My Journey w/ Fibroids - Part 1: Diagnosis + Lupron Depot Treatment
*Warning + Disclaimer: This reads kind of like a journal entry. It’s honest, so if you feel uncomfortable reading about blood and lady parts then this is not for you. Also, every body is so so so different. What works for one person may not work for the next. I CAN’T STAND when I read headlines or blog post saying “here is how you fix your fibroids” or criticizing others for making a educated decision to go with a certain method of treatment. We all know our bodies best, listen to them, do your own research and make the decision that works best for you. Lastly, this post was written in June 2018, I have been off of Lupron now for four months. Okay…now lets proceed.
The Turning Point
It all came to a head November 2017. I decided to double up on Corepower for the day, morning sculpt and evening C2. It wasn’t that unusual for me. In the last three years I’ve fallen in love with fitness and wellness. I was about half way through class when I started to feel myself bleeding heavily and releasing large clots (I know…we are getting real personal, really quickly). I was on my monthly cycle and this was nothing new for me. I got my period at 10 years old and have always had terrible cramps and super heavy bleeding...it was my normal. As I pushed back into downward dog, I saw the unthinkable….some blood trickling down my ankle. Ya’ll...I had on a super tampon and one of those GIANT diaper like pads. By the end of the class I was in a small puddle of blood. You can imagine my horror. Why couldn’t this have happened to me at home, when I was alone? I ran to my car, dripping all the way there and called my mom in full fledge panic! I’ve had plenty of embarrassing leaking stories before but this was another level….hemorrhage level bleeding. Something was going on in my uterus…………..obviously.
Fibroid [fahy-broid]: also called uterine myomas, are benign tumors that develop inside and/or outside of the uterus. There are four different types of uterine fibroids and they are determined by their locations in and/or around the uterus (reference image below). Common symptoms including heavy menstrual bleeding, severe cramping, bloating, irregular menstruation, increased bladder pressure, and fertility issues.
Although many women with fibroids are asymptomatic, most often the larger the fibroids the bigger the issue they present, additionally, where the fibroids are located also play a major part.
Let me start by saying this: fibroids are THREE times more common in black women than in any other population of women. Additionally, according to a study supported by the NIH, black women are significantly more likely to experience severe symptoms like heavy bleeding and anemia. There is some research that contributes this to geographical and socio economic factors, but no comprehensive research that gives a real explanation for this disproportion. So it is no surprise that as a black women, these tumors run deep in my family. All of my paternal aunts and paternal grandmother suffered from them. And several of my maternal aunts, my maternal grandmother and my mother also had fibroids. Two years prior my sister had a laparoscopic robotic assisted myomectomy to remove her masses. So needless to say, there is a strong history here.
Let’s Take a Moment for Healthcare
Now let me preface this, I am not a doctor or a healthcare profession. However, both my parents are physicians and I grew up knowing a lot more about healthcare than most kids. The nature of healthcare has changed drastically over the last 15-20 years. Because of how insurance is set up, your doctor probably can’t afford to run random test on you unless there is something that very obviously warrants that test. Why? Because the insurance companies don’t want to cover the cost of expensive test, scans, screening. And you, the patient, don’t want to pay out of pocket. We can talk about that for hours but….another time.
I say this all to say, I have been having well-women’s exam for nearly 5 years. I had disclosed that my bleeding was extremely heavy and that my cramps were horrible, but never did my Nurse Practitioner and/or Gynecologist recommend an ultrasound to check out my uterus. That is until, I called the doctor’s office and said, “I want an ultrasound to check my uterus for Fibroids.” So there is that. It is so important for us to take responsibility for our bodies, our health and our healthcare because doctors, even when they are doing their jobs very well, are not miracle workers, or magicians or money trees. They have restraints, limitations, budgets, overhead and a business to run, just like the rest of us.
Following that ultrasound I was told that I have three sizeable fibroids, that, together, measure roughly 17cm, that is about 7 inches...which is about the size of a honeydew melon, or a fetus at 4 months...so I was 4 months pregnant...with fibroids. I wasn’t overweight, my lower abdomen wasn’t protruding, no doctor would have considered me a candidate for this, but that’s not really how fibroids work. Since I was working out so much and watching my diet closely, it helped counteract the physical or let’s say more outward and obvious signs of fibroids.
