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Amy Stein, DPT, BCB-PMD - The Essential Role of Physical Therapy in Decreasing Pain and Inflammation



Patient Awareness Day 2019: HEALTHY MIND & HAPPY PELVIS
Living Your Best Life With Endo
March 10, 2019 (8am - 5pm)
Einhorn Auditorium, Lenox Hill Hospital, New York City

Hi everyone. Why don't we all take some deep, slow breaths in through the nose. This is one of the first things I teach my patients. Expand at your ribs and exhale even slower than the inhale. When you do that inhale and exhale, also expand the belly. Try to relax the pelvic floor. Try to let your mind just relax. Which is a hard thing for everyone, most people.

Stand by. Okay, we're gonna stand by. I can keep talking though, but ... Okay.

I'm a physical therapist, I specialize in pelvic health for almost two decades, now, and I've seen a lot of endometrioses sufferers. It's extremely rewarding as a physical therapist to be able to help this patient population. I've learned the most from my patients, they really teach me what I should do, what i shouldn't do, because there are situations where you do have a flare with even an exercise, a new exercise that we teach, even practicing the deep breathing, or any physical therapy technique.

The goal is to keep going, keep moving. One of the biggest things I also teach, besides the deep breathing and relaxation is to keep moving. You want to keep moving, even if you can only do five minutes a day, but five minutes two to three times a day.

Is that working? Yes.

That's me, but you already said who I am. I do have a book, Heal Pelvic Pain, which is a self help book. Speaking of trying to spread awareness, we're trying to spread awareness. Dr. Iris Orbock and I have a book, Beating Endo, which is coming out in June. I know [inaudible 00:02:20] also has a book on Endo. We're trying to spread the word, we really are, it's just it's hard when a lot of this, the research now, is also new.

Some general things that I hear are, "Why do I have pain all the time?" That's just a general question. And then also post excision surgery, or oblation, "Why am I still in pain?" And commonly, what I find is that the musculoskeletal system is a part of that continued pain. Or, I think, as Dr. Benewine said, the brain and the central nervous system respond slower. Desensitizing, down regulating, turning the pain dial down is key to a successful rehab.

The musculoskeletal system should be addressed before any surgery, but also after surgery. Again, you need to dial down your pain levels, the various things that could be going on. You also need to address bladder, bowel, sexual function, and any other pain that you're experiencing. And yes, it is a process, but I've seen a lot of success with patients that go through the whole program, which is basically addressing diet, mind/body, environmental factors, as well as the musculoskeletal system.

In the end, which is what my talk is basically about, is those things can help decrease the pain and inflammation. Doing the things helps decrease the inflammation as well as ... And then as a result, the pain can go down.

Pelvic floor physical therapy has been proven effective for patients with endometrioses, with or without surgery, through what they've found in a couple studies, is that it can help with urinary, bowel, urgency, frequency, retention, nighttime frequency, sexual health, and improvement in general quality of life.

Just a little explanation of the pelvic floor muscles, but again, it isn't just the pelvic floor. It is the abdominal region which is, you can see, that's only part of the abdominal region to the right here, and there's a lot of stuff going on in there, muscles, various ligaments. Then the pelvic floor does play a big role in endometrioses, but you are correct, it is from diaphragm or even further up, all the way down. We look at the body from head to toe.

The pelvic floor muscles, just a quick anatomy lesson, they connect from the pubic bone in the front to the tail bone in the back, and they surround the urethra, urinary bladder, and well as the anal/rectal area and the genital region. If there is disfunction in the muscle, or the tendons, or the ligaments, it can cause bladder, bowel, sexual disfunction because of where those muscles are.

The normal function of the pelvic floor is its supportive in nature, meaning it supports the entire abdominal pelvic region. Sphincteric, meaning that it helps with continence, bowel and bladder. The muscles help with sexual arousal and performance, as well as stabilize the core.

Again, disfunction can result in bladder, bowel, sexual disfunction, and/or abdominal pelvic pain.

