Alice’s Story: Searching for Answers
Since the age of 11, my periods have been horrific. Intense cramping, very heavy bleeding, and tiredness. With age, all of this got worse. At age 16, I would regularly pass out from the pain and fatigue. I reached out to my GP who did what most doctors do for any woman with menstrual issues…put me on the pill. Symptoms didn’t improve much but I stayed on various contraceptives for the next ten years, including the implant and the injection. Regardless of which contraption I used, my periods were heavy, my bloating made me feel constantly uncomfortable and my cramps were so bad they radiated down my legs and into my lower back. This was for at least a week, every single month.
I (as many women do) put it down to bad periods and that was that. It wasn’t until I got pregnant and suffered a miscarriage at ten weeks that they discovered I had a 10cm intramural fibroid. My gynecologist explained it had likely been there for a long time and grown with age as my hormones progressed. I felt relieved to have answers but worried about what it would mean for my future – did the fibroid trigger the miscarriage? Would it impact implantation for any future pregnancies? Will it get bigger and continue to put strain on my body? To put my mind at ease, I’ve decided to move forward with surgical management and I’m now on the waiting list for surgery to remove my fibroid. There’s no guarantee it won’t grow back or new ones will grow, but for now it is my only solution.
For too long, too many doctors and medical professionals have disregarded women’s reproductive health. Suffering with periods is NOT normal. Periods shouldn’t impact your day to day life. If they are, we shouldn’t have to fight for answers about our own bodies. Fibroids are extremely common and until I was 27, I’d never even heard of them. It’s about time that every young girl and woman understand what to look out for when it comes to their menstrual health.
Jessica J’s Story: Personal Advocacy Through Adversity
I was diagnosed with fibroids sometime around 2011-2012 but the doctor I had said it was no issue and whenever I wanted to have children that I would just have to get re-checked. My mom had fibroids and had a hysterectomy at age 50 when I was about 15 years old but I just never put it all together when I was diagnosed since my doctor said it wasn’t an issue. I only got diagnosed because of a cyst I had on my ovaries. Even when my mom had her hysterectomy her doctor never told her or us (my sisters and I) as we went to her appointments that we should be mindful of fibroids. My mom had anemia and heavy periods but I didn’t which is why I didn’t think anything of them. But I did have horrible period cramps, lower back pain, constant bloating, and urinary urgency.
Well fast forward to 2018 my husband I began to try to have a baby. Fast forward to 2020, I’m still unable to get pregnant. I had gained a lot of weight beginning in 2017 and had a lot of difficulty fitting in pants/jeans because I looked pregnant. By 2020 my husband and I decided to get ourselves checked to see if it was me or him with an issue causing infertility. I got blood work done and everything came back normal. My doctor referred me to an ob-gyn with experience in working with women with infertility problems and recommended I try a holistic doctor before trying IVF. Well my visit with this ob-gyn, he had me get an ultrasound prior to my appointment. During my ultrasound, the tech said I had fibroids and noticed in my file that I knew from almost a decade ago. He then told me to look into UFE as it was becoming a popular procedure. I did some research.
On the day of my appointment, I told the ob-gyn I was trying to have a baby but struggling to get pregnant. He told me flat out, “You will never be able to carry your own baby, there is no room because your fibroids are taking up all the space”. He said my uterus was filled with fibroids of all sizes and the largest of 10 cm was partially covering my cervix. I asked about removal options but he said my only option was a hysterectomy. Even though I had just told him I wanted to have a baby. He said fibroid removal would lead me to bleed out and require a hysterectomy. So either I lived with them and the symptoms or I got a myomectomy that would for sure lead to a hysterectomy.
My heart was broken. I longed so much to become a mom, and my dream was shattered. I inquired about UFE, but he told me that was only for people planning to not have kids. He said he would talk about my case with the other ob-gyn’s in the hospital and he would schedule a follow-up to discuss any other options any other doctor came up with. I went home & just cried with my husband. I was 28 and was told I’d never be able to carry and have my own children. I was devastated. I did my research and decided I’d want to be referred for a UFE.
