Ask Us Anything About… Pelvic Pain

Barbara Schindo – Afternoon. Thank you for joining us. You are watching Ask Us Anything About Pelvic Pain. I’m Barbara Schindo. One of the things we’re going to be focusing on, the main topic we’ll focus on here which is a big cause of pelvic pain, is endometriosis. One of the most common symptoms of endometriosis is chronic pain in the pelvis or lower abdomen and painful or heavy periods which can worsen over time. Currently, there is no known cure for endometriosis and it affects about 10% of reproductive-age women, according to the American College of Obstetrics and Gynecology. So joining us today to talk about pelvic pain and endometriosis is Dr. Kristin Riley. Dr. Riley is the interim chief of the Division of Minimally-Invasive Gynecological Surgery or MIGS. They call it MIGS is the shortened version. So I may use that wording as we continue to chat here about Penn State Health Obstetrics and Gynecology. Dr. Riley, thank you very much for joining us here this afternoon.

Dr. Kristin Riley – Hi, Barbara.

Barbara Schindo – And for those of you guys watching this, whether you’re watching this live, or you’re watching on playback, and you have any questions about and not only endometriosis. But endometriosis, pelvic pain, pelvic pain related to menstruation, and you have a question for Dr. Riley, please put your question in the chat and we will get an answer for you. So, again, Dr. Riley, thanks very much for joining us.

Dr. Kristin Riley – I’m happy to be here, excited to talk to you about endometriosis, which is my – the focus of my practice and what I spend most days thinking about.

Barbara Schindo – Great. Then you’re the right person to have this chat with. So let’s start kind of with the basics. You know, we – I mentioned in my little intro that the biggest – one of the biggest causes of pelvic pain is endometriosis. Can you talk about what is endometriosis and how many people does it affect?

Dr. Kristin Riley – Yeah, so endometriosis is a really common problem. About 10% of reproductive-age women suffer from endometriosis and we think actually that number is a really big underestimate because it’s a really hard condition to diagnose. Endometriosis is a condition where tissues similar to the tissue that lines the inside of the uterus grows outside of the uterus in the pelvic cavity. It can grow mostly on the peritoneum, which is the clear covering on all of our organs. It can grow on the fallopian tubes, on the ovaries, on the outside of the uterus, on the bowel, on the bladder, and on other places in the body, as well. Usually, it’s localized to the pelvis. And as you mentioned, it can cause really painful periods. It can cause pain before periods, during periods, afterwards. Some patients don’t have painful periods. They have pain at other times. They can have bladder pain, bowel pain, pain with intercourse, and some patients have no pain at all but they have difficulty with infertility.

Barbara Schindo – Mm hmm. Well, that sounds like it can be, you know, very – a very life-altering, life-affecting condition. You know, I know a few of my girlfriends who suffer from endometriosis and I know they have some, you know, some really painful days and hard times. But they’re always very thankful for the great care they receive from their physicians. So another question that I don’t know that we – you maybe addressed a little bit and I don’t know that we know the answer. Do we know what causes endometriosis?

Dr. Kristin Riley – Unfortunately, we don’t. We think there are actually a lot of different theories about how people get endometriosis, but no one has actually proved any one of them and it’s probably a number of different things. So one theory is that tissue that grows inside the uterus goes backwards through the fallopian tubes and implants in the pelvic cavity. We think this actually happens in most women when you get a period that the tissue goes back through the fallopian tubes, but only certain women actually develop endometriosis. We don’t know if there’s a genetic factor, or an environmental factor, a hormonal reason. There’s also a theory that stem cells that grow in everybody’s pelvis, for some reason in women with endometriosis, these stem cells get differentiated or switched on and turn into endometriosis. There are a couple of other theories, too, sort of how it moves through your body and implants in different places. So, you know, that’s the first problem is we don’t really understand what causes endometriosis.

Barbara Schindo – Okay, and as you mentioned, endometriosis is not the only cause of pelvic pain or, you know, menstruation-related pelvic pain. And one – we had a question come in through our social media channels already. And the question is what might be some other causes of pelvic pain such as, you know, the person on social media asked, you know, what else might cause pelvic pain after menstruation?

Dr. Kristin Riley – Yeah, so we think about all the other organs that are in the pelvis, right? So bladder pain. There’s a condition called interstitial cystitis or painful bladder syndrome and that can cause very painful bladder symptoms. And patients can have both endometriosis and interstitial cystitis or painful bladder syndrome. And so we work really closely with urogynecologists here at Penn State Health who are part of our chronic pelvic pain team who help us take care of that condition, as well. In addition, you can have, you know, GI symptoms. So as I mentioned, some patients specifically have painful bowel movements or they have blood in their stools. And so working with the GI doctors can be helpful sometimes. You can also have abnormalities of the pelvic floor. So the muscles that make up kind of like a hammock in our pelvic floor. There’s a whole, series of muscles and you can start out with endometriosis but then have problems with the pelvic floor muscles as well. Spasms of the pelvic floor muscles, pain with the pelvic floor muscles, and there’s a number of treatments that I can provide for that. But we also work really closely with pelvic floor physical therapists who can help manage some of those symptoms, as well. So there are a lot of different things to consider when we’re treating somebody for chronic pelvic pain. Whether it’s just around the time of their periods, or it’s all month long, or as you mentioned, sometimes it can change as time goes on. So, it starts out, it’s just with someone’s periods, but then it gets worse over time. I think also the idea of like what’s normal is really hard for people, Barbara. Like —

Barbara Schindo – Mm-hmm.

