Endometriosis Foundation of America
Medical Conference – 2012
Moving on in Your Life After Endometriosis Surgery
Dr. Karlene ChinQuee: Good afternoon everyone, my name is Dr. Karlene ChinQuee. Just a short introduction. I am a board certified OBGYN in private practice in Manhattan. I am a GYN attending at Lenox Hill Hospital and I am also Fellowship trained in a Diplomat in Integrative medicine. For those who many not know integrative medicine pools from diverse fields of biochemistry, from physiology, from nutrition, exercise, immunology and environmental medicine. Basically what it does is look for the root causes of diseases.
Our topic today is “Moving on in Your Life After Endometriosis Surgery” or we could actually say “How to Improve the Quality of Your Life After Endometriosis Surgery”. When we talk about the health related quality of life it is basically a multi-dimensional concept encompassing the physical, psychological and social aspects. As we learned yesterday from our patient panelists, who were absolutely wonderful in enlightening us, endometriosis is a chronic disease with many faces. These patients may experience grinding fatigue, mood swings, depression, allergies, bloating, painful sex, bladder and bowel issues and muscle pain, joint pain to name a few. This is very much a devastating, incapacitating, life altering disorder that robs women of a normal life. It becomes a challenge basically to reliably meet the needs of everyday functioning and of their families so they miss out on school, they miss out on family events and events with friends. A lot of the time the pain of endometriosis is basically too severe for them to function but most of these women will get up, put on a brave face, and do their best to have a normal life. But feeling like a vibrant, desirable woman is probably a distant memory for many of those women. Pain from sex can be so intense that relationships get strained, husbands and boyfriends get frustrated and the strain plays on family relations. It is very common and very real. They basically end up if we are really listening to our patients that they end up scared and scarred. They are not really trusting of the medical community. A lot of times information is confusing. It is frustrating and they feel very isolated. They really just want to get back to some sense of normalcy, to have a family life, social life, sex life and to get their control back.
Dr. Andrew Cook is a reproductive endocrinologist and an expert in minimally invasive treatment of endometriosis. I resonate very much with what he says when he says, “A successful treatment of the endometriosis patient involves a two-pronged approach; the complete removal of the endometrial implants by wide excision is basically the target to disease elimination, and a proactive restoration of health”, which is what I think we are going to be talking about today because of some medical treatment of the patient to restore her overall health, including her immune system, the hormone balance, the nutritional balance and such. I think it is agreed by experts that the endometriosis must be completely removed with the appropriate surgical tools and the appropriate skilled surgeon. Then after that, where do we go? The surgeon can actually remove the disease but it cannot restore health. This is where we need that multi-disciplinary approach. Yesterday we had a wonderful talk in the sessions because Dr. Tamer Seckin talked about having that multi-disciplinary team of surgeons, such as the colorectal surgeon, the urologist and maybe the cardiothoracic surgeon.
I think what we are going to do today is talk about after the surgery having that multi-disciplinary approach where we are evaluating the entire person; their hormonal health, their immune function, their nutrition, their biomechanics, function of the muscles, the bones, the joints, the ligaments, the nervous system function and the effects of the environment. I believe Dr. Seckin said this is a very humbling disease and I definitely concur because as he says in that surgery he needs that team of experts. We have our team of experts today. We have wonderful line up today of a distinguished team of experts and we have two speakers. We have five panelists and each of our experts excel in their field of endeavor.
I would like to introduce you to our first speaker. Dr. Donna Kesselman is a renowned physician, author and lecturer who specializes in the treatment of acute and chronic pain. She completed her residency in internal medicine at Lenox Hill Hospital in New York as well as a Fellowship in pain management and palliative care at Memorial Sloane Kettering. She attended Harvard Medical School for post-graduate training. She has been an attending physician at Lenox Hill Hospital since 2001 – Dr. Kesselman.
Dr. Donna Kesselman: Thank you. So my story is actually very similar to many women. I often suffered from terrible debilitating cramps and my doctors would tell me they were normal and to be expected. They put me on birth control pills at the age of 13 and said that I would fine that would take care of my pain until I could have a baby, which would cure everything, which was great advice at the age of 13. I am sure many of you have had the same experience. Despite the fact that finally at 28 I was diagnosed with endometriosis and successfully treated with surgery at the time, my pain continued and many of you are probably thinking, “Well, why would I still have the pain?” Unfortunately, untreated pain of so many years duration often becomes what we call chronic pain. And although the underlying problem that had started my pain had been fixed I was still hurting. The pain had stopped being a symptom and had become a problem in its own right. Along the way I had met many women like myself who were suffering and whose quality of life, as you mentioned, were diminished, who were unable to sustain relationships or work and to whom having sex was just a painful memory. I made a conscious decision not to suffer and instead of letting pain take over my life decided to get my life back and be in a position to help other women do the same.