After the diagnosis, there were alot of doctors visits…MRI, blood test, fertility test, etc. Since I want to birth children and I’m in my childbearing years, I was first sent to a fertility doctor to examine the situation and check my egg count, as well as other hormonal levels. Once I was all clear in that area, I was referred to a hemoglobin pathologist. Apparently hemorrhage like bleeding really plummets your iron levels, who would of thought. I was prescribed a iron supplement to get my levels up to par (FYI, it was a vegetarian, gluten free, kosher iron supplement that did not make me constipated...hallelujah...it’s called Irospan 24/6 in case you are in the market for this). Then it was back to my Gynecologist.
At this point it had been about two and a half months since the official diagnosis. I stopped birth control, for fear that any hormonal disturbance would only make matters worse (fibroids feed off of estrogen). I was already living a very healthy lifestyle - exercising at least 5 days a week, eating a vegetarian diet, and just generally living well. But after the diagnosis I took things up a notch since diet and exercise are said to help with fibroid shrinkage and/or management. I continued working out and changed to a mostly dairy free and gluten free pescatarian diet. Since I wanted to start with the least invasive options and go from there, this seemed like the best option. In addition to the lifestyle changes, I also started a medication treatment recommended by my doctor that is used to shrink fibroids and manage bleeding. The medication is called Lupron Depot.
Common Fibroid Medication Treatment Options (via WebMD):
Gonadotropin-releasing hormone (Gn-RH) agonists. Medications called Gn-RH agonists (Lupron, Synarel, others) treat fibroids by blocking the production of estrogen and progesterone, putting you into a temporary postmenopausal state. THIS IS THE CATEGORY OF MEDICATION THAT I TOOK.
Progestin-releasing intrauterine device (IUD). A progestin-releasing IUD can relieve heavy bleeding caused by fibroids. A progestin-releasing IUD provides symptom relief only and doesn't shrink fibroids or make them disappear.
Tranexamic acid (Lysteda). This nonhormonal medication is taken to ease heavy menstrual periods. It's taken only on heavy bleeding days.
Other medications. Your doctor might recommend other medications. For example, oral contraceptives or progestins can help control menstrual bleeding, but they don't reduce fibroid size.
My Experience on Lupron Depot
Let me tell you, Lupron is one hell of a drug, and I don't ‘mean that the way Rick James said it. Let me start by saying, everyone reacts differently to medication, every body truly is different. My doctor was aware of the adverse side effects that came with a drug that catapults your body into a premenopausal state, so he prescribed some hormonal add back therapy that is intended to lessen symptoms. I also opted to get the monthly shot instead of doing the tri-monthly injection, because I wasn’t sure how my body would react. I did a whole month of research on the drug so I knew exactly what I was getting myself into. I spoke extensively to my gynocologist, my parents (who are physicians, if you didn’t read the first part of this blog), my husband (who would undoubtedly be the recipient of my artificial premenopausal craziness), read every blog and comment I could find about women’s experiences with the medication ( which honestly wasn’t as many as I’d hoped for). I finally decided to move forward with it and had my first injection on February 10th. My doctor and I agreed that we would reevaluate after three months of Lupron with the hope that the fibroids either shrunk to a size that was manageable, or shrunk to a size that was safer for a minimally invasive procedure. Additional, because Lupron shuts down your natural homoronal process, I wouldn’t have a real period while I was on the medication, and hopefully that would allow me to get those iron levels back up.
The first two months were actually not too bad. I did experience a lot of fatigue and a lot of random spotting (like 4 days out of every week) but in general I was able to push through. By the third shot I was definitely feeling the symptoms hit harder, extreme bloating, really bad fatigue, super low energy, increased appetite, and insomnia. However, since my body was getting used to the Lupron the spotting really died down. I was hopeful that the Lupron was working its magic. At the end of the third month - so end of April - I had my three month assessment. After getting the ultrasound, I learned that the tumors had not shrinked at all. Such a disappointment! Not only was I on Lupron but I had really been diligent about realllllly cleaning my diet and upping my workouts. My doctor encouraged me to try one more month of the medication, before we moved on to next options. I was really really hesitant, but figured I could handle one more round, if it meant that just MAYBE we would see results.