At my follow up which was virtual with a different doctor, she said the only recommendation was a myomectomy for removal of fibroids but they felt like I had a 20-30% success rate and likely lead to a hysterectomy because of the largest fibroid being too difficult to remove without bleeding out. I requested to be referred to interventional radiology. The doctor said they did not recommend that as it is recommended for women who do not plan to have children but she did the referral anyway. A couple weeks later I met with the interventional radiologist and he was a God send. I got an MRI with contrast and told me I was the perfect candidate for UFE. He said he looked at my last blood work and feels that my only barrier for pregnancy was these fibroids and it wasn’t a matter of if I could get pregnant but rather when. He told me that he hurt for me for what my previous doctors put me through and the misconceptions about UFE. I decided to proceed with the procedure as my doctor was very experienced in the procedure and had many cases with successful pregnancies less than a year post-UFE.
Well post procedure my bloating, cramping and back pain and urinary urgency all went away. A couple months later and I no longer looked 5 months pregnant. I had a follow up MRI, 6 months post-op and my fibroids all shrunk 1/2 in volume. My UFE doctor recommended I get blood work done again to make sure I had no hormone issues that were making it difficult for me to ovulate or get pregnant. My appointment was set for November 2021. 2 weeks before my appointment I had a positive pregnancy test. My pregnancy was considered high risk because I still had a fibroid partially covering my cervix and because I had a prior UFE.
But I had a successful pregnancy at 41 weeks and gave birth to a 10-pound healthy baby boy. I had to have a c section because of the large fibroid covering my cervix but luckily was able to have a partial myomectomy but was unable to have the largest fibroid removed because I was losing too much blood. Unfortunately post birth my fibroids continue to grow. But luckily only my bloating and urinary problems have continued.
I am currently trying for a second baby which would likely be my last as my next pregnancy will likely end in a hysterectomy at birth. I have now become very open to sharing my story. I encourage women to be their own advocates because I feel like my firsts doctors failed me. UFE is not for everyone but I’m beyond thankful I trusted my gut and went with it and that I had an amazing doctor. I’m still in my journey of living fibroid free one day.
Community Member’s Story: Hope for the Future
I’d always suffered from heavy periods and just figured that was just the way my body worked until I found out I had uterine fibroids after getting severe abdominal pain during a cycle in 2019. The largest was about 6cm in diameter. Myself and my partner started trying to conceive in 2021 with some difficulty due to the position of the large fibroid. Luckily I successfully conceived in 2022. Though ecstatic to be pregnant, my pregnancy was extremely uncomfortable due to the fibroid and my bump was very large. My bump measured at size of 17 weeks gestation when I was 9 weeks pregnant.
I was closely monitored by my obstetrician throughout the pregnancy and knew there was a small chance I could go into early labour. Sure enough I did, and gave birth to a healthy little boy seven weeks early. The large fibroid had grown to 10cm in diameter by the end of the pregnancy and was causing serious discomfort. My postpartum bleeding was very heavy and lasted almost 8 weeks. I was assured this was ‘normal’ in 10% of cases but I felt like something wasn’t right.
About two weeks after the postpartum bleeding, I got my first period. It was extremely heavy. I couldn’t leave the house most days. It lasted four weeks. A relief to see it end. Less than two weeks later I got another period and this one was severe, I can’t even describe it. I ended up being hospitalised and my HG dropped to 6.5 at its lowest. I had to have a transfusion. My HG level still didn’t come up as much as my obstetrician would have liked so I had to go for a DNC as well. After being released from hospital, the bleeding continued. My prescriptions of tranexamic acid and primolut were having no effect. I ended up having to have a three month shot of decapeptyl. It took about 4-5 weeks to take effect but seems to be working now.
I am waiting to see my obstetrician soon but it looks like a myomectomy will be the only option as we’d still like to try for more children so shrinking is not an option. I know there is a risk of hysterectomy with the myomectomy but I cannot continue with the pain and the effects the fibroid has had on me and my life the past year or so. It has hugely impacted my time with my baby in his first few months as there have been times I haven’t been able to care for him and been hospitalized and separated from him. When out of the hospital, I haven’t been able to do simple things like go for a walk or a coffee as even the most gentle of movements have started the bleeding again. It’s been very hard.
Do you have a story about fibroids that you’d like to share with the Fibroid Foundation and our community? Share your story.