I had a successful career on Wall Street and at the age of 38 left that and started medical school. Today I have a private practice totally dedicated to treating pain. I thought to myself, “Why was I asked to speak today?” and I think it is because all of us here have our own perspective and every doctor has their area of expertise, and mine is pain.
I treat many patients with endometriosis thanks to doctors like Dr. Seckin who are committed to ensuring that the treatment and control of the patient’s pain is an integral part of the management of this patient; not just after the surgery, which is what we are talking about, but along the continuum from watchful waiting to post op. I have never forgotten my own story. I try to treat every pain as I would want to be treated myself and something I know my patients appreciate is my accessibility. I also approach each patient as a unique individual with their own unique story. We arrive at a treatment plan together and work closely as a team adjusting the approach until we find something that works best for that patient. Often if patients are comfortable doing so I will bring in other members of their family, people who are involved in their life because I find that that is helpful for the other family members to understand as well.
I use a different number of modalities, both traditional such as medications and non-traditional approaches. I know that some of you are probably concerned saying, “Well, she uses medication is she talking about narcotics?” which is getting more and more publicity unfortunately in the news today. The answer to that is unfortunately sometimes yes I have to use them and sometimes no. But I want to reassure any of the patients who are here today, as well as physicians, that I am extremely responsible in prescribing those medications and actually, one of my areas of expertise is getting patients off those medicines when they are no longer required. That happens quite a bit after successful surgeries that we have talked about. In doing so, if it is done the right way you do not have to go through the horrible symptoms of withdrawal. As long as you have somebody there who specializes in that, in pain or in that type of approach to have somebody there holding your hand and helping you through it helps expedite the matter.
I am just going to end my brief talk with a couple of stories of patients after surgery that will give you a better idea of what I think is good pain management. A patient of Dr. Seckin came to see me just a few weeks ago. We had met once for a consultation I think about two years ago, and although she was in a great deal of pain at the time she was very reluctant to try any treatment. Now she was two weeks post operative from her laparoscopic surgery. Dr. Seckin had warned her, which I guess is common, that her first period after the surgery might be “the worst of her life”. She told me that in the interim from when I had seen her two years prior she had made numerous trips to the emergency room, sometimes by ambulance, for her menses associated pain and she was really terrified at what was to come. She asked if I would meet her at the emergency room when her period started and if I would admit her to treat her pain that she was certain would be intolerable. Rather than do that she and I came up with a plan. I gave her several prescriptions in small amounts that she was going to take to prevent the nausea that had always been triggered by the severe pain. She was going to treat the pain the minute it began if she needed to and she had my permission to call me at any time during this process because I knew how frightened she was. We made contingency plans as well that we would meet at my office rather than the ER. I cannot tell you how many women I have seen that end up repeatedly in the emergency room for these problems. I am sure you have had the same experience. I just think it is really shameful to be in that position, to have a patient end up there. Even though this was going to affect my life I said, “You know, you really have to regain control of your life”, even if I had to stay overnight in my office, thank God it did not happen, but I told her I would do that rather than have her go to the ER. She did great. She was really nervous. She called me several times for reassurance but she was actually able to stay home and said the pain was better than she had experienced in years from before the surgery. I thought that was a successful story of what good pain management and good surgery can lead to.
Another patient that I have that has a very high powered position and was living with a great, and always lives with a great, deal of stress came to see me. For years before her surgery she had been taking a tremendous number of Oxycodone pills, every day, and despite this was still in horrible pain most of the time. She would wind up in ER in the first day of almost every period her cramps were so horrible. She was really reluctant to give up her Oxycodone after the surgery now because she told me, “At least I know I can get to work most of the time”. She was really scared that if she went off it that the surgery really had not helped and she read all these horror stories and she did not know what to do. Sex with her husband, forget it. It was just too painful. Exercise that she had always loved to do, not any more. And enjoying her life a few days each month she would tell me right after her period ended and before she would start ovulating, which I am sure is similar to a lot of women’s experience. She had the surgery and again she was still terrified to give up these medications even though she would tell me every week that had passed since the surgery she was actually feeling better. The trust between us enabled her to give up her Oxycodone. She started coming in bi-weekly and then once a week for acupuncture, which I do. We started slowly tapering off her Oxycodone until she was totally drug free. Her life now? I cannot remember the last time she made a trip to the ER, certainly before I started seeing her. She is handling even more stress but I cannot remember a day that she has taken off since the surgery because of her pain. She is back to living a normal life, whatever that is in New York.
