Niva Herzig PT of Core Dynamics Physical Therapy joins The Endometriosis Summit blog as a kick off to two part series in Sex and Relationships. Niva will join Endo Summit 2020 on March 1 as we explore Sex and Relationships in an interactive activity at our Town Meeting. Niva writes:
Abdominal Pain. Vaginal Pain. Rectal Pain. Low Back Pain. Hip Pain. What if you have one or all of these for a week per month? What if you had them for 2 or 3 weeks? What if you had to miss work or school because these symptoms were at such severity? How would you feel if you had to repeat surgeries because the gold standard of care was not readily available? This is exactly what people with endometriosis experience.
As humans, most of us crave some sort of relationship which includes intimacy (physical and emotional). Dealing with chronic pelvic pain often challenges intimacy needs. Some avoid having relationships that may lead to intimacy or sexual intercourse. They avoid dating or engaging with people who they may be attracted to. In fact, many reduce social interactions or report losing friends and partners due to chronic pain. Many do not know how to start the conversation regarding their history with painful sex to a possible (new) partner.
People with endometriosis who are in relationships often report avoiding close contact with their partners. They fear it may lead to sexual intercourse which is known to be or has been experienced as painful (dyspareunia). This leads to fear avoidance by either partner: fearing sexual intercourse or partners fear hurting them -a perfect storm to make matters worse. Sexual intercourse becomes completely avoided. Beyond pain, there may be fatigue, mood, depression, guilt, anxiety and low self-esteem which may interfere with desire. People with endometriosis often must decide whether to avoid sex or to endure pain.
What about the those undergoing surgeries? Many have had hysterectomies at a young age not realizing that hysterectomy does not treat endometriosis, only adenomyosis. Many have endured multiple surgeries without realizing the impact that excision of endometriosis could have on their quality of their life. Many experience fertility challenges. They grieve their absent fertility. They grieve the perception of "normal" for the human body. They grieve from the damage fertility drugs and/or inadequate hormonal treatments has done to their bodies. In return, many feel less desirable and may shy away from intimate relationships. Trauma abounds in life with endometriosis. Multiple surgeries are traumatizing especially when they start at a young age. Medical gaslighting, symptom minimization all by supposedly trusted medical practitioners, unfortunately, leaves a lasting impact. Many fear being touched and many have trust issues with those in intimate experiences. This adds to the emotional pain that may disturb a relationship.
How can people with endometriosis empower themselves in a relationship?
1. Communication with a partner is highly recommended. Perhaps the couple attend therapy with a sex therapist or relationship therapist.
2. Physical Therapy can make a huge difference in sexual pain. Physical therapy will address pain (reducing, managing and awareness), myofascial and visceral restrictions, movement impairment and biomechanics, exercise programs, etc.
3. Explore excision. Excision of the disease at its root removes the disease from the ligaments and areas of the body that may contribute to deep pain from sex. Additionally, specialized treatment by a qualified excision specialist will improve fertility, decrease the inflammatory response in the pelvis, and lessen daily pain and dysfunction. An excision specialist will need to be sought out because most OBGYNs only perform ablation or burning of endometriosis.
People can lead a fuller life with endometriosis. Earlier diagnosis, proper treatment that includes multidisciplinary care of excision combined with physical therapy and a functional approach will lessen the burden of the disease on everyone's life. Sex and intimacy are a fulfilling part of life. Good care will restore intimacy to your life.
An integrative approach to care is my recommendation for battling painful sex. Combining medical with psychological and physical therapies as well as acupuncture are great ways to start. Adding nutritional counseling, health coaching and exercise will make it more successful.
At Endo Summit 2020 we will explore all things Sex and Relationship related. We will also explore why your voice may be the most important thing in endometriosis care. Stand up and be heard. Tickets are on sale www.theendometriosissummit.com
Casey Berna, MSW, Endometriosis Advocate, and Person with Endometriosis. In addition to leading the endometriosis brigade to petition ACOG for better standards of care, Casey is a social worker working with patients with endometriosis and has the disease as well. She kicks off Endometriosis Summit's 2020 blog series with a discussion on trauma and endometriosis. In the all new Endo Summit Workshop, Casey will lead a unique social media activity to explore trauma, minimization, and endometriosis. She writes...
