Reproductive Endocrinologists #StartAsking: National Infertility Awareness Week 2016

40% of patients struggling with infertility have endometriosis. My guess is that many more patients in the unexplained category also have endometriosis. There is a 7-10 diagnostic delay. Often Reproductive Endocrinologists are on the front line and are a part of that diagnostic delay and also part of the mistreatment of patients.

Here is what I wish Reproductive Endocrinologists would #StartAsking patients in order to diagnose endometriosis sooner and offer the best of care.
1. Do you have painful periods?
2. Do you have pain with intercourse?
3. Do you have any painful bowel movements, constipation and/or diarrhea?
4. Do you have frequent urination? History of urinary tract or kidney infections?
5. Do you have any back pain?
6. Do you have any leg pain, hip pain or sciatic pain?
7. Do you have a lot of fatigue?
8. Does anyone in your family have a history of endometriosis, unexplained hysterectomy or painful periods or undiagnosed infertility or pregnancy loss?

If a patient answers yes to a good amount of these questions, I wish they would mention endometriosis. I would want Reproductive Endocrinologists to not ONLY think about fertility, but #StartAsking:
1. How are these symptoms overall impacting your quality of life? How is your level of functioning on a daily basis, especially during your period?

If patients are truly suffering with the majority of these symptoms, I wish Reproductive Endocrinologists would tell patients that one option is to go in and do ablation on the endometriosis of the reproductive organs. But I wish they would ALSO tell patients, the majority of the disease would still remain and pain would probably not improve. I wish they would tell patients that there are other endometriosis excision surgeons that exist, who through thorough excision surgery, could remove endometriosis from the entire pelvis to give patients a better chance at relief, a better chance at a improved quality of life and improved fertility. I wish they would tell patients that going straight to IVF could result in pregnancy, but cutting out all of the disease first and reducing overall inflammation in an option with another doctor that is worth looking into.

I wish Reproductive Endocrinologists would #StartAsking :
1. Other expert endometriosis excision surgeons how excision surgery benefits their patients.
2. For referrals for their patients who are very sick and above their skill level for removal.
3. For more training in removal and treatment of the disease.
4. For methods of getting the most up to date information from those on the front lines of fighting endometriosis and infertility to best help patients.
5. Knowledge on how to discern if patients have asymptomatic endometriosis that is impacting their fertility.
6. Insurance companies to cover egg freezing for young endometriosis patients who want to preserve their fertility, just like cancer patients do.
7. For better education on how pelvic floor therapy, counseling and change in diet could also help endometriosis.

Many reproductive endocrinologists warn patients that operating for endometriosis can harm a patients fertility, why not just go straight to IVF?  Operating on endometriomas, complex endometriotic cysts, is controversial and there are arguments for removing them and leaving them when attempting IVF. There is a risk for lowering egg reserve and even completely shutting the ovary down, especially for older women, when operating on them, especially with a less than competent surgeon. If a surgeon does not know how to remove it properly, the chances of endometriomas coming back are high. But there are also risks leaving them as well when attempting egg retrieval, especially if they are massive.

But what is NOT controversial is that going to an expert and having complete excision, removing inflammatory cytokines, only can improve fertility. Even if a patient decides to leave the endometriomas, going to an excision surgeon and removing all of the disease off the bladder, ureters, bowels, peritoneal wall, the area in between the vagina and the rectum, will not only help fertility but make the patient feel so much better. This in an option that a patient DESERVES to know about from their DOCTOR when talking about not only their fertility, but more importantly, THEIR OVERALL QUALITY OF LIFE.

Patients go into a Reproductive Endocrinologist scared and unsure about their future. Even though patients pay doctors, somehow our culture dictates that doctors are the ones with the power. Patients often don't know any better and don't know the right questions to ask. As an advocate, I work with patients to #StartAsking the right questions every single day.

But Reproductive Endocrinologists, I implore you, YOU also need to #StartAsking the right questions, to not only patients, but to your peers who are dedicating their lives to helping only endometriosis patients. They have important information for you, important information for your patients.

DC Endomarch 2016

 

 

This year I had the absolute pleasure of attending and speaking at the Washington DC EndoMarch.   As an advocate it is always so refreshing and inspiring to be around other patients who have traveled from near and far to get their voices heard. Barbara Page from EndoMarch and Mariela Guzman from Latina Endo did an great job organizing the event and to them I am grateful. I also got to hang out with Team Florida. Amazing ladies!