I would be happy to answer any of your questions at the end of this talk or if you want to come up to me afterwards. Thank you.
Dr. Karlene ChinQuee: Thank you very much Dr. Kesselman. I would like to move on to our second speaker, Dr. Deborah Coady. She is a distinguished board certified OBGYN in private practice at Soho OBGYN in New York City and a clinical assistant professor at NYU Langone Medical Center. She is a recognized specialist in vulva, pelvic and sexual pain and has recently co-authored, “Healing Painful Sex: A Woman’s Guide to Confronting, Diagnosing and Treating Sexual Pain” – Dr. Coady.
Dr. Deborah Coady: Thank you, I am really happy to be here. My talk will just be a short one. I made up some slides because I thought it might help organize and actually get our audience more involved in this discussion that we would like to have. And to bring up some of the things that all of us who take care of patients with pelvic pain, endometriosis or otherwise see as some of the main concerns of our patients.
I kind of considered these like the top six issues mostly that would occur after adequate treatment for endometriosis. I will go over them step by step so everybody can think about what questions they might have on this topic. The first one that I as a gynecologist and taking care of patients with pain think about all the time and has been brought up by Dr. Chung and other speakers today is if somebody still has pain after surgery, what are we missing? We know…those of us who take care of any kind of chronic pain that our nervous system, our endocrine, immune systems are very interdependent upon each other and highly correlated so that it is really common if you have pain in one organ that you will get pain in others. And the central nervous system gets very dysregulated with chronic pain and these imbalances can really affect the other systems. We are just learning about a lot of these. We are learning about the immune system and inflammation and pain. I think obtaining a complete diagnosis is very important. Of course it is important before surgery but sometimes it is not possible to treat everything at the same time and if a woman has severe endometriosis we definitely want to get that handled and excised as quickly as we can. Afterward we still have to keep our eyes open for the fact that some of these other common pelvic pain conditions are often present in women with endometriosis so that if you have any questions about these things today too these are the top ten or so: painful bladder syndrome, bowel problems we talked about this, chronic vulvar pain is actually very common with endometriosis and it is related often to the pelvic floor dysfunction. We see a lot of women with fibromyalgia and TMJ, chronic headaches and chronic fatigue syndrome and now we are really looking into the autoimmune disorders too.
The second thing that we really try to handle is what Dr. Kesselman is working on very well with patients is the fact that so many women are on either opioids, and after surgery may remain on those, and almost everybody with endometriosis is treated hormonally in some way; either with the oral contraceptive, or progestins or Lupron, one of the GnRH agonists. So managing the side effects is very important. We have all seen patients who come from none of the doctors here but from people who have operated on their endometriosis and put them on Lupron and not added back therapy. The symptoms can be pretty awful. With estrogen loss we know that there are lots of very troubling symptoms, and testosterone loss also when the ovaries are suppressed so profoundly with the GnRH agonist. It is definitely going to add to quality of life problems. Sleeping problems, a lot of my patients say, “The only time I’m out of pain is when I’m asleep” and if they cannot sleep it is horrible too. Then the cognitive problems that come from both the lack of sleep, side effects from medications, anti-cholinergics that they might be on. All of these things can lead to a real decline in their physical fitness, so both before the surgery and the afterward that is our goal, is to really become strong again. Dr. Kesselman mentioned a bit about the withdrawal and discontinuation syndromes that we see often in our patients.
The next overall concern that a lot of patients have is that they feel weak; they feel that their whole pelvic girdle is not normal after their endometriosis treatment. It makes sense that the pelvic floor is going to be affected by endometriosis. I just put this slide in to show that sitting right above all these muscles here where the endometriosis was, so you know there are a lot of ways that the pelvic floor is affected both reflexively because the pain causes clenching. Also we think now that there is like a direct effect of endometriosis on the lymphatics, nerves and the blood supply that goes through the pelvic floor and the connective tissues, the fascia. The endometriosis does not just end in that rectovaginal septum, once it is removed all those tissues have to be restored back to health. That is where the mainstay of treatment and pelvic floor physical therapy comes in. I will not mention everything because we have three great pelvic floor physical therapists here and you can direct questions about the types of things they can help with to them in a minute.
