Many of you have read my blog entry Stress Levels May Affect Endo, which can be found here. In that blog, I mention Dr. Caroline Appleyard, her colleagues, and their research. Dr. Appleyard and Dr. Flores Caldera have agreed to answer some questions I’ve posed to them. Both doctors are incredibly busy; however, have still managed the time to answer these questions!
Q&A Session with Idhaliz Flores Caldera, Ph.D.
Do you have Endometriosis?
Yes, I have laparoscopically confirmed endometriosis. It also runs in my family – my two sisters have endo too.
If so, do you mind sharing a bit of your own story and journey? If not, what got you interested in studying Endometriosis?
I was diagnosed with Endo at 28 y/o, although I had painful periods all my life, and suffered from several sudden bouts of severe pain episodes that required emergency hospitalization, but no one knew the cause. After my diagnosis, I suffered 8 years of infertility due to Endo. I have tried all available treatments and have undergone 4 surgeries, but the disease kept progressing. As a molecular biologist I started wondering what was the cause of Endo, whether there was research about molecular mechanisms underlying this disease, but I noticed that back in 1994 there was very little research done on Endo. I decided to apply my knowledge and expertise to understanding my own condition. I applied for and obtained NIH funding to study the epidemiology, molecular biology and genetics of Endo. I have conducted research on Endo non-stop since 2001. I have been fortunate to have collaborators from other fields (physiology, neuroscience, genetics, pathology, statistics, psychology and public health specialists) who have joined me in these efforts. We have now over 10 publications in the field and more coming, and close to a hundred presentations at national and international scientific meetings, including the World Congress on Endometriosis.
There are so many theories regarding the cause of Endometriosis. Which theories have your studies caused you to focus on as the cause?
I have been interested in identifying the genetic factors involved in endometriosis (we showed that there is a genetic component in chromosome 10 associated to endo in the Puerto Rican population).
Also, I have researched the molecular mechanisms that could explain the attachment, survival and growth of ectopic endometrium that would lead to lesions (Sampson’s theory).
Do you feel that Endometriosis symptoms can be controlled by diet and supplements?
I can’t provide hard facts on this since our research is not focused in this area. However, there are some reports in the literature supporting a beneficial role of high vegetable/low fat diet, of omega-3 supplements and also of certain vitamins (not as supplements but directly from food sources – look for studies by Missmer et al – for endometriosis symptoms. Anecdotically I have heard patients state that changes in diet have helped with symptoms.
How do you feel about hysterectomies as a cure for Endometriosis?
I can’t comment since this is a very clinical question beyond the scope of my expertise. However, I have heard reports of women who continue suffering from symptoms after the hysterectomy. In addition, it is important to note that pelvic pain can be due to many other causes which need to be ruled out.
You’ve both worked on the stress-related Endometriosis studies. Thank you!! What other studies are you/have you worked on regarding Endometriosis?
We have researched the genetic basis of endometriosis, the discovery of non-invasive (blood, serum) diagnostic biomarkers for endometriosis and potential new targets for therapy using cell lines and animal models. We have also researched the impact of endo symptoms on quality of life, work productivity and health insurance costs.
Do you plan on conducting human studies regarding the stress and Endometriosis relationship?
We are very interested in continuing our research on the effects of stress on endometriosis in human subjects. It is important to confirm our findings using the animal model in humans. I would be very interested in testing how stress management can influence the symptoms and the quality of life of patients. Also, to explore what coping mechanisms are most effective to deal with symptoms and improve quality of life.
Where do you see medical care and treatment headed for Endometriosis over the next 10-20 years?
I would like to see centers of expertise in each country, where patients can be managed through a multidisciplinary team of experts that include not only medical professionals (gynecologists and other related specialties such as reproductive endocrinologists), gastroenterologists, urologists, physiatrists and pain management specialists, but also allied health, psychologists, nutritionists and which incorporate stress management techniques.
I would like to see more research on non-hormonal, targeted treatments for endometriosis that have less side effects and do not preclude women of keep trying to get pregnant if they so desire. I think there is a lot more to be done with immune-based therapies, and with small molecules that specifically target cell signaling mechanisms shown to be aberrantly regulated in endometriosis. There is a lot to learn and take from the cancer research field, as endometriosis and cancer share many of the same molecular pathways.
Any words of advice for Endometriosis sufferers who may be reading this?
Don’t take your symptoms lightly – they are a matter of concern; seek for different alternatives to alleviate pain and/or infertility. Don’t be afraid to ask questions and to get second or third opinions.
Document your symptoms; learn what helps, what makes them worse. Seek other specialists and alternative medicine approaches. Make relevant changes in lifestyle that will improve health overall and the symptoms of endometriosis also, including eating a healthy diet, maintaining a healthy weight, doing exercise and getting sufficient rest and sleep, and finally engaging in activities to manage their stress, whatever they may be. And speak up, educate others (especially teens), & volunteer in patient-based organizations. Everyone can help to raise awareness.
What can we do to help you and the medical community?
Increase awareness of endometriosis as a real disease that requires a multi-faceted, long-term and personalized approach for management. To the medical community and the general community, to understand that if you don’t see the pain doesn’t mean it isn’t there; to be empathetic to women suffering from a disease with no cure and limited effective symptom management approaches. To the employers and co-workers, to start a conversation with women with endometriosis who are co-workers to understand their disease and provide avenues to improve their productivity at work during their good days while ensuring they receive appropriate treatment.
If you would like to follow Dr. Flores Caldera’s and Dr. Appleyard’s efforts in Puerto Rico, you may do so by the following:
Facebook: Endometriosis Puerto Rico and EndoTeens Groups; Fundacion de Pacientes Puertorriqueñas con Endometriosis Fan Page
Also, if you would like to keep apprised of these Question and Answer sessions, you can follow them by clicking here. I will update them as regularly as I receive any further feedback from Drs. Appleyard and Flores Caldera.
I would like to personally thank Dr. Flores Caldera for taking the time to thoroughly review and respond to these questions. And for sharing her personal struggle with Endometriosis with us! Together, we can help spread awareness, education, and moral support. We are not alone. We are a mighty force!