When the term, “medical trauma” is used, it often refers to an unexpected, severe, and often life-threatening somatic occurrence that afflicts an individual’s physical being. Authors and mental health providers, Michelle Flaum and Scott E. Hall, work to broaden and redefine medical trauma and its implications, for both patients and providers, in their book, “Managing the Psychological Impact of Medical Trauma.” Looking through their astute multidisciplinary lens, it is clear that endometriosis patients experience multiple levels of medical trauma that often go unrecognized by their social support systems, their providers, and even by the patients themselves.
An ectopic pregnancy, ovarian torsion, a painful pelvic exam, miscarriage, a failing kidney, or the dismissal from a provider are just some examples of the many ways that endometriosis patients can experience medical trauma. Flaum, who experienced significant trauma during the life-threatening birth of her child, simply defines a “medical trauma” as a medical situation that brings overwhelming stress to a patient. Flaum argues it is important for the definition to remain subjective, empowering the patient to decide when they have experienced a medical trauma for themselves. While patients who face institutionalized racism, have a history of other life traumas and stressors, preexisting mental health challenges, and/or have strained support systems, are more vulnerable to experiencing medical trauma, no one is immune from experiencing medical trauma and its devastating effects.
Flaum defines three different levels of Medical Trauma. Level 1 trauma can happen during an anticipated medical intervention or routine appointment. Endometriosis patients who have significant anxiety seeing their gynecologist, or even other providers not associated with endometriosis-related care, often experience this level of trauma. Sharing one’s medical history with a new provider or even simply stepping into the waiting room of a doctor’s office can cause severe anxiety for some patients, especially endometriosis patients who have been historically dismissed by the medical community. Inserting a speculum and performing a pap smear is considered routine for most gynecologists and patients, but this can be excruciating for an endometriosis patient and feel deeply invasive on both a physical and emotional level. How a provider handles these situations can add to or lessen the trauma a patient may feel. Providers who run practices surrounding routine care can help alleviate medical trauma by being aware, and making staff aware, that seemingly benign, routine procedures and appointments can be triggering for any patient. Compassion and empathy from all staff, from the person answering the phones, to the provider themselves, can help lower anxiety in a patient. Staff should also be attuned to recognize symptoms of trauma and be prepared to refer patients to a mental health provider for additional support.
Patients experience Level 2 trauma when diagnosed with a chronic or progressive disease that can severely alter a patient’s lifestyle or be life-threatening. Endometriosis patients can live with this level of trauma, often for decades. Patients who also experience infertility and recurrent pregnancy loss will most likely face additional medical trauma. PTSD, anxiety, and depression can happen as a result of living with Level 2 trauma. Flaum also explains that patients can experience secondary crisis when living with a chronic and/or progressive disease. A patient’s education, vocation, relationships, and financial standing can all be significantly altered due to the impact of endometriosis. Flaum stresses that the most successful way of mitigating medical trauma, and its impact, is to treat every patient in a collaborative, multidisciplinary way. A team approach, in a center of excellence, that can provide resources for excision surgery, mental health support, pelvic floor therapy, fertility treatments, nutrition guidance, pain management, acupuncture, and more, would greatly benefit endometriosis patients and reduce the scope of medical trauma inflicted. Centers that do not have a multidisciplinary care team under one roof, but offer patients referrals to resources and recognize potential medical trauma, can also be an effective model of care. Unfortunately, for the majority of patients, this type of care is currently inaccessible, in part due to the lack of recognition of the complexity of endometriosis by the general medical community. Patients report that the substandard care they have endured has often led to significant and repeated medical traumas, which can include repeated ineffective surgeries, dismissal of symptoms, unnecessary removal of reproductive organs, infertility, and the prescription of life-altering drugs without true informed consent.
Finally, Level 3 trauma happens when a life-threatening or life-altering event happens unexpectedly and requires significant and immediate intervention. Endometriosis is unusual in that in the hands of an inexperienced provider, a “routine” laparoscopic exploratory surgery can sometimes result in a patient waking up unexpectedly to having organs removed which were not anticipated, leading to significant medical trauma. While this may not happen to the majority of endometriosis patients, some patients have had a routine MRI or have gone to the emergency room and learned that due to endometriosis they have a catamenial pneumothorax, bowel obstruction, or their kidney has failed. Endometriosis patients are more at risk for ectopic pregnancies, which can be life-threatening. It should also be noted that often the level of pain that an endometriosis patient can face feels life-threatening and that pain in of itself is a medical trauma. The care patients receive for a Level 3 trauma most often happens in a hospital setting. Emergency room providers and gynecological staff have the opportunity to reduce the medical trauma a patient experiences through compassionate, educated care, while also providing further referrals and resources for patients. Flaum also argues that providers and staff who exhibit stress in front of the patient, have poor coping skills, and/or who may exhibit medical narcissism, with a failure to collaborate with other team members, can increase medical trauma for patients as opposed to deescalating trauma.