I mentioned about chronic pain and how the central nervous system effect is so prominent in anybody who has had chronic pain and for a lot of our patients it really does take time. You need to be reassured that even though their endometriosis is gone it may still take time for their central nervous system to stabilize and normalize and that they have to be patient with themselves. There are a lot of modalities mentioned here that can really help, including medications, but we certainly would rather use the natural treatments if we can.
And then sex life. I should maybe have put this back at the top of the list but this is so important for women that may not have been able to have sexual activity for a long period of time because of their pain. It is not so easy to just snap your fingers and say, “Okay you’re better now, go for it!” There are a lot of things that after surgery may inhibit and really impact upon women’s sexual lives, especially hormonally. There is a good study that just came out I wanted to mention in the Green Journal OBGYN about the benefit of using Mirena IUD instead of some of the really profoundly depleting medications. We are coming up with more ideas of how to keep endometriosis away without everybody having to be on Lupron. Treating the sexual pain is very important and it could be not from endometriosis but from atrophy from the hormone problems, from the medication. Just getting women to have fun and enjoy their life again, and eat right and exercise. We talk about lubricants being very important, using sex toys like vibrators, physical therapy can help with sexual problems too by loosening up connective tissues that might be causing pain. Women need to talk about it.
Counseling can be very important. In my practice I find that most women who have suffered from chronic pelvic pain will benefit from counseling and psychotherapy. It is just a very different, distressing, isolating and intimate problem that sometimes it is very hard to talk about with certainly even a partner, if you are partnered. Do not ever hesitate to get help to cope with problems caused by chronic pelvic pain.
On treating residual pain I think Dr. Kesselman focused on that a bit but as I said we want to make sure that there are not other pain generators that have not been treated. So thinking bigger, not assuming that everything is endometriosis that hurts, looking for other problems and treatment plans if a patient flares. Just like what Dr. Kesselman said, instead of just waiting for a flare, waiting for a problem, be proactive and plan out what can be done. And keep re-evaluating. If you have a pain maybe it is the chronic constipation that is really pressing on your pelvis or maybe it is pelvic floor nerves, and of course, expert pain management is important. Here are some resources for the patients aside from the Endometriosis Foundation. Thank you very much. Hopefully any questions we will all be able to help you.
Dr. Karlene ChinQuee: Thank you Dr. Coady. I think you made a very good point when you talked about the pelvic pain and sex because that is an intimate part of a relationship and I am sure that that is something very important for patients to resume in terms of normalcy. For many patients with endometriosis that pelvic pain and painful sex a pelvic floor physical therapist can be an integral part in resolving the pain and it is common after months and years of being in pain to develop spasms of the pelvic muscle floor. I think I want to take this time, we do have three physical therapists on the panel and I want to go ahead and quickly, I am going to ask them just by show of hands because you may not be able to see their tags, but I want to introduce you to the five panelists. They are wonderful.
Dr. Dena Harris is a board certified OBGYN in private practice at Soho OBGYN in NYC in New York City. She cofounded this with Dr. Coady. She is a clinical assistant professor at NYU Langone Medical Center. She is a clinical assistant professor at New York Medical College. She is a Fellow of the International Society for the study of vulva vaginal disease. She is a vulva, pelvic and sexual pain specialist and currently has a special interest in medical causes of pelvic pain.
Sallie Sarrel, received her doctorate of physical therapy from UMDNJ, additionally she has a Masters of Education from the University of Vermont with a dual focus in sports medicine and nutrition education. Sallie’s work in women’s health is driven by her own battles with pelvic pain and endometriosis. She lectures on gynopathology at UMDNJ.
Nancy Fish is a psychotherapist who specializes in treating individuals and couples who are affected by pelvic and sexual pain. She holds two masters degrees, one in social work and one in public health from Columbia University. She and Dr. Coady coauthored the book “Healing Painful Sex, a Woman’s Guide to Confronting, Diagnosing and Treating Sexual Pain”.
