When Surgery Isn't Life-Changing

In December of 2023, I had a life-changing surgery that did not change my life. I woke up in the hospital bed with my legs shaking uncontrollably from the many drugs they had given me so I would not feel my abdomen being cut into and inflated. A robot was inserted to help carefully detach my uterus from my bowels and cut away lesions hugging my pelvic nerves and affecting other organs, including one of my ovaries.

Endometriosis surgery was successful

It was endometriosis excision surgery, and for the next 6 months, I felt free. I had not had such good health since my early childhood; The disease had robbed me of my teens and most of my 20s. I suffered for years, and good days were far and few between. I categorized good days as those without any pain. During my teen years, I went from having a few bad days to having a bad week. Then it was 2 bad weeks. In my 20s, I was in pain for 3 weeks, and then that became the whole month. My possibilities for a good life shrank as the endometriosis grew inside of me.

My surgeon was incredible, and his expertise was supported by surgical training and teaching from Europe, Asia, and the United States. He successfully removed the endometriosis in its entirety. He had warned me of another lurking issue, but I had chosen optimism. I so desperately wanted those decades of suffering to be over.

Then a sister disease took endo’s place

So it was particularly disappointing when, in June 2024, my periods started getting worse again. The pain was no longer limited to a couple of days as it was after the initial recovery from surgery. I noticed it creeping into a full week, and by August it was 2 weeks. All my fears returned. Was my life over, again? Would it keep getting worse?

The remaining issue is adenomyosis, the "sister" or "cousin" of endometriosis. It’s a disease that causes endometrial tissue in the lining of the uterus to grow into the muscular wall of the uterus, which enlarges it and causes pain and very heavy bleeding. While endometriosis cannot be cured (Even if it is removed, the body still has the mechanisms of the disease, and it can grow back and require more surgery.), adenomyosis can be cured. You can get a hysterectomy. Or go into menopause.

Try telling that to me, a woman in her late 20s, unsure of her childbearing future. And someone who is perhaps too informed and uncomfortable with the cardiac effects that taking out the uterus too early in life can cause.

Trying new hormones

So here I am, a little over a week into taking norethindrone, and taking more prescription medication than I am used to taking to cope with the side effects of the hormones and the pain of adenomyosis. The norethindrone is supposed to eventually decrease the growth of my uterine lining so that when it sheds, it is not so painful and extreme. Some lucky women even stop getting their period at all on this hormonal drug, and since I am set to take it every day in perpetuity, I have a chance.

If the norethindrone does not work, I have already tried different treatment methods before my surgery. The combined pill caused a rare, dangerous response where the veins in my legs swelled up. Intrauterine devices (IUDs) caused worse pelvic pain, cramping, and bleeding that never stopped. My next viable option is likely a hysterectomy, and that is a tougher pill to swallow than any of my current prescriptions combined.

Options mean hope

Despite this reality, I choose not to give up hope and encourage other women to keep trying the other treatments and even surgeries that are an option. As long as there are still options, no matter how daunting they may be, they still have the potential to be life-changing.