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
Dr. Iris Orbuch joins The Endometriosis Summit Speakers blog series. Dr. Iris Orbuch specializes in the Treatment of Endometriosis. Dr Orbuch specializes in pelvic pain and the treatment of endometriosis. She understands that endometriosis is a major reason women experience pain, though she strives to assess for all additional co-existing generators of pain in order to help women live pain free productive lives. Her and her husband Dr. Laurence Orbuch, have bi-coastal endometriosis specialty practices focusing on excision of endometriosis. She practices in Los Angeles, California and New York City.
Endometriosis in Teenagers
Endometriosis is common in adolescents, especially in those who have a history of painful periods and pelvic pain. Do you know that 70% of teens with painful periods have endometriosis? Adolescents can experience cyclical or non-cyclical pain. Other symptoms include painful bowel movements, constipation, intestinal cramps, bladder pain. Nausea is often reported in teens with endometriosis. Teenagers who are already sexually active may report painful sex.
Both early, superficial endometriosis as well as advanced endometriosis are found in adolescents. Many articles have reported that 60% to 70% of teenagers who do not respond to medical treatment for painful periods have endometriosis at the time of laparoscopy.
Medical treatments do NOT cure or stop endometriosis. For some, endometriosis symptoms do improve with nonsteroidal anti-inflammatory (NSAIDs) and/or the birth control pill. However, it is important to remember that endometriosis progresses while the symptoms are masked.
The laparoscopic findings of endometriosis in adolescents or teenagers are different than an adult. In my practice, I understand that most lesions in teens or adolescents tend to be clear or red. Remember, when you look for a specialist, to find one who understands the difference in the visual appearance of teens with endometriosis. Excision of Endometriosis is the proper treatment of teens with endometriosis.
I offer support and compassion in dealing with adolescents. My husband and I have two daughters and relate beautifully to teenagers and adolescents, which is why many gynecologists refer their teen patients to our practice.
Tickets for the Endometriosis Summit, March 3, 2019 are on sale www.theendometriosissummit.com
The doorknob on the closed door looked 100 feet away though I was only a few feet from it.
I was sweating, pushing down tears, doing a very poor job at masking my anger, in pain and frustrated. I wanted out of that room and still the “doctor” crammed more and more mistruths into that tiny little space.
I use quotations because I knew more about endometriosis than this self-proclaimed endometriosis expert.
“It’s time for you to realize that all women over 40 with endometriosis require a hysterectomy for endometriosis and that’s the way it is”
“Did she just say that,” I thought. Am I being punked because I am sitting in one of the most well known endometriosis offices in the US and the doctor usually treating me just stepped out for a minute.
She continued by telling me I was retrograding into my belly and that was my source of pain so taking the uterus stops all that. My face got redder, because that is biologically impossible and the days of Sampson as the driver of endometriosis and pain are long over, My escape route, that doorknob, looked even farther away.
“But I have nerve damage from the hernia. I don’t want to risk a loss of sexual sensation. I do not want a hysterectomy. It is not good for my pelvic floor”
“It’ll be enough,” she snipped at me.
It will be enough, I was discussing my ability to sense anything sexually for the rest of my life and that’s how the doctor chose to speak to me. My entire career is providing a safe space for people with pelvic pain and this was how my concerns were being treated. I was standing there with an MRI, in hand, showing the nerve compression, a miscellaneous blob of sorts on top a pelvic nerve that could have been causing the pain. Yet, all that was being offered to me was ripping out of my uterus. I wanted to fix the compression. I wanted to make the decision about my fertility and my uterus myself, something I was robbed of when I had an ovary just taken during one of my surgeries. This was my body, my choice and I understood, probably more than any other patient, what that pelvic nerve was plus what surgery could and could do for it. Maybe operating on the uterus was not a cure, maybe it was a non permanent “fix” but that is the choice I wanted to make and it is my choice.I wanted respect.
It took everything I had that day to reach for that doorknob. I had been horrendously ill for months begging for help from these specialists. Going through that door, I exited a ten- year medical relationship with the only person, I thought, ever believed my pain, the senior partner at that practice. In return for standing up for my own uterus, for knowing that a hysterectomy does not treat endometriosis, only adenomyosis a condition inside the walls of the uterus, I was thrown in the garbage by my medical team like I was a nothing that didn’t matter. Months of pain continued. I sought new health care providers, some believed me, some could not find the source of my pain but realized who I was and managed to treat me with respect nonetheless. Any time I sat in a chair or walked, something someone commuting, watching TV, or say working needs to do, my pubic bone, hip flexor, groin, and labia felt like they were ripping. My belly button started to leak white fluid, yet I planked every day because that is my job as a physical therapist. I bloated and I bloated and I bloated. Most of all I cried.
