iCareBetter Launches Center For Endometriosis Long-Term Care
iCareBetter Launches Center For Endometriosis Long-Term Care
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Based on patients’ needs and considering the lack of appropriate endometriosis care, iCareBetter launches Endometriosis Centers for long-term care. The centers’ focus will be long-term endometriosis care before and after excision surgery. We will collaborate closely with excision surgeons, physical therapists, and other providers on iCareBetter to offer long-term multidisciplinary care to endometriosis patients. We believe that excision surgery is the gold standard of treatment for endometriosis, and we also believe that patients need an ongoing care plan and monitoring after excision surgery, even if the best surgeons in the world do it.
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This is Dr. Saeid Gholami, the founder of iCareBetter. I have an important announcement to make today. But first, let me take you on a journey with me through the last three and a half years.
Phase I – it starts with surgery.
In my exposure to endometriosis patients as a medical student and then as a primary care doctor, I have always tried to find a solution to identify trusted resources for patients. A few years ago, right at the beginning of the pandemic, while the world was going upside down, I started working with a team of the best endometriosis surgeons and advocates to create a vetting system to find and introduce skilled excision surgeons. The vetting was based on a New England Journal of Medicine article and assessed surgical videos in a double-blind process.
This vetting made some people uncomfortable. However, the vetting confirmed the skills of the best surgeons in the world and introduced some new excision surgeons with a limited chance to prove themselves in a space where everyone claimed expertise without proof. This led to a transparent process that let patients make informed decisions about their excision surgeons. This innovation put us on the map and made us a significant platform in the endometriosis world.
Phase II – add multiple disciplines
After successfully launching video vetting for surgeons, we sought other opportunities to support endo patients. Our conversations with patients taught us that the community needs vetted physical therapists (PT) who understand endometriosis and its complex care requirements. Therefore, we introduced the iCareBetter Physical Therapy vetting and built a network of PTs. Our list of PTs kept growing, and after two years, many advocates and patients are using it daily and promoting the importance of physical therapy for endometriosis patients. The PT directory has been very helpful for patients, and we have over 120 physical therapists in almost all the US states. And thousands of patients have used iCareBetter to find a PT to help with their endometriosis.
Similarly, we added urologists, dietitians, and pain specialists so patients can use iCareBetter for most of their endo-related issues.
Phase III – Artificial Intelligence for endometriosis
Right after the launch of Chat-GPT and the excitement around artificial intelligence (AI), we launched an AI-powered chat tool called endometriosis.AI. This created massive excitement, and many patients started using it. As a result, we ran out of server capacity within three days after launch and had to shut it down to avoid going into debt for server costs. As I am speaking with you, thousands of patients have used it and keep using it to acquire information about endometriosis. With the launch of endometriosis.ai, we made endometriosis the first disease community to have its specialized AI discussion. This was in sharp contrast with the history of endometriosis, which is always among the last diseases to be considered in other situations, such as surgical tools, medications, and others.
Moreover, we have published hundreds of articles and interviews to create an education hub for endometriosis.
We currently have over 200 providers in our network, and 30,000 patients use our services each month.
I am incredibly proud of what we have achieved.
Phase VI – Begins iCareBetter Centers for Long-Term Care.
One question that patients commonly asked us was, “Where can I go before surgery or after surgery for long-term care?”
We searched the medical community for the right centers to help with this long-term care. Our non-negotiable criteria were simple: These centers should not dismiss patients and avoid putting endo patients on hormones as “the cure for endo.”
To my frustration and shock, no center expressed interest in seeing more endometriosis patients. We even purchased the emails of ten thousand OBGYNs in the US and invited them to join our network and support endo patients. Not even one ObGyn responded positively to the invite to see more endometriosis patients. Except for our excision surgeons, no one wanted to deal with endometriosis patients in their practice. It was a heartbreaking realization for all of us.
From a patient’s perspective, they need a care team that is in their corner and does not get tired of them after four or five visits because the pain is still there. A team that sits and thinks with the patient and tries to problem-solve with the patients as a team member. This team should map out the options, what has been tried, and what is left to be tested. A team that patients can go to four weeks, four months, or four years after surgery to complain that the pain is back.” This team, instead, thoroughly evaluates patients for other pain generators or a recurrence of endometriosis. A care team that believes in patients and helps them connect with the right specialist for their gastrointestinal, urinary, neurological, and other symptoms.
We tried several solutions to create this care team with other centers and groups, but there was a complete lack of interest and empathy, as it has always been with endometriosis. Therefore, we decided to build these centers ourselves. With that, I am proud to announce that we are launching the first iCareBetter Endometriosis Center in sunny California. It will be at 6621 Bay Laurel Place, Suite A, Avila Beach, CA 93424. We plan to open the next centers in CA and other states.
