Thank you so much for Shantana Hazel and SisterGirl Foundation for agreeing to be interviewed for Endo Uprising! You truly are an inspiration, thank you for being part of Worldwide EndoMarch! See excerpt’s of Shantana’s interview below:
HQ: Thank you for joining us today, Shantana. We’ll jump right in: What were the first symptoms you experienced with endometriosis? How did your symptoms progress? Do you have classic endo symptoms or atypical? When did you first hear about endo and when did you think you may have it? How long did it take you to get diagnosed? What is the hardest part about your endo?
SH: Heavy and painful menstrual cycles, I remember everything about that day I began my menstruation. I was 11 years old and had these pains that knocked me off my feet, literally. In the beginning, my mother thought it was normal to feel this way during my cycle. Especially because myself along with other women in our family dealt with heavy menstrual cycles & moderate to severe cramping. I recall her instructing me to take Tylenol and use the heating pad to help with the cramping. I had heavy bleeding, pain not just in my pelvis but all throughout my body, I felt like my insides were falling out. It felt very foreign. Many times I couldn’t participate in gym; I was in so much pain. I didn’t understand it, my mother didn’t understand it.
I was 25 years old when I first heard the word endometriosis; it was after going to multiple doctors and other channels and doing research to figure out why I had so much pain. During one of my scheduled Gynecology appointments my doctor invited one of his new colleagues to see me. This fresh set of eyes and ears from New York listened to every symptom and issue I described to him. The first thing he said was “you sound like a classic case of endometriosis.” From the ages of 11-25 having pain with no name and I could finally put a name to the face of the pain I was experiencing. After being told for many years that it was all in my head. May 18th 2001 was the day I got diagnosed, I don’t remember much about my surgery but I do remember the day after, when I got my diagnosis because I was so relieved! Then he told me there was no cure and I tried to stay strong but I felt lost. My emotions were all over the place. The unknown made me very fearful, I lived with anxiety because of that diagnosis.
Years later I received more difficult news that my tubes were blocked. That really hurt my heart. Having to go to fertility doctors try to conceive a child with my then Husband was hard. I didn’t share how scared and disappointed I was. It’s something that I’m at peace with now because there are so many people who struggle to have one child. I feel blessed to be able to at least have one child, my son who is now 25 years old. The struggle opened the door for me to see things differently and now I have two grandchildren! So even though it was hard it was a blessing. God knew that if I had another child I wouldn’t be able to give them my best. Especially with my health not in its best shape. Sometimes in order to live in a more productive way you must block the noise and protect your peace by any means necessary. You have to do that, you have to shut out the noise and be at peace.
HQ: What is your craziest doctors story? Either positive, negative, or neutral. Did you almost die from surgery or have you ever experienced severe adverse side effects from medications?
I’ve had 16 surgeries, countless procedures, and I can’t even count the number of hospital visits. I do recall I was going into have one of my surgeries and I started to have anxiety, but I didn’t know that’s what I was experiencing. I displayed a strong and brave face around my family but when as I was escorted one way towards the operating room and my family went the opposite way the tears began to flow heavy. Once, I laid on the operating table and saw all the doctors with their scrubs and mask on as I entered the surgery room, I had a panic attack. I was crying and telling them that was scared I wasn’t going to wake up from surgery.
Being sick, in and out of hospitals, doctors and multiple surgeries took a toll on me. One day I decided to tell some of my family about what I was experiencing emotionally regarding my challenges with endometriosis. Many times I felt like no one would understand or take me serious. Imagine having dreams of yourself in the past tense as if you were watching your life flash before your eyes. Mental health doesn’t get factored in sometimes. I know for me personally I was in a state of denial. Some people don’t realize when your body goes through trauma psychically most often times it can affect you psychologically.
My other crazy story is when my doctor admitted me to a hospital for an ectopic pregnancy. After many complaints and countless visits to the doctor’s office and emergency rooms it came to a point where my mother had to advocate for me because the doctors were not aware of my condition and I almost died. I would go in and tell them something was wrong, the nurses and doctors asked question after question and ran a few test. One in particular was a urine pregnancy test which came out negative. I was on birth control at the time so I wasn’t surprised. During another visit I recall one of the nurses saying she was going to do a quantitative blood pregnancy test. Which measures the level of hCG hormone present. To my surprise the test showed a high level of hormones indicating there was a pregnancy. The doctor said that my numbers were high enough for the pregnancy to show in my urine pregnancy test.
