by Corey Hazama, PT, DPT, OCS, CFMT, PRPC, WCS. Corey guests on this weeks blog from her office in Downtown Manhattan at Beyond Basics Physical Therapy. She will join Amy Stein as our Self Care Workshop Leaders at the Endometriosis Summit. Sleep can be crucial to combatting pelvic pain and for brain health. Corey writes:
In recent years, with the advancement of social media, Self-Care has taken on a life and meaning of its own. Self-Care is more than a face mask on a Friday night; it includes a variety of strategies that people undertake to establish and maintain their own physical and mental health. The World Health Organization defines Self-Care as “the ability of individuals, families and communities to promote health, prevent disease, maintain health, and to cope with illness and disability with or without the support of a healthcare provider, based on their knowledge and the information available.” It encompasses many different categories, which includes hygiene, nutrition, lifestyle, environmental and socio-economic factors, and self-medication.
Now that we understand the bigger meaning of Self-Care, this brings us back to the topic of Sleep. Sleep is the ultimate Self-Care act. Poor sleep has been implicated in a number of negative health consequences. But as individuals, we can empower ourselves to take the responsibility to make changes to ensure a good night’s sleep. Self-Care is also not just something that the healthy do to stay healthy, but also something that is essential for those with chronic disease to be able to self-manage their condition and symptoms.
More and more evidence supports the importance of sleep and its effect on our well-being, physical health and ability to heal, cognition, and how much pain we feel. This makes sleep the ultimate Self-Care act because it is something we do every day and there are so many ways to alter to increase the likelihood that our quality of sleep is improved so that we can reap the benefits of a good night’s sleep.
Sleep is needed to sustain life. Studies show that poor sleep actually shaves years off of our lives. There are also a number of conditions that are affected by insomnia. A study of 1,869 cases of migraines showed that sleep protects against migraine attacks and that 29% of migraines were directly related to insomnia. Another study in 2016 found a relationship between insomnia and absences from work due to illness, demonstrating a connection between decreased sleep and decreased immune function. Numerous studies have shown that sleep disturbances are related to an increased prevalence of obesity, insulin resistance, type 2 diabetes, cardiovascular disease, and also to metabolic syndrome. Metabolic syndrome is a subtle systemic inflammation which can occur when there is increased stress, anxiety, depression, insomnia, as well as obesity and inactivity, resulting in a potential driver of chronic pain. Insomnia preceded 40% of psychiatric mood disorders and sets in at the same time as another 20% of mood disorders. Lack of sleep can affect athletic performance, whereas better sleep improves it. In addition, there is a negative impact on healing and recovery..
A 2019 study found that sleep deprivation boosts responses to pain in the areas of the brain that sense pain, and it suppresses activity in areas that modulate pain experiences. This means the brain perceives more pain coming from our nerves, and has less ability to dampen the response. A study in 2016 on 133 patients with knee arthritis compared those who slept well versus those who did not, and it found a high degree of certainty that decreased sleep, or fragmented sleep, strongly affected the pain and central nervous system relationship, what we know as central sensitization, or when the inputs into the central nervous system are amplified.
There are two types of sleep: REM (Rapid eye movement) and non-REM sleep. During the night, we cycle between these two types of sleep, completing on average four to six cycles. The type of sleep one gets is more important than the amount of sleep. You could sleep for eight hours, but if you are not entering REM sleep, the benefits will not be the same. There are a number of factors that determine our daily rhythm of being awake and sleeping, as well as other body functions, otherwise known as our circadian rhythm. Light stimulates this rhythm as well as hormones. It is generally recommended that we get about 6-10 hours of sleep, but it varies between individuals. Most adults need about 7-8 hours to feel fully rested.
The major factors that disrupt sleep are acute Stress (major life changes), physical illness (that causes pain) and psychological problems (depression/anxiety), but a number of specific habits or activities also can affect sleep.
-Going to bed and waking up at different times every day
-Taking naps during the daytime or in the evening
-Drinking caffeinated beverages after 3 PM
-Smoking nicotine, which is a stimulant
-Sleeping in a noisy bedroom
-Sleeping in a room that gets a lot of light (good luck New Yorkers!)
-Drinking alcohol in the evening may relax you at first, but alcohol does lead to disturbed sleep
-Having heated arguments with significant others or roommates before bed
-Using the bedroom for working or watching TV
-Sharing the bed with a snorer or restless partner.
