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Blood Clot, Child Loss, life lessons, survival

{Infertile Me} Silent Endo

A part of me wants to be mad at the first three fertility clinics I went to. Like someone along the way should have picked up on the fact that I might possibly have endometriosis plus a side of adenomyosis. Yet no one did and so they shoved me into their one size fits all protocol box. In which in their defense my numbers always looked great so their one size fits all approach worked.

It worked until it didn’t. In Iowa I cycled two times and both were canceled prior to our retrieval date. Dr. Young’s last words to me were “if anyone can get you pregnant, it’s Mayo.” He’s words soaked into me like water to a sponge. Yet I never picked up the phone to make an appointment with Mayo. Instead we explored our options such as foster to adopt and donor embryos.

By the fall of 2019 I had my heart set on donor embryos. I was ok with carrying someone else’s genetic material to term and calling that baby my own. But my heart she still whispered “let’s try one last time. One last time.” My gut gave me the courage to call Mayo for a consult. And on an icy February morning I drove down to Rochester and never looked back.

Mayo takes a team approach to infertility treatments and therefore you need enough of the team to believe in your case in order to proceed. The day of my consult the majority of the team was at a conference and I wouldn’t find out if I was accepted until I got back from my cruise. We did everything on the cruise to keep my mind of Mayo and it worked. Sherri and I had a blast aboard the Carnival Victory. And we soaked in the sites of Key West and Cozumel. It was a trip that I will always treasure.

When I got back the Doc from Mayo called me early Monday morning to tell me that I had been accepted. As fate would have it the university of Iowa called a couple hours later to tell me that we were next on the donor embryo list. That night jay and I weighed the pros and cons. We prayed and my gut told me that Mayo was the answer.

Enter Covid and all of our appointments got postponed. Which was fine by me, people needed the PPE and doctors more than I did. In May I had a pelvic MRI done and was at that time diagnosed with endometriosis and adenomyosis. Dr. Khan could also see plain as day my complicated anatomy on the screen. He explained that we could do surgery now or wait. Wait because if my ovaries had to be cut open I’d loose what little egg reserve I had left.

I chose to wait. In July we did one last Hail Mary retrieval cycle and ended up with two high grade embryos. Which I am still trying to wrap my head around the fact that I have two embryos in the freezer. The team at Mayo was just as excited as we were and they were so glad that we were able to freeze embryos.

Anyways back to the endo, I had my surgical consult at the end of August. During my consult Dr. Khan was once again very thorough and he explained everything to me. He laid out the options and the plan and like before he gave me choices. Hard choices like “if your Fallopian tubes are diseased is it ok for me to remove them? If removed you will be infertile.” Well according to medicine I am already infertile so I said yes to that option. I walked out of his office knowing that we had a solid plan and that one day soon my body would feel so much better.

Surgery day came sooner then I thought it would. The date it just sneaks up on you and before you know it you are in the shower with antibacterial soap that makes your skin itch. My surgery was delayed by 6 hours due to the case prior to me needing more time. I was fine up until hour 5, my hunger and thirst set in and I’d do anything for water. Thankfully a nurse took pity on me and gave me a little bit of water. Soon it was my turn to go down to pre-op. Where when I saw Dr.Khan I asked “did you forget about me!?” He said “how could I forget about you AJ. You are one of a kind.” He once again went over the plan and even the changes he made. He decided it was best to leave the adenomyosis alone because cutting it out of my uterus could cause more harm than good.

Five some odd hours later I was backup stairs in recovery. I do want to add that the post op recovery unit closed at 9PM. Two nurses whose names I did not catch stayed late so I could go home to my own bed. The nurses I had were incredible. They made sure I was able to walk on my own. One nurse helped me get dressed and made sure we had a barf buffet cup (it’s a bucket filled with wipes and Kleenex) to go home with. The nurses wheeled me down to the pickup zone and waited for Jay to bring the car over. On our way down I kept apologizing to them and they both looked at me and told me it was ok. “This is our job. We love our job. We’ll go home tonight and do the exact same thing again tomorrow.” They both gave me a hug and helped me into car and we waved goodbye as we drove off.

There is something about a Mayo Clinic nurse. They truly have a servants heart and away with people. I was always amazed by my Dad’s nursing staff and now to experience it on my own, he’s right when he says “they are the best of the best.” It’s true they are and I am so thankful for the care I received from my recovery nurses.

Rochester is 75 bumpy miles from Burnsville. And I felt every bump HWY 52 had and I’d never been happier to turn into our little street. We got home after midnight and that first night was pretty rough. French fries were a bad idea…..(I’ll leave that for your imagination). But butter toast saved my tummy along with some oxycodone and a little bit of sleep. You don’t realize how much you use your core and pelvic muscles until they are cut open.

Speaking of cutting, Dr. Khan diagnosed me with stage IV endometriosis and an ASRM score of 76, which in normal human terms means, really bad. He told Jay I had one of the worse cases he’s ever seen. Which is strange because I never showed symptoms, my endometriosis was the silent yet naughty kind. He removed endo from my pelvic cavity, abdominal cavity, colon, rectum, ligaments, ovaries, uterus, and a whole lot of other spots too. It’s crazy to me how much damage was done to my body every month and that this had gone undetected for years.

When I think back to the first three clinics, two out of the three saw dollar signs. Especially CCRM Minneapolis, Dr. B claimed to be an expert, yet she missed a lot of fucking red flags. And her arrogance didn’t allow her to seek outside advice on my case. Her kicking me out of the clinic lead me to Iowa. In Iowa Dr. Young did his best to help me, but at the end of the day I was to complicated for him. And I respect his walking away from my case and sending me off to Mayo.

If it weren’t for Dr. Young’s words I’d never would have gone to Mayo. Mayo’s tag line is “when you are ready for answers.” It’s perfect, I was ready for answers and I got answers and explanations to everything I’ve gone through in the past five years. One MRI sealed my fate and now knock on wood I will be living endo free for a long ass time. And with just a little luck and a whole lot of faith I will get to carry our embryos to term.

The lesson I learned in all of this is…. listen to your body. Do not give up on her and keep searching until you find a doctor that will really listen to you and not throw you into the one size fits all box. You are unique and you deserve the very best care. Everyone deserves that. So if you feel you might have endo, go talk to your doctor. And if your doctor doesn’t listen go find one who will. Because living with endometriosis shouldn’t be a death sentence, it should be a piece of your story.

About NinjaInTheCity

AmandaJean is a thriving pulmonary embolism & stroke survivor, passionate Paralegal, Advocate, and Blogger who believes she can change the world one person at a time. She is obsessed with the Law, beauty subscription boxes, collecting costume jewelry, visiting flea markets, Ruby Red Squirt and Candy Corn. World Traveler. Serial Volunteer. Lover of Frank Lloyd Wright, Heart Healthy Living, and good wine. Mama to a Muppet like dog. Aunt to @HalfPintNinja

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