Friday, April 29, 2016

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.

Wednesday, March 30, 2016

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.


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!