The question to ask yourself is, which of these activities do you feel you have control over and you can change? There may not be much you can do, for example, if you have a snoring, kicking bed mate, besides urging them to seek medical help, getting ear plugs, or trying one of those mattresses that claim to minimize movement (anyone remember the wine glass and the bowling ball commercial?)
What helps sleep?
-Getting exercise every day
-Taking a warm bath 45 minutes before bedtime
-Drinking a caffeine-free herbal tea 30 minutes before bedtime
-Learning relaxation/tension release exercises like deep breathing or progressive muscle relaxation
-Unplug an hour before bed (including your phone!)
-Get up if you can’t fall asleep within 20 mins and return to bed when you are sleepy
-Set the alarm for the same time every morning
-Dim the lights before bed
-Try lavender aromas and self-massage for relaxation
-Unwind by doing something relaxing like reading a good book (no thrillers, people!)
-Write a journal to get all the things in your head that are running around and causing you more stress on paper and out of your brain
We can all also benefit from locating the stressors we can eliminate. If we are still having problems we can’t overcome on our own, it could be time to talk to a mental health professional.
In addition, if there is musculoskeletal pain that is prohibiting you from getting enough sleep or finding a comfortable position to sleep is a problem, a physical therapist is a good place to start. A physical therapist can work with you to decrease musculoskeletal pain and help with strategies to find improved posture and better alignment to decrease strain to your body, which will help to promote better sleep by allowing your body to relax and decreasing pain.
-What is Self-Care? -ISF isfglobal.org/what-is-SelflCare/ -Sleep Self Care University Health Services Tang Center S:/handouts/Clinical/Insomnia.doc 6/23/16 12:16PM
-Paul Ingraham, Pains Therapy Theory New Books Contact; Insomnia Until It Hurts: The role of sleep deprivation in chronic pain, especially muscle pain. http://www.painscience.com/articles/insomnia-unil-it-hurts.php
-10 Self Care Habits to Relieve Stress Before Bed-Awake & Mindful. Awake & Mindful (httyps://awakeandmindful.com/)
-Jo Nijs, et al. Sleep Disturbances in Chronic Pain: Neurobiology, Assessment, and Treatment in Physical Therapist Practice. Physical Therapy, Volume 98, Issue 5, May 2018: 325-335.
-Barbara Rigel, et al. Poor Sleep and Impaired Self-Care: Towards a Comprehensive Model Linking Sleep, Cognition, and Heart Failure Outcomes. Eur J Cardiovasc Nurs. 2009 Dec; 8(5): 337-344.
-Patrick H. Finan, et al. The association of sleep and pain: An update and a path forward. J Pain. 2013 Dec; 14(12): 1539-1552.
Joining the Endometriosis Summit all the way from Oregon, Dr. Amanda Olson, PT DPT, PRPC is a specialist in all things pelvic floor and exercise. A long time faculty member for the APTA, she will share her expertise on running and endometriosis. Amanda also created, designs for and own Intimate Rose, a pelvic health products company for dilators, kegel exercise weights, pelvic wands, and pelvic health supplements. She writes:
As many people with endometriosis (endo) know all too well, exercise and physical activity are important in managing symptoms of pain, inflammation, as well as maintenance of bone, musculoskeletal, and cardiovascular health. On the other side of this coin is the fact that it can be difficult to get up and move in the fits of an endometriosis pain episode. “Motion is lotion” as they say, and gentle yoga, Pilates, and cardiovascular exercise can help reduce inflammation and decrease pain. Endorphins are released with exercise and these “happy” chemicals can also help with coping strategies for endometriosis symptoms. The amount and intensity of physical activity needed for optimal health varies for each person living with endo, however these tips can help provide an overall guide. Working with a physical therapist who specializes in pelvic health and who has education in endometriosis is also helpful in curating a program to fit your unique needs.
When considering an exercise routine, it is important to remember that endo adhesions can cause disruption in the orientation of the pelvic organs, and in the abdominal muscles themselves. Additionally, laparoscopic surgery and other abdominal and pelvic surgeries can result in scar tissue in the abdomen. Endo adhesions and scar tissue can result in the disruption of the normal length, tension, and tone of the abdominal muscles. Retraining the muscles and the pelvic floor how to properly contract in co-ordination is key to restoring stability to the body.
