls fade, and I am faced with the vicious cycle all over again. 

I know in my bones that endo will raid my body again. That doesn’t mean I don’t make the most of my good days. I’m so grateful to feel normal for a change. And it’s not like I walk around with a fatalistic attitude when it comes to my health. I just see accepting endo and its nature for what it is as being realistic.

There have been so many times I’ve gone under the knife thinking, Please let this surgery be the one that ends this destructive disease for good. I’ll take the risks. I'll take the grueling recovery. I’ll take anything to not feel like I’m only half-living.

I used to believe I would wake up a new and improved woman. And these glorious periods would last for a while—until the wretched beast suddenly reared its head again.

Remission can look like different things to different endo sufferers. I just want to be someone who doesn’t have to worry about the state of her health, where any hint of pain doesn’t send me into an emotional tailspin. During my last operation, I was sure my specialist would find the beast’s secret hideout. When I woke up and he told me he got it all, I was so grateful that he had finally killed it.

Or so I thought. 

Five weeks later, I was back in his office. That same old anguish was once again brewing under the surface. At that point, I had gone through probably ten surgeries. I was tired of “battling” endo. Of being a “warrior.” I didn’t want to give in and let the beast win, but I also didn’t want to keep buying into what seemed like an improbable pipe dream. 

I wish there was a way to get permanent relief from endometriosis, but I don’t believe I’ll ever be clear of it because its back-and-forth nature is my lived experience. I’ve passed through the revolving door of gynecologists, anesthesiologists, chiropractors, naturopaths and pelvic physiotherapists. In my last appointment with my specialist, he proudly declared me “endo-free.” The biopsies he had taken during my last surgery showed no evidence of disease. 

I asked him why the pain I was still experiencing felt the exact same as before my operation. He put it down to a muscle issue and referred me to a pain management clinic. But what about my quality of life? I wanted to scream at him. Or the fact that it’s impossible for me to be a good mother and wife? 

What does it mean when the actual endo is gone, but the damage it leaves behind stays with you forever?

Will I end up needing more surgeries to fix those problems? If I continue to have issues post-op, am I really done fighting this disease? Its effects aren’t going anywhere, unless a surgeon goes in again, which they stop wanting to do at a certain point. Or they’ll just say it’s too soon. Sometimes we have to be put back together from the ravages of this disease. Doctors often put the blame on irritable bowel syndrome (IBS) or spasms of the pelvic floor muscle. Often, it’s none of those things, and could, as in my case, turn out to be a mess of scar tissue that forms in new places and binds organs together.

But endo doesn’t care about medical degrees. Jill Rabin, a professor of obstetrics and gynecology at Hofstra North Shore-LIJ School of Medicine, has said that even with more-invasive approaches, 10-15 % of hysterectomy patients still go on to experience a recurrence of pain because they end up have lesions on their bladder or bowels.

All people with endometriosis want is to stay in some sort of indefinite remission. But this state doesn’t usually last. And then the vicious cycle of doctors’ appointments and invasive tests starts all over again. It is all so psychologically overwhelming, and a lot of women go on to develop medical PTSD. The toll of multiple surgeries on my body is something I am still unpacking.

To me, remission only means temporary relief—and constant monitoring. It’s like I always have to be vigilant to prevent it from coming back. I don’t think it’s possible for every person affected by endo to achieve remission, or maintain it. There will always be exceptions to the rule, of course—the success stories we don’t hear about on Facebook support groups—but they seem to be few and far between. 

I know some people swear by nutrition and lifestyle changes that work out for them. Their endo doesn’t come back, at least as far as they know. But what if they only feel better on the outside, and inside the beast is still raging on?  

I still consider myself as having endometriosis. For me, remission also means no more pain and no more surgeries. But who determines the amount of time you have to be asymptomatic before you’re declared endo-free? 

I don’t believe in a full remission, and I’ve accepted that reoccurrence is likely. I know that what I experience after surgery is only an intermission. After twenty years, I’ve learned that there are no built-in guarantees about ridding myself of this life-long disease. To stay sane and cheer myself up, I try to stay in the present moment and enjoy all the respites as long as they last.

References:

Shakiba K, Bena JF, McGill KM, Minger J, Falcone T. Surgical treatment of endometriosis: a 7-year follow-up on the requirement for further surgery. Obstet Gynecol. 2008 Jun;111(6):1285-92. doi: 10.1097/AOG.0b013e3181758ec6. PMID: 18515510.