 

 

 

I also got to hang out with the incredible Dr. Jhumka Gupta! Have you read her amazing speech on Huff post yet?

 

 

 

 

For those of you that couldn't be there in person, here is a chance to read the speech I wrote for the event.

EndoMarch 2016 Speech

Endometriosis patients, I see you.

I see all of the incredible things that you do every single day.

I see you take care of family members, friends and doing things to improve your community even though you are so fatigued and in so much pain.

I see what you battle every day.

I see how you were up all night in pain. I see your swollen abdomen. I see your fatigue. I see how you not only fight your disease, but also fight with doctors, hospitals, insurance companies and pharmacies to get treatment for your disease.

I see how brave you are.

I see you looking up doctors in different states, traveling to get your best shot at care. I see you as you say goodbye to your loved ones and walk into the operating room, not knowing how long or how extensive your surgery will be. I see you taking chance on a surgery you could only hope will help you better without any guarantee.

I see how resilient you are.

I see how you have had failed surgeries with terrible surgeons and yet you keep pushing for better care. I see how you have been told by so many people that your pain is not real. Yet, you keep pushing back, saying, “My pain IS real and I DO NOT deserve this!”  I see you!  

As a mental health provider for endometriosis patients, I get the honor and privilege to travel along with patients during their difficult journey. As a patient myself, with severe endometriosis, I understand the devastation, the loss, the grief and the trauma patients feel. Patients come to me saying, “I don’t understand, I feel so hopeless. I feel so anxious. I feel so depressed.”

Anxiety and depression is a common battle for endometriosis patients. No wonder why? Not only do we deal with the ramifications of the disease itself, but patients are told FOR YEARS that nothing is wrong with them, while being in horrific pain. Patients go from doctor to doctor getting diagnosed with things like IBS or stress getting written off time and time again. Patients’ fertility is compromised and they sometimes suffer recurrent pregnancy loss, go for YEARS of unsuccessful fertility treatments only many years later to find out that endometriosis was at the root of their issues.

Society doesn’t recognize the profound implications of endometriosis, leading patients to feel misunderstood and isolated at best and at worst, judged and dismissed by those around them who feel they are hypochondriacs.

Hypochondriac is defined as having an obsession with the idea of having a SERIOUS but UNDIAGNOSED medical condition.

Endometriosis patients have a SERIOUS medical condition that is often UNDIAGNOSED.

BIG DIFFERENCE!

Who is truly unstable? Is it endometriosis patients OR the people who tell endometriosis patients for years that they are perfectly healthy, their pain is normal and it is all in their head?

We have the term hypochondriac, but we do NOT have a term yet for those people who constantly dismiss suffering patients time and time again.

Endometriosis patients, we are not weak. We are some of the strongest people I know. We do not have a low pain tolerance. We do incredible things while in horrific pain. We are not attention cravers or drug seekers. What we crave is understanding and acceptance from those around us and what we truly seek is affordable care, educated doctors, better treatment options and a cure. The problems we have are not in our head, but throughout our pelvis, causing incredible pain and inflammation. We have a real disease that deserves respect and attention. We are weary and we are tired, but we will not stop advocating until our voices are heard.


It was amazing seeing all of the incredible things happening this March for Endometriosis Awareness Month! Hope to see you at some of the events next year!

 

 





Giving Tuesday: Endometriosis and Infertility Edition 2015

Every day I am super inspired by all of the incredible folks around me in the endometriosis and infertility communities fighting to make our world a better and safer place for patients worldwide.

Giving Tuesday is a great way to support these amazing non-profits. There is SOOOOOO MUCH work to be done before we reach the awareness and outreach status we can see in the AIDS Community and in the Breast Cancer Community. We have so much to learn from those advocates who fought stigma and raised awareness and funds for research to make huge strides towards improving the lives of patients. Any way you give today will help propel us to where we need to be.

Here is a list of great non-profits and projects to choose from!

Endometriosis

The Endometriosis Foundation of America
The EFA has come such a long way in the last two years, from a small non-profit that was only known for their Medical Conference and their Blossom Ball, to an adolescent education machine through their ENPOWR Project. They go into classrooms and educate teens about endometriosis. Can you imagine if you knew about endometriosis when you were a teen? How would an earlier diagnosis have changed your life?

World Endometriosis Research Foundation
How do we find a cure for endometriosis? How we will know what causes endometriosis so we can develop better drugs to treat it and even PREVENT it in future generations? RESEARCH. RESEARCH. RESEARCH. Endometriosis is woefully underfunded when compared to other diseases. Money is desperately needed to help advance our knowledge of the disease.

