Pelvic Floor Physical Therapy to Manage Vulva and Sexual Health for Women with Graft-versus-Host Disease (GVHD)

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Pelvic Floor Physical Therapy to Manage Vulva and Sexual Health for Women with Graft-versus-Host Disease (GVHD)

Tuesday, May 3, 2022

Presenter: Nikki Samms PT, DPT, Senior Physical Therapist, The University of Texas MD Anderson Cancer Center

Presentation is 17 minutes long with 40 minutes of Q & A.

Summary: Ovarian failure, estrogen deficiency, decreased sex drive, infertility and vaginal graft-versus-host disease are a concern for many women after a stem cell transplant. This presentation discusses what causes these problems and treatment options, particularly for women with vaginal graft-versus-host disease (GVHD).

Highlights:

• Vulva and vaginal graft-versus-host-disease but is under-reported. Regular self-exams, seeing a gynecologist when pain or other symptoms of genital GVHD appear and consulting with a pelvic floor physical therapist can help relieve symptoms.
• Symptoms of vaginal GVHD include changes in the appearance of the external genitalia; a clitoral hood that sticks to the clitoral gland; disappearance of the folds of skin around the vaginal opening (the labia); a vaginal opening that fuses together; and shortening or closing of the vaginal canal.
• Pelvic floor physical therapists treat male and female bladder control issues including constipation and incontinence, pelvic organ prolapse, female and pelvic and rectal pain, and pain with sex and pregnancy. You can find a pelvic floor physical therapist at PelvicRehab.com.

Key Points:

(01:07): Premature ovarian failure is common after stem cell transplant and can lead to a number of health problems. Prescription estrogen can improve the symptoms.

(01:58): A low-dose transdermal patch can help women who have low sex drive after transplant.

(03:07): Symptoms of vaginal GVHD usually appear 7-10 months after transplant but can also occur later. Vaginal GVHD often occurs when GVHD is also affecting other parts of the body such as the skin, eyes and mouth.

(04:14): If GVHD causes the vaginal canal to close, menstrual flow may not be able to exit the body, which can lead to a medical emergency.

(04:52): There are several good treatments for vaginal GVHD including steroid creams, topical estrogen and silicone rings called pessaries.

(05:37): Physical therapy can prevent narrowing and shortening of the vaginal canal by using dilators and/or regular sexual penetration.

(07:11): A consult with a pelvic floor therapist begins with a detailed summary of symptoms and physical examination of the pelvis, skin and nerves. Patients are usually given homework – exercises to do at home to improve symptoms.

(09:39): Stretching, yoga, and guided imagery can help with pelvic floor problem

(11:33): The vulva is like a self-cleaning oven that takes care of itself. You don’t need to put anything on it, other than warm water, to keep it clean.

(14:45): Mental health experts can help with frustrations about changes in the genitalia and body image concerns

Transcript of Presentation:

(00:00): [Mary Clare Bietila] Introduction. Welcome to the workshop, Pelvic Floor Physical Therapy to Manage Vulva and Sexual Health for Women with Graft-versus-Host Disease. It is my pleasure to introduce you to Dr. Nikki Samms. Dr. Samms is a senior physical therapist at the University of Texas MD Anderson Cancer Center. She specializes in pelvic floor physical therapy. Using evidence-based practices, she helps male and female cancer patients who have a variety of disorders, including genital GVHD. Please join me in welcoming Dr. Samms.

(00:37): [Nikki Samms]   Overview of Talk.  Hi everyone. Let's talk about the vulva and sexual health after transplant. I've listed here for your convenience five main women's health concerns that can present post-transplant including premature ovarian failure, estrogen deficiency, decreased sex drive, impaired fertility and vaginal graft-versus-host disease. We are going to discuss each of these more at length.

(01:07): Premature ovarian failure is common after stem cell transplant, but treatment is available. Premature ovarian failure unfortunately is common after chemotherapy and total body radiation for those who have stem cell transplant or blood transplant. This can lead to low estrogen levels, decreased sexual interest and fertility issues. Symptoms for lack of estrogen can include hot flushes, night sweats, mood or sleep disorders, poor ability to concentrate, joint pain, impaired sexual function and infertility. If early enough in the lifespan, this can prevent secondary sex characteristic development and can increase your risk for things like osteoporosis, heart disease and cognitive impairment. The good thing is to know that there is medical treatment available, that prescription estrogen replacement can improve the above symptoms and implications medically.

(01:58): Low sex drive can happen after stem cell transplant but can be treated. If low sex drive does happen to you, there is treatment. Women may benefit from low dose transdermal, as in via the skin, testosterone plus estrogen/progesterone hormone therapy. It may be worth speaking to your gynecologist if you experience this.

(02:15): Fertility counseling before stem cell transplant is recommended. Unfortunately, the number of pregnancies with successful outcome after stem cell transplant plus chemotherapy and total body radiation is quite low. Prior to undergoing these treatments, it's recommended to undergo fertility preserving counseling with your physician.

(02:34): Vulva and vaginal graft-versus-host-disease (GVHD) is common but underreported. So I wanted to give you all some stats and some symptoms so that you would understand the scope and how to identify potentially or get help for vulva and vaginal graft-versus-host disease. In general, this is a two-part problem in terms of being under-reported. Patients rarely report to their physicians, and physicians themselves often don't screen for this. Therefore experts estimate the incidence of vaginal graft-versus-host disease to be anywhere from a quarter to almost 70% of women who undergo stem cell transplant. And these numbers are generally thought to be low.

(03:07): Vaginal GVHD often presents when other forms of GVHD are also present. The median time or the middle amount of time from when the symptoms are initially coming on until they're reported is usually seven to 10 months, but late onset can be more than a year after a stem cell transplant, and that's not uncommon. Symptoms usually start at the external vulva or the external genitalia, and they can progress to the internal vaginal canal over time. Vaginal graft-versus-host often presents when other GVHD manifestations are present such as in the mouth, the eyes, the GI tract and so forth. And even can significantly occur later than other forms of graft-versus-host.