Flaum states that there is a complex relationship between patient, diagnosis, procedures, medical providers, and the medical environment, with potential for medical trauma throughout. Endometriosis patients and advocates would argue that the lack of understanding of the disease from the greater medical community, along with the outdated standards of care which contribute to the medical trauma that patients endure, makes addressing medical trauma in endometriosis patients even more challenging. Continuing to fight for changes in standards of care, pushing for disease recognition and awareness, and promoting multidisciplinary, collaborative care so patients can have an abundance of resources to navigate such a complex disease, are the only ways that patients will see some relief from such a potentially traumatizing diagnosis.
Tickets for the Endometriosis Summit go on sale on December 15 at https://www.eventbrite.com/e/the-endometriosis-summit-2020-tickets-84756086737?aff=ebdssbeac
Jordan Hutchinson of Lumenis sits down with the Endometriosis Summit: Patient and Practitioner Town Meeting to chat about how laser technology can help people with endometriosis and why their company chose to partner to show the Live Feed on Facebook.
Lumenis, a manufacturer of laser technologies for the treatment of endometriosis, is sponsoring the first-ever Endometriosis Summit. Here, Jordan Hutchinson, Senior Market Development Manager for Lumenis Americas, answers questions about his company’s push for advancing treatment technologies and education, and why they chose to sponsor the Summit.
Why did Lumenis choose to sponsor the Endometriosis Summit?
First, let me say that we are honored and very excited to sponsor the Endometriosis Summit. The Summit is mutually beneficial for not only advancing technology, but also having the discussions we need to have about endometriosis in pursuit of improving patients’ quality of life.
Lumenis has been a partner in the endometriosis fight since the late 1980s, when physicians started using our CO2laser to excise endometrial lesions. Now, we have the UltraPulse Duo CO2laser with FiberLase waveguide, the best system for less invasive treatments, which gives physicians options for minimizing disruption of healthy tissue. This enables safe eradication of lesions on all internal organs in efforts to alleviate pain while preserving fertility.
CO2laser technology is coming of age in an environment where many physicians still do not know how to properly diagnose or treat endometriosis, and many patients aren’t aware of endometriosis, its symptoms, and its progressive nature. To contrast, for example (but not to minimize its importance), most people have heard about Parkinson’s Disease, which affects roughly 1 in 350 people, while endometriosis affects at least1 in 10 women of reproductive age, and it’s not a household name. At Lumenis, we talk to patients, we read the forums, and we know that many women with endometriosis continue to suffer for years without relief. This makesour efforts to spread the word quite urgent.
What is Lumenis doing now to help people get treatment for endometriosis earlier in the disease?
Our goal is to accelerate the time to diagnosis and efficiency in the treatment of endometriosis, so instead of these 10+ years of delay, we can diagnose the disease earlier, when treatment by well-trained surgeons is most effective. To achieve that goal, Lumenis is taking on an expanded hands-on role in educating physicians this year.
We’ve partnered with endometriosis specialists who patient advocates love, and we’re taking them around the country to talk to their colleagues. These experts see patients who’ve been through multiple doctors and failed treatments, so they understand the need to promote continuous improvement in medical management. Our goal is to provide education that advances endometriosis care and the paradigms of endometriosis.
Prior to working with the Endometriosis Summit, in the summer of 2018, Lumenis sponsored the first-ever Endometriosis Fellowship & Course Series in partnership with the Nezhat Family Foundation and Worldwide EndoMarch to grow the community of endometriosis experts worldwide. During the sessions, pre-med students and public health undergraduates had a rich classroom curriculum as well as opportunities to work with the UltraPulse Duo CO2laser in hands-on settings and live case observations. With today’s global shortage of endometriosis specialists, this series encouraged young students to do novel research of potential non-invasive diagnostic tests and biomarkers. We need to motivate future physicians to embrace excision and the treatment of endometriosis for their careers. The idea is to start training unbiased, future physicians in this unmet public health crisis so that they take up this cause early in their career while bolstering their medical credentials.