Then there's two categories, which I always find that I have to present this. I think the word is getting gotu there more that kegels are not the answer for overactive pelvic floor and any abdominal trigger points. What we find with endometrioses is that typically the muscles are overactive, they're high tone, there's tenderness in the muscles. Underactive is when you have leaking, and sometimes we do find that in conjunction, but that steps comes later, where you do strengthening exercises. That's the third stage, typically, of physical therapy.

These are just some of the conditions that we mention, and the sexual health therapists earlier mentioned a bunch of these conditions, the Vulvodynia, the Dyspareunia, these are all conditions that we find with the overactive pelvic floor, as well as the bowel issues, the bladder issues, interstitial cystitis.

Just examples of myofascial trigger points, these are only two pictures, there are tons of other pictures, but these are two common areas of pain in Endometrioses patients. You can see the one to the left, those are areas of trigger points. What we find is that when we palpate the iliopsoas muscle, which is that muscle, or hip flexor muscle, it reproduces their ovarian pain or their uterine pain. It's really important to differentially diagnose, and that's where a pelvic floor physical therapist comes in, or someone like Allison Chercondae, that's a physiatrist who specialize in physical medicine. That's where we come in to help with those specific signs and symptoms.

To the right, those are the pelvic floor muscles themselves, and that's where it can refer down the leg into the sacrum area, into the tailbone area. This is another picture showing nerve restrictions. Actually, on the left, those are common incisional sites that happen with any type of abdominal pelvic surgery. If you could see in the middle, those are the nevers that come out, that innervate the leg, the pelvic floor area. If there's an incision site that irritated the nerve, then that's where we come into play. And, again, Dr. Chercondae and a Physiatrist come to play, because they try to calm any nerve irritation down. Then you can see, on the right, all those nevers, which is a lot of nerves I'm not gonna go through each one, because that's a day lecture in itself. Those nerves innervate the pelvic floor area, so if you have pain down the leg, into the pelvic floor, it's really important to try, again, that differential diagnosis.

Addressing the back, that SI join, the hip, the abdominal wall itself. These are all things that physical therapists will look at, because it's really important to, again, look at the whole body.

Then it's just breaking that vicious cycle. Whatever the onset is, addressing that, addressing the inflammation, the scar tissue that could occur, that alone could decrease the ability of tissue, muscles, nerves, and organs and can cause even more pain and potentially weakness as well. And it can also cause emotion and distress. Really addressing the whole cycle is important.

As a PT, we look at what I mentioned before, from head to toe, posture, alignment, scar mobility, manual therapy. We look at strength and range of motion, movement patterns, and we also do a functional assessment to see how you're functioning just in your daily routine. As PTs, we try to help with all of the above.

The manual therapy is key, especially for endometrioses, because we really need to look at all the muscles and tissues surrounding the whole abdominal pelvic area, including the legs in the back, the super official pelvic floor, the internal, vaginal, and rectal, if the patient can tolerate it, and I know patients get a bit nervous about that, but as an experienced pelvic floor physical therapist, I can gauge, and I work with the patient on what to do, what not to do. There's so much to do externally to help down regulate the pain that we ... I've started with many patients there before even assessing the pelvic floor muscles internally.

Another thing we educate patients on is the use of wands, again, to patient comfort. I'm very systematic of having the patient do their home program. I start with one are to work on, and they come back the next week, I make sure that it's still okay, then we add another area, whether it's their own trigger point released, certain stretches, and eventually some strengthening that is typically needed with everyone.

In addition, we do neural and visceral mobilization, so actually trying to make sure that the organs are moving. They're supposed to move. They're supposed to expand and relax most of the organs, and we help to make sure that's happening, as well as if there's any inflammation in the area. We can help with abdominal pelvic inflammation. There are Lymphedema therapists as well that help with lower extremity, upper extremity, abdominal pelvic inflammation.