(03:43): There are many symptoms of vaginal GVHD to watch for.  Get annual gynecologic exams even if you don't think you have vaginal graft-versus-host. That's the best recommendation. And get them as often as you need, if you actually do have symptoms. Symptoms can include things such as visual changes to the skin and the external genitalia, including redness, white patches; clitoral hood itself may adhere or stick to the clitoral gland; the inner labia may start to disappear; the vaginal opening may fuse together; and the vaginal canal can shorten in length and/or completely close.

(04:14): If the vaginal canal closes entirely, it can impede menstrual blood that exits the body, and that could become a medical emergency if not addressed. So even if sexual function is not your main concern at that point in time, this is still something very important to take seriously in terms of a medical concern.

(04:31): Also, in terms of sensation changes, one might notice soreness, burning, swelling, dryness, itchiness, fissures or micro tears in the skin, as well as pain and/or impossible intercourse and vaginal exams, and difficulty or inability to orgasm.

(04:52): There are several good treatments for vaginal GVHD including steroid creams and topical estrogen. The good news again is that there are treatments available medically through physical therapy, and if necessary, surgery. For medical treatment, if appropriately applied, topical clobetasol propionate which is a Class IV corticosteroid or an ultrapotent corticosteroid, you can topically apply locally to the vulva that can control inflammation and progression of disease. Topical estrogen can increase the skin thickness as well, making the vulva-vaginal skin more resilient to disease process and the steroid that you might be applying.

(05:24): Silicone rings, also known as pessaries, with hormones can be prescribed by your physician to help keep the vaginal canal open, possibly without even regular dilator programs or regular intercourse.

(05:37): Physical therapy can prevent narrowing of the vaginal canal. Physical therapy is designed to help prevent the narrowing and shortness of the vaginal canal using dilators and potentially regular sexual penetration, which cannot only aid the ability to have annual pap smears when started early enough, but also can prevent painful corrective surgeries

(05:54): If for some reason conservative care isn't acted upon early or persistent enough, gynecologists can surgically reopen the vagina as well. We're hoping to prevent that in all possible cases.

(06:07): So to transition a little bit more about pelvic floor physical therapy, I'll let you know more what I do and what many pelvic floor physical therapists throughout the world actually do within our scope of practice. I'm going to read several of the items from the slides just to give you kind of an idea.

(06:22): Pelvic floor therapy can help with many pelvic-related problems. We actually treat male and female bladder control issues, bowel control including constipation and incontinence, pelvic organ prolapse, which is when organs tend to droop lower in the pelvis than what they should. Female pelvic pain, male pelvic pain. If you can name a part of the pelvis, the genitalia, that is within our scope to address from a painful aspect. Dyspareunia which is pain with sex, tailbone pain, pain with pregnancy, and in the postpartum period. We can help with painful bladder syndrome, rectal pain, pains of the primary nerve of the pelvis called the pudendal nerve, abdominal pain, lymphedema, pelvic congestion, which is swelling and much more. So we're licensed to help with many, many different types of things.

(07:11): Pelvic floor therapists begin with a detailed summary of symptoms and appropriate testing, and education on how to treat symptoms. You may be wondering to yourself, "Well, if I go to a pelvic floor physical therapist, what might that be like and what would happen in that first visit?" So to let you know and pull back the curtain, we will take a detailed summary of your symptoms. We're going to try to find out what kind of therapy you've had in the past, whether it's regular physical therapy or even pelvic floor therapy. We want to know if there's any kind of trauma or changes that have happened to that pelvis, including things like giving birth or having a surgery, a motor vehicle accident, you name it. We want to know about your bladder concerns and your bowel concerns. We want to be thorough and holistic in our treatment of you, have a complete picture of what we need to do to help you with your care so that we cannot just get you a little better, but as much better as possible.

(07:51): Our first visit will also include most likely physical testing, so we're going to want to take a look at the outside of your pelvis, if that's possible. We want to appreciate the integrity of your skin. What are your nerves doing? How do your muscles fire and how do they relax? We'd like to do an internal pelvic exam of some sort, whether that be a vaginal or a rectal exam, depending on what your needs and presentation are. And if we need to do an orthopedic assessment, including other aspects of the body, the spine, the hips, the knees, whatever that may be, we're also going to incorporate that in our plan of care at one point or another, just to make sure that we can get you, again, as much better as is possible.

(08:27): We're going to start education that very first visit. In a visit related to vaginal graft-versus-host we're definitely going to provide you daily vulva care recommendations. We're going to probably start you on a vulva moisture regime. We're going to try to help teach you techniques to calm down the nervous system and get you out of that fight, flight or freeze that can flare nerves and flare pain. We may start you on a dilator program right away. We will help to transition you back to resuming safe sex or sex that is pain-free when possible. And then also we are going to take a look at things like your nutrition and your movement, your exercise, your bladder and bowel health, as I had mentioned before.

(09:07): Pelvic floor patients will often be given homework assignments of exercises to improve their condition. So on that first visit, you can expect to get a homework assignment, and hopefully that homework assignment is thorough enough that you can start to see some improvements between visit one and visit two. During our treatment visits, we're going to continue your care, we're going to be looking at more education. My patients inevitably have lots of questions for me by the second visit. A lot of times I think they find that to be the single most valuable aspect of what I provide for them. And so I always give them an opportunity to field other questions and really fire away at me.

(09:39): Stretching, yoga, and guided imagery can help with pelvic floor problems. We may introduce things like hip stretches, maybe a gentle yoga program. We're going to teach you, more likely than not, how to breathe with the diaphragm, the belly, also to help calm the nervous system. We may do some hands-on work for you on the outside of the body, the abdomen, the hips, the buttocks, the thighs, the labia. Internally as well we might do all kinds of different treatments with you and be in sync with you as a partner, looking at your facial expressions, talking, making sure that you feel okay that if we find an area that's tender, that we can release that, whatever we need to do to calm down both muscles and nerves and put the mind at ease.

