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Sunday, June 10, 2018

chronicles of a decade of uterine fibroid woes

"You may not be able to have children," my doctor said to me, after telling me I'd need surgery to remove a grapefruit size tumor from my uterus when I was 24 years old, unmarried and not even thinking about kids yet besides knowing to my core I wanted them someday.

That was the day I learned what a uterine fibroid was... and the start of my 11 year journey of dealing with those annoying, painful monsters inside my body. From Googling, I realized that 80% of women get these things but they barely bother anyone. It's more like 20% of us who are bothered by them with painful symptoms like excess bleeding, excruciating periods, clotting, needing to wear extra layers, bloating like you can't describe, gaining weight, problems with fertility, etc.

I learned that typically women don't get these things until they are in their 50s... not their 20s. I learned it meant I possibly wouldn't be able to get pregnant.

Fast forward to last summer where I had a hysterectomy, my sixth and final surgery because of fibroids. I'm stronger, healthier and freer now. I've lived through all of this chaos in my belly, and hope to share with you my experience so you feel less alone if you're going through this or another health issue.

Above: My swollen bloated fibroid filled belly last summer before my surgery... looking and measuring from the doctor to be about 5-6 months pregnant size. 

Fibroids, now what?
I ended up having a surgery in the summer of 2007 to remove a grapefruit size fibroid from my uterus in order to preserve my baby-making parts for my future. Fibroids just keep on growing, so typically you need to deal with them. Every six months I was scheduled for an ultrasound to see how things were going in there, and during my first post-surgery ultrasound they found that 5 more fibroids had grown to the size of a grapefruit together... so I was scheduled for a second surgery the following winter. It was terrible.

When I went in for my first surgery they were planning to try for laparoscopically, two small incisions on the sides of my belly while inserting cameras to do the work, shorter recovery. When they tried that way, they saw my fibroids were larger and more invasive so needed to open me up in a surgery called myomectomy. When I woke up from full anesthesia, very groggy in and out of recovery, I said to the nurse, "Kids? Kids?" She asked me if I wanted to see my kids? I repeated, "Kids? Can I?" Asking if I could have children, or if they'd had to remove parts of my reproductive organs during the surgery, a risk I'd signed off on before the surgery and one that terrified me. It was all I ever wanted, the reason I had these surgeries, to preserve my insides for when I was ready to have babies.

Myomectomy surgeries are painful, worse than a C-section, as they cut a tumor out of your body versus removing a baby from a sac. It's an 8 week recovery. They send away the fibroid tumor after the surgery to test for cancer, but 99% of the time or so they are benign tumors. Still, that fear is always there.

When you have fibroids, you may not ovulate regularly, you may have longer periods so less of a chance to ovulate. When you get pregnant, it could implant in the wrong location due to the location of fibroids, raising your risk of life threatening situations like ectopic pregnancies. I was told if I do get pregnant, to see a doctor right away to ensure that the egg implanted in the right location.

So I had two surgeries, and my doctor told me to start making babies sooner rather than later or else I'd just keep making fibroids.

Fibroids can be hereditary. I learned my grandmother had them. They can be based on your color of your skin, weight gain and hormones.

I had ultrasounds every six months to ensure the fibroids weren't growing too large. They tested my iron levels often to prevent anemia and I had to take iron pills often to deal with the loss of iron from so much extra blood loss with periods.

Fibroids are a pain physically and metaphorically. I was grateful to have strong doctors who were proactive in helping me preserve my fertility with those two surgeries. My surgeon was incredible. It's to him that I credit my ability to have had my three children.

Fibroid Frustrations
Because of fibroids, I carried extra pads and liners with me everywhere. It took me months after my last surgery to get rid of them all - in my purse, glove compartment in the car, diaper bag, office desk drawer, work bag, lunch bag, every bathroom in the house, gym bag, ETC. I kept them everywhere, at all times needing them just in case. I had spare clothes available at all times. I slept uncomfortably.

Extra strength Tylenol helped with cramps. Staying home some days helped as well, just curled up and resting. Drinking lots of water helped. Decreasing the hormones in my body helped slightly- getting off birth control pills, never drinking milk at dinner, eating low-dairy diet and changing over to organic meats made small differences. It was all-consuming, it was always something I had to focus on, deal with, consider. Fibroids consumed my life - times I couldn't work out because of the bleeding, times I worried about how far I could walk heading to a restaurant without bleeding. It was ridiculous how much effort and energy these monsters took from me.

Above: The day before my hysterectomy surgery, my three miracles hands on my uterus saying goodbye and thank you for bringing them into the world for me. I'll never forget this moment and all it symbolizes that I went through to have these beautiful babies. 

C-Sections and Preparing for Hysterectomy
Because I'd had two prior myomectomy surgeries to remove uterine fibroids, this meant I needed to have C-sections scheduled for my three births of my children. It's a lot safer this way after having had surgeries. I didn't mind this, I was just so grateful to have the babies!

