***This post is in honor of Andenomyosis Awareness Month. Similar to my post last month for Endometriosis Awareness Month, adeno is a disease that is often misdiagnosed, leaving women and their loved ones to suffer for years, decades, a lifetime. To build awareness, I am sharing my story here.
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A previous definition of "success"
Ten years ago, I started getting a deep ache in my right side under my ribs. As time progressed, this pain transformed from a subtle ache into stabbing attacks. So, I went in for tests. Bloodwork was fine. Ultrasounds didn’t show anything. I was told it was just digestive discomfort. But that didn’t seem right. I went back. I was dismissed. But, eventually, when the attacks started to become more severe one doctor agreed it was likely a gallbladder issue. I was told my only option was to have it removed. I left the office holding my side, as if to protect it from all the unwieldy knives that were being thrown my way.
Take my gallbladder? But I loved my gallbladder! Even though it was being a bit of a dick, it was just doing the best it could. Couldn’t I answer its cry for help in a more supportive way? I didn’t see removal of an organ (my organ!) to be a solution, so I sought out alternate answers.
Eventually, I did a liver and gallbladder cleanse. I went into it mildly terrified, since there is potential of blocking the duct, which can lead to surgery anyway. Nevertheless, out of desperation I tried it and ended up removing stones and gook that, according to all those tests, shouldn’t have been there. But my body had foretold it. I hadn’t made up the pain I'd been suffering with; it had been real! And all those stones were my confirmation.
At the time, this was my definition of success. I beat the system. I got to keep my ailing (and now recovering) organ. I figured out a solution that worked for me and that I was comfortable with. Over the years I’ve repeated the cleanse, with positive results lasting longer each time. Today I still have my gallbladder and no longer get attacks, although the tenderness is still there. Additional cleanses are likely in my future, but I’m fine with that.
Enter Pelvic Pain
In a similar way, I’ve attempted to find some kind of balance with pelvic pain that I’ve had since I was a pre-teen. I now know this pain hasn't been "just period pain," but for a long time that's what I was told, so it's what I believed. I just tried to live life the best I could with the cards I was dealt.
I’ve tried a lot of things: pain meds, antibiotic and antifungal creams for possible infection, numbing ointment and antidepressant to dull painful neuralgia, cryosurgery to treat damaged tissue, birth control pills to suppress unbalanced hormones, physical therapy, psychotherapy, acupuncture, chiropractic and naturopathic care, essential oils, diet changes, supplements, energy work, and the list goes on. There were times I would dive into research, learn as much as I could, sift out specialists, set and attend appointments, and seek/find/fail all the options. And then there were times I would give up and dive into deep despair. And just on the other side of that were all the times I needed to give up and, as best I could, ignore the mounting symptoms and just live my life.
New understanding came during my search two years ago when endometriosis was discovered during a surgery in September 2014. I was in recovery when my husband told me what had been found. “Nooooo,” I moaned, in a kind of grief-stricken cry. He looked at me with some confusion. Even in my drugged haze, I knew enough about the disease to understand it was not a diagnosis that had a clear-cut remedy. When my doctor spoke with me, he said it wasn’t a big deal and that I shouldn’t worry about it. He wasn’t concerned, so I tried not to be, even though I was. As it had before, my body continued to try to convince me of its true story.
My endo was removed using ablation (burning off), a process that has a high rate of return. The gold standard for treatment is instead to excise, or cut out the deeper layer of the disease. Since this wasn’t done, it’s unsurprising that the pain wasn’t resolved, and I intend to have that corrected in my next surgery with an endo specialist. However, in addition to that, I eventually realized that another culprit –adenomyosis–was likely. I’d suspected it years ago, but amid research of so many seemingly unrelated symptoms I’d forgotten about it. The diagnosis of endo brought it back to the forefront.