Providing stability to the body during exercise and functional movements of daily living is a matter of mechanics. If the trunk is thought of as a house of our organs, the diaphragm forms the ceiling, the pelvic floor forms the floor, and the abdominals and deep back muscles form the walls. When the abdominals are affected by endometriosis, the walls of our “organ house” become weaker, which provides less stability for the ceiling and floor. This alters our intra-abdominal pressure (IAP), and can affect the piston-like mechanics of the diaphragm and pelvic floor, which work together to create efficient breathing.
Furthermore, it is important to note that the abdominal muscles work in symphony with the pelvic floor muscles, diaphragm, and small muscles in the spine called the multifidi to stabilize the trunk, promote effective breathing, and maintain IAP. The diaphragm and pelvic floor work in a piston-like manner wherein as the diaphragm drops drawing breath into the lungs, the pelvic floor also drops. To expel air it is vital that the diaphragm returns to its resting point and the pelvic floor lifts back up. This requires that the muscles maintaining the walls of the trunk are strong and hold form. Thus, the abdominal and other core muscles are important in maintaining proper intra-abdominal pressure (IAP) for breathing, posture, and bracing the spine during functional movements as well as when you cough, sneeze, have a bowel movement.
Retraining the core muscles to contract in coordination with your breathing for optimal exercise requires some practice. One exercise to get you started is the pelvic brace exercise:
Pelvic Brace exercise: lie down on your back with knees bent and feet shoulder width apart. Inhale gently. Then exhale and contract the muscles of the core by imagining that you are shutting off the flow of urine while drawing your abdominals slightly inward. Your gluteal muscles should not be contracting, and your pelvis should remain perfectly still, not rocking or tilting. Initially, try to hold the contraction for 3-5 seconds. Rest for 5 seconds. Repeat 10 times, and do 2-3 sets.
Conversely, it is important to master the co-ordination of relaxing and expanding the pelvic floor, also referred to as a pelvic floor “drop”. To perform a pelvic floor drop:
Pelvic drop exercise: lie down on your back with knees bent and feet shoulder width apart. Inhale and feel the pelvic floor expand gently away from your sits bones. It might help to envision that the muscles around the urethra, vaginal opening, and rectum are a bubble gently expanding down and outward. Try to maintain the drop for a count of 3 (without holding your breath), then relax and allow the muscles to return to a resting position. Repeat this 10 times and perform 2-3 sets.
These basic exercises are cornerstone exercises which allow for flexibility, co-ordination, and control of core. These can implement throughout the day and added to a pre-existing exercise regime. A pelvic physical therapist can provide additional exercises, manual therapy, and modifications to help you find a routine that honors where you are in your stage of endo, to help you reach your goals.
By Antonio R. Gargiulo, MD
Dr. Gargiulo is a reproductive endocrinologist and reproductive surgeon at the Center for Infertility and Reproductive Surgery and the Boston Center for Endometriosis at Brigham and Women’s Hospital. He is the Medical Director of Robotic Surgery for Brigham Health and an Associate Professor of Obstetrics, Gynecology and Reproductive Biology at Harvard Medical School. He will be moderating a panel discussion called “Attacking Adenomyosis” at the 2020 Endometriosis Summit. He writes:
Of all the patients I see for fertility treatment or gynecological surgery, patients with endometriosis are the most likely to come in with a very clear idea of what surgery they want. They have read the blogs, done their research, and often heard the opinions of several other doctors. They grill me about my specific surgical experience. Many have already had surgery in the past and face the prospect of an endo re-op. They want this surgery to be the last. Most of them are now demanding excision surgery – and I couldn’t be happier.
Since 2006, I have performed minimally invasive excision of endometriosis with the assistance of a surgical robot, using a miniaturized flexible CO2 laser as my only cutting device (Lumenis UltraPulse Duo CO2). The robotic surgical platform and the flexible CO2 laser each offer distinct advantages for preserving fertility during excision. The robot allows me to operate with 3DHD vision through small incisions with exceptional dexterity and the flexibility to articulate my instrument tips in every direction, which I cannot do with the instruments of standard laparoscopy. This means I can see, reach and excise endometriosis cells located throughout the abdomen. Because the robotic approach is easier to learn, compared to traditional laparoscopy, I’m hopeful that the technology will encourage more surgeons to offer true excision surgery for endometriosis as their primary approach.
