Endometriosis Brought me Here

I just got home from my annual OB appointment and poured myself a giant glass of wine. The final chapter in my long ass book of infertility just got closed, and it wasn’t a doctor that closed it- it was me. I’m struggling a bit with letting that settle in. I still have scars on the insides of both my arms from all my blood draws, and the out of pocket bills we paid for our fertility testing could line the insides of the Taj Mahal twice over. But I, a director of merchandising for a yoga website, self-diagnosed what had broken me. The doctor just confirmed it. Endometriosis.

“A general lack of awareness by both women and health care providers, due to a “normalisation” of symptoms, results in a significant delay from when a woman first experiences symptoms until she eventually is diagnosed and treated.”
Nnoaham KE, et al. Impact of endometriosis on quality of life and work productivity: a multicenter study across ten countriesFertil Steril 2011;96(2):366-373.

New studies are coming out showing that the hormonal imbalance caused by endometriosis negatively impacts egg quality in young women. The inflammatory environment combined with elevated hormones impact the ability for eggs to form appropriately. I’ve spent years wondering why my eggs were so “bad” at such a young age. Why would I make so many and then the embryos would just die off by day 3 in the lab due to “maternal issues”? All my panels came back perfectly. I was the spitting image of health. What was wrong with me? I now know that my endometriosis had gone silent. All the years of birth control and fertility meds kept it from rearing its ugly head like it has the last two years. They don’t know the full correlation between the two, but they know there is one.

Endometriosis also impacts the ability for an embryo to implant. My daughter has become even more of a miracle today than I ever could have imagined. Not only was she our one and only embryo, she implanted and went full term in a secretly hostile environment. She’s been a fighter since she was in that tiny petri dish. The idea of the fact that I had a higher chance of miscarrying her than I knew terrifies me. Instead of letting my mind go to the what ifs, I need to be so grateful that despite the odds she joined us and made me a mother.

You know your body best. If you feel something is wrong, bring it up, don’t just accept it. Even the best doctors don’t always have all of the answers, and tests don’t always catch everything. I spent the last 2 years in debilitating pain, simply because I’d assumed if it was endometriosis the doctors would have caught it. I was legitimately terrified of my own body, and I allowed for the issue to grow to the point where I was legitimately planning my life around my period app. At this point my uterine lining has even grown around my sciatic nerve, causing sciatica during my cycle. My periods last two weeks. My cramps have me doubling over in a cold sweat. It didn’t need to get this far for me. I deserve better. I should have advocated for myself sooner. I’d pretend things were fine at my annual exams since I didn’t want to look like a complainer. Frankly, the only reason that I got answers yesterday was that I was finally completely transparent with all of my symptoms and told the OB that I legitimately could not live this way anymore. I didn’t hide it, or try to stay strong like I always had in my previous appointments. I was tired of just dealing with it and attempting to cover up the symptoms with loads of pain meds and clotting drugs.

It didn’t need to get this far for me. I deserve better. I should have advocated for myself sooner.

Why is it that when it comes to periods we were raised to think that some people just have them worse than others and have to deal with it. That’s not the case. There’s a cause. There’s always a cause. Force them to find it and let you know what it is. Who knows, it may impact your fertility 10 years down the road. There may be other treatment options. Get the data that you need to make informed decisions about your body and your future. I’d been treating my heavy cramps and periods for years before becoming a mother with birth control, with no idea what my actual problem was. Why didn’t I ask them why I was needing to treat myself? Why wasn’t my first question WHY is this happening to me? Who knows, maybe that could have prevented all my fertility challenges. I can only imagine how many women are silently dealing with this type of pain, simply because they don’t want to look like they are complaining or are uncomfortable talking about it. Why am I embarrassed to share that my periods last 2 weeks? Why is there such taboo around the female reproductive system? I want for us to be able to go in and say “hey, I literally am in so much pain I can’t leave the house”. I want to be able to buy my tampons in front of a line of people and not be embarrassed about it. Let’s talk about this stuff. Let’s make it not weird. Removing the stigma around this will allow many woman to live healthier lives and potentially catch a lot of problems before they no longer have a solution.

Treatment for my endometriosis starts with going back on birth control, which opens up a whole other can of emotions for me. Science has told me I’ll never have another baby, but I never wanted to fully shut that door…….just in case. But now I’m having to choose between my quality of life and not only closing but locking that door to another pregnancy. Had I come to terms with Thea being an only child and decided to stop hoping for a miracle pregnancy to happen? Yes. It took me some time, but I got there. I was finally ok with emotionally closing that door. But I wasn’t prepared to physically close that door. Knowing for 100% certainty there will never be a chance for another child has been hard for me to swallow.

It’s ok to find myself grieving again. I can finally grieve the WHY around my infertility. I’d grieved the not knowing, but having an actual cause allows for full closure. How does one grieve something a second time but in a different way? Especially when I do have a child, and am a mom? I can grieve the moments I’ve lost with my family these past few years since I couldn’t get out of bed. I can grieve the loss of any hope for a future child. I can grieve the fact that I wasn’t as much of an advocate for myself as I thought I was. But I can also be grateful that I finally have that answer that I never thought I would get in this lifetime. And it’s time to add another line to my bio- “Endometriosis Advocate”. I’m going to learn everything I can about this nasty disease and help support others that have been impacted. Endometriosis brought me here. It’s part of who I am. It’s what made me a mom to such an amazing girl. It’s what helped me create relationships within the infertility community that are stronger than I’ve ever experienced. But it also no longer will be able to control me how it has been. I’m finally taking charge.

2 thoughts on “Endometriosis Brought me Here

  1. Lady, you know I feel you on this. I was 33 or 34 when a doctor told me that other hormone testing had showed just how abnormal my fertility was and that I had a less than 20% chance of conceiving, even with “massive intervention.” Then a couple of years later, I had uncontrollable bleeding and no amount of meds would fix it. My life was in danger. So I got a Mirena and that solved it. But the week before I got it, I cried a lot thinking, “this ends the miracle scenario where I somehow magically have a baby.”

    It’s just about time to replace my Mirena. I’ll probably cry again but not as much this time because I’m here. and because we know now, that even if I had opted for “massive intervention” controlling my body to not kill itself without direct-delivery hormones is a no-go. Knowing helps us focus on the options we do have.

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  2. Another great blogpost! I’m so sad this was something you had to write, but imagine you will make a big difference for others in your advocacy.

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