The centers’ focus will be long-term endometriosis care, so we will collaborate closely with excision surgeons, physical therapists, and other providers on iCareBetter to offer long-term multidisciplinary care to endometriosis patients. We believe that excision surgery is the gold standard of treatment for endometriosis, and we also believe that patients need an ongoing care plan and monitoring after excision surgery, even if the best surgeons in the world do it. iCareBetter centers will be the long-term care center for patients before and after excision surgery.
Our first center in Central California will be ready to see patients on February 20th, and we will offer in-person and virtual services. The next ones are being prepared, and we will announce their launch soon. If you want to ensure you secure your place before we run out of space, join the waitlist by filling out the form below. Also, if you want to be among the first ones to know about iCareBetter centers when we come to your area, please use the link below to add your name to the waitlist.
Your Guide to Supporting a Loved One Through the Holidays: The Ultimate Endometriosis Resource List Updated and Revised
The holiday season can be a joyous time filled with festivities, but for individuals navigating the challenges of endometriosis, it can also present unique hurdles. Supporting a loved one with endometriosis during this time involves not only empathy but also understanding the complexities of the disease. To aid both those directly affected and their support systems, a plethora of resources are available, ranging from insightful blogs and informative books to engaging movies and podcasts. These tools not only offer a wealth of knowledge about endometriosis but also provide a platform for individuals seeking a better understanding of the condition or those desiring to support their loved ones effectively.
In this guide, we will explore a curated selection of resources, offering both emotional support, educational insights, and even some ideas for your holiday shopping list to help individuals navigate the holiday season with a heightened awareness of endometriosis and a supportive approach to those impacted by this often misunderstood condition.
Understanding Endometriosis
For those of you unfamiliar with our blog, endometriosis is a chronic disease that primarily affects women (XX) of reproductive age. It involves the growth of endometrial-like tissue (the tissue that lines the inside of the uterus) outside of the uterus, leading to inflammation and pain, particularly during menstruation, though many other symptoms may be present.
For more information on symptoms of endometriosis, read our blog 20 Signs and Symptoms of Endometriosis.
Despite being a common condition, endometriosis is often misdiagnosed or overlooked, leading to many women suffering in silence. However, with the right information, supportive community, and access to informed medical providers, it is possible to manage the condition and lead a fulfilling life.
Podcasts on Endometriosis
Podcasts are an excellent way of gaining insights and information about endometriosis in a convenient and accessible format. Here are some podcasts that delve into various aspects of the disease, from personal stories to expert opinions:
- “iCareBetter: Endometriosis Unplugged”: Hosted by yours truly, is a video podcast (Spotify & Youtube) that focuses on expert interviews and patient stories with a few bonus episodes of specialists who treat conditions that often coexist with those with endometriosis. We have completed season 1 and hope to have season 2 coming in 2024!
- “In Sixteen Years of Endometriosis”: Hosted by two witty best friends who share their personal journey with the disease, this podcast offers a blend of humor, vulnerability, and accurate information.
- “The Cycle”: This podcast features stories of people living with endometriosis from around the world, providing practical ways to cope with the disease.
For more podcasts about endo, check out our previous blog here.
Books about Endometriosis
Reading about endometriosis can provide a comprehensive understanding of the disease. Here are some books written by medical experts and those living with the condition:
- “Beating Endo: How to Reclaim Your Life from Endometriosis”: Written by Iris Kerin Orbuch, MD, and Amy Stein, DPT, this book provides actionable insights into understanding and managing the disease.
- “Heal Endo”: By Katie Edmonds, (F)NTP provides a book that is patient focused with a more indepth understanding of the science balanced by actionable items that range from surgery to dietary and lifestyle changes.
- “The Endometriosis Health and Diet Program”: Authored by Dr. Andrew S. Cook, MD, FACOG, and Danielle Cook, MS, RD, CDE, this book focuses on treating endometriosis holistically, offering a comprehensive program tailored to individual needs.
- “Know Your Endo: An Empowering Guide to Health and Hope With Endometriosis”: Authored by Jessica Murnane, this book provides tools and strategies to manage chronic pain associated with endometriosis.
- “The Endo Patient’s Survival Guide: A Patient’s Guide to Endometriosis & Chronic Pelvic Pain”: This book by Andrew S. Cook, MD, FACOG, Libby Hopton, MS, and Danielle Cook, MS, RD, CDE, is a companion guide for patients, offering insights into diagnosis, treatment options, and achieving optimal relief.
Videos and Documentaries about Endometriosis
Visual content can help in understanding complex information about endometriosis. Several documentaries and movies have been produced to increase awareness about the disease.
