Blossoming into Advocacy: A Chat with Blossom Award Winner Grace Mhango

By: Kiara Burroughs

In this month’s edition of The White Dress Diaries, I am so honored to sit down with one of our recent Blossom Award winners, Grace Mhango. In this post, we are discussing her fibroid patient story and journey to advocacy.

For our readers who may not have had a chance to meet you in New York. Start by introducing yourself to our readers.

People typically introduce themselves by what they do, but I’d like to say who I am. I am passionate. I'm passionate about health, women's health specifically. As a nurse by trade, I work with pediatric patients and geriatric patients, but I have a special heart for women. I love to attend and support women’s health events and causes. I also love the wellness space and the movement I have seen in this space to support women.

That’s a great segway to my next question. Tell me more about your interest in the White Dress and your journey to becoming one of our biggest volunteers and supporters.

Grace Mhango, Blossom Award Winner

When I first attended a White Dress Project event, I was very inspired by the fact that it’s a community of passionate women working to empower and support other women facing health challenges such as fertility issues, endometriosis, and fibroids. As someone who has fibroids and who has many friends and family who have fibroids, I could really relate to the cause. Fibroids are usually not talked about. It’s typically taboo. We don't hear about women sharing their stories. This community is a safe space where women are boldly sharing what they are going through and helping others. It really inspired me and was something I wanted to be a part of. I know I'm helping other women by sharing my story and inviting them to White Dress Project events where they can learn about more about what they are living with and how to live a better life, even with fibroids.

I love that. It’s so true. I think what you have described is what brought many of us to The White Dress Project. This is a unique community of people who know first-hand what it’s like to manage life with fibroids and who are united in wanting to make a difference. As a nurse, I’m sure you have experienced fibroids in your working career as well. Would you say there are any experiences in your career that have shaped your advocacy efforts, how you experience being a fibroid patient, or even how you manage others living with fibroids?

Yes, it certainly has. As a nurse, I try to be compassionate and advocate for my patients. Sometimes you really don't fully understand an experience until you've walked in it. So having been a patient, I feel I’m even more compassionate with other women who have fibroids because I know the pain and the experience that they're going through.

This experience is more than just a bad period that can be resolved with ibuprofen. It’s so much more than that. Everybody's experience is different. Everybody's symptoms are different. Everyone’s treatment options may be different. It's not one-size-fits- all experience. This is a highly personal experience that patients go through every day.

I agree completely. The fibroid patient experience is sometimes hard to explain unless you’re going through it, especially since it’s sometime written off as a bad period. Doing this work is a balance of caring for yourself while also informing others with information and resources you may not have had access to with the hope that they do not have an isolating experience.

Exactly!

Tell me about your experience being diagnosed with fibroids. When did you learn that you had them and how did you feel once you knew more about what was going on with your body?

For years and I didn't know what was going on. I grew up in Africa where I attended a private boarding school. My period has always been challenging since the beginning. We received very little education about it in school, and I learned most of what I knew at the time from my mother. I always ended up at the clinic where my friends would come visit me. They would ask me every time ‘Grace, what are you doing here?’ Most of my friends didn’t have periods like mine. It wasn’t something we really discussed. I would have so much pain. I couldn't get comfortable in my bed. Sometimes I’d be on the floor in so much pain and my friends would help me back into bed.

At school, they would always just say that I have a stomachache and give me Tylenol. When I went to the doctor, they didn’t really know what was happening either. The doctor would sometimes say that I had endometriosis. I never got an MRI or had any procedures. In Africa, we didn’t have access to high tech diagnostic tools, so everything was based on what the doctor said.

When I would talk to my mom, she told me that she would have bad periods as well. I began to think that it was just normal to feel this way. My mom and I would discuss different methods to help with pain, like boiling guava leaves and drinking the water. This didn’t help me much but it’s interesting now that on social media there are so many more holistic programs focused on different ways to treat bad periods and fibroids.

Wow! That had to feel so isolating to go through that when so many of your friends could not relate. So how did things change for you once you arrived in the States?

I came here for college when I was in my early 20s. I continued to have bad periods every month and eventually went to see a doctor who performed an MRI. That’s when I learned that I had fibroids. I had never heard of the word fibroids, only endometriosis. So many questions were on my mind: Is this some kind of cancer? Is it going to kill me? How long do I have to live? It really scared me because I didn’t know anybody who had fibroids and I didn’t know anybody who could help me.

Wow! I can’t imagine receiving this diagnosis with no previous knowledge and no one around to support you. How did follow up discussions with your doctor go about how to move forward?

The doctor told me one way to manage periods was to go on birth control. The birth control helped to lessen the pain and make my periods more consistent and manageable. The doctor also told me that the fibroids would continue to grow, but I could have surgery to have them removed.

At the time, I was in school, and I didn't really have time for surgery. I decided that I was going to continue with school, continue to take birth control pills, and manage it the way the best way that I could.

Did you do any research on your own to determine any alternatives for treatment?

