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.