Endo WHAT?
Shannon Cohn directed and produced an incredible documentary that will shine a needed spotlight on this debilitating and life altering disease that many people have not even heard of. Supporting her film will help change society's awareness and have a profound impact on the lives of endometriosis patients worldwide.

Worldwide EndoMarch
Every year endometriosis patients and their supporters gather to make their presence known on a global scale. These marches bring a much needed awareness to a disease that impacts so many.

Infertility

RESOLVE
RESOLVE, The National Infertility Association, wears many hats and helps the infertility community in many ways. RESOLVE dedicates themselves to advocacy, fighting for bills that would directly improve the lives of those effected with infertility. RESOLVE also organizes nation wide free supports groups that help patients feel understood and less alone. Finally RESOLVE strives to educate the patient community and society at large to reduce the stigma of infertility.

HAVEABABY
HAVEABABY is a powerful film that documents couples struggling with infertility hoping to win a shot at IVF to build their family. It is a thought provoking and heart wrenching film that is destined to reduce the stigma of infertility and bring awareness to society on a grand scale.

Realizing what Counts

I am slowly--but surely--coming to terms with the fact that I will NEVER have abs like these.

Jillian Michaels an endosister and adoptive mama truly being extraordinary through fitness and helping others.

 

                                             I have stopped counting my steps.

                                  I have stopped counting weight watchers points.

          I have stopped joining online exercise groups and drinking shakes for breakfast.

                      I have stopped beating myself up for living an authentic life.

 

At 36 years-old, as an endometriosis surgical veteran and infertility survivor, having a body seen on most magazine covers would take extraordinary measures on my part. I would need to tirelessly watch what I eat, obsessively counting calories. I would need to dedicate a good portion of each day to exercising in a methodical and intense way. Trying to mold my body into what I see exalted in the media would have to be my top priority. Even if I did all of these things, there would be no guarantees that I would be happy with the results.

I recently had my annual physical with my GP. Life was incredibly stressful leading up to the physical. We were in the midst of a family crisis that needed some major life changes in order for us to be happy and thriving again.  There was little time to exercise and lots of times to stress eat. I dreaded going to my doctor. The number on the scale rivaled that of my pregnancy weight. I prepared myself for a lecture. Instead I got a, "Hey great job, your cholesterol is down and your blood pressure is good. You are doing great. See you next year." So wait, my GP didn't care that I don't look like a Victoria Secret model? Did she not care about the excess weight I gained? She is happy with how I am doing? Why am I NOT happy with how I am doing? I was counting on her to reprimand me seeing as I had been demeaning and yelling at myself for months. Where was this self-loathing coming from?

 

I recently went home for my Great Aunt's wake. No one mentioned anything about my Great Aunt's physical appearance at her wake or funeral. No one mentioned how thin she looked at that one wedding in 1985 or that year she gained a lot of weight then lost it. No one remembered and no one cared. Everyone talked about her legacy of selflessness, of thoughtfulness and of service. Her loved ones spoke about her endurance, humor and generosity. It was these qualities that were so greatly missed and will be mourned.

 While at home, I spent a lot of time with my mom, my aunts and my grandma. I was overwhelmed by the negative talk I heard many of them say about their own physical appearance. They said things like, "Oh, I look terrible!" or "My arms are so fat." or "I don't fit into any of my clothes anymore. I hate my stomach." I think if you asked them to rate their physical appearance they would not speak kindly of themselves. I realized that a lot of these attitudes are learned behavior. Who knows how many generations of women this line of thinking has been passed down to? How do I stop the cycle when we as a society thrive on picking apart people's weight and physical appearance?

 It came to me that it is not enough to tell our daughters, nieces, patients, students that they are smart and beautiful, but we need to deeply feel it ourselves.   It is confusing to these young impressionable women to see their role models have self-deprecating views on their body, who often look a lot like their own. We need to love ourselves, even our imperfections because they help make us who we are. We need to love our strengths and accept our challenges. We cannot let anyone else's thoughts or actions stop this from happening. Instead of picking ourselves apart or letting others do it for us, we need to keep ourselves whole by loving and accepting ourselves. 

