Adenomyosis, Endometriosis, and Tumors

Warning: Period and Reproductive Health Talk Ahead!

Adenomyosis, Endometriosis, and Tumors

Today’s blog post is all about my reproductive health, so I apologize for those who couldn’t care less. This is going to be long and some parts may also be a little TMI. You have been warned.

Adenomyosis, Endometriosis, and Tumors

Diagnosed with Endometriosis

It all started because of my painful (and heavy) periods. I suppose I didn’t really know mine were heavy, but they lasted longer than most girls and in order not to leak I had to double up on products. I knew that wasn’t normal.

I also knew that I suffered from cramps in a worse way than other girls. I’ve always had a high pain tolerance, but my periods would bring me to my knees. The pain was so bad I would literally vomit. After suffering from a period that lasted over 2 weeks, my mom finally took me to the doctor for some tests.

When I was 15 I was diagnosed with endometriosis as well as PCOS. For those who don’t know, endometriosis is basically where the lining of the uterus (the endometrium) grows on the outside of the uterus and can cause organs to attach themselves to other organs through bands of tissue called adhesions.

At 17 I had excision surgery to remove endometriosis/adhesions. I can’t remember all the details about where it was and what was adhered to what, but I do remember feeling some relief.

Fertility and PCOS/Endometriosis

While everybody’s story is different, I was told that I would never have biological children, and if I did it would require a lot of fertility treatments.

I believed that…

Kaia - Born after struggle with Endometriosis

until I had my first child, without any sort of treatments.

And then another..

Pregnant with second child - spina bifida

and still another.

Third Child - 26 weeker - Baptist Health Arkansas

My fertility hasn’t been affected to the point of being infertile, but I do struggle with cycle related issues and staying pregnant. I don’t always ovulate. My progesterone isn’t where it should be (resulting in preterm labors). My ovaries form cysts. My hormones are out of whack. And my cycles last much longer than the typical cycle length. I didn’t really suffer from the weight gain or facial hair until these last few years.

About 2 years after my first excision I had my first child unexpectedly and without any fertility treatments. After birth, I still had pain, but it was nothing like before (I kid you not when I say labor and child birth was nothing compared to my periods).

Abdominal Wall Endometrial Tumor

My last child was born via emergency cesarean section. During the c-section they found out that my placenta was not only drying out from my water having been broken for 10 days, but also growing into my uterus (a condition known as placenta accreta) and had to remove a tiny portion of my uterus in order to fix that problem.

These past few years I have been struggling with what was at first diagnosed as an endometrial abdominal wall tumor. This is a somewhat rare tumor (from endometrial tissue) that happens after a c-section.

The worst part for me (besides the obvious pain) was the inability to exercise. I used to be so in shape, but once this tumor started growing, I began bleeding every time I tried to exercise. I ultimately stopped doing the sport I loved the most – running.

See this post on Life As A Convert where I previously discussed my struggles with running and endometriosis

Ultrasounds and Laparoscopic Surgery

Prior to the abdominal wall tumor being diagnosed, I had an ultrasound to see what was going on. The thing about endometriosis is that it doesn’t show up on an ultrasound. In order for it to be diagnosed, you have to go in surgically. So, when my ultrasound came back “normal” but the lump was still there, I knew something was going on.

I made an appointment with my doctor to discuss options. Because I still had hopes of having another child, a hysterectomy was off the table. Instead, he chose to go in laparoscopically and take a look around.

I went in for the results today.

Enlarged Uterus w/ Bladder Attached

It turns out, there wasn’t an abdominal wall endometrial tumor as originally diagnosed, instead my uterus is enlarged and my bladder is attached to my uterus (somewhat common with c-sections). My doctor seems to think if my uterus wasn’t enlarged then my bladder wouldn’t be attached so bad.

There were some mysterious spots on my uterus that the doctor did not seem concerned about as he said it could be scar tissue from previous surgeries, or fibroids on the inside making themselves known. The tumor that was palpable was likely a combination of my enlarged uterus/adenomyosis and fibroids.

There were some spots of endometriosis which were left untouched and a pretty large adhesion to my bowels which he released. He also said that the majority of my endometriosis is on the inside of my uterus (called Adenomyosis). This, along with the fibroids can cause the enlarged uterus.

Because I do not want to be on hormonal therapy (been there, done that, hated it), my options are limited. (Hormonal therapy does not treat the problem, it only masks the symptoms)

What’s The Plan?

For now, I just wait and see if things get worse/show no improvement. Having another child biologically is no longer an option and guts me. But, my uterus wouldn’t be able to handle it.

The only way to fix the problem is to remove my uterus. The extent of the attachment is pretty severe. I can speak with a urologist to see if they think separating the two is doable, but the weakened uterus still poses a threat. And with my history, I don’t think that is a wise option.

While this isn’t the news I wanted to hear, it could have been worse. I get to keep my uterus for at least another year before discussing a hysterectomy. A part of me feels like as long as I can keep it, that there is hope. But perhaps that is just wishful thinking.

Another part of me realizes that in order to be the healthiest me, I need to have a hysterectomy and I’m not ready to accept that.

Do you know anybody who suffers from endometriosis?
For you mamas who had c-sections, did you guys experience any of these complications?