Bad enough I had the disease, but the depths of darkness that ensued from being minimized and medically ridiculed by people I trusted caused me nearly unbearable bouts of depression. My alarm rang every morning. I got up, put one foot in front of the other and let time roll over me until bedtime. Which wasn’t long since I got into bed around 3pm every day. I was waking up at 5am to workout to try to stop the bloating, which didn’t work in case you’re wondering. Fibroids, SIBO, endometriosis and adhesions are a perfect storm for weight gain. With the pain and loss of self, I spent a lot of time in bed. Crying and wondering why, I, who am one of the leading voices in endometriosis in the United States, maybe the world, was being treated like dirt on the street both by my insurance company and by an endometriosis specialist who treated me for 10 years. I spoke up for my own health, then I was left to clean up the pieces created when my trust in medicine shattered- left to clean up the destruction of minimization all while wading through my own health issues. Arduous is an understatement.
I wasn’t silent though. I threw down one of the best speeches I ever gave at an Endometriosis March in Boston. I managed to protest for better standards of care in Washington DC. Almost every single Nook specialist offered to help me and then, allowing myself to trust just a little, I finally let one of them. He went the extra mile to provide care including getting a specialized general surgeon fancy one day privileges in another state just to surgically manage that nerve compression.
5.5 hours of surgery happened this summer, crazy stuff went down with my belly button, more endometriosis was found. Three nights in the hospital and I needed a walker for two days to make it to the bathroom when I got home. During recovery, I walked and I walked and I walked trying to regain my strength. Then because it’s me, dragged myself to a medical conference where I lectured. Almost 6 months out, I am still pushing myself in physical therapy and with exercises trying to recover. Part of my abdominal wall is still numb because care was so delayed, a hard truth for someone so obsessive about tennis.
I am a well-educated, white, cis-gendered, upper middle class woman working in endometriosis and all of this happened to me. I really was told to have a hysterectomy, that my sexual satisfaction didn’t matter, that occult hernias don’t exist, and that no one was going to have a baby with me anyway so I should just be done with it. I also, despite open lines of communications to any professional endometriosis advocate, pelvic pain specialist or endometriosis surgeon I wanted and therapy with medication, found myself in one of the darkest places I have ever been because I knew I was ill and all the team I depended on wanted to do was to forget and diminish me.
If this happened to me, what chance does anyone else out there have?
I still wake up in the middle of the night hearing my chart slam against the desk of the doctor as she pushed that hysterectomy on me. I still hear my doctor of 10 years, tell me that if I don’t apologize, Ill have to just learn to live with my pain as if he was holding my health ransom. I still remember the soul defying, heart wrenching pain of knowing if I did not vote with my feet, no one was ever going to help me. Sickening, a part of me still misses the good times over the years of working together. Trust shattered is a hard thing to get over. The whole ordeal broke my heart, or at least tried to. Goliaths are very visible but my little voice matters.
Don't misinterpret what I am saying. Hysterectomy has a role in the treatment of some pelvic pain disorders. Adenomyosis being one of them. But it has to be the patient's choice, not something shoved onto them.
In those three nights in the hospital, in between tears and massive doses of pain meds, I decided I had enough. I had enough of doctors being allowed to speak to patients like they don’t matter, to minimize their concerns, to overbearingly and unilaterally make decisions for them, to utilize outdated, lousy research and pharma funded information to come for my organs instead of providing me actual care. I’m over it. I am over how hard it is to have endometriosis, four excisions in and I still have disease, I have chronic nerve issues. I struggle with fatigue. I am over people thinking it’s only about surgery, or medication, or physical therapy-it takes a multi-disciplinary approach. I am over people thinking only flash and celebrity matters in awareness instead of delivering people actual treatment choices and real research for this disease.
In those moments I was inspired to bring you all together and discuss what to do about endometriosis- patients and practitioners all together in one room, hearing each other.
I call to order the Endometriosis Summit: Patient and Practitioner Town Meeting. It’s my brainchild that no other woman should endure what the last year, or actually what the last 15 years, of my life has been. I have endured it all.
No woman, girl, or person should miss out on school, career, social participation or motherhood because of pain and painful periods.
Join me March 3, 2019 www.theendometriosissummit.com
Facebook:Sallie Sarrel, Physical Therapist: Endometriosis and Pelvic Pain Management
Instagram and Twitter: drsalliept