My mom, my aunts and my grandma will also be remembered by their loved ones for how deep they loved. These women work to help support their families. These women put their families first. These women are incredible and thoughtful friends, neighbors and members of their community. Instead of worrying about our physical appearance and beating ourselves up for it, we need to appreciate who we are and all we do for those around us. We need to look at our priorities and ask ourselves if how we are spending every day is in line with the legacy we want to leave behind.

I do want to make self-care a priority, but I do not want to take extraordinary measures to reach the unreasonable standards society has put on women to "look amazing." I am not buying it!  I.AM.DONE. I want to work instead on BEING amazing.

What does this mean? I am going to keep up the exercise that makes me happy and healthy but not beat myself up over skipping a week of working out if I am overwhelmed. I am going to overall try to eat healthy, BUT take pleasure in eating, drinking wine and enjoying dessert. As hard as it is, I am not going to worry about my dress size or how much I weigh. I will not use the word gross or blech ever when looking in the mirror. I will look in the mirror and try to appreciate myself.

 I am also going to be gentle with my body. My body has been through a lot and the journey is not over. I was lucky to be able to have a daughter and gave birth via C-section to her 6 weeks early. I have had 5 endometriosis related surgeries, the last of which had four specialists scrubbed in. I have had four miscarriages and many failed fertility treatments. My body is worn and weary. It has been traumatized. There are days I am so exhausted that I cannot exercise. There are days I am in pain. There are some days I am so bloated I look pregnant (and have been asked if I am-- for the love of everything holy:  STOP ASKING WOMEN IF THEY ARE PREGNANT. Even if you see the baby coming out of her vagina, politely make other conversation until SHE brings it up. ) I have to remember that my body is my partner and continues to work with me under great duress. My body is doing its' best, as am I.

I am hoping this new freedom of acceptance leaves more mental space and energy to work on my legacy. How do I want to spiritually and mentally nourish myself and those around me? What footprints do I want to leave for those to follow?  How will I bring more love into this world?

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Honoring an Incredible Woman

Forgive me as a take a break from posting about endometriosis and infertility to share the eulogy that I wrote for my Aunt Dot. My Aunt Dot was an incredible woman. Thank you for reading.

 

On November 4th, 1933, Aunt Dot was born to Kathleen and Robert Phair, joining older sisters Evelyn and Sis, and eventually becoming and older sister herself to Grace.

 

As her sisters went on to marry and have children, Aunt Dot forged her own path, shining as an athlete and starting what would become a life of service with at risk girls with the Good Shepherds. This work built the start of a foundation of faith that would carry her throughout her life.

 

Aunt Dot was completely devoted to her family and friends. Many of Aunt Dot's friends became her family. I was told last night at the wake that for many sitting her today, years passed before they realize that "Aunt Dot" was not actually a blood relative. Her nieces and nephews and the generations that followed brought her such joy and laughter. She had this way of making every single one of us feel special with her love and her thoughtful questions about our lives. You truly felt how appreciative she was just to be in your company. When you tried to ask how she was doing, she always answered, "I'm great." and quickly turned the conversation back to you.

 

Aunt Dot endured many hardships in her life and often lived in pain. Her faith told her that there was a reason for everything. After losing her leg, the Good Shepherd Volunteers from years ago reunited and started gathering again. Aunt Dot told me that losing her leg was the best thing that ever happened to her; that is saved her life because it reconnected her to friends and faith experiences that would go on to be an integral part of her life.

 

That was Aunt Dot. Perpetual hope. Not only was the half glass full, but ain't we lucky to have a glass? It is hard to explain Aunt Dot to those who didn't know her. I am comforted that all of you understand when I say that she was extraordinary, rare and special. She never complained. She exuded love and faith with every ounce of her soul. Aunt Dot was full of joy. Every day, despite her suffering, she woke up and make a choice time and time again to be happy.

 

In her last 24 hours, Aunt Dot managed to still give to those around her. She shared laughter, love and her knowledge of life after death. During her anointing, she asked the priest not to pray for her, but for her family. She professed her love for each and every one of us. Hours before her death she exclaimed, "This is the best day of my life." She was fearless in life and death.

 

In closing, I wrote the following prayer to try and inspire me to be extraordinary.

 

Aunt Dot’s Prayer

When the world around me is crashing down, when nothing seems as it should,

May I have faith that God is here and find a greater good.

When I’m in despair and one more step I cannot complete.

May I have the grace to just be grateful that I still have feet (or one foot).

May I find hope in the sadness, laughter in the tears.

Generosity of spirit, to pass along the years.

May I see God in all I meet, have faith and pray.

