ICN Education & Support Phone Line
Will Be Closed While Jill Recovers From Surgery
Next week I’ll be recovering from an urgent hysterectomy and waiting anxiously for my uterine biopsy results. This saga began last fall when I started spotting. Of course, I hadn’t had a period in about two years so contacted my doctor and asked for advice. He wasn’t too alarmed at the time and neither was I. We both thought that it related to my modest use of estrogen. I knew that it came with some risks but I felt safe. No one on either side of my family has ever developed a hormone driven cancer (ovaries, uterus and breast).
I didn’t approach hormone therapy lightly. In fact, I was determined to “cold turkey” menopause and had used no hormone therapy even though I began perimenopause in my mid 40’s. At about the age of 52, I developed some urethral burning. It felt like I had a drop of urine stuck in my urethra that simply would not come out. After I tried every self help strategy I knew with no success, I finally threw my hands in the air and went to my urologist. He explained that the urethra is often the first to react to the loss of estrogen and found that my skin was indeed showing estrogen depletion. It took about a week of using very small amounts of estrogen cream before that symptom resolved completely and if I forget to use my estrogen cream, that symptom comes back. I love my estrogen cream. I do.
And so, I went on my merry way through menopause. About a year later, I began struggling with extreme leg cramping, another symptom of my dotage. Of course, those lovely post menopausal short term memory gaps were also becoming a daily reality. I found myself asking “What was the name of that IC researcher who discovered xyz?” Normally, that info would be at the tip of my tongue. It was so frustrating! So, I asked my OB-GYN if I could use some oral estrogen and he agreed, as long as I also used some progesterone to pre- vent periods. Life was good. My memory improved. I was able to concentrate at work as long as I didn’t click on any social networking links (GAH!, don’t get me started about Facebook!) Cramping improved. I was good, until I wasn’t.
Last Fall, I started spotting. It was initially very light but, in December, got more intense. On the Friday before Christmas 2016, my doctor measured the length of my endometrium during one of those oh so awkward pelvic exams. It was 6mm. Normal is 4mm but, again, given my estrogen use the doctor wasn’t that concerned. He proposed that we reduce my estrogen for three months and try to force a period. So, from January through March, we did just that. I know you women can relate to that feeling like you’re going to burst, just waiting for that period to start. I felt that every day for 3 months. Alas, no period. We measured my endometrium again and it had grown to 8mm. That was not a good sign.
I had my first hysteroscopy in late March 2017. Oh joy. Who would have thought that they could pry open a cervix and suction out some lining while you’re awake in the office. He numbed my cervix with the biggest needle I’d ever seen with a few quick shots of lidocaine and it took just a moment to get a tissue sample. It wasn’t that bad. My sister and I actually stopped at two nurs- eries on the way home though once the anesthesia wore off, I needed a little Norco. That biopsy came back with no cancer but with suspicious growth, suggesting a polyp or endometrial hyperplasia.
With a deep sigh over the phone, my Ob-Gyn said “We have to do a D&C to take a closer look at your entire uterus.” It was a simple outpatient procedure and I was home in just four hours. My biggest worry was being able to urinate after the procedure as well as pain control. The anesthesiologist just used propofol and it worked like a charm. I was able to urinate very easily afterwards. The post op recovery was a breeze, just two days of pain meds and then I had to wait. And wait. And wait. And wait for the dreaded biopsy results.
Just two days ago as I write this, my Ob-Gyn called me. I knew things were bad when he said “We just got your results back from Stanford. We sent them there for a second opinion.” I held my breath. The results said that I had “Complex endometrial hyperplasia with a vague architectural complex. Adenocarcinoma cannot be excluded.” And I cried a LOT. In fact, I haven’t really stopped crying. It’s right there, sitting between ears, cancer. The risks are in my favor. They said that there is an 80% chance that it’s benign and a 20% chance that it’s malignant. These cancers are very slow to grow and usually confined to the uterus. And so, as you read this, I am recovering at home and waiting for my biopsy results.
This the first time time in 24 years of running the IC Network that I will not be able to answer our phones or help patients for an extended period of time. I’ll be off work for at least four weeks or longer. I’ll probably be driving myself crazy reading romance novels (it’s my secret indulgence – I can’t read IC research before I go to bed), working in my butterfly garden and quilting.
I’m staggered by the emotions that I’m feeling. I’m so deeply worried that this could exacerbate my IC. I told my surgeon that I didn’t care about my uterus. I’m 56. I don’t need it anymore. But I do need a healthy, uninjured bladder and pelvic floor. And because I’ve worked with so many of you over the phone, I know that hysterectomies can be very painful and have a very long recov- ery time. I hope that I’ll be able to do my stretches to keep my SI joint strong and pelvic floor relaxed.
My other key worry is pain control. So many patients today have been denied pain care, even some with cancer. My Ob/Gyn has promised me that he will provide pain care for the short and long term if necessary. That said, I’m still absolutely terrified.
I’d like to thank the ICN Medical Advisory Board and other national doctors for answering my plea for feedback and advice. They all agreed that a total hysterectomy was the only and best option given my biopsy results. They also had some sage advice about surgical technique (robotic got top ratings) and post op recovery which I hope to share in a future article.
Someone once asked “Where does the support group leader go for support?” For me, I come to you, our ICN members. I appreciate any and all prayers and good wishes you have to offer. For the first time in years, I have to admit that I really need support. ::sigh::
Update – May 31, 2017
I want to thank everyone for your very kind words of support and encouragement!!!!! Your prayers worked! I received my biopsy results last night and there was no active cancer. So, we got it out before cancer could develop! This is the first time in five months where I can finally relax and let the stress of a cancer diagnosis go.
I’m still recovering from surgery. It was only a week ago. So I’m walking slowly, holding my belly and not sitting for long periods of time…. but the worst is over. THANK YOU! THANK YOU! THANK YOU!! You have no idea what your cards, notes and emails meant to me. I’m so incredibly grateful. – Jill 🙂