At the same time, we’re working hard to raise awareness among patients. So many people with endometriosis are suffering and don’t know what’s wrong. More than likely, they’ve been told that their symptoms are normal or that they’re exaggerating. That’s unacceptable. We want to reach those patients so they can get immediate help. A large part of our community education effort, Gynhealth.com, helps women learn more about endometriosis and ask their doctors the right questions.
What are you most looking forward to at the first-ever Endometriosis Summit?
We spend as much time as we can out in the world, talking to physicians and to patients with endometriosis, so this event is really special and exciting. This is a startup event, with a new town hall style panel concept that puts patients, doctors, patients, and advocates in the same room, discussing state-of-the-art therapies and future directions in endometriosis care. These are the kind of discussions we need to have and these are the people who need to be involved. To expand the reach of the Endometriosis Summit, Lumenis will live-stream it on @LumenisGYN Facebook https://www.facebook.com/LumenisGYN/videos/2226057704321969/
#knowendometriosis, #endometriosisisreal, #EndoSummit2019.
Personally, I’m looking forward to hearing a diversity of ideas. Not everyone approaches treatment the same way, not every patient has the same treatment experience, and having a dialog and debate is a great way of honing best practices. With efforts like The Endometriosis Summit that bring people together, regulatory bodies will be influenced to establish better protocols and align healthcare costs for properly diagnosing and treating endometriosis. The goal is for patients to get excellent care, no matter which doctor they see or what questions they ask, and repeatable processes are the only way that can happen.
See you on the live-stream on March 3! Link is live, streaming begins at 830am. Looking forward to this landmark day.
The Live Feed will be shared in Nancy's Nook, Extra Pelvic Not Rare, EndoInvisible, onto Center for Endometriosis Care, Endometriosis Research Center, Endo What, Sallie Sarrel, Physical Therapist: Endometriosis and Pelvic Pain Management, Andrea Vidali MD Endometriosis, Adenomyosis, Miscarriage, and throughout Brazil, and Australia. Plus many many more Facebook pages and groups. Grab the link and share then pop on and say Hi to Jordan and the Endometriosis Summit Faculty including Dr. Vidali, Heather Guidone, Dr. John F. Dulemba, Dr. Malcolm Mackenzie and many more at https://www.facebook.com/LumenisGYN/videos/2226057704321969/
Dr. Amy Stein, DPT, BCB-PMD, IF, is a leading expert in pelvic floor dysfunction, pelvic pain, women’s health, and functional manual therapy for men, women, and children. She is the founder of Beyond Basics Physical Therapy in NYC. Amy is one of the founders of the Alliance for Pelvic Pain, a patient-oriented educational retreat, and she served as President of the International Pelvic Pain Society in 2017. Amy is incredibly passionate about helping people with endometriosis and it is an honor to have her join our Endometriosis Summit blog this week. She writes:
The most common area for endometriosis sufferers to feel pain is the abdomino-pelvic region. Endometriosis can be very painful, lead to painful and heavy periods, bladder, bowel and sexual dysfunction, and infertility in some women. Endometriosis is a condition in which the lining similar to but not the same as the tissue of your uterus (endometrium) grows outside of your uterus. The result can be inflammation and pain. The inflammation caused by endometriosis can cause areas of restriction in your pelvic and abdominal cavity, which can decrease organ mobility and the mobility of the body as a whole. These areas of restriction can be a result of adhesions or of muscles that are tightening in response to the pain, which subsequently can cause more pain and other symptoms. In addition, the pain and inflammation can cause viscerosomatic reflexes. A viscerosomatic reflex occurs when inflammation or irritation of a pelvic organ causes spasm in the muscle due to its shared innervation at the spinal nerve level, and as a result causing more pain. Endometriosis can have a profound effect on your overall quality of life.
Due to these physiological changes, the body accommodates by moving around the area of tension, and over time this repeated movement leads to chronic irritation and more inflammation, which in turn cause dysfunction—in the muscles, in the nerves, in the surrounding joint, and in the organs themselves. Pelvic health physical therapists can ‘undo’ this tension and restrictions, and lessen the pain. These group of experts are skilled in a range of manual therapy and re-education techniques—from external and internal myofascial trigger point release, connective tissue and visceral mobilization to nerve decompression and neuromuscular re-education techniques, such as biofeedback.
