I bet you’re wondering why I have the nerve to talk about fibroids and give advice since I’m not a doctor. Well, no, I’m not a doctor, but I’ve had fibroids for 20 years and have been bleeding to death for most of that time. That qualifies me in being an authority on fibroids, and if not, I’m claiming it anyway! You have a doctor and should always follow his or her instructions, but I’ll share my stories, and other people may share theirs. Take from these stories what helps and then talk to your doctor.
The largest fibroid I ever had was the size of a grapefruit, and my current super fibroid is the size of a pear. My uterus is the size of a third-trimester pregnancy. I’ve been so anemic that iron supplements just didn’t cut it and I can only tolerate one brand (more on that another day). I’ve had iron infusion treatments at least once a year for the last few. There are multiple kinds of iron treatments, and one type stained my skin for over a year (more on that another day). I’ve had the fibroids removed a few times (myomectomy), and they always grew back larger and stronger. I’ve had complications from myomectomies that landed me in the ICU, and 2 separate two-week hospital stays. The first time I caught pneumonia and the second time a bowel obstruction (more on that another day). The surgeon said I had developed lots of scar tissue and it looked like a grenade had gone off in my belly. He said he never wanted to operate on me again (more on that another day).
I’ve gone to the emergency room a few times due to heavy bleeding and been told I have Pelvic Inflammatory disease (PID) because I’m a black woman of childbearing age (more on that another day). I did not have PID, I have fibroids, and they cause lots of symptoms and complications. Emergency room doctors told me to use condoms, and that my symptoms are related to having had multiple STDs. I was not sexually active at the time nor did I ever have an STD and communicated that. I did not test positive for any STD the emergency room doctors had checked for; however, this diagnosis was repeated because I’m black (YES).
Therefore, one of the reasons I started this blog is because we all need to feel empowered to be an advocate for our own healthcare and those whom we are responsible for! Our skin color, social-economic status, sexual orientation or anything not related to us as individuals and our own relevant medical history should not be used to assign a false condition when a doctor just doesn’t know what’s wrong with you. You have to go to the doctor, and you have to go often. If what you are being told doesn’t sound correct then challenge it and then go to another doctor. Ask for referrals from friends who have your condition and found a doctor who is actually doing something about it. You most likely will have to switch doctors a few times. That’s fine, your health is more important than the doctor’s personal feelings, and it is a professional relationship, not a personal one (if that is a concern of yours). Find a doctor who listens, treats your issues, and respects you as an individual.
So, again, no I’m not a doctor, but all the above qualifies me as an authority on fibroids. I’m going to get into detail on all the things I’ve gone through. What has worked for me and what hasn’t? Along the way, I got good advice from a few doctors, and I’ll share that.
I encourage you to share your stories and what has and has not worked for you.
Biopsy & IUD Removal
I’m having a biopsy this week in preparation for my next surgery to deal with those pesky fibroids. Due to my complicated uterus, the biopsy must be done under anesthesia. While the doctor is in there scraping, I’m going to have her take out my IUD which was put in place to control bleeding (more on that another day). Once my gynecologist gives the all-clear that there is no cancerous tissue, then I can go ahead and schedule the Fibroid Embolization.
Uterine Fibroid Embolization (UFE), is a minimally invasive procedure performed by a radiologist. The radiologist explained to me that he would administer a drug through an IV. The drug will block the arteries that feed blood to the fibroids causing them to die. He said there would be cramping, and spotting and the recovery time is one week. He said a small percentage of women may need stronger pain management than they send you home with. If that happens, then you’ll need to go to the emergency room for the good stuff. My gynecologist also said that sometimes embolization doesn’t work. The body is an amazing vessel, even though you have removed the blood source the fibroids may find another.