This is a video I wanted to show, just to give you an example of what ... There's no sound, so I'm gonna speak over the sound, but just to give you an example of what the PT entails, because I think that people get really nervous about PT, that they're gonna flair afterwards. You can see, I'm working very gently. I'm talking to the patient, I'm making sure she's feeling okay, I'm assessing the various layers of the tissue, and then you can also go into assessing the deeper muscles, if the patient can tolerate it. That's me assessing the hip flexors. As well, here I'm assessing the diaphragm of this patient.

Really looking, again, at the whole trunk. Somewhere in this video is showing me working on the uterus, and the bladder, and the rectum, to make sure that those tissues are moving well as well. And then, giving the patient their home program-

Oops, same one. Here we go.

-is essential. I find that if a patient isn't doing their home program, that I'm not helping as much as I should be. From the first day, maybe it's just deep breathing and relaxation techniques, but giving the patient tools to do at home is essential. Here I'm going over abdominal massage for constipation and diarrhea. It could be very gentle. It's basically massaging the colon to help move things along, to help relax the bowel, the GI track. It's in my book, I don't have enough time to explain it today, but you can also google it, I'm sure there's probably a YouTube about it. I think I may have done a YouTube, I'm not even sure, but it's basically called the ILU massage, because you're massaging your colon.

I'm teaching her how to use it, and then you can see that pink ball in her right hand, I'm also teaching her how to do some massage techniques on her own.

Oops. Oh no. Uh oh. Sorry, that just went blank. Hold on. You guys get to see all of my folders. Sorry about that, not sure what happened.

Hopefully that was helpful, just to even show you how much you can do on your own. In addition to that, we also work on down training the pelvic floor muscles, down training the abdominal wall. Basically working on the relaxation techniques that I mentioned, and I know there's some yoga physical therapists here that are gonna show some demonstrations of some things that you can do on your own. Then, we advise the patient on no straining and, again, no kegels if it's an overactive or a high, tense pelvic floor.

We also give the patients stretches to do at home, whether ether's tightness in the hips or back, whether there's alignment issues, posture issues. Toileting techniques is key, as well, so using something like the Squatty Potty to help relax the pelvic floor even more. We work with patients on sexual positions to help to minimize pain, if they have back pain, hip pain, if they have the deep penetrative pain, we can work with them on that and what positions are ideal for those, as well as pain free strengthening. Making sure that if there is an abdominal separation, if there's trigger points, we're addressing that first, and then adding gentle strengthening exercises. But you see, at the bottom I write, "requires close monitoring," because it really does. We don't want you to be in pain, and we don't want you to feel discouraged from doing any exercise.

Then, eliminating poor bladder habits, not going to the bathroom just in case, not hovering over public toilets, because that actually tenses the muscles. Drinking enough water, and using a diet like the IC diet can be helpful for some patients. Also, working with the patient on retraining the bladder by delaying the urge, if they have a lot of urgency. Progressive time voiding. How I tell patients is, don't hold it in, but actually relax and breathe through it, and you may see that urgency could go away for five, ten minutes. That alone can be very helpful in down regulating the bladder, down regulating the bowel. All these things help with pain and inflammation.

I mentioned the squatty potty, relaxation training, the abdominal massage. I know this isn't that attractive, but making sure that your poop, I explain this to patients, I want your poop to be type four. Looking like a banana. If it's above, if it's one, two, or three, you're actually constipated, which most people don't know that. And then if it's five, six, seven, then there's diarrhea. Working with a nutritionist, a lot of PTs also will work in the beginning stages of a nutrition diet and then, if needed, refer out. Also, again, no straining with the bowel, because that aggravates the pelvic floor, and no breath holding.

Other behavioral modifications, using cushions if you have pain or discomfort sitting, whether it's in the back, or whether it's in the tailbone, or perineum, the pelvic floor. Getting cushions that help so that you're not constantly feeling that pain or constantly feeling discomfort, because that only up-regulates the system and keeps the pain cycle going.