In my book, Heal Pelvic Pain, I address the elements of musculoskeletal structure that support and protect the crucial organs in the abdomino-pelvic cavity—the urinary, digestive, and reproductive organs. I explain how this area functions: the muscles, the nerves controlling the muscles, the tissues (AKA, the fascia) that connect everything together, plus
‘the ligaments that link bone to bone and bone to organ that are attached to the front, back, and sides of the pelvis, from the pubic bone in the front of the body all the way back to the tailbone.” All these muscles, nerves, tissues, and ligaments form a kind of protective covering over the bottom of the pelvis and act as a sling supporting the organs and the essential functions they perform. This abdomino-pelvic area is a key part of the trunk of the body; along with some deep back muscles and the diaphragm. Some or all of this can get disrupted, irritated and can become painful and dysfunctional because of the disease process of endometriosis and the many years it takes for a proper diagnosis.
Come and see Dr. Amy Stein present at The Endometriosis Summit. Our Town Meeting will feature many physical therapists, Dr. Sallie Sarrel, Dr. Holly Herman, Dr. Hannah Schoonover, and Niva Herzig, plus more than 30 physical therapists in the audience to participate in our open microphone format. Join us at www.theendometriosissummit.com
1.) Arung W, Meurisse M, Detry O. Pathology and prevention of postoperative peritoneal adhesions. World J Gastroenterol. 2011: 17(41) 4545-53
2.)Bonocher C, Montenegrow M, Rosa e Silva, et al. Endometriosis and physical exercises: a systematic review. Reproductive Biology and Endocrinology. 2014, 12:(4)
3.) Leong F. Complementary and alternative medications for chronic pelvic pain. Obstetrics and Gynecology Clinics of North America. 2014, 41:(3): 503-10
4.)Rakhshaee Z. Effect of three yoga poses (cobra, cat and fish) in women with primary dysmenorrhea: A randomized clinical trial. Journal of Pediatric Adolescent Gynecology. 2011;24(4):192-6
5.) Wurn B, Wurn L, Patterson K. Decreasing dyspareunia and dysmenorrhea in women with endometriosis via a manual therapy: results from two independent studies. 2011;3(4)
Dr. Sonia Bahlani is an OBGYN with fellowship training in Urology. Her unique training allows her to treat patients with urologic and gynecological pain. She has an active instagram as @pelvicpaindoc. In 2019 she was part of The Endometriosis Summit's Multi-Disciplinary, Pelvic Pain Lightning Round.
Endometriosis. It is one of Google's most searched medical terms. Some would say its “trending” as you see it all over tabloids and magazines. The truth is there is nothing trendy about it. People with endometriosis often suffer unrelenting pelvic pain and painful sex. However in my experience, the truth is that endometriosis doesn’t act alone. Understanding this fact, is the crux to more successful treatment of pelvic pain.
Pelvic pain is hard to treat because it is complex and more often than not, involves multiple different pain generators. I like to think of the old Buddhist fable of the three blind men and the elephant. They conceptualize the elephant by touching it. The first man touched his trunk, “ it is a thick snake” he proclaimed. The second reached for his ear, “it is a fan” he said. The third touched his leg, “ It is a tree trunk” he exclaimed.
The moral is that none of them could take a step back and see the entire animal. They made dogmatic assumptions based on a limited perspective. This is exactly the problem with treating pelvic pain. More often than not, it cannot be resolved to a single diagnosis. With that in mind, it is difficult to treat with a single approach. It is important to constantly re-evaluate and use a multi-disciplinary approach. If you look at pain with a narrow vision, you are essentially approaching it like the blind men above.
So lets take a step back and discuss other pain generators, one of the most common ones being the bladder. Bladder based pain, accompanied by frequency, urgency and pain with bladder filling has previously been known as interstitial cystitis or bladder pain syndrome. But before we delve into this entity, the most common question I get is can my bladder pain be due to endometriosis inside of the bladder? Truth be told, YES. I have seen endometriosis in the bladder. Endometriosis can also be around the bladder. In fact, I (with my amazing urology colleagues) have resected it and seen anecdotal improvement in terms of symptoms in those particular patients. However, for the VAST MAJORITY of my patients, this is NOT the case. The answer, unfortunately, does not lie in simple resection but often involves delving deeper into the pathophysiology of pain.