Amy Stein is the founder and premier practitioner of Beyond Basics Physical Therapy in New York City, specializing in pelvic floor dysfunction, pelvic pain and manual therapy for men, women and children. Amy is a well recognized expert in her field and is the author of the book “Healing Pelvic Pain”.
Stacey Futterman, received her master’s degree in physical therapy from Nova Southeastern University in south Florida. She began her career specializing in pelvic dysfunction. She founded Five Point Physical Therapy, a physical therapy clinic in New York City dedicated to compassionate and effective pelvic and hip care. She is a frequent speaker and panelist for the industry.
What I would like to do actually is to have one of my physical therapists or all address that pelvic pain and painful sex, now that the surgery is done what can you help them with? Sallie do you want to start?
Sallie Sarrel: I think one of the things that happens with endometriosis, I would say two things to be begin with; one is that, and I believe we said this a little bit in the Life Script article last week, is that if everything that has always come towards your pelvis has created a concept of pain that is going to be in my pelvis when this happens, you have to sort of reset that thinking. That is something that goes on after surgery and sometimes it is helpful. You know physical therapists are able to work with you manually to introduce, not positive meaning…positive sexually positive but to introduce something that creates a positive awareness with you and your pelvis. One of the other things that we do is typically in the endometriosis patient the muscles that Dr. Coady had on the screen, or the pelvic floor muscles, they assume an over contracted state. After endometriosis surgery we have removed all of the endometriosis, and hopefully we have removed the cause of why you are over contracting so you brace because of pain. But what we have not done in surgery is actually help you release that spasm. Sometimes physical therapy is needed to release the pelvic floor spasms, to strengthen where it is weak because it has been in a contracted state for so long. If I walked around like this for so long and all of a sudden I was able to do this, my muscles would be very weak and that would contribute to pain as well.
Amy Stein: Another thing with physical therapy that becomes confusing is that the muscles and the tissues surround the bladder, the bowel and in women the vaginal area, in men the prostate area. A lot of our patients that we see come in with urinary, bowel and/or sexual dysfunction and pain. We as physical therapists we can treat any musculoskeletal causes of this particular pelvic pain and any signs and symptoms that are present with the urinary, bowel and sexual dysfunction that is occurring in the musculature, in the skeleton and surrounding areas.
Stacey Futterman: I think just adding on to that too, orthopedics really got it right post surgery. They sent patients to physical therapy pre-surgical and then post-surgical. Even with just a laparoscopic surgery what happens afterward, especially with these patients, is that they become so weak, especially in their abdomen, their core, they become constipated. Things are not moving as well. With physical therapy, just our soft tissue techniques, we know can calm down the nervous system, increase that autonomic nervous system. Patients start to feel better, their abdomen is not as tender and then we can start to strengthen because a lot of the times these patients are just afraid of exercise, completely afraid of exercise. But here in New York City you have to walk up three flights of subway stairs and if you do not have an abdomen that is actually turning on and working, you are going to get all sorts of pain and complications from this, along with pelvic pain.
Dr. Karlene ChinQuee: Dr. Harris, I know that this is one of your specialties as well would you like to weigh in on that for us?
Dr. Dena Harris: One of the things that I have been working with more recently is the idea that pain after you have had the surgery and you might not still be feeling better, even after physical therapy, is that there might be more going on in the body that is actually causing the pain than the endometriosis. Sometimes I tell people it is a perfect storm of all sorts of problems. The endometriosis causing part of it, the pelvic floor causing another part, psychological aspects of it but also there may be some medical components that we might be ignoring. Recently I have been looking more at of some of the rheumatologic causes of pelvic pain and have been finding some patients, a very small sample so it has not been studied appropriately yet, but getting better on some of the drugs like Plaquinol of Enbrel. These are rheumatologic drugs that actually might be helping pelvic pain. We are looking at that right now. Other causes, which I am finding interesting, are seeing some people with chronic Lymes; now that is a very hard diagnosis to make, not even sure it is Lymes but getting better with some antibiotics. There might be other things going on that we are not looking at that need to be looked at if you are not getting better.
Dr. Karlene ChinQuee: That is an excellent point because I definitely think this is a multi-system disease and I think you have to think outside the box and I thank you for that. I do want to have you hear one more of our panelists and then I want to open this up to the audience so that we have adequate time to have some questions.