(10:15): And then also we may do simple things like guided imagery or help transition you into meditation. Whatever we can do, that you feel comfortable with, that will allow us to get your nervous system out of that red alert mode. And of course, we're going to help you with dilator training. That's a fundamental difference between a pelvic floor physical therapist and a physician potentially who may say, "Here is a dilator. Go use it." We're going to actually give you really specific recommendations and we'll catch up with you on a week-to-week basis and progress you forward and help you actually return to intercourse, if that in fact is your goal.

(10:52): So we were talking about good vulva care before and making recommendations for that. And I think there's a lot of misinformation out there. Unfortunately in our society, even in current times, talking about the pelvis is really taboo. We don't do a whole lot of it, and unfortunately that means we have a lack of information and we have a lack of safe spaces to discuss these things. And I do say, often, if you have a pelvis and you live long enough, chances are you're probably going to need help with that pelvis. And unfortunately, we don't often know where to go to find out good information, and Dr. Google a lot of times has really bad information for us. So now is a great time for us to come together and talk about these topics.

(11:33): Vulva health begins with warm water cleaning and a moisture program. The first thing that I'll say here is that the vulva is a self-cleaning oven. That means that you shouldn't have to put anything external on your body to clean it. The skin is really smart. The human body is really smart and knows how to take care of itself if we just get it set up for success. So nine times out of 10, what I'm recommending to my patients is that they use warm water through their shower or their bath. They mechanically run their hands through their skin folds, and then pat dry. Avoid things like soap and fragrance and alcohols, anything that is foreign to the body that can dry out the skin.

(12:05): And then I often ask my patients to begin a seven-days-a week moisture program. I give them a list of products to try that are safe. I even try to provide free samples for them here in clinic so that they can get reasonably started. And then we touch base, talk about it again and make sure that they're not having any kind of reaction to anything and that everything's going well. And I've seen massive improvements for my patients in terms of their ability to feel like their vulva moisture is just better within a month of starting a program that we look at from a moisture aspect.

(12:38): Self-exams of the vulva will establish a baseline for judging later changes. And then I'm asking you, and I'm asking my patients, please empower yourself to start looking at the vulva. If you haven't done it, please bring yourself to do that. Get a little handheld mirror at home, once a week if not more often, spread the labia, look to see what your skin looks like. In our society, we talk a lot about, and we've become more comfortable embracing discussions about, breast cancer and breast health, self-screening for breast cancer, but we're not talking about the pelvis and that's so important. It's important for you to know what you look like normally, so what is your baseline?

(13:11): It's important for you to know if there are changes so that if you need to go to a medical provider and say, "Hey, something feels off, it doesn't feel normal to me," then you will then have agency and you'll have the education to be able to say to that individual, "But this looks different than it did last week." So please do yourself a favor and start looking at your vulva. And also, I'm providing for you here, I'm hoping that maybe you can put this in your mobile devices, just put this in as a link into your mobile device. This is not pornography, this is actually a database that a group in Australia called Women's Health Victoria, Australia, compiled for the benefit of the general public, so that they would be able to look and say, "What is a vulva supposed to look like?"

(14:00): And there are a lot of variations in theme, in terms of size and shape and color, and this is kind of just a little bit of information that they've put together, some photographs with permission. There are no names or anything identifying on it, it's just to give you a slight bit of appreciation that variation in the vulva is normal and that's okay.

(14:26): Psychosocial issues must also be addressed in treating pelvic floor problems. Next, I want to talk about some of the psychosocial issues related to this topic. Unfortunately here in America, I can't speak for all countries, but I can say for sure in my own country, in America, even in contemporary times, there is a lot of stigma still around addressing mental health.

(14:45): Mental health experts can help with frustrations about changes in the genitalia and body image concerns. But mental health is just health. Your mind and your body are a machine, they're meant to be worked together. And I can tell you that there are often emotional strings attached to developing something that doesn't feel right in the genitalia. So just know that there are experts available to you to help you with those very things, frustrations and body image concerns, to help you with sexual positioning. If you're experiencing depression or anxiety, those are total valid feelings, to have anxiety over something new that you couldn't have anticipated, which is a side effect of a cancer that you didn't prepare for. No one plans to have cancer.

(15:23): Many different specialists can help with the emotional aspects of pelvic floor treatment. So saying that, just know that there's a group of individuals, including occupational therapists, certified sex therapists and social workers who can help you navigate the emotional aspects and the mental aspects and the frustration aspects to this. Those are all very valid feelings and they're important to address as well.

(15:44): Reputable websites can help people find pelvic floor therapists near them. So you may be wondering at this point, "Well, how do I find a pelvic floor therapist near me?" So on these next two slides, I'm actually including a screenshot of a couple of reputable websites to find a Nikki near you is what I like to say., if there is one.

(15:57): And unfortunately these are two websites for the United States, I would have to do some research for other countries. But I can tell you that if there is a physical therapist that specializes in pelvic floor, that is within a certain radius of you, you should be able to find that individual just by searching these websites via city, state or zip, practitioner name if you're looking for someone specific.

(16:21): I'm going to advance to the next slide so you can also see that one. These are through Herman & Wallace and the American Physical Therapy Association. A lot of times there aren't pelvic floor physical therapists near you. So we're kind of rare breed unfortunately, but we are out there and we do take very big pride and passion in helping our patients and helping network. So if you can get access to one, you need someone or someone you know needs someone, these are a great couple of websites to start. That is the end of my presentation, so there's plenty of time for questions. Please let me know what questions you have but thank you so much for your time.

Question and Answer Session

(17:05): [Mary Clare Bietila]  Wonderful. Okay. So we do have quite a few questions, but we have room for more. So as a reminder, if you have a question, please type it into the chat box on the lower left hand corner of your screen. All right. Our first question is, what can you do for interstitial cystitis? I maybe saying that totally wrong.