The fact that this didn’t raise the red flag for the doctors was unbelievable. You would think with these findings that the doctors would have been able to help me more. No, they did absolutely nothing. So I kept going back and forth, and one day an ultrasound revealed what looked like internal bleeding. I couldn’t walk, stand, sit, sadly everything I did made me feel like I was dying. My body was on fire with excruciating pain. It came to the point were my pain was so intense I couldn’t even speak for myself any longer. I’m so thankful that I had my mother in my corner. She insisted which was more like a demand to me, that my doctor admit me to the hospital and run further tests. Finally, I felt like we were getting somewhere.
Shortly after being admitted, I was rushed to the operating room for emergency surgery. I was close to losing my life as a result of an ectopic pregnancy, internal bleeding and pure negligence from multiple doctors. My right fallopian tube that was carrying the pregnancy continued to give me issues after I healed from that traumatic surgery. My mother’s persistence saved my life and for thank I’m forever grateful she was my advocate. She’s always been a constant source of support.
HQ: The birth control pill or other synthetic hormone contraceptives are often prescribed as a first treatment for those with endometriosis. Have you had different hormonal treatments? If so what was your experience?
I’ve been prescribed several different types of birth control pills and shots. The one treatment that stuck out the most was Lupron injections. I didn’t recognize myself or my body during this time. I’ve experienced permanent bone loss. I also have great issues with short-term memory loss. That medicine in addition to having endo caused me to lose very good jobs; I spent a lot of time away from work because of it. I was on that medicine for more years than I should’ve been, so the effects I experienced are irreversible. At times it was hard for me to concentrate and keep track of certain things. In my younger days Lupron stripped me of a lot. I was always sick or missing something--outings, things with my friends, family functions, community events, etc.
People didn’t understand and I couldn’t express how sick I was because I truly didn’t understand it fully myself. I just knew that my body felt like it was attacking itself on a daily basis. At that time I honestly didn’t do any research on the medications because I trusted what the doctors were advising. After all they are the professionals and knows it all medically, right? The answer is no, I now know and understand that being a patient classifies me as an expert too. If we actually think about it, no one knows our bodies like we do. Oh how I wish I had this defining moment earlier on in my health journey. Before I knew it side effects from Lupron had taken over my life.
I was suffering with depression and my anxiety had increased. My doctor at the time always brushed it off. They did not treat my mind and body as a whole. I truly needed my emotional health cared for just as I was receiving treatment for my physical illness. My body was forced into a medical menopause, hot flashes were a nightmare. The headaches were constant. I suffered with aches and pains in my joints and muscles. My fatigue and insomnia was and still is severe. My hair was brittle and used to shed in clumps, not to mention the dry skin. I tried everything to make my skin hydrated, which was costly. I wanted to give up and stop the medicine but my per my doctor’s advice, I needed the medicine. Therefore, against my gut feeling I continued the treatment. And I endured those nasty side effects and more for another six months. I found myself back in the hospital having yet another emergency surgery to remove an endometrial (chocolate) cyst, and left ovary and fallopian tube.
Unfortunately, I still hear a lot of these horror stories, which sound too familiar. Many women all over the world who suffer with endo are so desperate for relief. So much so that when a doctor paints you a picture that has pain relief with Lupron, you jump to try it. If it means you won’t have pain you go for it because you’re desperate. When in reality, it has the capacity to do more harm. I know first hand because I was one of those desperate women.
Who is looking out for us? Who is making sure we’re okay? We’re just customers and profit for the pharmaceutical company. Years after my treatment, I learned Lupron is used for men with prostate cancer. This goes back to one if my earlier comments about many of endo patients being desperate for pain relief. So we’re more open to giving this medication a shot. I personally feel like there are some physicians who take advantage of that, sadly. I wish I had a better answer or understanding as to why this medicine is given to endo patients . Especially seeing how ineffective it has been proven for so many women. Thankfully, not all physicians push for this treatment option.