LET. ME. TELL. YOUUU. That last shot of Lupron nearly took me all the way out. I was struggle bussing alllllll through May. It’s like everything hit so hard all at once, especially the depression. Only good thing was I stopped bleeding. All the other symptoms just got worse. I was not myself in any way, I could feel it. It was bad. Oh, also, my hair texture was super dry and brittle during this time, I would loose giant balls of hair in the shower, it was low key scary.
In early June, after completing four months of Lupron, my fibroids were standing there ground, no shrinkage, in fact a tiny bit of growth. Yes, they are stubborn little masses smh. At this point my husband and I decided it was time to move on to other options. Also, I know a lot of people are concerned about gaining weight on Lupron, I know that was big for me. I tried to stay as healthy and active as possible, but still gained about 8 lbs. And since I wasn’t producing normal estrogen levels, and was also working out a lot (specifically lifting at least 3 times a week), I definitely bulked up. I was lifting heavier than usual because I honestly felt stronger than usual. Anyway, after about a month off Lupron the weight dropped right off. But for a while there my husband was joking about me looking very “brolic” lol.
SN: I can’t forget to sing the praises of my dear hubby who has been so understanding and engaged and involved in this whole process. The best! I was seriously a hormonal mess.
So that is my brief and slightly traumatic journey with Lupron. Unfortunately, it did not do anything for me, except give me a frightening preview of what menopause will look like. BUT like I said every body is so different. During my research phase, I remember reading a blog post titled, “How to cure fibroids.” I appreciated the author’s contribution, but she made it seem like all you have to do are these quick five steps and “fibroids be gone”! In reality, we really all react very differently to treatments. Many methods didn't work for. I tried castor oil packs, frankincense, dandelion root, ginger tea, milk thistle, diet change, exercise, birth control, yoga, the list goes on. These things may work for some people but not all people. Likewise, I’ve read reviews of people singing Lupron praises, but my fibroids didn’t respond. (*I’m still using these, and other homeopathic methods as supplementary to my other treatments. More on that in my next post.)
My goal is not to offer up the solution to heal your fibroids, but to create more dialogue around treatment options. It is estimated that by age 50, 90 percent…YES, NINE ZERO, of African-American women will have fibroids (although many don’t experience symptoms and/or the tumors are so small they don’t cause any issues). And many times treatment options given to these women (specifically women with large masses) are (1) a traditional abdominal myomectomy - a open abdominal procedure to completely cut out and remove the tumors, which could result in a uterus that is too traumatized to bear children or (2) a hysterectomy - a full removal of the Uterus, making childbearing impossible. But there are more options out there! Praise God for my parents who wouldn’t have allowed either of those things to happen unless it was life threatening. And for my doctor, who has taken the most careful thought in preserving my uterus for childbearing. But some women don’t have these resources available. Many experience what I did at that yoga studio, go to the emergency room, and leave with irreparable damage done to their uterus. So ladies, please choose your healthcare practitioner carefully, do your research, make sure you know your options, and don’t be afraid to bring them to your doctor. The more questions the better.
I hope this post provided some insight for other women struggling with fibroids. I really value privacy (especially when it come to my sexual organs:). But because of the lack of community around this issue and how it so disproportionately affects black women, I really felt the need to share my experience candidly in hopes to provide more information, discussion, support and community for other women with similar experiences. There is a wealth of knowledge in each of us. And it can do so much good if we are willing to share it! Please feel free to leave comments and/or ask any questions below!
Words of Encouragement
This process can be really difficult. I never imagined I’d have to worry about fertility in my 20s. But as a woman of faith, I know that God is working in all of this. So I’ve tried to release the false notion of control I sometimes convince myself that I have, and submit to whatever God has planned for my husband and I. Remembering that ALL things are working for my good.
“And we know that in all things God works for the good of those who love Him, and who have been called according to His purpose.” Romans 8:28 NIV
*I’ve been off of Lupron for about four months and am finally back to myself. It took a minute! I have a lot of updates since June, so stay tuned for Part II!