The synergy between the enabling nature of the surgical robot and the precision of the flexible laser device defines my surgical technique. By using the CO2 laser as the primary cutting tool, I can excise disease without burning adjacent tissue. Both actions (excision and lack of collateral damage) are critically important for preserving fertility. I can work around the ovaries or fallopian tubes without destroying healthy cells. In contrast, older lasers and classic thermal ablation techniques can damage tissue beyond the intended target (endometriosis cells). Another option, classic laparoscopic scissors used without thermal energy, also avoids collateral damage. However, scissors cause more bleeding than the CO2 laser, and this in turn means increased difficulty in visualizing the pathology (and the possible need for secondary coagulation).
Even after full excision by a capable surgeon using such advanced technology, there is no guarantee that a patient will not have a recurrence of pain and need additional surgery. However, excision is by far the best option available, with results above and beyond any other treatment. Medication to functionally antagonize one’s own estrogen (the hormone that “feeds” endometriosis), such as progestins, in my opinion, may help reduce pain and inflammation. It may be considered as an adjuvant to excision surgery in patients that can tolerate them. Specialized pelvic physical therapy is also considered a fundamental complementary treatment.
Nevertheless, most surgeons still offer older surgeries like ablation, which causes more pain, endangers fertility, and virtually always leads to re-op. At the other end of spectrum, pharmaceutical commercials are trying to persuade women to avoid surgery altogether and just take expensive medication that, even when not stopped due to the nasty universal side effects, only offers a short-term remedy (it must be discontinued in a matter of months).
Fortunately, any effort to steer women with endometriosis towards conventional ablation surgery, or towards a medication-alone approach, underestimates the awareness and shared experience peculiar of this patient population. People with endometriosis will keep researching and continue to demand the right surgery. It’s my hope that by doing so – in effect, holding doctors accountable to always offer the best surgical option – they will increase the ranks of surgeons trained in robotic CO2 laser excision.
Dr. Allyson Shrikhande is a board certified Physical Medicine and Rehabilitation specialist. She is Chief Medical Officer of Pelvic Rehabilitation Medicine. She is also the Chair of the Medical Education Committee for the International Pelvic Pain Society. Dr. Shrikhande is passionate about endometriosis and pelvic pain . She is dedicated to helping those who suffer and has traveled the world teaching gynecologists, urologists, physiatrists, and interventional pain specialists about pelvic pain. Endometriosis Summit Founding Faculty, Dr. Shrikhande will analyze causes of pain in our Pelvic Pain Panel at our Second Annual Town Meeting on March 1, 2020.
Vulvodynia means simply pain in the vulvar area. Frustrating for many patients, as it is more of a description of symptoms rather than an explanation of the underlying cause and pathophysiology. There are numerous underlying
Contributing factors to vulvodynia including hormonal influences, recurrent infections and neuromuscular influences. The connection between vulvodynia and Endometriosis is through neurogenic inflammation around the pudendal nerve. The pudendal nerve innervates the lower two thirds of the vulva. Therefore, if the pudendal nerve is irritated and inflamed vulvodynia can occur.
Endometriosis can contribute to neurogenic inflammation around the pudendal nerve in three ways; 1) Endometriosis can cause a chronic guarding of the pelvic floor musculature and ultimately a neural ischemia around the pudendal nerve 2) Endometriosis in and of itself is a pro-inflammatory disease contributing to the pro-inflammatory cytokines release around the pudenda nerves 3) direct innervation of the endometriosis plaques along pudendal nerve (less common). Persistent neurogenic inflammation along the pudendal nerve which innervates the lower two thirds of the vulva can ultimately lead to vulvodynia symptoms. Perhaps as a community we should think of Endometriosis more often in the refractory vulvodynia patients?
Tickets for the Endometriosis Summit are on sale
Isn’t it maddening when people tell you to breathe and relax more to help ease the pain associated with endometriosis and pelvic floor dysfunction? If it were only that easy.
I’m Dustienne - a pelvic health physical therapist and yoga teacher. I have also had experience with debilitating dysmenorrhea - vomiting trying to get home, experiencing the pain that makes you rub your feet together...you get the picture.