HQ: The opioid crisis is at an all time high and very prevalent in the news. As a chronic pain sufferer, what is your opinion on the use and abuse of opiods in those who suffer from chronic pain? If you had chance to speak on Capitol Hill to lawmakers about this issue, what would you say? If not opioids, what alternative therapies do you think women with endo need to be informed about?
Honestly, it has been interesting. I feel that patients like myself are not factored into the crisis. What I mean by that is, when they’re looking to combat the opioid crisis the well-being of a person with a chronic illness hasn’t quite been factored into the process or solution. It’s actually hindering our treatment plan. There is so much we to go through just to get medicine that provides pain relief. Earlier this year I had the privilege to be a part of a Roundtable discussion hosted by the City of Bridgeport’s Health and Social Services director, Maritza Bond. There were representatives from the mayors’ Senators’ and Governors’ offices. As well as members of our local and surrounding community’s health Leaders, agencies and organizations. Throughout the discussions I noticed there wasn’t any talk surrounding patients with chronic illnesses who don’t abuse opioids. I shared some of my medical journey, which included a fourteen year delay in diagnosis with endometriosis. Helping the room of health leaders to understand the level of pain I deal with on a daily basis, which is why having access to opioids, is necessary for patients like myself. Once laws started to change as to how much/often and which doctors can prescribe opioids felt like a punishment for being sick. The time came, we weren’t able to have access to pain relief as we once did.
Many of our doctors advised us to go to the emergency room if our pain persisted. That was a HUGE mistake; we were then labeled as “Drug Seekers.” Now, I see a pain management doctor once a month to receive my pain medication. Random urine testing, monitoring of pills at every visit and the feeling of being humiliated just to be able to have a somewhat better quality of life is horrible. Thankfully, I have proven myself to my doctor that I’m trustworthy and responsibly taking my medication. He treats me with respect but the process strips pieces of your dignity away. There has to be a better way to combat the opioid epidemic in our state.
Being treated or feeling like a criminal shouldn’t be a part of a patient with chronic illnesses healing process. I often wondered if these decision makers would have a different tune if they suffered with some of the illnesses that I do-such as endometriosis, rheumatoid arthritis, osteoarthritis, bulging disk and spinal stenosis just to name few. We’re not choosing to be sick but we are choosing to be speak out
I was thankful for opportunity to shed some light and have my voice heard from a patient’s perspective. The responses and feedback was very hopeful that moving forward in our city’s opioid awareness campaign “BptIamU” patients with chronic illnesses voices will be heard. It was extremely important to have a seat at the table and continue to be a part of the discussions. As a Patient Advocate and a patient, I hope there will more invitations to speak up and out especially pertaining to things that affect us.
“Nothing for us without us,” one of my “SiStars,” Tien Sydnor-Campbell says it best and I couldn’t agree more. You can’t have these one way policies and tight restrictions on medications for us without hearing our concerns. After all, we are a part of the community and we matter.
HQ: You launched your organization, “Sister Girl,” to help increase awareness and education about endo and gynecologic illness and cancers. Can you tell us about the journey that inspired the creation of your organization and what your mission is for it?
In 2009 I was having my fallopian tubes and ovaries removed. I was having a difficult time and feeling a sense of emptiness at the thought of losing my female organs. I was unsure if I would still feel like a woman. I went through a deep depression, I would stay in my room, didn’t want to do anything. There were days where I acted fine, I was smiling on the outside but hurt and angry on the inside. I was grieving for my health. One day my son’s aunt said, “it’s okay to grieve what you are losing, all those things are part of you, and it is normal to go through the stages of grief.”
That advice help me to embrace my emotions more. But the process didn’t happen overnight. I started to lean on God a little more. I still wasn’t too comfortable with sharing my inner thoughts and emotions with my family and friends. It was hard after being judged for so long at the beginning of my journey about exaggerating or lying about my pain. There are plenty of hurtful times where I was accused of taking too much medicine. Some of the unconditional support that I needed I didn’t receive for many years.
I told God at one point that I don’t think I can make it through this. I wasn’t suicidal, but I really thought because I was so sick from endo that I would die as a result. I used to stay up all night and when everyone fell asleep I would just lay in bed crying in pain. I had plenty of conversations with God throughout that time. Asking him to shed light on the purpose of having this illness. I knew all the pain and suffering wasn’t in vain. Once I started praying out loud I felt a lot of weight taken off of me. I started going to church more which strengthened my faith. Little by little my faith started to overpower my fear. I had an “Aha” moment. I’ve always have been a storyteller and over outgoing person. My god-given gift was to create a platform where I can speak about my journey and help other women.