Understanding endometriosis so often occurs in conjunction with other pelvic pain syndromes, including interstitial cystitis, that Endometriosis Summit’s friend and colleague Dr. Maurice Chung, coined IC and endometriosis pelvic pain’s “evil twins.” We don’t actually know what causes interstitial cystitis/bladder pain syndrome but there’s thought to be inflammatory, autoimmune, and epithelial causes can play a role. One such theory involves a disruption in the G-A-G layer of the bladder (glycosaminoglycan layer). Neuropathic upregulation, often found in patients with endometriosis can also play a role.
My take home point is in order to treat pelvic pain properly we must look at care in terms of a patient-centered approach that evaluates for all causes of pain rather than a problem-centered. Taking a step back to look at the entire “animal.”
Come to see Dr. Bahlani and bring your bladder pain questions to our Town Meeting. Tickets for the Endometriosis Summit are on sale www.theendometriosissummit.com
Dr. Laurence Orbuch is a OBGYN and Excision Specialist for Endometriosis. He has practices in both New York and Los Angeles. His passion is helping people with endometriosis live the life they deserve without being hampered by pain. He will be a part of our Endometriosis 101 panel, a place to learn all about how to manage endometriosis from diagnosis, to surgery and more.
Due to a lack of training and knowledge, many OB-GYNs aren’t aware that hysterectomies aren’t an effective treatment for endometriosis. Removal of the uterus and or ovaries does not eradicate the endometriosis, which is by definition outside the uterus. Hysterectomy therefore has NO impact on the activity of endometriosis, but tragically there are physicians who still believe this. The first line surgical intervention for patients with known or suspected endometriosis, is excision surgery by a skilled and experienced excision surgeon.
Hysterectomy can be an appropriate recommendation to a patient when accompanied by excision surgery on women who also have coexisting adenomyosis, a condition where endometrial cells/tissue grow into the muscle of the uterus. Adenomyosis can cause severe pain, heavy periods, an enlarged uterus and inflammation. Again, in the absence of adenomyosis, the first line surgical option should be excision surgery accompanied by hormonal therapy, NSAIDS, other appropriate pain management therapies, pelvic floor physical therapy etc...
For patients who have undergone multiple excision surgeries along with other conservative treatment modalities, but still suffer from persistent pain, hysterectomy may also be warranted. The approach to treating endometriosis must be a logical and methodical one, taking into consideration the clinical picture and propriety of treatment options.
It is also imperative that governing bodies such as ACOG (American College of Obstetrics and Gynecology) adopt more up to date guidelines in accordance with the current literature which supports all of the above recommendations, and not purely palliative measures.
Casey Berna who has a master's degree in Social Work, has been a voice in endometriosis advocacy for many years. She has lectured at international conferences on endometriosis, anxiety, and the trauma of pelvic pain. After her own battles with endometriosis Casey heads the fight against ACOG for better standards of care for endometriosis. She teaches the world that as people with endometriosis, we matter. She writes:
What Doctors Say
They said I was in pain because I had a low pain tolerance, had an STD, irritable bowel syndrome, sexual abuse history, anxiety, depression.
They said I was in pain because I didn’t eat healthy, didn’t exercise, had gained too much weight, or didn’t weigh enough.
They said I couldn’t have endometriosis because I was a too young, too old, a trans man, too fertile, or a black woman who was just naturally inclined to have painful periods.
They said I couldn’t have endometriosis because I was pregnant, didn’t have a uterus, was on birth control, already had surgery.
They said I needed to focus on finding a partner, getting pregnant, freezing eggs, going through fertility treatments.
They said they could put me on hormones, burn some of the disease away “if that’s what I really wanted,” put me on stronger hormones that mimicked menopause, give me a hysterectomy.
They said they couldn’t touch the disease on my bowel, or other “hard to operate” areas, or refer me to anyone that could.
They said they couldn’t give me pain medicine, couldn’t do more surgery, couldn’t do anything else.
What Doctors Fail to Say
They didn’t say it could be endometriosis, something that 1 in 10 people born with female reproductive parts have.
They didn’t say how endometriosis is a disease that impacts multiple body systems, not just reproductive parts, and how my symptoms suggested that this disease could be implicating multiple organs.
They didn’t say a hysterectomy wasn’t a cure.
They didn’t say that pregnancy wasn’t a cure, that it is a lifelong condition, especially without proper multidisciplinary care.