Let me be honest - breathing during this time did not make my pain go away or prevent me from a vomiting extravaganza.
It did help to have a strategy. It was useful for me to have a place in my mind to go to when I would get so frustrated because I needed to stay home and miss out on work, travel, or family time. Training my mind with a meditation practice offered me some solace during this time...and so did the Gilmore Girls ;).
In my experience, my body would tighten secondarily to the primary issue of pain, cramping, diarrhea and vomiting. After the flare would end, I was left with multiple areas of my body gripping and hanging on for dear life. My pelvic floor would be super tight, which you know can set you up for constipation. My back would be stuck in flexion so that I would not be able to stand up straight.
Working with the breath, gentle yoga postures, mindfulness, and supporting the nervous system are strategies that helped me and hopefully will help you.
Supporting your nervous system
Think of putting coins into a piggy bank. Each little bit you put in adds up. Some days you might need to take a bigger withdrawal than other days.
MeditationMeditation is not for everyone, but those who enjoy it find it super helpful. I’ve had the pleasure of attending Tara’s workshops and she is an absolute delight. I love her basic body scan: https://www.tarabrach.com/meditation-basic-body-scan/
Supporting your nervous system by attending to your senses can be helpful and enjoyable. The experience of pain and the stress of not being able to attend to your responsibilities can trigger a fight-or-flight response. Nurturing yourself with a restorative yoga practice can be helpful, especially in the week before your symptoms escalate (if that is predictable).
When people experience pain, especially deep pain near the organs, the body hugs itself by tightening around where the pain is felt. This is called the viscero-somatic reflex. We can use visualization techniques to encourage the body to soften.
I find asking my patients to soften the pelvic floor is a little ethereal. If you ask someone to contract and relax their upper traps (just above your shoulders), it’s pretty easy to do, especially with the visual feedback of a mirror. The pelvic floor muscles are a little trickier to connect with since we aren’t usually looking at them!
Finding the bony landmarks of your pelvis to orient where the pelvic floor muscles are can be helpful. Find your sitz bones, pubic bone in the front, and tailbone in the back. This diamond shape houses the pelvic floor muscles. When you inhale, your pelvic floor muscles lengthen towards your feet. If you experience pelvic pain, your muscles will probably be on the tighter side and have a harder time lengthening on your inhalation. By utilizing the visual cues, you use your mind body connection to encourage the lengthening.
A little research
For the scientifically-minded folks, there was a study done in Brazil that revealed yoga reduced pain and improved the quality of life. It was a randomized control trial that looked at the use of hatha yoga to treat pain caused by endometriosis. The goal of the study was to evaluate chronic pelvic pain, menstrual patterns, and quality of life.
How does yoga help?
Postures to try
Here are a few of the many posture options to try. See how they feel in your body!
Reclined Goddess Pose
I love restorative yoga postures for a number of reasons, but especially because of the chance for us to rebalance the autonomic nervous system. The sympathetic nervous system (fight-or-flight) gets stimulated with persistent pain, and activating the parasympathetic nervous system can help reduce pain. You can create restorative postures with pillows, bolsters, blankets, blocks...whatever is around. I have found creating a restorative Child’s Pose or Puppy Pose was helpful when I was bedridden and wanted to shift my nervous system.
When people are flaring they will usually not want their abdomen to be on stretch. Child’s Pose is helpful for calming and grounding, lengthening the fascia in the back body, and softening the fascia in the front.
Try this posture to open up the side body and abdominal wall. It offers sidebending at the thoracolumbar junction (where the mid and low back meet) where the diaphragm inserts. Breathing into the ribs, especially on the elongated side is a nice additional benefit.
When you are not flared up, offering extension into the low back will allow your abdominal wall and fascia surrounding your organs to lengthen. Sphinx pose is a nice place to start with extension poses, unless that is too much. Click here for my favorite extension progression.
I hope this blog post offers you some ideas that help make your journey a bit more easeful. I wish you peace in your mind, your heart, and your body.
