ENDOMARCH NEWS & UPDATES
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?
Endo (Sister Girls) are some of the most resilient and strongest women I have ever had the pleasure of meeting. We’re loving and giving to others even while we are fighting with our own bodies regularly. Some of us deal with anxiety, depression and fear of the unknown. We are forced to deal with a lot of new normals in our lives. We’ve masked our pain and emotions because we were judged and accused of faking for attention. Endo affects 1 in 10 women and girls. Which is approximately 176 million women worldwide. It takes 10 years or longer to be properly diagnosed. We suffer with excruciating pain from endometriosis. There is no cure for endometriosis.
At times we feel hopeless and want to throw in the towel trying to find pain relief. It can be exhausting but we’re reminded by some of our supporters and ourselves that were warriors. We got this! I believe that in order to get through the many obstacles dealing with endo you truly have to be honest with yourself about your pain. As one of my Sister Girls told me “Its ok to grieve your health.” We have to share our truths about our physical and emotional well-being with our family, friends and physicians.
Remembering to keep in mind that no one knows our body better than we do. If at any point we don’t feel like we are being heard we need to communicate that, and if the doctor doesn’t listen us, it may be a wise choice to move on and find another doctor. Our bodies are our sacred temple and we can’t allow doctors or anyone else to make decisions that we’re uncomfortable with. Its important to be a part of our care plan. We also have to do our research and never be afraid to ask questions. No matter how ridiculous it seems because it’s not, it’s our health.
HQ: What is an insight or a piece of advice you wish someone would have told you when you first got diagnosed? Is there anything else you wish to say about endo, advocacy, awareness, or life in general?
One of the most important things I wish someone told me was that my voice mattered. Also, that it was okay to ask questions and be a part of the decision making regarding my health care needs. That a hysterectomy wasn’t a cure for endometriosis. I wish I had someone to help me navigate through the many hurdles I faced. One of the things that I want people to understand about women with endo is that we can use less judgments and more support. Don’t make us feel guilty about using a handicap sticker because we didn’t ask to be sick. We may look great on the outside buts it’s about what is going on in the inside. Please don’t make us feel guilty for not attending your event(s)or cancelling at the last minute. Our pain doesn’t give us warning before a flare. Please be mindful of your words and jokes. Something you may take lightly may be something a woman with endo is struggling with on a daily basis.
For example, when people tell me to go to the gym or that I’m gaining weight. When you’re on various medications that cause weight gain of course you’re going to be bigger. Having multiple autoimmune diseases, and you add steroids to my course of treatment, yes there will be weight gain. Let’s not forget the Chemotherapy infusion treatments for my rheumatoid arthritis. It’s truly hurtful, but you know your loved ones are trying to be helpful. A lot of these new changes to our bodies has become a part of our new normal. Some of us are still working through these changes mentally. Take some time to educate yourself on your loved ones illness(s). It will help you have a better understanding of how to provide support. These are some things for you to keep in mind when you’re trying to support an endo sister or sister girl. Thank you for the opportunity to share my story about my health journey with endometriosis and work with my Sister Girl Foundation. In the grand scheme of things I want women to know they aren’t alone. I want my team to know I’m very grateful for all of their support. They dedicate their time whenever I need them. A group of women with big hearts, what more can I ask for. I wouldn’t be able to accomplish all that I have without them. A huge THANK YOU, Angela Maye, Charisse Davidson, Natalie Blake, Wynika Brown, Lillie Ennis, Dorressa Allison, Jessica Quesada, Tashena Chambers. I also have to a heartfelt THANK YOU to our honorary members, Marius Maye & our youngest member, Jamir “JuJu” Maye. If you ask them they’ll tell you they work very hard for Sister Girl (I love it).
We may not always understand God’s plan but we do know he will work things out for the greater good. For all of my Sister Girls struggling with fertility issues I pray my story of faith gives you hope Science said I wasn’t able to have children. But my God blessed me with the gift of being able to have one biological child. Who is now twenty five years old with two beautiful sons of his own. A daughter in love. The blessings didn’t stop there. I have two bonus daughters, a bonus son, granddaughter and grandson from a previous marriage. I love them as if I birthed them. I also have three goddaughters.
I am also grateful to the community for supporting me and Sister Girl through the process and pushing me to keep going.THANK YOU to my family and friends who have supported me through my ups and downs... I truly love and appreciate you. We made it through some of the most scariest times together. I want you to know your support carried me through times when I thought this illness was going to kill me. Being in the hospital & rehab for over a month not being able to walk crushed my whole world. My first day of physical therapy I recall my brother on the sidelines cheering me on made me push harder to get better. Having one of my sister girl bring me my own person bedding to help me be comfortable in a situation that tried to break me.