(17:39): [Nikki Samms] Okay. So I love that question. It's a really big question. We can help a lot, is the bottom line for that. With interstitial cystitis, or painful bladder syndrome is the other name for that diagnosis, I just read the statistic recently, and I'm actually not surprised that 80% or more of cases of women who have interstitial cystitis actually have overactive pelvic floor muscles. Which means that your muscles, just in general in your body, whether you're thinking about a biceps muscle or the muscles of the pelvic floor themselves, they can either be too short, kind of too loose, too tight or just right. And so when you think of them that way, if they are in a shortened position, a lot of times they'll have knots or trigger points, painful areas that we can release. We can teach you how to release those and that can dramatically help your bladder's behavior.

(18:31): And then we can look at things like, what is your nutrition like? Are there any triggers there? We can look at things like, what are you doing in terms of fluid consumption? What are you drinking? How much are you drinking? The method by which you drink and consume those fluids? We can work on retraining the bladder so that you get to be the boss and it gets to be the employee, rather than the other way around, which I know especially with painful bladder syndrome, it can so feel like the bladder's just leading you by the ear.

(18:57): We can work on destressing the body. And so we were talking before about a nervous system that likes to go on fight, flight or freeze at times, just to protect our body. That's just the way that our system is made. And sometimes, unfortunately, it can just stay in that fight, flight or freeze, which can contribute to things like pain and frequency and urgency of the bladder. And so we have various ways we can teach you how to calm down that nervous system, relinking those muscles, looking at foods and fluids, the bladder behavior, and maybe even doing things simple, like doing vulva icing. Which kind of sounds a little maybe crazy, but a lot of the times, if there are trigger points in the muscles, where the muscles are shortened up and they're creating a lot of urgency and just there's a lot of distress in the pelvis at that point, a lot of times I'll just have my patients just start to see if sitting on a bag of frozen peas for maybe up to 10 minutes can give some relief.

(19:53): And that wouldn't be the only thing I would have them start with, but put that bag of frozen peas in a pillowcase, and then try sitting on that for a few minutes at a time, see if that gives relief from time to time. If it does, then they actually make reusable gel packs for the freezer that you can take in and out of the freezer that will have a certain amount of pliability still left in them once you've taken and frozen them. And that can be reused. But I never have my patients purchase anything if they can try something for free. I hope that's helpful. If there are more questions about that, please let me know.

(20:25): [Mary Clare Bietila] Absolutely. That is such valuable information. Okay. Our next question is, can you explain the surgery which may be needed for internal adhesions?

(20:36): [Nikki Samms] I can to an extent. This is going to be a more in-depth question and answer with a physician, especially the surgeon who might do the surgery. But I have worked with physicians here who have actually done that surgery, where they have opened the vaginal canal that had just completely been closed down and they've created space essentially. And my understanding is that they are taking scarring and they're sort of breaking up scarring. That's the extent to which I understand the surgery. I don't want to give too much more information because I don't feel like it's going to be enough information that will be helpful, and I don't want to overstep my bounds.

(21:13): [Mary Clare Bietila] Okay. No problem. All right. The next question is, thank you so much for your presentation. Unfortunately, my skin on my vulva has become red and irritated. They're currently using Aquaphor and occasional steroid topical creams to decrease the redness and irritation. They're curious what else they can use? Are there moisturizers you recommend?

(21:35): [Nikki Samms] Yes, definitely. One of the first things I would say is I would be curious, if you were my patient, to look to see what type of topical steroid you're applying. That Class IV corticosteroid that I mentioned is really considered to be gold standard in terms of being able to sort of put any development of... It's kind of an autoimmunity is what's happening in the vulva. It's similar to like a lichen sclerosis or lichen planus. If you've ever read or heard about those, it's a little bit more esoteric, but those are skin conditions that can develop even without anything related to cancer. And a great way of stemming the tide with that is by using clobetasol propionate.

(22:17): So a lot of the times, one of the best gynecologists I've been trained by related to vulva dermatology has said, "Look, to be able to get clobetasol into the skin or any kind of topical steroid into the skin in an effective way, not just in the top layers, but like down deep enough into the dermis that it's going to make a fundamental difference, you really need to consider either soaking in a warm tub for 15 minutes or putting a warm compress on the skin for 15 minutes before you apply it." So that's one thing you may want to consider just to make the topical more effective since you already have access to it and you're already doing it.

(22:53): And then I would be curious to see with the Aquaphor, like how often you're applying that versus the clobetasol. But typically gynecologists will start you more frequent with the clobetasol application and then kind of taper that down over time. When I'm looking at vulva moisturization specifically, there's a few products that I recommend to patients. One of them is by the name Hyalo GYN, and that's spelled H-Y-A-L-O G-Y-N. And there's another alternative option called Replens, R-E-P-L-E-N-S. Those two are non-prescription. They come either in suppository form or with a tube and an applicator.

(23:36): I always ask my patients to moisturize the skin on and end. So like you take your bath or shower, you pat dry, and then you apply in some gentle kind manner. You apply a moisturizer on the surface of the skin and you rub it in, like you would any other part of your body. You put lotion on and you put a little bit up inside the vaginal canal as well. And so that could be done with the Hyalo GYN, or if you do the Hyalo GYN, the Replens, and either of those as the suppository, then that can just be inserted. It looks like a tiny little submarine, and the body will absorb the capsule made of something like Shea butter or something along those lines. You can look at the package specifics and then it'll allow the actual moisturizing contents to be absorbed by the vaginal canal and probably a little bit on the outside vulva too.

(24:24): Usually the recommendation is to do something like Hyalo GYN three days a week. And then perhaps on the off days use something like coconut oil, emu oil, or jojoba oil. A lot of times those oils and products are easily accessible either via Amazon or your local grocery store. I'm not sure about from country to country, but coconut oil and jojoba oil are usually fairly readily accessible in most places I would say.

(25:04): And then there's a company by the name of Desert Harvest. They produce a lot of different products, including safe to use lubricants for intercourse, but they have a Gele. That Gele also is a moisturizer. So sometimes I'll have my patients try the Gele for their daily topical on the days that they don't use something like the Hyalo GYN and Replens. And as I'm thinking of it, there's one more that's come to my mind, it's called VMagic. It's a little thicker, it's a little bit more expensive. None of these products are... They're all about mid-priced from expense to really cheap. They're all middle of the road. But this is thicker kind of similar to like a Vaseline, if you're familiar with that, in terms of its consistency. A little goes a long way. So any of those products could be good to use in terms of improving moisture.

