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.
About 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.
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
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 ????????
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.
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 ????????
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.
Thanks darling! I know you have had your own struggles so those words mean so much coming from you. ????????
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!
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
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.
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.
I am 47, and I had a total hysterectomy 3 weeks ago today. I was having a lot of pain in my pelvic area and back aches along with fatigue. I am a nurse and do 12 hour shifts. Being on my feet that much did not help at all. I had a cyst on my right ovary and a fibroid on my uterus. When the doctor got in there, he said I also had endometriosis and he cleaned it up. He put me on divigel for the hormone replacement. It comes in very small foil packs and I rub into my outer thigh every morning. So far I have not seen any changes. I’m still having some pain and I still have backaches. They aren’t as bad as they were though. My doctor is calling a new script in for me to a compounding pharmacy. He said they will customize what I need for the hormones. He said they can make me feel 18 again.. lol.. I said bring it on and my husband said “just kill me now ” haha. You get your blood drawn once or twice a year and they see what you need and compound it all together so you get what you need. Thanks for sharing, hopefully more women speak up and help each other out!! Good luck to all!
Hi Brenda! Thanks so much for sharing your story. As women we definitely push our bodies to their limits. I’m so happy to hear your pain level is improving and hope you are on your way to being pain-free. As I mentioned in my blog, I haven’t started any hormone replacement therapy yet. I’m still hoping to find an all-natural hormone therapy. I’ll definitely keep you posted. In case it helps, be sure to check out my post-hysterectomy tips here: https://thetennillelife.com/2018/07/27/managing-post-hysterectomy-symptoms-hot-flashes/
Best of luck to you too darling!
Hi. I love your blog. I went through a TAH hysterectomy a few months ago. For 12 years, one beautiful 11 year old boy later, the fibroids kept growing. I eating amazing and followed every fibroid shrinking strategy I could for 12 years. Ultimately, this decision was made by my body. Physically, my biggest issues are fatigue and keeping my skin youthful and glowing. I’m an administrator and I’m known by all for my joyful spirit and boundless energy. I have my ovaries but I would love tips!
Hi Akilah! Thanks so much for your support…it truly means the world to me. I certainly believe that radiant skin starts from within so I maintain a low fat / low sugar, plant based diet with lots of water. As for beauty products, sunscreen is my first layer of defense plus my tried and true beauty products. Check out these blogs for some of my favorite products and beauty secrets:
https://thetennillelife.com/2016/10/27/bee-yummy/
https://thetennillelife.com/2016/10/11/rosehip-oil/
https://thetennillelife.com/2018/11/15/never-leave-home-without-my-sio-beauty-eye-patches/
https://thetennillelife.com/2017/06/28/my-post-flight-natural-skincare-routine/
https://thetennillelife.com/2016/12/17/but-first-wheat-grass/
And of course, let me know if you have any questions!
xoxo,
Tennille
Hi Tenille
Thanks so much! I will look into those recommendations! Have you noticed that your color of your skin is changing? I know that our color comes from hormones too..have you noticed it too?
Akilah
I haven’t experienced that but it is common (along with many other skin related problems ughhh). Your body stops producing as much collagen during menopause. A few tips to help: 1) Practice a good skin care regimen to keep your skin moisturized and products that help restore collagen are important. 2) Exfoliate and use sunscreen everyday to help with skin discoloration and sunspots. 3)And last but not least, I highly believe your skin is a reflection of what you put in your body. A healthy diet with antioxidants and soy can help improve thinning and strengthen your skin. Hope that helps darling! xoxo Tennille
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[…] was a time when I was battling endometriosis that I didn’t have the confidence to rock a form fitting dress. Now every time I put on a […]
I just had a hysterectomy on May 26, 2020. I was having very bad periods where I was going work with extra clothing and underwear. I was loosing a lot of blood and passing out. I had a couple of other procedures that didn’t work me for years. When I found out that my vagina walls had cancer cells and one of my ovaries were not working before I decided to have the surgery. I was supposed to have the surgery in March I was scared because my doctor asked me did I want to have a full hysterectomy or partial. I thought about menopause, my hair turning grey and everything that came with it. I prayed and talk to my girl friends who had the surgery to see how they felt. Then my spirit said you will feel better and I don’t need the box anyway because I have grandchildren and I am not going to try to have anymore children. I am glad I had the hysterectomy. I feel good now I am trying to my life.