They failed to mention that the majority of endometriosis doesn’t show up on scans or diagnostic tests, and that negative results do not mean that I am “fine”.
They failed to mention that hormones were palliative treatments and only masked symptoms and couldn’t prevent or diminish the disease itself.
They failed to mention how harsher hormone treatments, that induced menopause, could have lasting, serious side effects with only possible beneficial short term symptom relief.
They failed to mention there was a safety limit to being on these harsh menopause inducing drugs and kept me on them for years.
They withheld if they or the non-profits they support, took money from the drug companies who made the drugs they prescribed.
They withheld if their affiliated hospitals took money from the drug companies who made the drugs they prescribed.
They withheld if the drug companies sponsored their research, or if the drug companies sponsored the journals they published in.
They withheld that the drug companies sponsor their professional organizations that advise the treatment plans or standards of care that they follow, standards that are supported by research that is paid for by drug companies, by researchers that are paid drug company consultants, affiliated with hospitals that are sponsored by drug companies, and published in journals that take money from drug companies.
They withheld that drug companies essentially pay multiple entities on multiple fronts to make sure that prescribing their products are included in endometriosis standards of care.
They withheld that unless they did a fellowship with an endometriosis surgical expert, they are not qualified to treat a very complex, multifaceted disease.
They made me feel inadequate, when they were inadequate. They compromised my body, by being compromised.
All in what they said, and did not say.
We will gather at The Endometriosis Summit as patients and practitioners. We will say what needs to be said. Together we will move endometriosis forward.
In 2019 Casey facilitated Minimize the Minimization: What did you just say to me? -an interactive experience on the profound impact of well meaning but uninformed providers at the Endometriosis Summit.
Tickets are on sale www.theendometriosissummit.com
Michela is a teen endometriosis advocate. The Endometriosis Summit will be a Town Meeting of both practitioners and patients. This allows us to hold space for the voices of endometriosis. She writes:
If I asked you about endometriosis what could you tell me?
Having a chronic illness is difficult; emotionally and physically. You have to preserve through your day and through challenges that many other people do not face. School, sports, and even hanging out with your friends can be difficult- this is what I have to live with on a daily basis.
At only 16, my endometriosis has taught me many things: not to be ashamed, advocate for what I need, and for others when they are struggling. We will have no hope in changing this disease if we don’t teach and support everyone that is struggling.
When I was younger, I would hide. I would hide my pain, my diagnosis, my anxiety. Hiding was a mistake. As I got older, I realized that endo was a part of me, something that I would have to live with, so I might as well embrace it. Pain does not mean you are “too delicate”. The strongest women I know, including my mother and my “aunties” all have endometriosis and are all incredibly strong. Having endometriosis does not mean you are weak.
I had to learn this myself. I learned that advocating for your self is the most important thing to do. No one lives your life, therefore no one knows what it is like to be you. Sometimes advocating for your self is difficult. Many times, you may get rude or hurtful comments, such as “she’s over exaggerating” or “it’s all in your head.” This is what makes advocating for your self tough. When I hear comments such as these by those who are supposed to help me, I feel helpless, and sometimes even begin to believe the comments. Experience has taught me not to. I know my truth and as you advocate for yourself with this disease, so will you.
It took me a long time to tune out the noise from others. Now, advocating for other teenagers is super important to me. Sometimes people need help. I want to be that person that hears and helps them. Teens with endo live really difficult lives, and I know this because I live it too. Your friends may not understand, teachers may think less of you, and doctors may think you’re faking it. Don’t worry, I believe you and understand you.
Endo is a part of me, but it does not define me. My hope is to one day make a difference and be apart of finding a cure for this awful disease.
The Endometriosis Summit is a place for people with endometriosis of all ages to learn and be heard. Tickets are on sale at www.theendometriosissummit.com
Nancy Petersen or Nurse Nancy started the first LAPEX program in the nation with David Redwine in Bend Oregon in 1985. The clinic quickly developed into an international patient base. While she is retired now, her pervasive voice in endometriosis is never quiet. She teaches online in Nancy’s Nook for Endometriosis Care on Facebook. It is a board of 70,000+ members –all seeking better care for their endometriosis having failed all gynecology has to offer except expert excision of disease. Nancy's vision of educating the person with endometriosis drives the Endometriosis Summit forward but she will not be present in Hoboken in New Jersey in March. However, it is her mission to educate patients that is part of our inspiration for the event. She writes:
For the first time in years, I think the darkness is beginning to dissipate with regards to endometriosis. This is made possible by committed physicians who have educated themselves and discovered that suffering does not have to continue. Physicians, in particular endometriosis excision specialists, have come to understand the suffering is real. They are now sharing that with others. The validation this brings to the people with endometriosis cannot be underestimated.