I know that the notion of effect of severe endometriosis can be almost as devastating as the pain and it affects marriages, it affects the work. The Endometriosis Association quoted 84 percent of patients reported feeling depressed during the periods of pain. Seventy-five percent of them felt irritable and over half reported feelings of anxiety and anger. I would like to ask Nancy Fish, our psychotherapist on the panel to just weigh in on that for us please.
Nancy Fish: As far as sexual pain I deal with a lot of different kinds of illness and chronic pain and I think sexual pain is one of the most devastating forms of illness that I have to deal with. It affects every aspect of your life. One of the hardest parts is that women often feel devalued by the medical establishment because they are perceived as crazy or psychologically impaired where most of the psychological or emotional effects are a result of the pain. If you walk around with chronic pain all the time in your sexual or genital area of course you are going to feel depressed. Of course you are going to feel anxious, most women end up feeling like freaks or damaged goods. These are the words that women use. They feel very unattractive. They walk into a room and you could have the most professional woman walk into a room feeling really like a piece of garbage because of the kind of pain that she is suffering. It is important for people to understand that when you have depression and anxiety, often suicidal thinking, it is a normal reaction to a very abnormal situation. I think people really need to understand that. When I tell patients that and validate their feelings, it really is very comforting for them, so they do not feel like they are going crazy. Medical professionals really need to understand that when they might come across hysterical, needy women, they are not. I deal with very high-powered, high-functioning women that of course become needy because when you are in that kind of intense pain that is just a normal reaction.
The good news is that you can…the goal is always to minimize the pain and for not everybody the pain will go away but the goal is to constantly get the pain level down. But the good news is that people can start to feel better even while they are in pain. What I try to do is help individuals and couples often redefine sexuality. For example, sexual intercourse is not the only way to achieve intimacy in their relationship. Of course sexual intercourse is definitely the goal of most patients. But, if you cannot do it, there are often ways of, there are always ways of regaining intimacy with your partner.
Now I know that for many people your libido is way down suffering from pain and the partner’s libido is also way down. It is sort of a protective mechanism when you cannot have sex you shut your libido down. I tell people that they need to have a lot of patience. I also give them a lot of credit, they have to be superwomen and that is what they are really being asked to do by all of us, all professionals, so they need to be given a lot of credit for that. They need a lot of support and that really is the truth. They also need to understand that their sexuality is not defined by their organs but it is defined by their intelligence, their attractiveness, their sense of humor. When they can start to look at themselves as sexual beings in that way, they can start to feel better about themselves. It can also help with their partners and talking with partners and being open and honest on both levels is really essential.
Dr. Karlene ChinQuee: Nancy, thank you very much. I think I want to open this up because I am sure that we have some questions from the audience. If we could get a mic to…thank you we have someone, I think that is Melanie? Can someone get a mic to Melanie please? Melanie please stand up so we can see you.
Melanie: I just had a brief question with piriformis syndrome. Has that been seen to be linked to endometriosis? And if so, what treatments are available for that?
Dr. Karlene ChinQuee: This is open to the panel.
Stacey Futterman: I have not read any research that links piriformis syndrome to endometriosis but if you have someone that had numerous abdominal surgeries with a weakness in the core, other muscles are going to start to take over and that can sometimes cause a dysfunction within the SI joint within the lumbar spine and then that can lead to the “piriformis syndrome” or the over activity of the piriformis. As much as it has not been shown in the research to be linked to endometriosis we know that weakness can actually – weakness somewhere in the pelvis – can actually cause piriformis syndrome.
Sallie Sarrel: Actually, the way that the rectovaginal deposits it, if you have present rectovaginal disease or disease in the cul-de-sac, or any other endometriosis you can get almost a mock piriformis syndrome that is being kicked up by the endometriosis itself. What happens is you need to have the endometriosis completely excised and then because it has been almost a mock piriformis syndrome you then have to have piriformis and the rest of the gluteals retrained so that the brain can re-recognize how the muscles themselves should be firing. If you do not do both of those components then you will continue to exacerbate this mock piriformis syndrome. But it is one of the most common symptoms that I get coming into my office and coming into a lot of the gynecologists, “I cannot sit down”. I remember a patient that screamed at me “I waited 15 minutes in your office I cannot sit and I cannot move and I feel my piriformis is always tight” and most of that is kicked up from the endometriosis that does sit within the cul-de-sac. Now we are finding more and more endometriosis on the pelvic nerve plexus itself.
Dr. Karlene ChinQuee: I would like to go to Dr. Maurice Chung.
