UTERINE ABLATION VS. HYSTERECTOMY: A PERSONAL STORY

~This post is a personal story from WERTH co-founder, Maya Holihan

I got my first period at the age of 13 and from that day until I was 50 years old felt tortured by heavy bleeding and excruciating cramps with every menstrual cycle. I was prone to fibroids and ovarian cysts too. The closest I got to any relief was when I was put on a birth control pill in my teens, which I took until my late twenties.

I noticed in my forties that my periods were lasting longer and the bleeding was so bad it was sometimes like a constant flow of water running down my legs for hours at a time. It got to the point where I was bedridden the first two to three days of each cycle. It was a summer outing on Martha’s Vineyard where I experienced what I like to call, the bottom falling out, and I bled profusely through a crisp white pair of jeans - that compelled me to visit my OBGYN to find a solution for the state of menstrual hell I was experiencing.

After an MRI she recommended a uterine ablation. I was not familiar with the procedure, but was sold on the fact that it’s much less invasive than a hysterectomy and there was a high chance that my periods would end for good. A uterine (also known as Endometrial) ablation is a surgical procedure that is used to remove or destroy the endometrial lining of the uterus. The goal of the procedure is to decrease the amount of blood loss during menstrual periods.

I went forward with the procedure, and as described, it was outpatient and life went back to normal pretty quickly. I stopped getting my period too, which was amazing. However, while I was no longer bleeding, the cramping was horrific. There were moments when I was on my bathroom floor writhing in pain…but at least I wasn’t bleeding.

Fast forward four years. I turned 50 and still wasn’t experiencing periods, so I was certain I was going through menopause. I was wrong. About three months after my 50th birthday I began bleeding and cramping. I was bleeding about 20 days out of the month and the cramping pain was at an all time high. During the time between my ablation and my most recent bleeding episodes I changed health insurance providers, so I had a new OBGYN. Upon visiting her she ordered an MRI. The results showed that my ablation had failed and I had a fibroid the size of a grapefruit infiltrating my uterus.

My first surprise was learning that an ablation can fail. I was never told this by my previous OBGYN. Had I been given this information I would’ve opted to go ahead with a hysterectomy. I wasn’t having more children and was in enough pain to eliminate any risk of it coming back, but I wasn’t given the option. It wasn’t until my second MRI that I learned about late onset ablation failure (LOAF). This involves the abnormal regrowth of the endometrium in the months or years following the procedure.

Additionally, I found out that fibroids should be removed before an ablation. I had a small fibroid, but it was far enough away from my uterus that my original OBGYN felt it was safe enough to do the procedure without removing it. She was wrong. That small fibroid is the same grapefruit-sized one that was now taking up residency in my uterus.

Needless to say, the only course of action at this point was a hysterectomy. Due to the size of the fibroid and my uterus I had to undergo a full abdominal hysterectomy. This involved getting cut along my bikini line just like in a c-section birth. I also opted to have my fallopian tubes, ovaries and cervix removed. When the doctors cut me open they could see that my uterus had wrapped around my bowels. I was having horrible bloating and constipation prior to the surgery, which I’ve now learned was due to the entanglement between my bowels and uterus.

After my surgery I was diagnosed with adenomyosis - another “female condition” I’d never heard of. The Mayo Clinic describes it as such: adenomyosis occurs when the tissue that normally lines the uterus (endometrial tissue) grows into the muscular wall of the uterus. The displaced tissue continues to act normally — thickening, breaking down and bleeding — during each menstrual cycle. An enlarged uterus and painful, heavy periods can result.

The only way to diagnose adenomyosis and cure it is to have your uterus removed.

There are so many misnomers and complexities when it comes to reproductive health. It’s so vast that often you don’t know what you don’t know, and from my experience, too few doctors that will take the necessary time to break everything down in terms that are easily digestible and layout multiple courses of action. In my case, it meant years of unnecessary pain, prolonged health issues, and an 8” scar along my lower abdomen.

I’m five weeks post-surgery and I feel like a whole new woman. I have more energy, no bloating or constipation, and I’m shedding weight I was holding onto for the last few years. Additionally, I’m on estrogen patches that have essentially staved off any symptoms of menopause. I wish I was given the knowledge and the option between an ablation and hysterectomy four years ago, because I would’ve opted to have a hysterectomy, which at that time could’ve been done laparoscopically.

If you’re suffering with similar symptoms or have a parallel menstrual journey as I did, and you don’t have faith in your healthcare providers, I hope my story helps you ask more questions and advocate for the course of healthcare that you desire and deserve.