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.

10 Comments
  1. Hello Tennille! I had one in June due to 5 fibroid tumors. My doctor took out my uterus. I still have my ovaries so I haven’t experienced minapause yet. I’m 44 with 3 girls and a female chihuahua. My hubby is the only male in the house. So good thing he doesn’t have to go through my mood swings quite yet. Not having a cycle is wonderful, and even better the pain is gone! I know you will be fine. Get well girlie. Thanks for sharing! Many blessings.
    Makia Kiné

    1. Thanks girlie! With two daughters myself, I can certainly relate to house full of girls. So happy to hear you are pain free. Many blessings to you too 🖤🖤

  2. Hi Tennille! I had a hysterectomy when I was 29 years old and I also had cyst and I suffered from endometriosis. I am now 64 years old. I do not take hormone replacement, never have. My problem is that I need to lose weight.

    1. Thanks for sharing your story with me Stella. The responses and direct messages I’ve received from women like you has been overwhelming (in the best way possible). I’m so happy to have the chance to connect with so many amazing women like you. I know losing weight can be a big struggle for us women. But knowing what you’ve been through, I already know you are strong and you will achieve your weight loss goals! All the best to you 🖤🖤

  3. I have not had this experience. However I do have PCOS which causes a myriad of its own issues. You told me about the surgery months ago, I could tell you didn’t feel well. It is empowering to open up about our journeys (the good bad and ugly). I believe it gives others strength and encourages them to do the same. We are never alone in our circumstances, even though at times it feels that way. Thank you for opening up, sharing and being vulnerable.

  4. I work with Norm, which is how I learned about your blog a while back I have enjoyed all your blogs but wanted to respond to this one. I wish someone had shared their story this honestly with me years ago, when I was experiencing all the same, painful issues. No one talked about it and I felt very isolated in my pain and with all the decisions I needed to make at that time. So thanks for the fun blogs (I went out and bought a lipstick you recommended and my daughters and my husband like it!), and thanks for the courage to share your personal hysterectomy story. They touch many of us in many ways!

    1. Thanks so much for following along Ann! But most of all, thanks for sharing your sweet words and inspiring me to continue to share my truth. As women, we all bare our own personal struggles and it’s not always easy to open up to those around us. It’s so comforting to know that we are not alone.

      P.S. I’m so delighted to hear your daughters and husband liked your lipstick xoxo

  5. Thank you so much for sharing your story! I’m facing something similar and your story is so helpful and inspiring. Thank you, thank you, thank you.

  6. I haven’t, but my BFF is having surgery in September to remove it. I don’t even think she’s 40 yet. Maybe 37-38. She’s dealt with it for a long time and like you, none of the doctors she’d gone to weren’t diagnosing it correctly. I hope it goes successfully as yours did.

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