(25:59): If you're thinking about sexual intercourse or sexual play in any kind of way, where there might be thrusting involved, I always like to tell my patients, they need to think about moisturizing their cells and really getting their skin happy from a moisture content first, before anything else, because otherwise the nerves in the pelvis will interpret a lot of friction there as kind of sandpapery, send way too many messages to the brain and the brain goes, "Oh my goodness, this is so dangerous, so I'll tell my person to stop doing what he or she is doing." And that's just how pain neuroscience works. So I always encourage my patients to get good moisture as a base foundation. We can put up the fancy shutters and the designer paint later down the line.

(26:39): [Mary Clare Bietila] That's a great analogy. All right. Our next question is, "I recently went to the gynecologist who gave me the okay other than the skin and the vulva." They're not sexually active. Besides their gynecologist appointment, do you recommend a self-examination to make sure the vaginal stenosis is not occurring?

(27:02): [Nikki Samms] Sure, why not? I think you know your body better than anybody else in the whole world. And I think if you wash your hands with soap and water for at least 22 seconds, say happy birthday to yourself twice, you can at least get out a mirror and take a look on the outside. That assessment alone can give you quite a bit of information, but yeah, being able to just examine your own body is always a good start.

(27:26): [Mary Clare Bietila] Absolutely. All right. Our next question is, "My bladder works normally during the day, but empties slowly when I use the bathroom at night. Is this a pelvic floor issue or an issue I should have a doctor evaluate?"

(27:41): [Nikki Samms] Maybe. Yes and yes is what I would say to that. I think starting with a physician is always a good option depending on what part of the world you're in, or even what state you're in within the United States. You may have direct access to a physical therapist that could do an assessment for you. And if not, starting with a physician is always a good choice. It sounds like with almost no information, it sounds like there's a possibility that there might be some prolapse, maybe a little drooping of the organs. If you're starting your day out at the beginning and things are just going fine, and then towards the end of the day, it's getting a little bit harder for you to evacuate.

(28:13): One of the things that we don't want to have a habit as humans is starting and stopping urine stream intentionally a lot. We also don't want to be pushing or straining. You have sphincter complexes inside your body and they're not replaceable, so you don't want to stress them and stretch them out physically by pushing and power peeing and trying to force things to happen. And I definitely didn't hear you say that you were, but it could become a temptation. So I would prefer that you at least get an assessment to see if there's anything that could be contributing to that. Absolutely. Worst case scenario, you get a clean bill of health and there's nothing like some good satisfaction and just feeling a little bit of relief from that.

(28:56): [Mary Clare Bietila] Great. All right. Our next question is from a 60-year-old woman who is three years post-allo transplant. They do not have GVHD. At the time of the transplant they had possible, but not confirmed, esophageal graft-versus-host disease. They lost some bladder control since the transplant, and the doctor said to do Kegel exercises. Number one, they're not sure if they're doing them right, and number two, "What can I do? Anything else?"

(29:32): [Nikki Samms] Okay. This is such an awesome question, I'm so grateful that you asked it, and I hope that this helps a lot of people. First of all, I am so grateful for my physician partners. They make my world go round and my patients are the reason I professionally exist. So saying that I'm grateful for the community that I work in, but I will tell you that physicians are not exercise experts. Physical therapists are exercise experts. So saying that, unless you've had a pelvic floor physical therapist do a hands-on exam to know what's happening with the muscles, we have a lot of questions we need to answer.

(30:04): First one being, are you a good Kegel candidate? Is that something that's appropriate for your body? When pelvic floor physical therapists do their assessment for you, especially the hands-in assessment, whether it's a vaginal exam or a rectal exam, one of the key pieces of information we're trying to find out is are these muscles too short and overactive and need to be lengthened with stretching, breathing, relaxation first? Or are they more lower in tone, not firing as much, and now we need to work on firming them up, giving them better strength, giving them better stamina? And so that is the first fundamental question we need to know in this case, is this someone who would benefit from Kegels? And is it someone who actually shouldn't be doing Kegels like that right now?

(30:46): And then secondly, you're right. We have a lot of patients that come to us and say, "I don't know what I'm doing with Kegel contractions. What's a Kegel? I know what I think I'm supposed to be doing, but I still don't know if I'm doing it right or not." And unfortunately, research literature currently shows that even if we were to as a medical community hand you a piece of paper that says, "Here's what you should do," it's not very effective. People do a lot better when they can work one-on-one with someone who actually specializes in this and can not only tell them what to do, but give real-time assessments, "Here's the knowledge of the results of what you've done." And so I think that's where our profession is really amazing.

(31:23): I love what we do, that our patients are able to say, "Okay, I got this now. I'll have to work on it, but I've got this." So absolutely. I think knowing if you are a good candidate, I think knowing if you're doing them correctly, and so you're not just wasting your time, spinning your wheels, you're getting something out of the time that you put into that, absolutely helpful.

(31:44): And then the last thing I'll say is, if someone just says, "Go do Kegels," what does that mean exactly? I mean, how many are you doing? How many do you do during the day? How long do you rest? How long do you hold them? Do you use just the vaginal canal or are you using also the rectal canal when you know - so the devil is in the details, I like to say. And so that's where, if you do happen to be able to go to a pelvic floor physical therapist specialist, we can assess you as an individual human being and tailor you a program and kind of say, with an analogy, "We're going to climb Mount Everest, but let's do some training to get there. We'll condition our bodies. Nobody just goes and runs a marathon, they prepare for it." So we'll find out where you are and find out how long should you hold? How long should you rest? How much recovery time do you need? How many sessions should you be doing a day? Are there other special considerations like what position you're in? So yeah, these are great questions that you bring, and I hope that I've answered your question.