Supportive belts if needed. I mentioned the sexual positions, using lubricants if there's any dryness or pain. Standing frequently, changing positions. I recommended a physio=ball, I recommend it commonly, but I recommended it recently to a patient and it took away their perineum pain, just that alone, with the massage that I gave the patient to do on their own.

And then, education is key. A lot of people think that sex, for some people, is painful. It's not. So really educating the patient is important. And again, doing some type of exercise, whether it's yoga, or walking, whatever works for you.

Home program, I mentioned, is essential. Using a wand, if you feel comfortable. Using the trigger point ball that I showed, a massage stick, doing stretches, taking a hot bath, or using an ice pack, as well as certain other ... Besides yoga, there's Chi Gung, there's Ti Chi, really figuring out with works best for you, so that you also stick to your program, because I can give patients tons of things to do, but I want them to stick to their program. I really try to find out what the patient wants to do, and feels good doing.

And then, if you have a flair, most physical therapists, pelvic floor physical therapists can tell you what to do at home to help decrease that flair. It is important to find a physical therapist that's trained in pelvic floor disfunction, pain, and endometriosis.

And then, just some key points, multidisciplinary approach is key. I can give relaxation exercises, but in the end I may refer to someone that does yoga or a sexual health councilor to help with mindfulness practices. Do note that not all healthcare providers know how to diagnose musculoskeletal issues causing abdominal pelvic floor disfunction. Also, it may not be a priority for your physician or healthcare provider. They want to make sure that you're clear from the surgery from Endometriosis, or they may want to make sure that you're on a certain medication. It may not be on their radar to refer for physical therapy. I even tell healthcare providers or physicians, if you're not sure if pelvic floor physical therapy will help, find one and have them assess to see if the patient would benefit from it.

Also, realize that bladder bowel sexual disfunction can require pelvic floor physical therapy. Treatment does take time. This is a common question I'm asked, "How long is it gonna take?" There's evidence showing that the average diagnosis for Endometriosis is 10 to 11 years, so realize that when you're going into physical therapy and have a home program, that it does take time, but I've seen it work. If you're compliant with the home program, if you're compliant with the physical therapy, any medical management that you're using, doing it all together also is key, again, to down regulate the system.

If you don't see improvement, though, with the physical therapy specifically, within six to eight weeks, then I tell the patient, or tell the audience, to go back to talk to your physical therapist first. Tell them that you're not experiencing any improvement, and when I say improvement, it could be that you're going to the bathroom less, I should say urinating less. You're not constipated anymore, or the constipation's improved. Your pain level has now gone from an eight to a six. Those are improvements. It may be small, but even knowing at six to eight weeks that something's happening is a good sign. If not, tell your physical therapist or go back to your physician for a second opinion.

Again, no kegels for the overactive pelvic floor. And do know that the physical therapist is trying to find where you're experiencing some of your symptoms and pain, so they may reproduce the pain initially. Shouldn't be a lot, but typically, if I find an area of pain, which is common, then I'll work on it slowly and gently, so hopefully they won't go home feeling any increase in symptoms, but knowing that next session we work on it again, and gradually those symptoms go away.

This is how you find a pelvic floor physical therapist. Herman and Wallace Institute, the American Physical Therapy Association, and then International Pelvic Pain Society. The International Pelvic Pain Society also has physicians and other healthcare providers on their provider list.

And thank you.

Dr. Redwide, I see you.

[inaudible 00:23:23] something else. What percent of patients that do not respond to physical therapy have persistent Endometriosis? The reason I ask that is one of my concerns is that doctors who are unable to treat endometriosis surgically very well, and who leave perhaps some persistent disease, may blame it on pelvic floor disfunction, in which case physical therapy may not have the desired effect. How many of those patients go back to surgery and have endometriosis? Do you have any idea what percent of failed patients have persistent endometriosis?

That's a hard question because there's various answers for that. One thing is that unfortunately, not all pelvic floor physical therapists are trained the same yet. Trying to find a pelvic floor physical therapist that has experience and then if that physical therapist isn't working for that patient, maybe finding another physical therapist. That's one answer.