Dr. Maurice Chung: That is a very good question. Does it affect the piriformis muscle? The endometriosis in the pelvis affects the entire pelvic nerve. The pelvic nerve, especially the S2, 3 and 4 which is condensed in the pudendal nerve, then the pudendal nerve crosses on the top of the piriformis muscles into the sciatic notch and comes out under the iscshial spine. Just think about that. If the endometriosis in the pelvis affects the branch of the pudendal nerve and it crosses over the muscles and how are all these nerves in the surrounding area affecting the muscles? It causes muscle spasm. Lo and behold if you do piriformis release, PT, give a pudendal block and put them on neurolytic, that helps to resolve the majority of the problem.
Dr. Donna Kesselman: Can I just add something? I have a colleague that I will send patients to for a pudendal nerve block and you are correct. It actually gives them quite a bit of relief, and sometimes permanently, because I think we all tend to tense up and get used to being in a certain position and the muscles and the nerves relax and it gives you a chance to heal.
Dr. Deborah Coady: I agree.
Amy Stein: I have also seen a lot of misdiagnosis with piriformis syndrome where it is actually some of the other pelvic floor muscles. So that is important, to get a proper diagnosis and a physical therapist can tell you whether the piriformis is the cause or a problem that is contributing to your pain.
Stacey Futterman: And just to add on that as well, along with the piriformis the pudendal actually goes over the obturator internus as well, which patients will think that their piriformis is in one place and it is actually that obturator internus muscle. It is kind of like, which comes first, the chicken or the egg? Is it the nerve that is actually irritated by the obturator internus muscle or vice versa? Again, like Amy said, getting a specific diagnosis - is this actually piriformis syndrome or is it just an overall pelvic floor dysfunction?
Dr. Karlene ChinQuee: I have a question for Dr. Maurice Chung – Dr. Seckin, of course you can have a question!
Dr. Tamer Seckin: Thank you very much. First of all I am so happy to see you smiling too. My area, as you know, of interest is surgery. My biggest challenge is the patient who comes back after surgery with pain or some other doctor’s surgery, they come to me for pain. First of all, I am more challenged with my own cases that come with pain because I really try to do my best even at the end of three hours of surgery. If I discover something I am willing to stay another three hours there. The question becomes when you see these patients after surgery, I am sure all of you, how deep or how well do you think you are scrutinizing the surgery that was done to them? The bottom line is I personally think, even with my cases, when the pain comes back or the pain is not well managed, I always consider incomplete surgery in my own cases – self critical. I have found more pathology. Deep pathology and deep, deep I showed a video the other day of the areas that I never thought it would be. Even a simple superficial lesion you clean, there could be some deeper pathology. We have seen this. I want you to be aware of the fact that sometimes there is still pathology that could be treated in many patients that continue to come to you. Do you question that also? Is this something that you guys consider?
Sallie Sarrel: I think as physical therapists we do consider is there a pathology? I know in my practice I have a very strong referral system for who I work with as the gynecologist. But one thing that I can say for the patients that come post excision surgery with somebody who we know is good, is physical therapy can help rule in what is pelvic pain and rule out possibly what needs to be looked at surgically. It is that patient, if you are treating them, knowing what the surgical report looks like. Some of us have had the opportunity to view their video and what not. You see what could be and what could not be and to rule in something as referred pain, something as weakness versus disease. Now, that said, it does happen that you send them out and they are going through a second surgery and you think there is going to be nothing there, and they come back with a massive four hour surgery.
Dr. Karlene ChinQuee: I have a question for Dr. Chung. Dr. Reich do you have a question?
Dr. Donna Kesselman: Can I just respond one more thing to Dr. Seckin? I work with Dr. Seckin’s patients a lot. I think what is very important among the physicians is to make sure you have a good working relationship; that you are in contact with each other and that you know what the etiology of the pain is, rather than just keep going on treating it. And to make sure you coordinate it, send the patients back for additional follow up if you are concerned about that.