Then another massaging my feet, legs and back. My mother was by my side every single day with a home cooked breakfast. I looked forward to her visits. One of my cousins made sure she was there to put me to bed, order my dinner, chat for hours and much more. I had close family friends come in and advocate for me when I couldn’t think clearly to advocate for myself. My Junior Women’s Club ladies came through and loved on me. My oldest grandson came to cheer me up and watch his favorite shows with me.
Just seeing my kids’ faces I knew there wasn’t any options of giving up even when I wanted to throw in the towel towards the end. I had that one cousin that was not having it, she quickly snapped me back into reality. I think we all may have these emotions at one time or another in our lives. It comes out of frustration of not being able to live how you want to. I loved when my nieces and nephews came, they kept me laughing in a stressful situation. I took selfies with each visitor because once they left I would talk to God and thank him for sending each of them to save me. It felt so sad when I was alone and prayed to God to help me get through that ordeal. Everything I prayed for, he delivered. The bibles, inspirational books, cooked meals, hugs, kisses, visits, quality time spent, baths, calls, social media messages, text and acts of kindness, prayers, etc. Lifted my spirits in moments where depression was trying to creep in. My Soldiers came deep and stood tall. For that I am forever thankful and blessed. I tell you one thing, my family and friends covered every base possible and helping me gain my strength, my health and my sanity.
I’m humbled that God chose me to walk through this journey. It’s my personal mission to reach as many women and provide one on one support. I pray that God continues to just give me an ounce of energy to accompany women with endometriosis and cancer to their doctor’s appointments. Although I deal with multiple illnesses on a daily basis I want to be that point of light for someone else. This is all the therapy that I need. I don’t want another women to go through some of the hardships I faced.
To all the women out there struggling with endometriosis, cancers and other illnesses please know that there is hope and light through your healing process. After all I’ve endured I know and believe that I am deserving of abundance. Allow your faith whatever that may be to overpower your fear. Remove your “mask” and don’t be ashamed to ask for help and accept it. There’s a quote by Oprah Winfrey that I say to myself every day “Turn your wounds into wisdom.” I speak life into everything that I do and my daily affirmations remind me that “I Am Sister Girl.”
Click here to access the recent Article by Nezhat et al on Genitourinary Endometriosis, or scroll down for the full article.
Genitourinary endometriosis: Diagnosis and management
Early recognition of this rare but potentially devastating disorder is essential to facilitate effective management and optimal outcomes for patients
Diagnosis & Therapy
Genitourinary endometriosis: Diagnosis and management
BY Megan Kennedy Burns, MD, MA; Michelle A. Wood, DO; Camran Nezhat, MD; Farr Nezhat MD
Perspectives on Endometriosis Management
Endometriosis is a benign disease characterized by endometrial glands and stroma outside of the uterine cavity. It is commonly associated with pelvic pain and infertility. Ectopic endometrial tissue is predominantly located in the pelvis, but it can appear anywhere in the body, where it is referred to as extragenital endometriosis. The bowel and urinary tract are the most common sites of extragenital endometriosis.1Laparoscopic management of extragenital endometriosis has been described since the 1980s.2 However, laparoscopic management of genitourinary endometriosis is still not widespread.3,4 Physicians are often unfamiliar with the signs and symptoms of genitourinary endometriosis and fail to consider it when a patient presents with bladder pain or hematuria, which may or may not be cyclic. Furthermore, many gynecologists do not have the experience to correctly identify the various forms of endometriosis that may appear on the pelvic organ, including the serosa and peritoneum, as variable colored spots, blebs, lesions, or adhesions. Many surgeons are also not adequately trained in the advanced laparoscopic techniques required to treat genitourinary endometriosis.4The purpose of this review is to describe the clinical presentation and diagnosis of genitourinary endometriosis and to discuss laparoscopic management strategies with and without robotic assistance.