We do find that if the patient has implants or endometriosis that's affecting their pain, that they do need to have excision surgery. For us, what I mentioned to the audience is that within six to eight weeks, they should feel some improvement. It may not be a lot. We also can't directly affect the endometriosis, but can affect the surrounding tissues. We can help to down regulate the system. We work with the patient and the physician on medical management, and then if they plateau or don't progress enough, then we'll refer back for surgery.

[inaudible 00:25:12]

Right, right. It's hard, because is it ... Well, the answer is that the muscles in the tissues should respond within the six to eight weeks, or they should start to, and then, within three to four months, if they're still in the same pain or the pain's pretty significant, then that's a good indication that it's more endometriosis.

Well, fair enough.

Just curious, are there practices in pelvic floor therapy, or I don't know which it really falls in, but you have some disagreements of utilizing ... For example, I don't get, for example, patient who get vaginal Botox injections, or vaginal Valium massages, things like that. I just don't understand the rationality of it. Nobody convinces me it really works. What's your ... Please train me on this. Do you have experience with those things?

With vaginal Valium?


Well, I won't refer it, but someone like Dr. Chacade would ...

What's your experience when you get feedback from patients who have been through those kind of treatments?

The Botox ... PT does is similar to what the Botox does. We typically ... If the patient is chronically-

What does Botox do?

Botox freezes the muscle.

What muscle?

The pelvic floor muscles. You can inject into the superficial muscles, the perineum. Some physicians, not many, will go inside-

What does freezing mean?

What does freezing-

Freezing muscle mean.

It stops the actin and myosin from contracting. It stops the contraction.

Paralyzes it.

Paralyzes the muscle. Thank you.

Well, when freezing means that I see that a contraction format. Paralyzing is relaxing format. I got it.

Does it work?

I've seen it work on patients that also are doing PT at the same time. I haven't seen as much success with just Botox alone. Because the Botox is paralyzing the muscle, so if the muscle shorten, but then the muscle just stays like that. The PT helps to lengthen the muscle, helps the gently stretch the muscle, so it gets it back to its proper position, and then they have the contract/relax when the Botox wears off. A lot of the patients, their muscles are shortened from chronic holding.

Your other question, do we argue? Yes.

Do you argue? Yeah.

I was just in Atlanta yesterday, at ISSWSH, The International Society of the Study of Women's Sexual Health. There's a bunch of studies on PT, which is great, but the PT in Brazil that presented, their treatment protocol is definitely different than ours. They also ... Yeah, we differ. They tend to do more strengthening, and I find that strengthening, when the muscles tighten and tense, doesn't help. It's like you have back pain, your back's in spasm, I'm not gonna tell you to go do dead lifts, because your back will go into more spasm.

As a PT, what we do, and similar to if you have a back spasm, we work on relaxing the muscle, lengthening the muscle, getting rid of that spasm before you go back to exercise.

I have a question. I have a loud mouth, so I'll [inaudible 00:28:55], here. My question is, endometriosis is something we've just begun, really, in the grand scheme of life to learn about. I've seen an increase in women over the age of 50 who may have endometriosis, but have never been diagnosed, as being post menopausal, or just never having had the opportunity of a doctor that they've ever been in contact with who understands what endo is. As a pelvic floor therapist, do you see an increase in back spasms, back pain as a result of pelvic floor disfunction in women over 50? Because, as a researcher, I look at correlations all day long, and what are the correlations that we haven't yet looked at? And what are things that we need to study so that we can further educate ourselves?

I guess my question is, in your population of clientele, or patients, do you see in women over 50 experiencing perhaps maybe less pain or pelvic floor disfunction in correlation with back pain that could be age related, or maybe from hormones?

Tough question, I know, but it's just interesting to be able-

Hormones is kind of a separate ...


That's a full day talk as well. But yes, we see with just endometriosis in general, commonly back pain. And then with patients that have had endometriosis or undiagnosed endometriosis in their 50s, maybe they have had implants that are affecting a nerve that was just never addressed. It's more that if they've had the disease, then it just wasn't addressed when they were younger. They could get the same symptoms.