(32:39): [Mary Clare Bietila] Yeah. Are there apps or devices that someone can use? I feel like I've seen something advertised to me probably on Instagram, that was a device that would help you time your Kegels and things like that. Are you familiar with anything along those lines?

(32:54): [Nikki Samms] Yes, there are. I will confess that there is so much emerging new information in the world. Our technological world is happening so fast around us and devices and apps, and it's very hard to keep up with them. Also, I can't say that I'm some expert in knowing what the newest, latest and greatest things are, but there is a device, I'm forgetting the name of it, that essentially it's... And I'll tell you the pros and cons of it. It's a trainer that you can order to home, and it's designed specifically for females, the female body. So it's a trainer that you insert inside the body and then it has Bluetooth, which will connect to your phone, and then you use your phone app and it can train you. I think it starts with an L, but I'm forgetting.

So saying that, this is one of probably many. You can look up this type of thing with an internet search. I've worked with this with one patient and I was somewhat unimpressed. And the reason for that is she had neurologic deficits, which means that anytime she would start to try to squeeze her muscles, there needed to be some lead time between when the brain gave the execution or the command, "Hey, muscles, squeeze," and her muscles would actually follow suit and execute the squeeze. And the app was just not allowing any kind of variation outside of its pre-programmed plan.

So trainers like that do exist. They may be good for maybe the average bear, but they may or may not be. So I think that if you use something like that, it would be great to at least start with an assessment with a pelvic floor therapist, if that's a possibility for you, and that way you can have a plan of how to use the equipment, what would be helpful.

There are handheld biofeedback units, On the other hand, which can be tailor-made to what you specifically need to do. Usually if I have my patients do biofeedback at home, I start them in clinics so that we can get a grasp of what that performance might look like and make sure that my patient feels like he or she is going to benefit from using the biofeedback.

(And as I said before, I don't like my patients to have to go buy anything that they don't have to. So nine times out of 10, my patients will say, "Hey, I just find it's so much better doing this here with you. And also in the plan that you've given me, I get a little bit out of using a device on my own, but I need the accountability, I need the confirmation that I'm on the right track." So these devices do exist.

I will say that there are some free mobile applications you can find nowadays that will allow you to program a Kegel contraction. They're usually called high-intensity interval trainer type applications, and I use one with my patients in clinic as well, if I set up so much hold time with rest time, sets and reps, because it will take the thinking out of counting, and all they have to do is focus on breathing and squeezing their muscles with good technique. So there are a variety of devices. I'm sure there are more devices out there than I even know of, but I think there is some real merit and benefit to go into a pelvic floor therapist, if you have access to one that can just help you get started and navigate the waters. Even if you don't have to see that person on a regular basis, just getting started with someone who has expertise in that area can be worth its weight and gold.

(36:11): [Mary Clare Bietila] Absolutely. Can we have the previous slide put up so that people can write down the information about how to find a pelvic floor physical therapist?

(36:21): [Nikki Samms] There's two of them. Yep, I'll hover on the last one for a little while, and then I'll go back to the first one as well.

(36:26): [Mary Clare Bietila] Okay. Well, in the meantime, let's take another question. This particular person has vulva and vaginal GVHD and experiences painful sex. They're in premature menopause and they take tibolone daily and topical estrogen cream and a suppository twice a week. They have a dilator. They don't really like to use it. Maybe they're using it the wrong way?

(36:58): [Nikki Samms] Okay. Could be. Absolutely. I think that is, again, if you have access to a pelvic floor physical therapist, that individual can really help give you some guidance with that. I would love to know more if, "I don't like to use it," means, "I don't feel motivated to use it because it's kind of mechanical", which is valid for sure. Or if it's more like "there's pain with the dilator'. When I explain my dilator programs to my patients with the similar setup as what was just described to me, we're looking to find areas that are tender, but not create a 10 out of 10 pain like, "Ow, I'm jumping out of my skin."

So being able to sort of map the vaginal canal in a way, where you know the areas that are most bothersome and spend time with just gentle touch, breathing through that, allowing the brain to calm the system essentially, feeling that, "Okay, a little bit of touch is not so bad, now can I apply just a moderate amount of touch?" And then once that's better, introducing motion and things along those lines and making it targeted to that individual, I think that's where the best benefit comes and it makes it feel more doable.

And then I think sometimes when my patients come to me and already have been told to use a dilator, they're just told to use a dilator and they're not given any indication as to how long they should be using it, or how often and things like that. So I at least ask my patients if sex is painful and they're really trying to get back to that without pain, to try to commit to a minimum of 10 minutes a day. I usually don't want them doing more than 20. It has to be something sustainable, but build this into some kind of a routine that you're already doing.

You brush your teeth, you do your dilator for 10 minutes, you void the bladder and then you go to bed. Or something along those lines. But I think some one-on-one training can help with that. I think just some guidance could help with that. It sounds like you've got a lot of great things already you're doing for yourself. You're not clueless. You've got some tools in the toolbox, we just might need to shine them up.

(39:05): [Mary Clare Bietila] Yeah. And there's different sizes to dilators as well. I had purchased one, I'm a survivor as well, and it was sort of like a nesting doll where it had different sizes that you could graduate to. That was kind of helpful. Is that something that is of use?

(39:22): [Nikki Samms] Yeah. The thing is if you had overactive pelvic floor muscles and that was preventing the bladder from keeping urine in it, and you're having urinary incontinence and overactive pelvic floor muscles are contributing to that, but you don't have any intention of having penetrative sex, then having a simple dilator that's small in size that can just release trigger points in the pelvic floor muscles is a very valid choice. But if you're trying to get back to sex where potentially there is other devices being used, including possibly a penis, then getting up to something that's functional in size where you're starting with a small size and you're working up size by size to something that's closer to what you're actually experiencing in your real life is absolutely valid. And there's a lot of different products on the markets out there for patients. So I really try to tailor what I recommend to my patients based on their individual experience and needs.

(40:20): [Mary Clare Bietila] Of course. Of course. All right. Our next question is, are there any specific exercises for improving painful sex when having vaginal GVHD? We talked about dilators, is there anything you wanted to add to that?

