Hysterectomy at 40 | My “Cyst-ers” and Endometriosis

My goal with writing this blog is to bring a real awareness to endometriosis. I know this isn’t a pretty topic, but if I can help just one woman get to a diagnosis more quickly it will be worth putting myself out there. As a woman and a mom, I know what it’s like to put everything and everyone before myself. I unnecessarily struggled with debilitating pain all because I wouldn’t allow it to become real. I pushed myself through the pain until I had no choice but to face my health head on.

Endometriosis - Inflammatory DiseaseAbout 6 months ago I noticed an abnormal lump in my abdomen. As you can imagine, once I noticed the lump, it was all I could think about. Your brain instantly goes to the worst-case scenario. As a working mom who travels extensively, I wasn’t able to see my doctor right away. My busy work life was just was the crutch I needed to continue to avoid my fears. When I finally did see my general practitioner doctor, my fears were renewed because he wasn’t able to immediately identify the growth in a CT scan. After being referred to a gynecologist I underwent a pelvic ultrasound. That’s how my doctor identified two complex cysts located on my ovaries and a golf sized fibroid.

Due to the location of the cysts (which Mike affectionately renamed my cyst-ers), my doctor explained that that I would need a full hysterectomy. He would be removing my uterus, ovaries and fallopian tubes. I had been in such debilitating pain leading up to the diagnosis, my initial thoughts were “let’s do it! How quickly can you get it done?!” I so desperately wanted to eliminate the pain I wasn’t thinking about anything else. Then my doctor explained a full hysterectomy would mean my body would go into surgically induced menopause and I would need to be on a hormone replacement therapy.

I couldn’t help but worry what this would mean for my body. I’ve always worked hard to eat the right foods, use all-natural beauty products, and avoid endocrine disrupting toxins. Yet here I was, facing this life changing surgery that would require taking hormones to avoid symptoms like hot flashes, anxiety/depression, low libido, fatigue, weight gain, and mood swings to name a few. All of these symptoms describe the opposite of who I am and the person I aspire to be. I suddenly felt so out of control.

As the pre-op tests continued over the next several months, my doctor then brought up something that I had never heard of before. He informed me he saw signs of endometriosis, including scar tissue outside of my uterus. And while I displayed signs of endometriosis, he would not able to fully diagnose my condition until he actually performed my laparoscopic hysterectomy.

What is endometriosis?

Endometriosis is an inflammatory disease caused by endometrial tissue growing on the outside of your uterus. In a normal woman’s body, the endometrial tissue is on the inside lining of your uterus and breaks down and leaves your body during your menstrual cycle. When this tissue grows on the outside of your uterus, there’s no way for that tissue to leave your body. Instead it becomes inflamed and may even form scar tissue.

What are symptoms of endometriosis

Symptoms of endometriosis can include:

  • Extreme menstrual pain and cramping even when you’re not on your period
  • Heavy periods and bleeding in between periods
  • Infertility or difficulty conceiving
  • Pain during or after sex
  • Bloating in the abdomen area
  • Diarrhea or constipation or pain with bowel movements and urination
  • Fatigue
  • Nausea

While I often felt bloated and tired, the most severe symptoms I experienced with endometriosis included extremely painful menstrual cramping before, during and after my period. I would literally lie in bed with a heating pad, curled in a fetal position. For me, pain killers brought little to no relief.

Diagnosis of Endometriosis

It wasn’t until after my surgery that my doctor was able to confirm I did in fact have endometriosis. He was able to successful remove my cyst-ers, fibroid and the endometriosis. After surgery, my doctor acknowledged how much I must have been suffering with every period. It wasn’t until that moment I felt heard. I had tried to relay to my doctors the pain I had felt with each menstrual cycle and finally, a full hysterectomy later they believed me.

The struggle with endometriosis is there isn’t a way to conclusively diagnose the disease without a laparoscopy. For me, the existence of my cysts and fibroid made the laparoscopy a natural step. But what about all the women suffering with this condition that don’t have a definitive reason to operate? My hope for any of you out there feeling these symptoms is that my blog will encourage you to seek the immediate help of a doctor who specializes in endometriosis. For me, I saw three different doctors before reaching the doctor who would ultimately identify the condition.

Post-Surgery Endometriosis

I’m now 1-1/2 weeks post-surgery and already feeling relief from the pain. Sure, I’m feeling some pain from the surgery. Not too bad though — it mostly feels like I just had a good ab workout. The good news is the intense cramping pain I had before is surgery is gone. As for the hormone replacement therapy, my doctor has decided not to put me on hormones for 6 months. The reason is that estrogen can actually cause the endometriosis to come back. While I trust my doctor’s decision to wait on hormones, I’m sure that means I’ll have an interesting road ahead as my body adjusts to the rapid decline of estrogen, progesterone, and testosterone levels. I’ll be sure to continue to share my story as it unfolds.

In the meantime, I’d love to know if any of you darlings have gone through a hysterectomy or endometriosis treatment? What was your experience like with hormone replacement therapy? It would mean the world to me if you share your advice or experience in the comments below.