Thank you.

They could get the pelvic pain, any vaginal pain, they could get bladder issues. If an implant also is scarring, too. PTs, not everyone, but it's just a well known thing that when a patient has orthopedic, any type of surgery, shoulder or knee, one of the first things they recommend to do is to go to your physical therapist, do the scar mobes, and start ranging the shoulder after shoulder surgery. It should be the same with any surgery. It should be the same with any abdominal pelvic surgery, so that these things can be avoided, as well as c-section scars, episiotomies, all of these things really within the first six to eight weeks. Once we get clearance from the physicians, but within the first six to eight weeks is ideally when we should see the patient, so that the scarring doesn't set it.

All right, thank you Dr. Stein. Or, one more question, sorry.

It's funny that you were mentioning that, because I'm in my 50s, I'm 56, and was diagnosed about 37 years old and I had more of a mild case of endometriosis, so they took out one ovary and ... I'd already had my children, so it wasn't related, nothing interfere with my infertility. But, it just continued to just get worse. By nature, I'm a tiny, tiny girl. A tiny waist, a 26 inch waist, I was very small, my hands are small, my feet are small, and it just got worse, and worse, and worse as I got older.

I actually came from upstate New York to come to this, I wanted to get here Friday but I was in too much pain, so I couldn't do it. But it's interesting that you say that, because up in Buffalo, where I'm from, this is like you're speaking a whole different language to me. This is not even touched on or talked about in any way. Any of these healing modalities, or even diagnoses, for growing all the way up to the diaphragm. It's astounding to me because I have gone to four OBGYNs in the last four and a half months and asked them.

In 2012, I was diagnosed with a very large fibroid, so I had an OBGYN who was willing ... Said we were gonna go in and get it, it's quite large, it was like the size of a grapefruit. When he opened me up, when I came out of surgery, and he also told my family, "I have never seen a case of endometriosis like this in my 30 years of surgery, nor have my colleagues." He said, "I've referred to Strong Memorial, you were completely covered. Your bowels were covered, your stomach was closed, your bowels were almost completely closed." He even said to my family when I was still coming out of the OR, off anesthesia, he said, "I cannot believe she was walking around the way she was." HE said, "I've never seen anything like it."

That was in 2012. I came home in a lot of pain because of the scraping that he described, hours, three, four extra hours on top of the surgery, of scraping my organs and all that, to try to clear as much of it as he could. I remember him saying to me, "I did the best I could. I got as much as I could. I'm sorry I had to cut you so wide," because he cut me from here to here. But not in a really understanding ... "I'm sorry I cut you so wide, I wanted to make the incision smaller." And I thought, "I don't care if you relieve my pain." It was the least of my worries.

But, since then, since 2012, it has gotten so ... And I cry every time I think about it. It's gotten so much worse, and I'm 56 years old. I had a full hysterectomy. When he did the surgery, he had to take everything out, give me the full hysterectomy.

To get a doctor upstate to believe that it is still endometriosis, and they say "We won't touch you." I say, "Will you please do an exploratory? Will you just send a little ... Make some small incisions, do a laparoscopic surgery on me?" "We won't touch you."

I've been to four OBGYNs, will not touch me. They don't understand. So what I did is I called Cleveland Clinic to see what their protocol is for someone my age in my condition. I called Yale Medical, and actually Dr. Taylor, who was speaking here on Friday, this was just last week, he actually was kind enough to call me back and listen to me for about an hour and a half, describe my symptoms. He said, "I want to see if there's one doctor who may work with me in Buffalo, if not, I want you to come to Yale and I will help you."

The pain is ... Right now I'm here, I'm visiting a friend, we're going to dinner. It's so hard for people to understand, they think I'm crazy. That's the diagnosis you get when there's no information. My doctors will say, "Oh, she's just hormonal. Oh, she's just depressed." It's not that. That's the furthest thing form my nature.