(40:35): [Nikki Samms] I would say we delved a little bit into pain neuroscience earlier. I'll tell you a couple things about that. And also I like to... So I'll circle back around here in just a moment, because I think that's a little bit longer topic of discussion, but I like to give my patients stretches such as yoga type stretches, possibly like a happy baby stretch, child's post stretch. Whatever feels good, we might be doing hip stretches for other aspects of muscles throughout the hip complex. Movement, motion is lotion. So movement's a good thing.

And especially, our brains are really smart. As humans we're wired for pattern recognition and we don't like to think of ourselves as Pavlov's dog, but there's some truth to that. If we experience a stimulus and the brain interprets that as painful repetitively, there's a point where we start to just experience an apprehension of pain, like we're expecting this to happen now, even though nothing's even touched to the body. And so there are ways that we can down, train and retrain really the brain. Our logical mind understands that light touch is not a knife wound, but the sensory brain or part of the brain is saying, "Yes, it is."

And so there are ways for us to calm that down. And so that's why I say stretches, breathing with the diaphragm, the vagus nerve pierces the diaphragm. And so every time you breathe with a nice, big, deep belly breath, it strokes that vagus nerve, the vagus nerve sends messages to the central nervous system saying, "Hey man, chill out, there's no lion chasing us right now. We can rest, we can digest, we can feed, we can breathe, but nothing scary is happening." And so the more we do that slow, deep belly breath, the more that can help us to calm down the nervous system.

When we're thinking about things like how we decrease pain in general, looking at things like meditation, which doesn't have to be in any way religious, just simply a matter of sitting with yourself and coming back to the present moment over and over and over again. There's really, really good research behind this in terms of being able to improve pain. And there's something special about a minimum of 12 minutes a day. I need to figure out why that's the number in the research literature, but if we're hitting at least a good 12 minutes of meditation per day, that can dramatically help with things like pain and improving cognition in the here and now, being able to do well with your word choice, long-term memory storage, decreasing inflammation in the body, improving the immunity system.

There are so many things that meditation can help with, but the one I'm most interested in for my patients that are dealing with a vaginal pain or any type of pain in the pelvis, is the pain-relieving aspects are staggering when you look at the research out there. And there are a lot of free mobile applications these days that can help you get started with meditation. If you're like, "Ugh, meditation, what is that?" Or, "This is a myth. We're told that we're "bad at meditation" but we're not getting a report card and our brain is supposed to think, and that's its job."

So I think we're given a lot of misinformation about meditation in our day-to-day, and so a lot of times we're either too afraid to try, or we just don't know how to get started. But there are a lot of free apps as I mentioned, Insight Timer, Headspace, Simple Habit, Calm. There's many out there that can help you get started. So I think things like those, adding that as part of your day-to-day, the stretches, the breathing, the dilator program, all of those aspects come together to, like I said before, not just get you a little better, but get you really a lot better.

(44:02): [Mary Clare Bietila] Sounds wonderful. All right. Our next question is, do you know of any resources, videos specifically, about how to use a dilator for vaginal GVHD?

(44:14): [Nikki Samms] Yeah. Maybe might be the answer to that question. So this brings up another topic. There is a product called Ohnut, which is a device that actually, or they're like these almost silicone type rings that actually fit on the shaft of the penis when erect to kind of help to improve - Whenever patients have shortened vaginal canal, the depth of penetration can be problematic for some couples, and so if that device is placed on the male penis, it can help him to feel a sense of fullness, like there's full penetration, even when there's not, because 80% of the sensation for the male genitalia is actually in the head or the glans of the penis.

And so that just is such a great little transition to like full penis and vagina intromission, if that's what a couple is doing. And with the Ohnut product materials, one of my patients actually got it and said, "Oh my gosh, they give just a ton of just resources information." And I think she was talking about videos related to dilator use and things like that. So that company probably does, but whether or not you have to purchase the product and do you need the product? There probably are.

I don't know of anything other than that particular company, but that's tricky. That is definitely something that you got to be careful how you publish something like that, of course. But having said that, again that's another of those things that if you can just get started with a pelvic floor physical therapist, if you have access to one, then what a blessing.

(45:54): [Mary Clare Bietila] Yeah, absolutely. Okay. So our next question is about rectal difficulties. This particular person has had rectal fissures since transplant, and they use nifedipine with some success. Is there anything else in your experience that you might recommend or comment on?

(46:26): [Nikki Samms] Possibly. I think, first off, going and speaking with your physician, especially anyone who's either really good with the GI, so any kind of gastrointestinal stuff or dermatologists are probably going to know even more than I do. I will tell you that there are some things that you can do just to try to protect the skin. So you can put, there's a product called Calmoseptine which is like a barrier type cream that you can place. It does have some menthol in it, so be careful. It can tingle or it can burn, depending on how bad the fissures are. That can create a barrier for you throughout the day, which can help.

(There are a couple of other products that I have had patients...All three of these that I'm going to mention to you are over the counter, they don't require any kind of prescription. Nupercainal, and RectiCare. All three of these are topicals that you could try as options as well.

A lot of the times I'll tell my patients to really consider, if you're not already doing this, I mean I think a lot of my patients already are aware of things like flushable wipes, which are a little bit more gentle and calming to the system. But nowadays access to being able to have a bidet - and I'm not saying hire a plumber and pay $1,000 to switch your toilet over to a bidet in your house - but what I would say is that there are products on the market that will convert a regular toilet over to a bidet for like $30. $30, you can pay more, you can get a Cadillac or you can get a Pinto. It's entirely up to what you want to pay. But a bidet, actually if you get in a habit of using that, you essentially just use a tiny bit of toilet paper at the end of your bowel movement, and then using that bidet, you can moderate how much pressure the stream of that water is when it hits the skin surface. And I'm telling you, you'll feel cleaner, and you will feel like there's not as much pressure, friction rubbing, et cetera. That will put you just in a better place than what traditionally using toilet paper would. So I hope that's helpful.