During my pregnancies, they monitored me closely as a higher risk pregnancy with my history. There is a strong link to fibroids and miscarriages. A person who has already had prior uterine surgeries has a strong chance of delivering pre-term or having uterine rupture if going into labor. These are life threatening conditions. I had ultrasounds every month during my pregnancies, which was a tiny bonus to having fibroids- seeing my babies more often and ensuring their growth. Fibroids feed off of hormones, which you produce a lot of during pregnancy... so in some cases the baby can compete against fibroids to take the hormones and food, leaving some babies not growing as they need to be. In my cases, the babies kicked the fibroids butts in there, thankfully, growing normally!

I had a miscarriage a few months before I got pregnant with my third baby. We can't be sure what caused it, but possibly the fibroid. After that point, I met with a few different doctors, trying to decide if we should go for another pregnancy or remove another fibroid that was growing to be mid-to good size already. I decided, after so much consideration and praying with my husband, to go for it... it was a scary decision, knowing the fibroid in me was already mid-size and could cause issues.

After my last pregnancy, where there was a large fibroid growing alongside the baby, I experienced degeneration of a fibroid. It was the most excruciating pain I'd ever felt. It was sharp contractions over and over and over all day long for a week, but they weren't real contractions. I thought I was going into labor. This was about 5 months along, I think. I was in bed most of that week, calling out of work a few days. It hurt to walk, I couldn't sleep. Sharp shooting pains in my belly because the fibroid was being cut off from blood supply, degenerating, dying. I had read that this could be a good thing, that the fibroid may shrink and go away after this painful experience... I had read that it could put me into pre-term labor... I was terrified. My doctors monitored me closely, but found it was just a process the fibroid was going through and nothing I could do about it, but the baby was just fine. He was kicking away in there totally oblivious, thankfully. It passed and all was OK. It didn't end up eliminating my fibroid though, which was a disappointing point.

I delivered my healthy baby boy, after many scares directly related to my fibroid - worry about lack of growth, lack of movement, not being able to measure the baby correctly for tests because the fibroid was in the way, scheduling to deliver two weeks early instead of one week due to my prior surgeries, etc. Thankfully he made it!

After my last c-section though, I never stopped bleeding... for 9 months straight, many health scares, visits to the doctor, ultrasounds and terrible tests and procedures, my doctor determined it was time for a hysterectomy. It was a very long, moody and scary time in my life... all the while caring for a newborn.

Bye, Bye Uterus and Fibroids
The hysterectomy was a really big decision to make. I knew we were done having children. I'd had my tubes tied during my third c-section. We were complete. Our family was perfect with three kids, and I felt my health and body couldn't handle another child anyway so we were happy with this decision. No regrets.

However, when I signed the papers to have a hysterectomy... that was difficult. It was so final. I cried on the ride home. My husband talked me through it on the phone, saying how lucky we were to have what we have. I knew this. I was ready to be done, physically, but emotionally it's hard to imagine closing a door you'd had opened for a long time.

The hysterectomy recovery wasn't fun but wasn't the worst surgery either. I had to rest a lot, taking two naps a day for a few weeks, and not lifting my 9 month old was challenging of course that summer. I couldn't go swimming the entire summer... but I instantly felt so much better, no bleeding and carrying on with my life.

Now, almost a year later, I'm stronger, 10 times healthier, more active and fit, and so much happier. I'm able to chase my kids around now. I have 1000 times more patience and focus. I have not regretted my decision to go for hysterectomy one single minute. The recovery was tough, I won't lie... but I'd been through 5 surgeries before that, all of those were harder than this. I had finally reached the light at the end of the tunnel. That was worth it.

I didn't realize how bad things were for me, how preoccupied by fibroids I had been for a decade... until they were gone and I was so much happier - less hormone fluctuations of course now - and healthier. I'm grateful for my journey, as it brought me my three miracles in the order they were supposed to come to me. Even my miscarriage taught me so much, that I don't regret having to survive that experience.

I'm just glad it's all DONE now! Here's to being strong and happy for many years to come with my amazing family. So grateful my husband stuck by me the whole time with so many mood fluctuations and health issues. He was my rock for sure.

Picture below is me a few days before my hysterectomy surgery. I see a mom who just wanted to so desperately to be happy with her kids, exploring, outside, jumping and having fun... but who was always consumed by health issues and exhausted from the blood loss and iron deficiencies. I tried my best to keep up with three kids and a job, but it was hard. I was so scared before that surgery.... I was terrified something was going to happen to me.

Fast forward a year out and I'm so much stronger now. I'm free of those issues and able to be here, really be here for my children. I'll write more in another blog about hysterectomies, as they are a large thing in themselves.

This journey was harder than anything I'd been through, and I'm so grateful it's complete. Now, on to a FUN and busy adventurous summer with my kiddos! No surgeries!

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