My recommendation would be to, and I hear you, because we hear this all the ...

Now I'm sitting here ... I'll get through it.

The protocol, and Dr. Chacande and I have worked closely on this, is a lot of what my talk was about, is really down regulating the system. That alone could help the symptoms significantly. If there's other issues going on that do need surgery, even down regulating the system first, before you have surgery, ends up with a more ideal outcome.

What do you mean by downgrading?

Down regulate the system, meaning address any bladder/bowel issues, going on an anti-inflammatory diet, which is hard, it's very hard.

I already live that way.


I just recently ... What I find, for me, is I don't drink, I don't smoke, I have pure water, I have a water system in my house. I have organic food. My cousin has a food business where organic meal prep. Almost everything I touch, or wash, or put in my body is organic and natural in every way. I try to avoid all environmental toxins, even the water.

Have you tried pelvic floor physical therapy or not?

I'm so terrified of any kind. My doctor, my primaries, even, said, "Why don't you try physical therapy?" And I said, "You move me in any way that I'm not used to moving, and you're creating more pain." Because my pain comes from here, it goes all the way to the back. It shoots down my legs, it goes into my feet, my hands, my neck. It's so systemic. My bowels are now ... I'm always constipated, that's just a given. But now it's come to a point where I know there's bladder involvement, because so little urine is coming out of me.

It's throughout my entire body, but to get a doctor to begin to even, first of all, take me seriously. They just say, "We can't help you." That's all they keep saying. I'm saying, "Do you expect me to live my life like this? I feel worse than when I was in labor with my second child." All the time, that's how I feel.

It's amazing to me to hear all these ... I'm astounded to hear what [crosstalk 00:38:04].

Well this has all been evolving. Everyone here that's commenting, "Why aren't we in different areas of the country?"

This must be very new?

Pelvic floor physical therapy, alone, it's about 30 years, but treating endometriosis, I would say is really ... I learned from my patients. I never took a course. I learned techniques from post graduate classes, but I was really learning with my patients, so I've had patients like you, and I've worked with them.

You have to start really slow. If you can find a physiatrist in your area, or even I know Beaumont Hospital helps with, if you have the head to toe pain, they have a whole abdominal pelvic pain program there. It's definitely a ...

I let it get so bad because there's no care for it there. Now when I sit in a chair my legs go numb, my hands are numb when I wake up. I know there's people, I heard those three women speaking, that's horrible what they've had to go through, and they're much younger than I am, but to be told ... The last OBGYN I saw, I said, "Am I supposed to live like this?" And he said, "Well, I know a lot of women that have pelvic pain and they cope very well."

The thing is that they just don't ... They're just not aware. We need to go there to speak to them.

Exactly, exactly. But, luckily, there is a silver lining, because Dr. Hugh Taylor's been so generous with me. I only started talking to him last week, and I did find an OBGYN in Buffalo, I said, "Would you be willing to talk to Dr. Taylor? There's modalities and things they're doing at Yale that you've never even ... He said, "I've never heard of that, I've never heard of that, but I would be open to it." It's just the tip of the iceberg.

But thank you, I appreciate it.

Endometriosis is probably the only benign disease that is treated surgically by removal of something else. They remove the uterus, tubes, and ovaries, and leave the endometriosis, which is ...

You can't remove it all.

Well, you can remove it all. You can remove it all. You have to have an experienced surgeon. The other thing is, is that even if the ovaries are gone, it's been found that endometriosis, through the use of aromatase enzyme, manufactures its own estrogen in the lesion itself, so it doesn't care whether you have ovaries.

In my career, I treated about 100 women who'd had previous removal of the uterus, tubes, and ovaries who still had endometriosis, and they had it in the same areas that women have it all the time when they have their pelvic organs in. Then, when you finally remove the disease, guess what? They feel better.

You can actually remove all of it?

Yes. Yes.

That's a revelation to me. I feel like I'm in a different planet right now. [inaudible 00:40:59].


All right, thank you Dr. Stein.