One in ten women suffer from endometriosis, a chronic illness for which there is no cure. I am 1 in 10. Because March is Endometriosis Awareness Month, I decided it was an appropriate time to share this specific part of my infertility journey–my endo story . . .
My Endo Story . . .
SENSITIVE POST WITH POSSIBLE TRIGGERS: Detailed accounts of my infertility journey, including mention of surgery, treatments, “p,” littles, and more…
Just shy of our three-year wedding anniversary, my hubby and I decided that it was time to grow our family. But two years later, we still weren’t pregnant. My ob-gyn couldn’t find anything wrong, despite running several tests. So, we finally decided that it was time to see a fertility specialist.
After completing pages of paperwork, we went in to find out when we could start treatments. Instead, we learned that the doctor thought I should have surgery. He believed that our infertility issues were due, in part, to the fact that I most likely had endometriosis. But the only way to find out for sure was to conduct a laparoscopic surgery.
At that time, I was 29 years old, and this was the first time I had ever heard of endometriosis. Per my doctor’s recommendation, we delayed fertility treatments, and I had surgery. As he suspected, I did indeed have endometriosis. It was stage 3 (bordering on stage 4) and was wrapped around one of my ovaries and my appendix. In fact, there was so much scar tissue that the doctor removed my appendix for fear that it was going to burst.
After surgery, I was eager to begin our fertility treatments. Unfortunately, the doctor advised me to complete six months of Lupron in order to get rid of any microscopic cells that might still be present. Although he told me that there was no cure for endometriosis, he said this treatment would help slow down how fast it grew back.
So, again, I took the doctor’s advice and delayed fertility treatments. Instead, I went into medical menopause for six months. Let me tell you, no one should have to preview menopause! I didn’t have hot flashes. I was just hot. All the time. I had headaches. Every single day. And the mood swings? Well, let’s just say that people had to give me a lot of grace during this time. The only thing that made me feel better was a chocolate shake. So, I drank one. Every day. And I promptly gained fifteen pounds.
Before my last shot of Lupron, I cried to my husband, telling him that I did not want to continue this horrid medicine because it made me feel so completely awful. He tenderly encouraged me to finish, sweetly reminding me that I needed to get healthy so that we could get pregnant and have the baby we so desperately wanted. So, I took the last shot, hoping and praying that all of this would be worth it…
After that wretched medicine got out of my system and my cycle returned, I was shocked. I never knew that you could have a period without cramps and back pain. In fact, I never realized how much pain I was in until it was gone. I always thought cramps were normal. Every teenage girl complains about cramps. But then, I thought back to my mom waking me up in the middle of the night to give me Ibuprofen because she said I was moaning in my sleep. And I realized that my pain had not been normal.
Unfortunately, just a couple of short years later, the cramps returned with a vengeance. Plus, we still weren’t pregnant, despite three rounds of fertility treatments. When I asked about another surgery, my gyn told me she could refer me to another fertility specialist. Since I wasn’t ready to get back on that roller coaster, I settled for muscle relaxers, which did help with my cramps and back pain. And I just kept living my life, thinking endometriosis was nothing more than a major annoyance that caused me pain and the heartbreak of infertility.
Nearly fourteen years since my surgery, I am learning that this chronic illness is much more than that. After discovering EndoTough*, I’ve realized that my “I just don’t feel good, but I don’t know why” is actually caused by this illness. Discovering that my fatigue and sad moods are related to endometriosis has given me power. I no longer feel like I’m lazy because I just don’t have the energy to cook dinner or like there must be something emotionally wrong with me because I’m down for no apparent reason. There is a reason. And it’s named endometriosis.
This new knowledge has empowered me to improve my health. I’m taking vitamins and using essential oils to balance my hormones and improve my moods. I’m allowing myself to rest when I need to, but also encouraging myself to exercise because that helps alleviate symptoms. And I finally found the courage to once again talk to my gyn about what we can do to help relieve my pain.
Since I’ve accepted my childless life, I will not be going to a fertility specialist! I will, however, continue to learn and to speak up. No one should have to accept that being tired, depressed, and in pain is normal. I will continue to fight until we find a cure!
*My Endo Story was first published two years ago on EndoTough. Because that blog is no longer active, I decided to share it here at Not So Mommy… (with a few minor tweaks).
Learn more about endometriosis…
If you are interested in learning more about endometriosis, check out the following:
- Good Things: Endometriosis Awareness Month
- The Truth about Endometriosis
- Coping with Endometriosis, Menopause, & Grief
- Managing Menopause, Endometriosis, & Anxiety
- Endometriosis is NOT simply bad period pain: A two-part Webinar
More Blogs to Come…
I plan to share more information about endometriosis this month…
- Next Monday, 9 March, I will discuss another aspect of the endo story, the dreaded “endo belly,” in detail.
- Monday, 16 March, I will share facts about women’s health issues, including endometriosis.
If anything I wrote resonates with you, please tell us about it in the comments.
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Featured Photo: Created by me, using Canva
Many doctors are woefully stupid about endo. I was told when I complained about the agony that kept me up all night that “‘pain is a good thing: it means everything is working right!” (ha how wrong could they be?), and “you’re very lucky to have light periods: you’ll save money” (extremely scant and short-lived painful bleeding is a very overlooked symptom of endo: mine was stage 3 at that time). Any awareness is good so thank you!
I’m so sorry that you had to deal with such insensitive and ignorant comments from medical professionals. It is shocking how many do not understand endo at all…
Even with the research I’ve done, I did not realize that “extremely scant and short-lived painful bleeding” is a symptom of endo. Thank you for sharing that valuable information. This is why speaking up is so important!
I never had endometriosis – as far as I’m aware – (though I’ve certainly had period pains that woke me at night and send sympathies) but I know plenty of people who were only diagnosed during their infertility journeys, or even AFTER it. It’s really a great blight on the gyn and GP services that so many women are just told to suck it up, bear the pain, or that it is in their mind. It makes me so angry. This week in our local newspaper was an article about a girl of 18 who, after years of pain and being dismissed by doctors, finally self-diagnosed when she was about 15. A child shouldn’t have to self-diagnose!!! Argh.
I’m glad that you are speaking up about this, as have other No Kidding bloggers. Increasing awareness is really important.
Thank you for reading, commenting, and supporting this important women’s health issue conversation, Mali. It is absolutely unacceptable that a teenager self-diagnose because of dismissive doctors. You are correct–“Increasing awareness is really important.”
Not knowing about endometriosis and not getting you help is one of my greatest failures. I’m so proud of you sharing your story. If it educates one person you have succeeded.
You are much too hard on yourself. If my gyn never mentioned endo, then how could we have possibly known? (Only about 20% of the general population has even heard about endometriosis.) I will definitely keep speaking up about this misunderstood disease in an effort to raise awareness and help someone else, though. And I know you will, too. So many hugs…