Broken Body: Endometriosis & Adenomyosis

What the hell is Endometriosis and Adenomyosis?

Let’s start off with Endometriosis. Endometriosis occurs when the cells from the uterine lining plants in areas outside of the uterus. They thicken, break down and bleed each month. Here is the problem – the implants have no way to leave the body. Laparoscopy typically allows the doctor to make the most thorough evaluation of the condition, and how extensive it is. Endometriosis can occur at any stage in a women’s reproductive years. I fully believe I had Endometriosis starting in my teenage years. I wasn’t diagnosed until the age of 31.

Adenomyosis occurs when endometrial cells exist and grow into the walls of the uterus. The cells are affected each month with a woman’s period. The result of these periods can be an enlarged uterus, pelvic pain and heavy bleeding. A doctor may suspect Adenomyosis based on an evaluation which could include a pelvic exam, ultrasound, or an MRI. It is said that Adenomyosis can only be truly diagnosed after a hysterectomy. When I went in for my 100th evaluation, I was suspecting Endometriosis. The doctor told me he believed I had Adenomyosis. The Endometriosis was found with a Laparoscopic procedure, and my Adenomyosis was discovered after my total hysterectomy was completed. Adenomyosis commonly affects women in their forties and fifties. It can also occur among teenagers. I believe I was affected as a teenager, and I believe this is the main reason I could not have a baby.

What does Endometriosis and Adenomyosis feel like?

While these two conditions are similar; Endometriosis is on the outside of the uterus, and Adenomyosis grows into the uterine wall. One is on the outside, the other is inside. Both can cause pain, but endometriosis doesn’t always cause the heavy bleeding like Adenomyosis does. The best way to describe my symptoms was severe cramping, heavy and prolonged bleeding and sharp, knifelike pain. While the conditions are not life-threatening, they can diminish quality of life.

What does this have to do with fertility?

If I am questioned about my journey or my infertility, I will usually respond with “I had a broken uterus.” I was diagnosed with Endometriosis, Adenomyosis and Uterine Fibroids. My wonderful uterus had all 3 conditions. How was a baby suppose to implant, grow and thrive in that environment? I have heard of success stories, but I never had a positive pregnancy test in my reproductive life. When I was diagnosed with Endometriosis, and after years of trying to get to that diagnosis, we decided not to pursue IVF. My doctor felt that I had Adenomyosis too, and with that I wouldn’t even attempt IVF. Even if the embryo implanted – there is double the chance of miscarriage. This was a personal choice. There is always hope that a miracle will happen, I am not trying to discourage anyone from giving up just because of a diagnosis.

On average, it takes 10 years for a woman to be diagnosed with Endometriosis. 1 in 10 women are affected by Endometriosis. 30% to 50% of women with Endometriosis may experience infertility. 27 years old is the average age women are diagnosed. 176 million women in the world have Endometriosis.

Adenomyosis – My uterus is trying to kill me. The only surgery that cures Adenomyosis is a hysterectomy. Adenomyosis is poorly understood and is often under-diagnosed. This condition can lead to anemia. Anemia can cause fatigue, dizziness and irritability. More research and knowledge needs to be obtained because There is no known cause for this condition.

Be your own advocate! That is always my number one rule of advice. It took me almost 20 years to get the correct diagnosis. I suffered for years and years, and in the end I couldn’t do the one task my reproductive system was suppose to do – create life!

Ask questions, make the appointment, find the solutions. There is no current cure for these conditions, but there is hope that one day they will find one!

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The Infertility Doula

I am a infertile woman with no biological children. My infertility stems from endometriosis and adenomyosis. I work and live in Duluth, Minnesota. I am married with five dogs and have an adult stepdaughter.

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