The birth of the Sister Girl Foundation was October 4th, 2010. I chose that name because it had sentimental value to my life and health journey. I grew up as an only child . But I have a huge family filled with cousins who more like brothers and sisters than cousins. Two of my closest girlfriends at the time also earned the role of my sisters. We’ve shared a close bond over the years. One I’ve known since childhood and the other I met as a young adult. We went through the normal sisterly ups and downs. I recalled one day out of the blue calling them my sister girls. It was just a name to me. It was a term of endearment, love, support and sisterhood. It was befitting to carry the name to a platform created for other women to have a Sister Girl in their corner during difficult times. The process was quickly interrupted due to me becoming extremely sick and having surgery yet again. It always felt as if something was trying to hold me back or stop me from living out my purpose. But it made me want to push even harder to get better and finish what I started. I was in my recovery stage building my team and preparing for our 1st Annual Endo Awareness Luncheon which took place March 2011.
I strategically planned my journey to be told by those two Sister Girls I spoke of early on. I wrote it out from beginning to end. I provided copies of my extensive medical records. 3 large Ziploc bags of medications. I wanted to have these visuals to help the attendees gain a better understanding as they were listening to my story. As they were reading their parts it broke them down because they were a part of the people who at one time or another doubted. As well as not being as supportive as they could’ve been.
This event was life changing for me and so me other women. It lifted stigmas, shame, mended broken hearts. Brought about awareness, education and apologies. I don’t think it was a dry eye in the room listening to endo sister’s testimonies. This is exactly the breakthrough our community needed. My friends stood before the guest and openly apologized for their lack of empathy and support during some of my tough times. My family and people within the community shared some beautiful words with me. I was truly thankful, I prayed for this moment every single day. The room was filled with men and women. Some of whom shared personal concerns for their loved possibly having endo. Which shortly after they were indeed diagnosed with endometriosis. I’m glad I was able to provide resources and accompany to their doctor appointments. This was a pivotal moment in my life. Throughout the years we’ve held awareness events. Collaborated with other organizations and agencies to bring forth our shared vision. Which is to empower women to take charge of their healthcare needs. Provide education, awareness, resources and emotional support. We’ve extended are services to women battling breast and ovarian cancers as well. It’s extremely important for us to be available to just sometimes give a hug and say it’s going to be ok. I’ll be with you every step of the way. That may be all that’s needed. It’s necessary when your dealing with chronic illnesses.
HQ: Why do you think issues such as gynecologic illness and endometriosis still need organizations like yours to help raise awareness and education?
Having organizations like the Sister Girl Foundation, EndoWhat?, The Endometriosis Coalition, Endometriosis Foundation of America, EndoNme, Her Yellow Ribbon, Boston Endo Sisters, just to name a few. Some I have collaborated with and many I look to work with in the future, are extremely important to have for various reasons. The biggest one being awareness, many people still haven’t heard of the disease. Therefore, those of us out here doing the work to put endo on the forefront is necessary. Then you have the educational component. Once a person has heard of endo they need to be educated on the disease.
We can’t forget the support aspect of our organizations that provides a sense of understanding and togetherness. Especially in a world where many of us women with endometriosis feel alone. Our organizations humanize the disease and provide tools that are relatable and easy to understand. You can look to many of these organizations to help guide you through your diagnosis. When I was going through my symptoms especially after being diagnosed I had nowhere to turn. I had no idea that there were so many other women suffering with endo.
I started Sister Girl in hopes of helping other women not “suffer in silence” as I once did. Ten years of feeling like I was in this by myself. Not knowing other women with Endometriosis was hard for me. I was ashamed of my illness because my doctor at the time made me feel that way. I started to believe them about my pain being in my head. Once I held my first luncheon I quickly found out there were people close to me dealing with many symptoms that I experienced. In a kind of weird way it made me feel relieved to know that I wasn’t alone. It was through the Sister Girl Foundation, our resources and my own experiences that I was able to help other women get a proper diagnosis. Organizations like mine and many others serve as an information hub to women all across the world. I find it more helpful obtaining information from sources that have more experience in the field than many Physicians that I know. I commend the doctors who treat endo patients and also create organizations that provide up to date and accurate information. Making it easy when patients are researching endometriosis and other gynecologic illnesses. Having these organizations also helps to prepare patients for doctor’s appointments. Whether it is the first or the 15th visit.