- “Below the Belt”: A documentary from Shannon Cohn who created “Endo What?” focuses on the journey of several women seeking an endometriosis diagnosis and the challenges they face. “Below the belt” is not only an empowering film for educating the masses, it has become a tool for legislative change. A must see for everyone.
- “All about NINA”: A drama highlighting the experience of a woman, Nina Geld, managing her life with endometriosis.
- “Endo what?”: A documentary featuring women living with endometriosis and experts discussing treatment options.
- “The painful truth”: This film focuses on endometriosis and adenomyosis, another related condition.
- “A thousand needles”: A short documentary about the impact of endometriosis on a woman’s life.
- “End-o”: A short film showcasing the life of a young woman, Jaq, living with endometriosis.
- “The resilience of women in pain”: This short film focuses on Rose, a woman suffering from endometriosis and chronic illness, and her journey towards resilience.
Your Endo Shopping List: Comfort Tools for Loved Ones
In case you need to do some last minute shopping and want to show your loved ones you understand, here are some essential items that have proven useful for many. While these tools may not be able to stop this awful disease, they may provide some degree of comfort and relief when things get bad. Whether you are prepping for surgery, or just need some handy tools, here are some of my favorite items.
- Wedge Pillow. This is a must for those preparing for surgery during recovery. I only found this at my 3rd (and hopefully last) surgery and it was a game changer. When your belly is full of air, tender, and you don’t feel like moving (or sitting up at the very least), this helps to provide relief for recovering in bed or on the couch and is great if you are a side or back sleeper.
- Heating pads. This is probably the number one item most endo warriors have – likely at home and work. They are always handy to have wherever you are, and for a more personalized gift, ETSY.COM has some amazing endo swag (including heating pads).
- My Obi Apollo. This is a TENS unit with heat and multiple programs to help with cramps and reduce pain. To learn more about how TENS may be helpful, check out our blog here.
- Squatty Potty. Everyone should have one. This is the gift that no one really wants, but secretly is so happy when they get one. It is essential for optimal toileting for everyone, but especially if you have endometriosis. Constipation and pelvic floor dysfunction are two issues the majority of those with endometriosis suffer from and this tool can make a world of a difference for toileting….
Until recently, endometriosis was not a term most people were familiar with, unless you are suffering. It is amazing how this is shifting and so many more people are familiar with the term, but may not understand how impactful this disease is to one’s life. Finding the right surgeon is key to address the lesions, but having tools to help in the meantime is crucial. More importantly, your loved one will most appreciate the effort you made to educate yourself about their disease, especially during the stress the holidays may bring. Give them the gift of understanding and empathy this year, and maybe something to help their pain in the meantime.
Please note: We do not have financial affiliations with any of these products listed above.
Related Reading:
- Find an Endometriosis Specialist for Diagnosis, Treatment, & Surgery
- Endometriosis Facts & Myths: Dispelling the Misconceptions
- What You Need to Know About Endometriosis Excision Surgery
- Managing Endometriosis: What You Need to Know.
Acupuncture: An Underexplored Solution for Endometriosis Pain
Endometriosis is a complex, multifaceted health condition that predominantly affects women of reproductive age. Characterized by the growth of endometrial-like tissue outside the uterus, this condition can lead to chronic pelvic pain, dysmenorrhea, and infertility, significantly impacting the quality of life. Today’s treatment is limited to expert surgical excision and hormonal manipulation, with variable success. In recent years, acupuncture has gained attention as a potential complementary treatment for endometriosis-related pain. This ancient Chinese technique may hold promise for providing effective pain relief and enhancing overall well-being.
Understanding Endometriosis
Endometriosis is an estrogen-dependent, inflammatory gynecological disorder that can lead to chronic visceral pelvic pain and infertility. This condition is believed to affect approximately 10% to 15% of women during their reproductive years, causing symptoms such as chronic pelvic pain, deep dyspareunia, dysmenorrhea, dyschezia, dysuria, and more. It is theorized that endometriosis-related changes might be a result of alterations in the peripheral and central nervous systems, predisposing affected individuals to other long-lasting pain conditions.
Despite the availability of hormonal, pharmacological and surgical treatments, many of these interventions fail to sufficiently address the perceived pain. Moreover, they often come with significant side effects, presenting an additional burden of symptoms and potential for harm.
Read more: 20 Signs and Symptoms of Endometriosis.
Read more: What causes endometriosis?
