Tentatively Celebrating Reduced Symptoms

It makes me nervous to even write this article, but that’s exactly why I’m writing it. I’m certain I’m not the only person with endometriosis who has come to a relatively comfortable moment of dormancy with their symptoms. I won’t utter the word that starts with the letter “r” that folks with cancer use to describe being cancer-free, because I feel like that would really jinx me. But it is true that, since my last excision surgery two years ago, I haven’t had nearly the issues with endo symptoms that I struggled with for years.

I worry, even with few endo symptoms

Of course, I feel relieved about this, but I also feel trepidation. Is the endo secretly growing in my pelvis or elsewhere without me knowing? I know this happens to folks with endo all the time and that older people still struggle with symptoms and lesion growth.

Besides the bloating that never goes away and the occasional twinge in my pelvis, I don’t think about endometriosis much anymore in terms of my own symptoms. My sciatica is nearly gone, the constant pain I experienced pre-surgery is gone, and I am back to hiking and biking and walking.

Removing my ovaries was key to relief

I think that, in my case, this is because I had my ovaries removed. My ovaries were the main cause of my endo trouble. I grew large endometriomas often and my monthly hormonal shifts made me absolutely miserable. On top of that, I react to estrogen (It makes my mast cell activation syndrome flare.),so not having that increased estrogen has made me feel much better.

I am experiencing some side effects from instant menopause, especially heart palpitations and increased anxiety. I don’t tolerate hormone replacement therapy, so I haven’t been supplementing with anything for two years, but I saw my primary care physician recently and she said she was in awe that I’m even standing up. I’m going to try a low dose of progesterone to see if it will alleviate those symptoms. Even though they are annoying and potentially troubling if the progesterone doesn’t help my heart, right now, I’ll take my current symptoms over the incredible pain I experienced from endo.

I am hopeful I will never need endometriosis surgery again

There’s part of me that’s worried the other shoe is going to drop, that I’ll get a reprieve like I did between 2010 and 2015 after my first two surgeries, and then it will be back to pelvic pain, adhesions, and eventually excision surgery. I’m trying not to think too much about that, and my other illnesses keep me plenty occupied with trying out new supplements, medicines, and alternative therapies.

At least if it does recur, I know what to do and how to advocate for myself to find the best care possible. I have this incredible community here to reach out to, and I have been through surgery enough times to know I can make it through another. I certainly hope I never have to endure that again though.

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