Years of being disbelieved has left a sad imprint on these patients. Peritoneal quality pain is very difficult with which to cope alone. Quality Excision Specialists bring hope that relief is in sight. But, it is time to make excision accessible to all with better standards of care and with better training. The programs available to train surgeons, not only minimally invasive surgery skills, but the key components of the true picture of endometriosis are turning the tide. People with endometriosis deserve no less, and it needs to be more widely available.
I am reminded of two female pioneer’s inspiring words as I continue my work in the Nook. First, Margaret Mead PHD Cultural Anthropologist 1904-1978 said, “Never doubt that a small group of thoughtful committed people can change the world. Indeed it is the only thing that ever has”. This is so true as the voice of the people with the disease and the advocates continue to speak up and speak out to incur change in endometriosis. The Endometriosis Summit will showcase the importance of the patient’s voice.
Second, when asked why simple changes took so long to take effect,
Sister Kenny an Australian nurse who changed the course of rehabilitation of polio patients world wide replied: “When we speak with the voice of authority, we come to believe we are the authority”.
At The Endometriosis Summit and beyond it is the voice of the people with the disease and the practitioners that toil so hard to treat properly that will change our future.
Tickets for The Endometriosis Summit on sale: www.theendometriosissummit.com
Dr Allyson Shrikhande is a pioneer in the field of Pelvic Physiatry. She is Internationally known for her amazing work and compassion for people with pelvic pain. She owns Pelvic Pain Rehabilitation which has offices in New York and at Care Point Health in New Jersey. Dr. Shrikhande is a crucial team member to anyone with endometriosis. She writes:
As a physiatrist specializing in pelvic pain, I focus on the muscles, nerves and joints of the pelvis. I have a special place in my heart for my endometriosis patients, and raising awareness and helping to improve the quality of life of these patients is my life’s passion. A large percentage of my patients have known or suspected Endometriosis. Unfortunately, at this point in time the only way to diagnose and definitively treat endometriosis is through surgery. Most patients have suffered for a long time and seen several physicians before understanding why they are having severe bloating, abdominal and pelvic cramping, constipation, pain with tampon insertion or intercourse just to name a few.
When treating patients with Endometriosis, I am looking to identify and help treat potential pain generators other than the Endometriosis itself. I break these “other” potential pain generators in to three categories; the central nervous system, peripheral nervous system and musculoskeletal system. It is important to treat all three for a patient’s body to reach a state of internal balance.
Over time, the presence of Endometriosis causes an inflammatory soup which can irritate and eventually upregulate the peripheral nerves of the pelvis. The upregulation of the peripheral nerves sends signals to the spinal cord and brain, which then upregulates the central nervous system. This is what we call peripheral and central sensitization. In helping patients, we focus on treating these with a combination of peripherally targeted therapies such as pelvic floor physical therapy with nerve gliding techniques, nerve blocks and centrally targeted therapies such as meditation, diaphragmatic breathing, acupuncture and in certain cases mindfulness based cognitive behavioral therapy and central nervous system neuromodulating medications.
When looking at the musculoskeletal system, it is important to rule out other potential pain generators such as an inguinal hernia, umbilical hernia, obturator hernia, sports hernia, hip or lumbar spine pathology, sacro-iliac joint or pubic symphysis pathology. These can all contribute to pelvic pain and can occur concomitantly with Endometriosis. (Dr. Marc Zoland will present on hernias at The Endometriosis Summit and Dr Amy Stein, PT DPT will present on musculoskeletal causes.)
Lastly, a large percentage of patients with pelvic pain have short, contracted, weak and tender pelvic floor muscles. I help identify and treat these hypertonic pelvic floor muscles, which if persist can cause pelvic pain even after the endometriosis is surgically removed.
I truly enjoy treating and getting to know endometriosis patients and helping them regain the quality of life that they deserve.
Come here Dr. Allyson Shrikhande and Pelvic Pain Rehabilitation's Medical Partner Tayyaba Ahmed at The Endometriosis Summit. Tickets on sale www.theendometriosissummit.com