Dr. Reich: I just like to give you all something to think about. Much of what you are dealing with is in the Lupron era. I have very little experience with Lupron because I have a little experience with Danazol from before but…product of having been doing this for a long time. But I try to simplify what we are talking about with endometriosis especially and I do not think it is as complex as we sometimes make it out. It is the rare, less than one percent that it is really a complex situation. In most situations cul-de-sac endometriosis is the key and excision should be relatively straight forward because with our probes in the vagina when we operate and probes in the rectum we see all these things so well that I think complete excision is something that you could do in most cases. Right, would you agree? (Yes – Dr. Seckin). Again, the thing that I would like you to take home for you to think about is this concept with the Lupron era. I think some of these situations with the way you feel… In my experience most of the time you can take a patient who has cul-de-sac disease in the recovery room and they feel better if that disease has been removed. That has been my experience.
Dr. Karlene ChinQuee: Dr. Chung could you follow up on that for me because I think something that you said yesterday in one of your sessions was that there is a percentage of patients post op that in your hands that maybe they do not necessarily have to immediately back to the operating room? Could you speak to that for us? With your injections and your bladder rinses and maybe you could just – for the audience today.
Dr. Chung: Okay, with endometriosis the basic science study they show when you implant endometriosis in mice, in their peritoneum and they develop urinary symptoms, like interstitial cystitis, there is a component of nerve component on the bladder. With that, just like the human being when we talk about endometriosis and IC symptoms, with that part of the IC pain could well be the pain of what patients are feeling. In the same token patients with interstitial cystitis, one of the symptoms is painful intercourse, bad periods, pain after sex, pelvic tension and myofascial syndrome. What I do is before I even do surgery I want to knock out that pain generator, which is the IC component. Well, if the patient is better then it depends on what she wants, whether she needs surgery or not. If she is going to go through surgery then post-operatively the pain should be less because she has knocked out one pain generator. Then you go do excisional surgery and you take care of it.
Now the pudendal block is just a simple injection. I think any of the gynecologists, I am not quite sure the newer generation knows how to do the block, because of the epidural anesthesia. So, the block – you block it, the pain goes away, does not come back. We know that the pudendal nerves are involved on both sides. For those patients some of those the pain is gone for years and years. I do not even bother to take them into surgery, especially for those who have done multiple surgeries. But as I said, if you really have to go and get a good surgery, then you do a good one. Just like Dr. Reich and Dr. Seckin said, excisional surgery, after you have done with it, the pain should be gone. But, if it is not, then it is something else.
Dr. Karlene ChinQuee: Thank you very much. I would like to open it up to the audience.
We just have about three or four more minutes left, so we will just keep the question/answer brief.
Audience Member: I just have a question for the P/T panel and Sallie in particular. As women’s health P/Ts, and especially someone who has experience in dealing with endometriosis, is there anything within the P/T repertoire that you say “absolutely not” for endometriosis patients? I have gone to a P/T back home where I live and was not very familiar with endometriosis. I was trying to coach her on what works and what does not, but what would you recommend?
Sallie Sarrel: I have some very strong opinions. When I have to go to these courses to get certified and all this I have to try it out on my own pelvis as do the other P/Ts in the room. I would not say completely rigidly I would never, but it would be extremely unlikely in my practice for me to ever use a dilator with a patient with endometriosis because of the issues that may or may not be present with the cul-de-sac. The other thing is I am very unlikely in my practice to use internal ___ because if you hit a nodule with the ___ it is incredibly, incredibly painful and one of the most humiliating experiences you could ever have in your life.
Amy Stein: With regard to just general activity you really should try to see what – everyone is so different that you have to try to see what works for you, whatever you find that works for you, keep doing it. Things that make your pain a lot worse try to limit or prevent.
Dr. Karlene ChinQuee: We have another question from the audience.
Audience Member: When dealing with IC and endo, you take care of the endo and you are post surgery. Then I know that many people have very bad IC flares after the surgery even though if they took care of it prior to surgery. So how effective is P/T post endo surgery due to pelvic pain, which came from an IC flare?
Amy Stein: It can be very effective if again, if there is any musculoskeletal involvement and any nerve irritation, any muscle spasms, it can be extremely effective. With some people you have to go very slow with the physical therapy. Some people can tolerate more of the manual therapy internal and external work but it is really dependent.
Audience Member: Is that like in conjunction with the diet, with ___ or is it just P/T that can be effective?
Dr. Karlene ChinQuee: After this answer that will be the last question. I think we have to wrap up our session. I want to thank everybody on the panel and our speakers. It is quite an excellent topic as you can see and we wanted to get everyone heard. I hope that answered a few questions for you. The panelists will be around, the speakers will be around so you can always go up to them and ask them questions. Thank you very much.
Endometriosis Foundation of America