At the Fibroid Foundation, we’re continually inspired by the strength and resilience of our community. Today, we’re honored to share Amber’s story, a journey marked by challenges, perseverance, and the pursuit of better care. Amber chooses to shed light on her experience navigating fibroids to help others feel less alone and advocate for the education and support we all deserve.

This is Amber’s story, in her own words.

I experienced heavy periods ever since I first began my period in middle school. As an adult in my mid-30s my periods became worse; lasting weeks, bleeding through my clothes and generally contributing to overall feeling pretty badly. I experienced severe pain with sex and when I went to my obgyn office they found after, for months saying I must have an STD, discovered my IUD had been pushed out by a fibroid. I switched providers immediately! After trying to become pregnant for 2 years without success my new all female obgyn office initially said there was nothing wrong and I could get pregnant. Eventually when my periods became more painful they said they could remove the fibroids. There was zero education from them to me and after my first myomectomy they said I was all set. The bad periods continued and another year went by without being able to become pregnant. They then told me that the only thing that could be done to manage my periods was to have a hysterectomy. I was almost 37 and heartbroken. I then was given a link to a fibroid organization where I found an illustrated piece about the fibroid experience and realized I was not alone and this was not normal.

After reading through the website I found that hospitals in my area had fibroid clinics within fertility clinics. I tried to enroll in multiple hospital clinics but they were not accepting new patients. At this point I was struggling with being out of breath, having difficulty being active and experiencing a lot of mental health impacts due to my periods being so long and heavy. I sent a desperate email to MGH and was eventually able to enroll but had to wait about 4 months. I was bleeding non-stop by now, about 3 cups of blood a day, ruining clothes and experiencing dizziness, lightheadedness and having difficulty with ADLs.

I am a federal employee with great health insurance but there was no help for me. I begged for labs and to be taken seriously but was told my stress and being overweight was causing my infertility. I was very sick this time last year and begged for lab work. No one would do this until I began having incredible pain with sitting, standing, using the bathroom and was passing 10-20 fist-sized clots a day. I fell down my stairs in the night and had to use the bathroom every 15 min I was bleeding so much. Eventually I was able to get a doctor from the MGH to order labs and my hemoglobin was 4. I had to go to the ER for blood transfusions and had a myomectomy the day after. I was told 2 10 cm fibroids (pendunculated) were removed. I told the doctor something was wrong for months and he did not believe me until the surgery. They maxed out the time to remove the fibroids but there are still many in me. There was so much scar tissue left that I was told I will not be able to become pregnant because of this. I have been feeling better this year after the fibroids were removed but I do not trust medical providers and never will again.

No one listened to me. I will never have a family. I feel very sad and hopeless. I work to share my story every chance I get so that no one else will have to be alone or second guess themselves. All my providers told me the pain and bleeding was normal, I needed to get over it and this was the message my family and friends believed. I wish I had received adequate care. As a medical provider myself it hurts every day to care for my patients and relive that nightmare be of my providers cared about me.