The Science of Acupuncture:
Acupuncture is a traditional Chinese medicine technique that involves inserting thin needles into specific points on the body to balance the flow of energy or “Qi”. It has been used for centuries to treat various conditions, including pain and inflammation. The modern science corollary is that acupuncture may work by stimulating nerves, muscles, and connective tissues, which increases blood flow and activates the body’s natural painkillers. While this modern evidence supports the use of acupuncture it is important to keep in mind that energy medicine is quite poorly understood. Acupuncture is an ancient form of energy medicine. A lot more research is mandated to understand how this truly works and how it might be improved or adjusted on an individual basis.
Acupuncture and Endometriosis:
Pain Relief:
For endometriosis sufferers, the most significant benefit of acupuncture is pain relief. A study by Wayne et al. (2008) revealed that acupuncture significantly reduces pelvic pain, dysmenorrhea, and discomfort associated with endometriosis, enhancing the quality of life. The modern medicine mechanisms underlying this pain relief are thought to be related to the release of endorphins, the body’s natural painkillers, and the reduction of inflammatory markers.
Hormonal Balance:
Endometriosis is often associated with hormonal imbalances, particularly an excess of estrogen. Acupuncture is believed to modulate hormonal levels by impacting the hypothalamus-pituitary-ovarian (HPO) axis, which plays a crucial role in regulating reproductive hormones. A harmonious hormonal balance can help in managing endometriosis symptoms and reducing the progression of endometrial lesions. However, most studies show that acupuncture increases estrogen levels. So, this is a bit contradictory other than to say that other acupuncture-induced mechanisms influencing hormonal balance and homeostasis may be in play.
Improved Blood Flow:
Acupuncture is known to enhance blood circulation to the pelvic area, which can be beneficial for endometriosis patients. Improved blood flow can help reduce inflammation and promote the healing of endometrial lesions. This enhanced circulation can also alleviate the ischemia and hypoxia conditions commonly found in endometriotic tissues, potentially reducing the development of new lesions.
Reduced Stress and Anxiety:
Living with chronic pain and other symptoms of endometriosis can lead to increased stress and anxiety. Acupuncture is reputed to mitigate stress and anxiety by modulating the activity of the amygdala and other brain regions associated with emotion regulation, promoting relaxation and mental well-being.
Empirical Evidence:
Several studies and clinical trials have substantiated the efficacy of acupuncture in managing endometriosis symptoms. A systematic review by Zhu et al. (2011) concluded that acupuncture could be considered an effective and safe alternative for relieving endometriosis-related pain. Another study by Rubi-Klein et al. (2010) demonstrated that acupuncture reduces the severity and duration of pain during menstruation in women with endometriosis.
Integration with Conventional Treatment:
While acupuncture demonstrates the potential to alleviate endometriosis symptoms, it is crucial to view it as a complementary therapy. It is not a standalone treatment option for endo. Integrating acupuncture with conventional medical treatments, such as hormonal therapy, non-narcotic pharmaceuticals, and excisional surgery, can offer a holistic approach to managing endometriosis. This integrative approach can address both the physiological symptoms and the psychological stress associated with the condition, improving the overall quality of life for patients.
Read more: Integrative Therapies for Endometriosis
Limitations and Considerations:
While acupuncture offers promising benefits for endometriosis, limitations exist, including the variability in acupuncture techniques and the lack of standardized treatment protocols. Moreover, the effectiveness of acupuncture may be influenced by individual differences, necessitating personalized treatment plans. It is essential for patients to consult with experts in this field to determine the appropriateness of acupuncture based on their medical history and specific circumstances.
Conclusions:
Acupuncture emerges as a valuable complementary therapy for endometriosis, offering relief from pain, hormonal balance, improved blood flow, and reduced stress and anxiety. Empirical evidence substantiates its efficacy, and integrating it with conventional treatments can provide a comprehensive approach to managing endometriosis. However, individual variability and the lack of standardized protocols necessitate personalized treatment plans and consultation with experts in acupuncture as well as endo specialists. As research continues to unravel the mechanisms underlying acupuncture’s therapeutic effects, it holds the promise of enhancing the quality of life for individuals grappling with endometriosis.
References:
Wayne, P.M., et al. (2008). Acupuncture for pelvic and back pain in pregnancy: a systematic review. American Journal of Obstetrics & Gynecology, 198(3), 254-259.
Zhu, X., et al. (2011). Acupuncture for pain in endometriosis. Cochrane Database of Systematic Reviews, (9), CD007864.
Rubi-Klein, K., et al. (2010). Is acupuncture in addition to conventional medicine effective as pain treatment for endometriosis? A randomised controlled cross-over trial. European Journal of Obstetrics & Gynecology and Reproductive Biology, 153(1), 90-93.
Lund I, Lundeberg T (2016). Is acupuncture effective in the treatment of pain in endometriosis? J Pain Res; 9: 157–165.
