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Heather’s Story (Adenomyosis, Endometriosis)

Heather's Story EndometriosisFirst, I would like to say I am so comforted–although I wouldn’t wish this pain on a single soul–to know I’m a) not *entirely* insane–I do have a very long history with panic/anxiety disorder and insomnia–and b) there’s an answer, which carries a long road ahead, of course.

I’d like to start by addressing that although it wasn’t a cake walk by any stretch–my heart breaks for those who have had infertility issues; it truly does–I’ve been very fortunate to have had three pregnancies/children. All were early deliveries with progesterone injections necessary in the second and third, after the first pregnancy was a very tough go, resulting in a 31 week delivery. All were C-sections with an abdominal myomectomy for multiple extremely large tumors in between my first and second child. I’ve battled fibroid pain/tumors, endo, IBS–I’ve had constipation for up to 7 days on the regular over the years; hello super fun re-occurring hemorrhoids!–and large ovarian cysts for the past 12 years, along with agonizing periods dating back to the 5th grade. Then finally, my last procedure was a tubal ligation to ensure I would never get pregnant again. According to my multiple doctors/specialists, a uterine rupture would be inevitable at this point, and now Adenomyosis has entered my world and taken over my life. Perfect timing with an 11-year-old, a 2-year-old, and a 3-month-old.

In addition to the Adeno, I have a completely separate problem: my uterus will not drop from the pregnancy/delivery. It’s stuck in the ‘four month pregnant position’–pardon my lack of medical terminology; I’m almost 13 weeks post partum–and is very enlarged and tilted. My obgyn who has been my hero from day one, the day I got pregnant at 23 and everything in between (I am now 36), is very concerned the endo will fuse to my bladder. The bladder pain has been a huge challenge for me. It’s the feeling of an untreated, never-ending UTI. Peeing makes me want to hold on to the walls while doing so! But my guess is you all know all about that. As a last ditch effort, I’ve started hormone therapy (Aygestin) to stop my period altogether and help the PMS symptoms and pain therapy. I take Mefenamic Acid before bed and Tramadol to get me through the day. But with two tiny beings to take care of, I’m very careful as to what I take and when.

On February 15th, I have an appointment for another/final exam. If my uterus hasn’t made any progression in its descent, we’re going for the partial hysterectomy to remove the uterus. No plans for any other organs at this time. My uterus has always been the enemy! I’m praying this can be done laparoscopically. He will go in that way, but if the organs have fused, it is likely I will have to be reopened for the fifth time.

It’s been so disheartening, so disappointing and frankly very depressing. I’m hanging in there–thank you Xanax,  Zoloft, Ambien, and a very understanding husband–but I’m normally a super active person. I love to run and do any form of cardio. I was a Zumba Instructor, enjoyed weight lifting and taking 4-5 mile a day walks a few days a week with the kiddos in the stroller. Anything I could get my grubby little hands on! These days, the most physical I get is changing diapers and putting on pants, which by the way are either sweats, yoga pants, or maternity leggings. Nothing that is remotely constricting. I’ve been fortunate without exercise in my life that all of the baby weight has gone away, minus my endo/uterus baby, but my guess? STRESS and constant worry, on top of how painful eating can be–as many of you know, the bloat struggle is real–has been the source of the weight loss. The only reason this pleases me, not just for “vanity reasons,” is because I’ve read that weight and BMI play a big factor in your surgery options and recovery process.

Thank you everyone out there for helping me come to the terms that I am not alone. This has been a very isolating process. Thank you for your blogs and stories and friendship, for women who understand me! This outlet has been EXTREMELY encouraging and made me very hopeful for the future!

Good luck and hugs to all of you ?

Submitted 01/13/2016

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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  1. Heather Schopper

    The irony in reading your story. I’m also Heather. I had endometriosis and adenomyosis. And within 6 months of being diagnosed with the adenomyosis, I was told I had cervical cancer. I was 26 at the time. 8 1/2 years after the partial hysterectomy, I was diagnosed with ovarian cancer. So now all of the parts are gone. March will be 11 years. And although it was a long, painful and frustrating road, I’m so grateful.
    I am truly sorry that you are going through this. I completely understand what you struggle with. I will say that there is a light at end of the tunnel, even though I know it might now feel like it. All of my recuperation time gave me time to see what is important and what I wanted to do with life. That there truly is so much more beyond the Drs and the pain and the daily blah feeling.
    I’m now 45. I gave birth to 3 beautiful children and I helped raise 6 others. They understand what true struggle, love and devotion is. I will finally be graduating with an Associates in June. I find I love life more than I ever thought possible. I am more compassionate than I thought I could be. All because of the things I went through, that lead me to the here and now.
    I know there are days that it feels like a never ending battle inside your own head…… Learn to take a deep breath, enjoy the babies smiles, treasure every hug and try to be present in just that moment.

  2. Rebecca

    I’m also an adenomyosis and endometriosis warrior! You are definitely not alone!! You can read my story here –

  3. Kristy

    You are a beautiful , strong, Endo Warrior:)
    I also endure the pain and isolation of Endometriosis.
    It has robbed me of my active lifestyle. You are not alone!
    I’m also in IL. Stay Strong sweet endo sister♡

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