Not Again

It was never my intention to use this blog for personal medical news. I wanted to write about the world of ME in general, not just my personal experience of it. And I never expected that other personal health issues would ever be relevant. Yet here we are.

I need a total hysterectomy, a major surgery.

I did not expect this. One very minor symptom prompted my doctor to order an ultrasound. My uterine lining was two millimeters thicker than it should be, so she recommended a d&c. But the pathology results came back with atypical hyperplasia, a pre-cancerous finding.

I turned to PubMed. From my research, I learned that there is a chance that I already have cancer in my uterus, and even if there isn’t, the chance of atypical hyperplasia converting to full-blown cancer is very high. The gold-standard recommended treatment is total hysterectomy. They’ll take everything out: uterus, fallopian tubes, ovaries, cervix.

I’m being very matter-of-fact while also not delving into details here. I wasn’t even sure if I would blog about this at all. But then I talked to another person with ME who has gotten the same recommendation from her doctor, and I realized that maybe my experience will help someone else. Certainly, I wish there were articles and blogs for me to read about ME and hysterectomy. So, I’m writing about it instead.

Thankfully, I have an excellent surgeon. He spent more than 45 minutes answering my questions before he examined me or discussed scheduling the surgery. He expects to be able to do the surgery with robotic laparoscopy, a less invasive method of surgery with a swifter recovery time.

But recovery will be lengthy, even in the best-case scenario. For the first two weeks, I must avoid anything more strenuous than lifting a gallon of milk, although that sounds better than it is. The surgeon said I could climb stairs right away; his nurse recommended I avoid stairs if possible for the first week. My best chance of healing well without complications is to rest as much as possible for those first two weeks, and to continue to avoid anything strenuous until my followup appointment in five weeks. No pushing, pulling, bending, lifting, etc. No abdominal or pelvic exercises. Only gentle walking as tolerated.

Someone said to me that they couldn’t stand six to eight weeks of inactivity. But ME taught me how to do that.

There’s no way to predict what recovery will be like for me. The nurse said that as long as I feel better week by week, then I would be recovering well. I’ve spoken to several people about their experiences, but none of them have ME. One said it was the easiest surgery she ever had and she didn’t need pain medication. Another said she couldn’t get out of bed for a week and didn’t return to normal for four months. Who can say?

Why is this happening to me? I had thyroid cancer in 2017. Non-invasive breast cancer in 2023. Now I have pre-cancer in my uterus. Is this all the result of inflammation from ME? Or do I have some unidentified set of mutations driving all these cancers? Who can say.

I don’t feel much anxiety about the surgery–I’m more angry about it than anything else. I had been making great progress on my book this year. Now that will be interrupted for who knows how long. My daily life involves pain and physical limitations already. Now those will increase for who knows how long.

Yet I also feel gratitude. I am so thankful that my doctor recommended the d&c (and glad I took her recommendation). I have great faith in my surgeon and his team. And I have supportive family and friends who will help me get through this.

Life is like this. It’s good and it’s hard. It rarely goes entirely to plan. Having one medical problem does not insulate you from others. There are no guarantees.