After the doctor told me that I had fibroids, I started doing my own research. I read different articles online and learned that diet and exercise also helps with fibroid symptoms. I liked the idea of exercising because I loved doing aerobics, volleyball, dance, and swimming (when my periods would allow it) in high school. I remain passionate about those things.

I also found alternative methods like drinking soursop soup to shrink fibroids. In fact, I tried a bunch of different things such as Jamaican hibiscus tea and beets. Back home, there are different leaves and plants that women use as well. I stayed away from sugar and would take my ibuprofen religiously. I started taking it the week before my period.

I learned to study my body and know what does and doesn't help me. I noticed that sugar increased my pain, so I stayed away from it in the weeks leading up to my period and ate more vegetables.

Wow! I’m sure many of our readers will identify with the journey of educating yourself and becoming more in tune with your body after diagnosis. So, you did what you needed to do to postpone surgery and wrap up college. What did you decide to do once you graduated?

Once I started working, I noticed that my stomach was getting bigger. My fibroids were growing so I started seeing the doctor more consistently. When I went to see the doctor and she asked me: when do you want to do surgery?

That felt insensitive to me. She thought because I had fibroids and they were really big that I needed to immediately schedule surgery. I was just like, whoa, can we discuss this first? She informed me that she had a lot of patients and needed to get the surgery booked. This experience taught me that I needed to advocate for myself. I didn’t like the way she spoke to me, and she didn't want to discuss anything with me. So, I found another doctor who would answer my questions and tell me more about what surgery entails.

Around this time, I saw Jonelle, Director of Programs for the White Dress Project. She invited me to a White Dress event. She’d had surgery a few months prior and was able to give me guidance on what to expect and prepare for.

By the time I had my surgery, I felt comfortable and safe going through it. I had a trusted friend who had given me advice, found community in The White Dress Project, and had a doctor who I felt comfortable with. I did struggle with being mad with myself for waiting so long. Waiting allowed the fibroids to grow so large that I did not have as many options as I would have had when they were smaller. By the time of my surgery, they were between 10-15 cm in size.

Yes, that journey leading up to the first surgery is such a challenge. There are many patients who can identify with not feeling heard, looking for community, and fearing the possibilities of what surgery could mean for them. It’s such a scary process, but it’s so important for patients to educate themselves on what is best for them. What were some of the questions that you asked the doctor and how did the surgery go?

I asked my doctor everything. I even asked if they ever had a patient die during surgery and if there was a possibility of bleeding out. Prior to surgery, I thought I had three fibroids, but I ultimately had 10 removed with a few smaller ones that remained.

From a wellness perspective, have you made any changes in how you treat and understand your body after surgery? How do you nurture and remain in tune with your body?

Though the smaller fibroids are starting to grow, I have not had another surgery yet. I have continued to exercise because the adrenaline boost is good, and it produces endorphins which makes us feel good. I used to exercise for fun, but now I’ve become more intentional with an understanding that this is good for my health. My eating habits could be better, but I have focused on making healthier choices. Sometimes cooking at home can be a challenge because of my work schedule, but I’m trying the best where I can, even when I choose to dine out or do social activities with friends. I try to stay away from red meats, reduce dairy, and eat more vegetables. I tried the alkaline diet from Dr. Sebi after a few friends tried it, but ultimately decided it wasn’t for me due to the amount of weight I lost. I also recently saw an article from Dr. Shirazian at New York University about the importance of diet and fibroids which I learned from as well.

Yes, there have been so many articles and tips that I have come across on diet as well and I have been excited to learn more about the research at NYU Langone with Dr. Shirazian. As we approach the end of our time together, I have one more question: if you could go back in time, what advice would you give to yourself at the start of your fibroid patient journey?

I would say definitely advocate for yourself when you go to different doctors. If you don't like what one doctor says, then go find another doctor. Sometimes we can become stuck as patients. If a doctor tells you something that you do not want to hear, then you can become resentful or make the wrong choices for yourself. Find a doctor that you are happy with and who will answer your questions so that you are comfortable with your ultimate treatment plan. Also, I would say, if your doctor recommends surgery, then do it as soon as you can. I wish that I had done my surgery while my fibroids were still small so that I could have had a less invasive procedure. Finally, I would say pay attention to your symptoms. When I feel my energy is low or feel sluggish, I check on my irons levels. I also regularly check my vitamin D, and take supplements for vitamin D and magnesium. Before the diagnosis, your body is telling you that something is wrong, but sometimes, I think that these periods are normalized as just having a bad period and that is not true. We should not normalize pain and heavy bleeding.

Yes to all of this, Grace! Advocate, advocate, advocate and pay attention to your body! Is there any final advice that you would like to offer our readers?

Strike a conversation when you're out with your girlfriends. If you have fibroids, or any issues or concerns, just start the conversation. Let’s normalize talking about our health when we’re out to brunch or spending time with girlfriends. After inviting a friend to a White Dress Project event in Washington DC, she thought that she may have fibroids. When she went to the doctor, she discovered that she had five. She was normalizing the pain and now knows that something is wrong. She will be having surgery soon. We don’t talk about our health enough with our girlfriends. These topics should not be taboo.