Pathophysiology of endometriosisThe definitive cause of endometriosis remains unknown, but several prominent theories have been proposed. Among these, the most well-known is Sampson’s theory of retrograde menstruation through the fallopian tubes,5 although Schron had acknowledged a similar thought 3 centuries before.6 This theory posits that refluxed endometrial cells enter the abdominal cavity and invade the peritoneum, developing a blood supply necessary for survival and growth. Early reports supported this theory by suggesting that women with genital tract obstruction have a higher incidence of endometriosis.7,8 However, it was later confirmed that women without genital tract obstruction have a similar incidence of retrograde menstruation. In fact, up to 90% of women are found to have retrograde menstruation, but only 10% develop endometriosis. This suggests that once endometrial cells have escaped the uterine cavity, other events are necessary for endometrial cells to implant and survive.7,9 Other evidence to support the theory of retrograde menstruation is the observation that endometriosis is most commonly observed in the dependent portions of the pelvis, on the ovaries, in the anterior and posterior cul-de-sacs, and on the uterosacral ligament.10The coelomic metaplasia theory holds that endometriosis results from spontaneous metaplastic change to mesothelial cells derived from the coelomic epithelium (located in the peritoneum and the pleura) upon exposure to menstrual effluent or other stimuli.11 Evidence for this theory is supported by the observation that intact endometrial cells have no access to the thoracic cavity in the absence of anatomical defect; therefore, the implantation theory cannot explain cases of pleural or pulmonary endometriosis.Immune dysregulation also has been invoked to explain endometriosis implants both inside and outside the genitourinary tract. Studies have shown a higher incidence of endometriosis in women with other autoimmune disorders, including hypothyroidism, chronic fatigue syndrome, rheumatoid arthritis, systemic lupus erythematosus, Sjogren syndrome, and multiple sclerosis as well as in women with allergies, asthma, and eczema.12 In such women, dysregulation of the innate and adaptive immune system might promote the disease by inhibiting apoptosis of ectopic endometrial cells and by promoting their attachment, invasion, and proliferation into healthy peritoneum through the secretion of various growth factors and cytokines.13,14Other possible theories that might explain the pathogenesis of endometriosis exist.15-17 While each theory has documented supporting evidence, no single theory currently accounts for all cases of endometriosis. It is likely, then, that endometriosis is a multifactorial disease with a combination of immune dysregulation, molecular abnormalities, genetic and epigenetic factors, and environmental exposures involved in its pathogenesis.
Clinical presentation and diagnosis of genitourinary endometriosisWhile ureteral and bladder endometriosis are both diseases of the urinary tract, they are not always found together in the same patient. The bladder is the most commonly affected organ, followed by the ureter and kidney.3,18,19 Endometriosis of the bladder usually presents with significant lower urinary tract symptoms. In contrast, ureteral endometriosis is usually silent with no apparent urinary symptoms. Cyclic hematuria is present in less than 15% of patients. Some patients with ureteral endometriosis experience cyclic, nonspecific colicky flank pain.20-22 Otherwise, most patients present with the usual symptoms of endometriosis, such as pelvic pain and dysmenorrhea. In a systematic review, Cavaco-Gomes and colleagues described 700 patients with ureteral endometriosis; 81% reported dysmenorrhea, 70% had pelvic pain, and 66% had dyspareunia.23 Rarely, ureteral endometriosis can result in silent kidney loss if the ureter becomes severely obstructed without treatment.24,25The lack of symptoms makes the early diagnosis of ureteral endometriosis difficult. As with all types of endometriosis, histologic evaluation of a biopsy sample is diagnostic. Multiple imaging modalities have been used to preoperatively diagnosis ureteral involvement, including computed tomography,26 magnetic resonance imaging (MRI),27 intravenous pyelogram (IVP), and pelvic ultrasound. However, each of these imaging modalities is limited in both sensitivity and the ability to characterize depth of tissue invasion.In a study of 245 women undergoing pelvic ultrasound, Pateman and colleagues reported that an experienced sonographer was able to visualize the bilateral ureters in 93% of cases.28 Renal ultrasound is indicated in any woman suspected of having genitourinary tract involvement with the degree of hydroureter and level of obstruction noted during the exam.29 In our group, we perform renography to assess kidney function when hydroureter is noted preoperatively. Studies suggest that if greater than 10% of normal glomerular filtration rate remains, the kidney is considered salvageable, and near-normal function often returns following resection of disease. If preoperative kidney function is noted to be less than 10%, consultation with a nephrologist for possible nephrectomy is warranted.