Dustienne Miller, PT, is a physical therapist practicing in Boston, MA. She own Flourish Physical Therapy and Your Pace Yoga. A supporter of The Endometriosis Summit right from our start, Dustienne will conclude Endo Summit Workshop with a guided meditation and yoga program. She will also help the Town Meeting crowd find their breath in a group activity. Ticket are now on sale for The Endometriosis Summit
The Endometriosis Summit's Mentor and Friend, Dr. Maurice K. Chung, RPh, MD, joins the blog this week. Dr. Chung is an absolute pioneer in pelvic pain, preaching to the world that there are multiple generators of pain in the pelvis when someone has endometriosis. He is the Director at Mercy Regional Center of Excellence for Endometriosis, Pelvic Pain & Urogynecology in Canton, Ohio, and Clinical Professor of Obstetrics/Gynecology at the University of Toledo School of Medicine. Dr. Chung has served as President to multiple societies including SLS and IPPS. He is the founder of the "evil twins" concept of painful bladder syndrome and endometriosis being present together. He is also an amazing friend and, along with his World Team of Pelvic Pain experts fantastic conference companions, Pelvic Pain would be no where without Dr. Chung and it is an honor he has joined our blog. He writes:
The pelvic neural network is complex and interconnected, with multiple factors that affect the expression of pelvic pain. For my patients whose pelvic pain is related to endometriosis, the central focus of treatment begins with complete laser excision, removing the initiating source. This minimally invasive surgery does not damage adjacent tissue, thus preserving the ovaries (and fertility) while mitigating pain. In addition to this essential procedure, I take a multi-step approach to addressing all contributing sources of pain throughout the pelvis.
What Causes Pelvic Pain?
A study of women’s pelvic pain showed that 30% of cases were related to the bowel, 30% involved the bladder, 20% were musculoskeletal, and 20% could be attributed to the reproductive organs.1-3 As a gynecologist, I can’t just focus on the reproductive organs, knowing that they only account for 20% of pelvic pain cases. When a patient has pelvic pain, I evaluate all the potential sources, even if another practitioner has already made a diagnosis.
Patients with endometriosis often have interstitial cystitis (IC), or bladder pain syndrome, pudendal neuralgia, and pelvic myofascial pain syndrome. Some physicians diagnose them with pelvic floor dysfunction and order physical therapy. In my approach, I identify all the sources of pain and treat them individually. First, I evaluate the urinary system and ask patients questions that could point to IC. Next, I evaluate the pelvic floor muscles and the nerves that innervate those muscle groups. To gauge potential bowel pain, we discuss symptoms such as diarrhea, constipation, dietary changes, or a previous diagnosis of gluten sensitivity, irritable bowel, or inflammatory bowel.
Treating All Sources of Pain
Once I understand the source(s) of my patient’s pain, I explain the total picture of pelvic pain as a neighborhood. The endometriosis is a burning house. If some of the neighboring houses (the bladder, muscles, nerves, or bowels) are burning as well, then they add more fuel to the fire. The neighborhood is burning hotter and out of control. We can’t put out the fire by just treating one house – we need to treat the whole neighborhood. Here’s how we do that:
Endometriosis is a complex and painful disease, but a combination of laser excision and a systematic approach to other common sources of pelvic pain has been very effective for my patients. Three months after excision surgery, 80-90% of my patients have at least 50% less pain, and it continues to decrease as the pelvic network quiets down. We could not achieve these results by treating endometriosis as an isolated problem – we need to address the pelvic pain as a whole.
1. Zondervan KT, et al. Patterns of diagnosis and referral in women consulting for chronic pelvic pain in UK primary care. Br J Obstet Gynaecol. 1999 Nov;106(11):1156-61.
2. Howard FM. Chronic pelvic pain. Obstet Gynecol. 2003 Mar;101(3):594-611.
3. Chung MK, Chung RP, Gordon D. Interstitial cystitis and endometriosis in patients with chronic pelvic pain: The "Evil Twins" syndrome. JSLS. 2005 Jan-Mar;9(1):25-9.
Niva Herzig PT, of Core Dynamics Physical Therapy
chose to interview one of her patients with endometriosis as #EndoSummit2020 prepares for its Sex and Relationships panel. Niva writes:
I thought this would be a perfect follow up to the first blog about relationships and Endometriosis. A real story about a real person and life with endometriosis. This is how it affects them and their relationship. How courageous for this remarkable person with endometriosis to share this story. We explored personal questions about her diagnosis, surgeries, emotions and of course relationship and sex with endometriosis. First a little about her:
“I'm 43 years old. I was born in Queens NY and raised in New Jersey. I was diagnosed at 28 years old. Before my diagnosis I was a behavior therapist for autistic children and teens. I loved every second of that job. I loved going to work every day. Unfortunately, the job was a bit too physical and I had to resign 3 months after my first Lupron shot.