(48:55): [Mary Clare Bietila] Yeah, that's really helpful. Okay. Our next question is are there books or articles for people so they can familiarize themselves with their anatomy and possibly trigger points within their body they should be aware of?

(49:10): [Nikki Samms] Oh, that's such a good question. We learn our anatomy from fun anatomy books, for sure. It's so funny because with all these questions, I almost feel like I'm some kind of a walking commercial and I honestly don't have any kind of financial ties with any of these products or companies that I'm familiar with at all. But we use resources where we can. I feel like there's a blog/website that's been put together by a pelvic floor physical therapist. It's called mypfm.com, mypelvicfloormuscles.com. And I think she does have some anatomy type stuff that's put on there. It's not going to be comprehensive, and you might get a little snippet here or there from the articles that she publishes like, "What's happening if I sneeze and I leak urine?" So you'll get some things from that.

But we learn traditionally from anatomy books and I know this might be taboo to discuss, but when we're in doctor physical therapy school, we also do dissect a human cadaver and we get very intimately familiar with the body just because we need to know, we need to know all of that anatomy, the connective tissues, the muscles, the nerves, the joints, the bones, everything. So ours is so extensive, but I don't know of anything that's like, "Hey, this is published for the public, check out your pelvic anatomy," off the top of my head.

(50:53): [Mary Clare Bietila] Yeah, yeah. All right. So the next question is for someone who's asking if you've ever seen someone like themselves. They have interstitial cystitis and it's  associated with neuropathic pain of the extremities and elevated tumor necrosis factor alpha. If so, is that treated the same as regular interstitial cystitis? If not, do you have any insight? This is very specific, but-

(51:26): [Nikki Samms] Honestly, I'm not sure. I think that for this individual to get really good treatment it's going to absolutely require a team of physical therapists and physicians that are working together, not in silos, just to make sure that there's really good communication across the group working with this person. So I would imagine the start of the treatment would be the same. The examination would be the same for sure. But are there other factors? I'm not as familiar with tumor necrosis factor alpha personally, so I'm not sure if that puts a spin on things in some way, but I do know that neuropathic pain of lower extremities is something that I see in my clinic on a fairly regular basis, particular because so many of my patients have, for one reason or another, at some point in their episode of oncology care undergone chemotherapy, and that a lot of times is affiliated with that.

So pain is pain. We think that we have pain receptors, but what we really have is pressure receptors and vibratory receptors and temperature receptors, and all of those types of receptors. And they just tell the brain, "Hey, there's some information." And the brain is actually the one that decides, is something a threat or not a threat? Traditionally pain is in our bodies to try to keep us from harm, from death and things like that. Unfortunately, sometimes when we experience pain for long periods of time, that can lead to weird thresholds where it doesn't take much to experience pain and it should have, had to take more or it just persists longer than it should have. But pain is pain. And so I think interstitial cystitis is part of that and can be part of that trigger point complex that I was talking about before. I don't know exactly the answer, but I do know that if you have a good team where you've got pelvic floor physical therapists and physicians that genuinely care about you and are communicating with each other, you're going to get good outcomes, especially if you're adherent to recommendations as a patient.

(53:31): [Mary Clare Bietila]  So the next question is, do you recommend hard plastic or silicone dilators? They don't have vulvar GVHD, but they do have significant vaginal stenosis.

(53:47): [Nikki Samms] Okay. Both. Both is the answer to the question. I will recommend different dilators to different patients, depending on what I find in their examination. My main thing is that I want you to have a dilator that you feel somewhat comfortable with, which means it's not necessarily going to feel good, but it's not terribly painful, horrible to use, giving you carpal tunnel. I want something that allows you to have a little bit of handle or a leverage point on it so that you can use it to genuinely stretch tissues that might be shortened up a bit. If you do use the plastic dilator, you can use whatever lubricant you want, but with silicone you need to be careful that you're not using a silicone lubricant, because that can actually break down your product over time.

(54:31): [Mary Clare Bietila] Okay. Very good to know. This is going to be our last question. This individual is experiencing pain higher up, like cramping in the area of the uterus. What could cause that? They've been examined by a gynecologist and had an ultrasound, and they said, everything looks normal. They prescribed estradiol cream and attributed things to dryness, but that doesn't seem to be what's going on for them.

(55:01): [Nikki Samms] Okay. There's so many things running through my brain when I hear this. I just want to meet this individual and do like an actual hands-on examination and get more history and find out some answers to my own questions. The question led to questions for me. But I would say there's a lot of things that can lead to that. I mean, yes, of course it could be something that's related to the internal organs. You could have things going on with the back and the spine, the nerves of the trunk themselves, pelvic floor of course could contribute to that, especially if they're overactive short and you're having trigger points.

There's a lot of different factors there that I would love to just see the full picture. I kind of joke sometimes that I'm going to put the physical in physical therapy, but it's important to say that I didn't bring my X-ray vision and I needed that hands-on exam, it's just so valuable. But I think there are a lot of factors there. I'm encouraged that the gynecologist hasn't found any kind of abnormalities with the internal organs. I would be very curious to know if it were possible for you to get a pelvic floor physical therapist referral, and then actually seek that as your next step.

Because we look at those musculoskeletal issues and we say, "Okay, what's contributing here? Is this nerve? Is this muscle? What is this? Are there certain positions that are provoking this? Is there something in the diet that's creating this? Is there gas that's being trapped inside the GI system, and maybe that feels like bloating and putting pressure?" And so a lot of times I'll address bowel things related to my patients having better pain-free days because that can affect everything. It can affect the bladder, it can affect pain in the pelvis in general. I'm sorry, I don't have more information without getting more from you, but that would be where I would head

(56:45): [Mary Clare Bietila] Closing. Gotcha. Okay. So that's going to be it for us today. I really have to thank you, Dr. Samms for this. It was an excellent presentation, fabulous round of Q&As, and on behalf of BMT InfoNet and our partners, we thank also the audience for these wonderful, excellent questions. We all learned a lot. So please reach out, contact BMT InfoNet if we can help you in any way, and enjoy the rest of the symposium.