In our group, IVP is often helpful for preoperatively identifying the level and degree of ureteral involvement, and it also can be used postoperatively to evaluate for ureteral continuity (FIGURE 1). Sillou and colleagues showed MRI to be adequately sensitive for the detection of intrinsic ureteral endometriosis, but reported that MRI often overestimates the frequency of disease.30 A 2016 Cochrane review of imaging modalities for endometriosis including 4807 women in 49 studies reported that no imaging test was superior to surgery for diagnosing endometriosis. However, the review notably excluded genitourinary tract endometriosis, as surgery is not an acceptable reference standard, given that many surgeons cannot reliably identify such lesions.31Unlike patients with ureteral endometriosis, those with bladder endometriosis are typically symptomatic and experience dysuria, hematuria, urinary frequency, and suprapubic tenderness.20,32 Urinary tract infection, interstitial cystitis, and cancer must be considered in the differential diagnosis. Urinalysis and urine culture should be performed, and other diagnostic procedures such as ultrasound, MRI, and cystoscopy should be considered to evaluate for endometriosis of the bladder.Ultrasound and MRI of the bladder both demonstrate a high specificity for detecting bladder endometriosis, but they lack sensitivity for lesions less than 3 cm.33 Deep infiltrating endometriosis of the bladder can be identified at the time of cystoscopy, which can assist in determining the need for ureteroneocystostomy if lesions are within 2 cm of the urethral opening.33 Cystoscopy also allows for biopsy to be performed if underlying malignancy is of concern.32 In our group, when bladder endometriosis is suspected, we routinely perform preoperative bladder ultrasonography to identify the lesion and plan to perform intraoperative cystoscopy at the time of laparoscopic resection.32,34
Figure 1. Ureteral constriction due to endometriosis, causing proximal hydroureter. If untreated, this may lead to silent kidney loss.
TreatmentMedical managementEmpiric medical therapies for endometriosis are centered around the idea that ectopic endometrial tissue responds to treatment in a similar manner as normal eutopic endometrium. The goals of treatment are to reduce or eliminate cyclic menstruation, thereby decreasing peritoneal seeding and suppressing the growth and activity of established ectopic implants. Medical therapy commonly involves the use of gonadotropin-releasing hormone agonists or antagonists, danazol, combined oral contraceptives, progestins, and aromatase inhibitors.Medical therapy is commonly employed for those with mild or early-stage disease and in those who are poor surgical candidates or decline surgery. Medical management alone is clearly contraindicated in the setting of ureteral obstruction and—in our opinion—may not be a good option for those with endometriosis of the ureter, given the potential for recurrence and potential serious sequelae of reduced renal function.35 Therefore, surgery has become the standard approach to therapy for mild to moderate cases of ureteral endometriosis.3 Medical therapy for those with endometriosis of the bladder is generally considered a temporary solution as hormonal suppression, with its associated side effects, must be maintained throughout menopause. However, if endometriosis lesions lie within close proximity to the trigone, medical management is preferred, as surgical excision in the area of the trigone may predispose patients to neurogenic bladder and retrograde bladder reflux.36,37
Surgical managementThe objectives of surgical treatment for genitourinary tract endometriosis are to excise all visible disease, to prevent or delay recurrence of the disease to the extent possible, and to avoid any further morbidity—in particular, to preserve renal function in cases of ureteral endometriosis—and to avoid iatrogenic injury to surrounding pelvic nervous structures.38-40 (FIGURE 2). The surgical approach is dependent upon the technical expertise of the surgeon and the availability of necessary instrumentation. In our experience, laparoscopy with or without robotic assistance is the preferred surgical approach.3,4,19,24,41-45
Others have reported on the benefits of laparoscopy over laparotomy for the surgical management of genitourinary endometriosis. In a review of 61 patients who underwent either robotic-assisted laparoscopic (n = 25) or open (n = 41) ureteroneocystostomy (n = 41), Isac and colleagues reported the procedure was longer in the laparoscopic group (279 min vs 200 min, P<.001), but the laparoscopic group had a shorter hospital stay (3 days vs 5 days, P <.001), used less narcotics postoperatively (P<.001), and had lower intraoperative blood loss (100 mL vs 150 mL, P<.001).45 No differences in long-term outcomes were observed in either cohort.In a systematic review of 700 patients undergoing laparoscopic surgery for ureteral endometriosis, Cavaco-Gomes and colleagues reported that conversion to laparotomy occurred in only 3% to 7% of cases.23In cases of ureteral endometriosis, laparoscopy provides greater visualization of the intraperitoneal contents over laparotomy, enabling better evaluation and treatment of lesions.3,42,46,47 Robotic-assisted laparoscopy provides the additional advantages of 3D visualization, potential for an accelerated learning curve over traditional laparoscopy, improvement in dissection technique, and ease of suturing technique.19,48,49In our group, we perform ureterolysis for extrinsic disease.38 The peritoneal incision is made in an area unaffected by endometriosis. Using the suction irrigator, a potential space is developed under the serosa of the ureter by injecting normal saline or lactated Ringer’s solution. By creating a fluid barrier between the serosa and underlying tissues, the depth of surgical incision is kept to a minimum and lateral thermal spread is minimized. Grasping forceps are used to peel the peritoneum away.38,50,51
Unlike extrinsic disease, intrinsic disease can infiltrate the muscularis, lamina propria, and ureteral lumen, resulting in proximal dilation of the ureter with strictures.21 In this situation, ureteral compromise is likely and resection of the ureter is indicated.3,41 (FIGURE 3). Intrinsic disease can be suggested by preoperative imaging or when there is evidence of deep infiltrating disease on physical exam, such as rectovaginal nodularity.43,52 When intrinsic ureteral disease is known, consultation with a urologist to plan a joint procedure is advisable. The procedure chosen to re-establish a functional ureter following resection is dependent upon the location and extent of the involved ureter. Resection in close proximity to the bladder may be repaired by ureteroneocystostomy with or without psoas hitch,43,52,53 whereas resection of more proximal ureter may be repaired using Boari flap, ileal interposition, or autotransplantation. Lesions in the upper third or middle ureter may be repaired using ureterouretral anastomosis.19,20,43,54-56
FIGURE 3. Hydroureter caused by extrinsic compression of the ureter from endometriosis.