Listen, be thoughtful and grateful for each and every day.

And in my last remaining days, when the temptation’s to be sad,

May I thank God for all the love and joy that I’ve ever had.

 

 

 

 





 

 



 

 

 



You Are Not Alone NIAW 2015

Every month, a group of women from all over Westchester County gather together and talk about infertility in a safe space. During this monthly RESOLVE support group meeting, women show up and talk about the challenges, heartbreaks and devastations that infertility inflicts. If the group is going as it should, as the leader, I usually sit back and let the women talk amongst themselves and take ownership of the group, taking it where it needs to be for that evening. By the end of the meeting, group members who initially felt all alone before coming to the group are now exchanging phone numbers with veteran group members. A supportive safety net develops.

I always bring my group members chocolate and potato chips.

As a mental health provider to infertility patients, I am often the first person that a patient will talk to, outside of her partner or doctor, about her struggle with infertility. I also am often the only other person she has ever spoken to that has also struggled with recurrent pregnancy loss, infertility or endometriosis. Usually, before the patient and I even start to address the anxiety or depression that often accompanies infertility, I initially spend time with my patient validating her experiences and feelings. I assure her she is not “crazy” and that she is truly in crisis and that this is a traumatic time for her.

 Most patients who come to me feel completely isolated from their family, friends, co-workers and really from society at large. Infertility is not yet understood or recognized as the devastating mental and physical health crisis that it truly is. The fertile world has yet to learn how to respond compassionately to the 1 in 8 struggling with infertility, either ignoring patient’s realities or saying hurtful and ignorant things to those already struggling. Patients are left to suffer in silence, alone, which only deepens the sense of loss that a patient is already feeling.  

I always make sure to send patients resources to get them connected and invested in the infertility community. I encourage patients to follow me on twitter and I introduce them around to the infertility community there. I tell them to look at the RESOLVE website and find a support group in their area. I encourage patients to participate in RESOLVE Advocacy Day and meet other patients from across the country who have been deeply impacted by infertility.  If she is an endometriosis patient as well as an infertility patient, I send her other helpful resources to find support and understanding. Connecting to others and reaching out during this time of crisis has a positive impact on mental health. It is much harder to feel alone when you are connected to others that get it and empowered.

 

As a health care provider in the infertility world, my job essentially is to try and be a net that holds patients in a protective space while they are struggling. My job is to connect patients with resources that will help lift their spirits during this difficult time. I cannot make patients feel less scared or more certain about their future, because I have learned that infertility is unpredictable to its’ very core. I cannot control the outcomes of patients’ family building journeys, although I wish with all my might  that I could. But, what I can do is help patients feel less alone by not only my individual work with them, but more importantly, by connecting them with others who are in the trenches struggling with infertility on a daily basis.

Proud to be blogging as a part of RESOLVE's Bloggers Unite during National Infertility Awareness Week. For more information about infertility please check out:

http://www.resolve.org/about-infertility/what-is-infertility/  (Basic understanding of the disease of infertility.)

http://www.resolve.org/national-infertility-awareness-week/about.html (About NIAW)

 Also if you are an infertility and/or endo patient please check out my documentary which I hope will make you feel less alone.

EndoTruths: Infertility and Mental Health

Endometriosis and Infertility each can be devastating in their own right. But, experiencing both at once,  often leaves patients to suffer for years through misdiagnosis and mistreatment from the medical community. By the time patients get the help they need, often their fertility has been compromised and their feelings of anxiety and depression are overwhelming.

I reached out to the endometriosis community and asked patients to come and meet up to speak about their experiences with the disease. What came from this was 8 hours of footage of patients bravely talking about their unbelievable journeys with endometriosis and infertility. Their stories were heartbreaking, yet their spirits unbreakable. They spoke from their hearts and from their souls. They talked about how devastating the disease has been and the impact it has had on their mental health. They talked about what gets them through the day and what gives them hope, despite their pain.

I am incredibly grateful to these brave souls who came and testified. I know their stories will help others. Many MANY thanks to Dr. Sallie Sarrel , Jen Rutner , April  , Amanda , Marin , Lauren Tait, Lauren, Colleen, Chelsea Kern and Joe Faller, our needed male perspective, for your time and for sharing your story.

I have never been more proud of a project. I feel this represents so much of what I cover in my daily work counseling patients worldwide and through my group work through RESOLVE and EndoWarriors. The more we talk about these issues, the less patients will feel all alone.

You are not alone. We are all in this together.