We keep the conversation going even when the awareness month of March ends. If we’re the ones being silent and not making any noise then I feel that the disease and its awareness will go unnoticed and continue to be not accurately portrayed. We’re dealing with an illness with no cure, yet it doesn’t get the recognition it deserves and needs. Therefore, if we want change we have to be that change and continue to push the envelope. We have to be our own noisemakers. Hopefully, we can see the change happen. More visibility, respect, effective treatment, more trained doctors, less invasive diagnostic testing, more research for a cure, no more focus on myths and taboos.
When I attended the very first EndoMarch in 2014 is where I met hundreds of women who shared my experience. That was a very emotional time for me. To see the sea of yellow that represented endometriosis was beyond heartfelt and touching. It was a step towards our break through of being taken seriously. The only other time I’ve seen such Unity and rallying for an illness was at a breast cancer walk.
When the Nezhat family and Barbara Page created the platform for the Endomarch I saw people starting to understand the severity of our rally cry. There you have it, people were traveling to Washington, DC to march from all across the country to march for endometriosis. These doctors and their founding board members and team came together to create something for the community. To acknowledge that this was a huge issue that needed attention was needed. For the hundreds of women and their families who attended, it was an historic moment for the endometriosis community. I truly think that. To my utter surprise I received an award at the reception ceremony that afternoon. This was the first time I was meeting so many of the event organizers and founding board members. So to hear my name be called as an “Endo Hero of the Year” for all of my dedication and work done throughout the endometriosis community brought me to tears. The first thing I said while looking shocked was “really, me”? I didn’t even know they knew me! I wasn’t being of service for any recognition but that moment felt so phenomenal. It was a moment in time when I knew I had to keep pushing Sister Girl Foundation’s mission which is to educate Empower and spread awareness of this debilitating disease along with gynecologic cancers and illnesses. People are watching and truly listening to what I have to say.
To be asked to do an interview with EndoMarch is such an absolute honor, I’m truly grateful!
HQ: Why do you think not a lot of attention and resources are put into feminine health?
I know for me in my family when it comes to female stuff, there are certain things you don’t talk about in public. We weren’t supposed to talk about our private parts or else we were being “nasty,” or “grown,” it was something that happened in your home or with your doctor. My family is southern and I know my mother was not brought up having those types of conversations. You certainly weren’t talking about your lady parts or your period with your boyfriends or friends. Having those conversations about a woman’s private parts were not up for discussions. Sometimes it feels as if we’re still living and moving in different times.
When it wasn’t okay to talk about feminine health and for some cultures it’s still not okay. I feel that if we advance with the new generation we can change that. There isn’t a more in depth curriculum in schools outside of the general overview of male and female anatomy education they teach in health class. We can be the change we need to bring more conversation to light on this topic. Bring in experts who can speak about what’s normal and not normal as it relates to the menstrual cycle. We need to create a space where woman and young girls feel safe to speak about these issues without shame.
HQ: Where would you like to see your organization in 5 years?
I have a dream to create a Sister Girl App. I have the details laid out but I don’t want to go into too many details. It’s definitely something we are currently working towards right. As well as creating and facilitate workshops designed for women with endo and the people who love them. Our goal is to spread awareness, educate and provide resources all across the world. My platform has grown tremendously with the blessings of traveling all over the world. Sharing my health journey of how “I’m surviving the raging storms in my body.”™
I’ve taken on my Mentor & Sister Girl, Lucinda Cross-Otiti’s 100 “Big Ask” in a year Challenge, which began on August 29th, 2018. I have 98 more to go! The goal is to be bold and ask for what you want and need. There’s so much in the works for Sister Girl Foundation. I would love to create commercials for us by us. The Sister Girl’s Health & Wellness Retreat ™ held annually in different countries. We need to practice self-care more.
HQ: What do you want people to know about Endo and being an Endo Sister?