Adenomyosis is sometimes referred to as the evil step-sister to endo, but it can occur without having endo, and endo can occur without having adeno. With endo, tissue similar to the endometrium (uterine lining that is shed every month during a period) is found in areas outside of the uterus. With adenomyosis, endometrial tissue is found inside the muscle wall of the uterus. Both conditions can be extremely painful, debilitating, and hard to get diagnosed. While endometriosis can only be solidly diagnosed and treated with surgery, adenomyosis can only be confirmed through assessment of the uterine tissue after a hysterectomy. I’m sure you can see the dilemma here for those who suspect either of these conditions. Getting a diagnosis is extremely invasive and treatment options are laughable.
So what does success look like?
In the past, I had perceived the potential removal of my gallbladder as an option that meant failure and the alternate natural route that I came to as a win. I beat the doctors who didn’t have the answers I was looking for. I’d found my way around what was, from my perspective, a broken system.
Similarly, for more than two decades I tried to find a “win” for my pelvic pain and the broad range of other symptoms that came along with it. I sought anything that didn’t involve removal of an organ. Door after door, I hunted. But I’ve run out of doors and I have finally arrived at the only option that is known as a “cure” for adenomyosis: removal of the diseased organ.
Is this a failure?
For a long time, I thought it was. And to some extent, I still view it as a failure of the medical system. Removal of the uterus feels lazy. Of course, I and many other women have tirelessly researched and sought alternate answers. We aren’t looking for an easy way out. When I say it feels lazy, what I mean is that there is not enough funding, research, and education for these conditions. Women are being ignored and mistreated by the current medical system. It’s simultaneously insulting, infuriating, and heartbreaking to come to this version of my finish line, but I know I personally have not failed. Every step of the way I have tried.
Following so much suffering, many women view their coming hysterectomy as an “eviction” day. Parties are even thrown in celebration. While I fully understand and honor that perspective, it’s not my own experience. Instead, as I did with my gallbladder when it was struggling to properly do its job while overburdened, I feel love for a part of my body and sorrow for our coming parting of ways. She and I have been on unhappy terms for a very long time, but we haven’t personally been at war. We’ve struggled together.
When I finally realized I was at a place where I actually wanted to have a hysterectomy, I visualized our separation as a kind of birth and death all at once. Every month I experience something akin to labor. Every. Month. It is a trauma for us both and we will finally be able to release it all. In meditation, I imagined that process taking place, of me carrying her gently in my arms out to the cherry tree in my backyard where a fresh burial plot had been dug, and softly setting her down into the earth. I’m not kicking her out and bidding good riddance. I’m honoring her struggle and my own, realizing the pain we and so many other women know in secret. I'm putting to rest a history that needs to be remedied in so many ways.
I hope that some day "success" for this disease equals healing an ailing organ instead of removing it. But for now, this is what we have. When I finally take this step, I hope for and will certainly celebrate a release from pain and an opening to a new future. I wonder at what new strength I will discover and where it might take me from here. But this isn’t enough. I need to see things change for others in the future, because if my treatment over the last two decades has taught me anything, it is that there is enormous room for improvement. We all, men and women alike, deserve better.
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Tip:
For anyone struggling with pelvic pain issues, know that it will be important for you to be your own advocate. Over the years I often seemed to be more informed than my doctors. Research, bring information and questions to your appointments, and if you ever feel you aren't getting the support and care you need, seek out someone new. There are many online support groups where you can ask questions of those who've gone through the same things you have. Seek them out. We're in this together.
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Clarifying facts:
Pain and other symptoms caused by endo and adeno are not limited to the time of your period. Symptoms can, and often do, exist at other times like ovulation or (as in my case) they may exist all of the time at varying levels.
Adenomyosis is a progressive disease, so for many women it will get worse over time until an eventual hysterectomy is performed.
While hysterectomy is the only known cure for adenomyosis, it is not a cure for endometriosis. If your doctor recommends hysterectomy to treat your endo, it is a red flag. Excision (cutting out the diseased tissue) of endometriosis is the gold-standard for treatment; while there is still a chance of recurrence, the rate is much lower. For both diseases, there are lots of other options for treatment that may be helpful, but they usually end up being band-aids or stalls to eventual surgery. Hopefully the future will lead to better options.
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