I was bedridden for 6 months following my last shot of Lupron. But I eventually made it back to being a per diem case worker in the autism field again.
Unfortunately, around 2013, I was deemed permanently disabled because of numerous other conditions.
It's a life changing experience. Before this, I was a very active person. I went hiking weekly, traveled, and had numerous social circles.
Now I'm trying to manage my new life. I use photography as an outlet now. Music, my dog, walking, and photography are my saviors. I still love being out in nature. It brings me peace. I just wish my body would allow me to live life again and not just survive it. But I'm working on it.
When did you know something was not right?
I knew that something was not right in high school because I used to throw up from my period every month. I would get fevers. The pain in my lower back and down my legs was so bad, I would often crawl around my house.
When were you diagnosed?
I was not diagnosed until I was 28 years old. I was tested for Crohn’s Disease, had a colonoscopy, was told I was just anxious, etc.
How many surgeries have you undergone?
I have had a total of 5 surgeries. My last surgery was less than 2 years after a total hysterectomy. I was recommended to the CEC in Georgia because my case was too complicated. I had my hysterectomy with a regular gynecologist. It wasn't until I joined social media that I even found out about excision. All my previous surgeries had been just ablation. My gynecologist kept missing my pain after my hysterectomy, so I had to start advocating for myself.
When was your first surgery?
My first surgery was January 2005.
Are you in a relationship?
Yes. I'm on my second marriage.
Were you in a relationship when diagnosed?
I was less than a year into my first marriage when I was diagnosed.
How did you explain to your partner?
Honestly, I didn't really. He was pretty active in coming to doctor appointments with me. I was not aware or knowledgeable enough about how severe endometriosis was. For some reason, I didn't think it was a big deal at the time. I was just happy to finally have a diagnosis.
Did your diagnosis change your relationship?
Absolutely! My first marriage ended because I couldn't have children because of endometriosis.
We tried for years with no luck. It really put a strain on us. I wanted to adopt, he didn’t. It got more complicated than that. I remarried several years later. And unfortunately, the worst times of my Endo diagnosis happened during my second marriage. I was recommended to have a total hysterectomy by a regular gynecologist. After my hysterectomy, I was still in constant pain. I was back and forth to the ER almost every weekend for 6 months. My bladder and bowel issues were so much worse. It was during a 12-hour visit to the ER that we discovered that I had ovarian remnant syndrome. I was devastated, realizing I had a hysterectomy for no reason. I then began to realize that I needed to advocate for myself. I went to an endometriosis specialist locally. He told me that my case was too complicated and didn't feel comfortable performing the surgery. I appreciated his honesty so much. My last surgery was 8 hours in Georgia. My husband came with me. It took a toll on both of us mentally. I've had severe PTSD ever since. Sex is now extremely painful. I'm constantly terrified of ripping or harming my vaginal cuff since I had to have my first one completely removed and repaired. Living in fear is not exactly healthy for one's sex life. We manage in our own ways. But, endometriosis has definitely affected both of my marriages and not in a good way.
What changes have you made as a couple to overcome pelvic pain?
I go to pelvic floor physical therapy every other week. My husband has been extremely patient and understanding and never forces sex on me. We are intimate in other ways now. But I hope to one day be able to not be traumatized enough to get my "regular" sex life back. I've also just started psychotherapy to help deal with my PTSD better.
Do you ever feel guilty or you have let your partner down?
Absolutely. All day every day. I never not feel guilty. It all adds to the trauma. It's an endless cycle. My second husband did not want kids, so that guilt is not there, thankfully. But I feel guilty all the time for my many health problems. I feel like a burden. I feel like he deserves a healthy wife who can participate in all the things he wants to do. I have many issues because of a drug I was given for endometriosis in 2007 called Lupron. It pretty much destroyed my immune system. I lost my career and I made pretty decent money. It's hard living on one salary now. I feel it puts a ton of pressure on my husband and I constantly feel that is my fault. Endometriosis bleeds into every aspect of your life. It affects intimacy, friendships, income, ability to participate in daily activities. I constantly think my husband would have a better, stress free life if only he had a healthy wife.
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/