Surgical treatment for bladder endometriosis is dependent upon the depth of invasion and the location of the lesion (FIGURE 4). Lesions of the superficial aspect of the bladder identified at the time of laparoscopy can be treated with either excision or fulguration.41,48,57 In our group, we perform excision over fulguration in order to remove the entire lesion and obtain a pathologic diagnosis. Deeper lesions involving the detrusor muscle are likely to be an endometrioma of the bladder. In these cases, laparoscopic excision is recommended.20 Rarely, lesions close to the interureteric ridge may require ureteroneocystostomy.32,58In our experience, laparoscopic resection of bladder endometriomas is associated with better results in terms of symptom relief, progression of disease, and recurrence risk compared with other approaches. When performing laparoscopic excision of bladder lesions, we concomitantly evaluate the bladder lesion via cystoscopy to ensure adequate margins are obtained. Double-J stent placement is advised when lesions are within 2 cm of the urethral meatus in order to ensure ureteral patency during the postoperative period.58 A postoperative cystogram routinely is performed 7 to 14 days after surgery to ensure adequate repair prior to removing the urinary catheter.22,38,59,60Follow-up after treatment of genitourinary tract endometriosis should include monitoring the patient for symptoms of recurrence. Regular history and physical examination, renal function testing, and, in some instances, pelvic ultrasound, all have a role in surveillance for recurrent ureteric disease. IVP or MRI may be warranted if a recurrence is suspected. A high index of suspicion should be maintained on the part of the clinician to avoid the devastating consequences of silent kidney loss. Patients should be counseled about the risk of disease recurrence, especially in those not undergoing postoperative hormonal suppression.In conclusionWhile endometriosis of the genitourinary tract is rare, patients can experience significant morbidity. Medical management of the disease is often limited by substantial adverse effects that limit treatment duration and is best used postoperatively after excision. An adequate physical exam and preoperative diagnostic imaging can be employed to characterize the extent of disease. When extensive disease involving the ureter is suspected, preoperative consultation with a urologist is encouraged to plan a multidisciplinary approach to surgical resection.The ideal approach to surgery is laparoscopic resection with or without robotic assistance. Treatment of ureteral disease most commonly involves ureterolysis for cases of extrinsic disease but may require total resection of the ureter with concurrent ureteral reconstruction when disease is intrinsic to the ureter. Surgery for bladder endometriosis is dependent on the depth of invasion and location of the lesion. Superficial bladder lesions can be treated with fulguration or excision, while deeper lesions involving the detrusor muscle require excision. Lesions in close proximity to the interureteric ridge may require ureteroneocystostomy. Follow-up after excisional procedures involves monitoring the patient for signs and symptoms of disease reoccurrence, especially in cases of ureteral involvement, to avoid the devastating consequences of silent kidney loss.
FIGURE 4. Severe endometriosis of the bladder serosa causing adhesions to the anterior uterus.
Dr. Burns is Fellow, Camran Nezhat Institute, Palo Alto, California.Dr. Wood is Fellow, Camran Nezhat Institute.Dr. C. Nezhat is Director of the Camran Nezhat Institute and Founder of Worldwide Endometriosis March.Dr. F. Nezhat is Director, Nezhat Surgery for Gynecology/Oncology, PLLC, New York, New York; Clinical Professor, Weill Cornell Medical College of Cornell University, New York, New York; Clinical Professor, Stony Brook University School of Medicine, Stony Brook, New York; and Clinical Professor, NYU Winthrop Hospital, Mineola, New York.The authors report no financial relationships relevant to this article.
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