Dr. Kristin Riley – — you know, “I’ve only experienced what my periods are like, so is this normal or not?” Is a question patients ask a lot. And sometimes they ask that question to their mom or their sister who isn’t – they aren’t unbiased people. Their genetics are similar and they may have also experienced really painful periods and then tell that person, “Oh yeah, that’s normal.” Where all three of those people might be experiencing really bad symptoms. So, it’s hard, yeah.

Barbara Schindo –  That is a really great point that you – I have never – I had never thought of that before. But, you know, I only have my own experience or the experience of, you know, my family or friends that I may talk about when I say —

Dr. Kristin Riley –  That’s right.

Barbara Schindo –  “This happened to me. Did this happen to you?” And one of the things you mentioned is that endometriosis is very hard to diagnose. So if you’re having – this is a big variety of symptoms that could it could be a lot of things, you know. What do you suggest to patients? When should they – when might they have endometriosis and when should they ask their OB-GYN about it?

Dr. Kristin Riley –   Yeah, so when should they ask? I think one of the difficulties is because it’s so hard to diagnose, it can take a really long time for patients to get to that diagnosis. On average, patients can suffer for seven to 10 years with endometriosis before they get a diagnosis. And so I think asking about it early is always good. Talking to your primary care doctor, your OB-GYN, but if you feel like you still think, “I might have endometriosis,” coming to see somebody like me who this is all that we do here, can be helpful. And it’s great because we have this sort of multidisciplinary team that can help with all these different pieces of it.

Barbara Schindo –  Mm hmm. You are watching Ask Us Anything About Pelvic Pain with Dr. Kristin Riley. Dr. Riley is the interim chief of the Division of MIGS, and again, MIGS means Minimally-Invasive Gynecological Surgery here at Penn State Health Obstetrics and Gynecology. Dr. Riley is talking about pelvic pain and endometriosis. If you have a question for Dr. Riley, whether you’re watching this live with us now or if you’re watching this on playback. We put your – please feel free to put your question in the chat and we will get an answer for you. So I wanted to bring back up something that you had mentioned, which was pelvic floor physical therapy. Which is something that, you know, I feel like I’ve been hearing a little more about in the recent, you know, recent years. I think it wasn’t something that was a really well-known treatment. Is that, you know, how many patients do you typically work with that you use this kind of treatment and what kind of patients would it be helpful for when they have pelvic pain?

Dr. Kristin Riley –  Oh, a lot of our patients seek therapy from a pelvic floor physical therapist, but you’re right. Often when I bring it up as a treatment option, patients say they’ve never heard of a pelvic floor physical therapist. And their skills have been available for a long time. We have two pelvic floor physical therapists here at Penn State Health who all they do is focus on women’s health, pelvic floor PT. And but there are a lot in the region. So, when I see patients, physical therapy is something that often you need to go on a weekly basis. So there are a lot of pelvic floor physical therapists in the region, in the state. And so easy for us to kind of find someone more local for a patient if they don’t live close by to the Hershey Med Center and they want to see a physical therapist somewhere else. But really, they’re focused on the muscles and how the muscles can change over time. They can change to the point where they’re causing pain, but they can also change back. It’s just it’s challenging and it takes a lot of time and effort, but it can be really helpful for patients with a number of conditions. Pelvic pain, also can be helpful for patients who have prolapse and other conditions. But for my patients, we pretty much focus on pelvic pain.

Barbara Schindo –  Mm hmm. Now back to more specifically questions about endometriosis. So as I mentioned, there’s no known cure for this, but there are different treatment options to help manage your symptoms and manage pain. You know, what kind of treatments are used for endometriosis?

Dr. Kristin Riley –   That’s right. So, we think about endometriosis like a chronic inflammatory condition that there is no perfect cure for, at this time. But there are a lot of treatments and really individualizing therapy to the specific patient is what we try to do. So when I meet somebody who has endometriosis or thinks they might have endometriosis, I ask them a lot about the treatments that they’ve already tried, and what’s worked, and what hasn’t worked. Treatments include things like hormonal therapies. So we use medicines like birth control pills, oral progesterones. The progesterone IUD can be helpful for managing symptoms. We also use a lot of different classes of pain medications depending on the type or the quality of the pain that the patient has. In addition, surgery plays a role, as well, and some patients, surgery is the mainstay of diagnosis, at this time. There’s a lot of research happening about non-invasive techniques of diagnosis, but none of them are really available right now. So the only way to know for sure if you have endometriosis is to do something called a diagnostic laparoscopy. Where we make small incisions on the patient’s abdomen and look in the pelvis directly with a long skinny camera called a laparoscope. And if we find endometriosis, we remove it. The difficulty is that it can come back. So surgery is really helpful to get the diagnosis and to get some relief from pain symptoms. But using some of those medical treatments or some complimentary treatments, as well, can give you more long-term relief after surgery. And so there isn’t one easy treatment and really that sort of individualized approach can be helpful.

Barbara Schindo –  Mm hmm. Okay, thank you, Dr. Riley. We do have some questions coming in on our social media. And again, if you are watching this live or on playback and you have questions for Dr. Riley about pelvic pain, about endometriosis, please put your questions in the chat. So our first question is from Kristi, and Kristi is asking about diverticulitis and endometriosis. And I think what Kristi wants to know is how do you manage the pain through both of these while you are getting your diagnosis? Well, both of these things can be hard to diagnose and, you know, what are your recommendations on managing pain for somebody who thinks they may have one or both of these? And they’re not certain, yet.

Dr. Kristin Riley –   Yeah, certainly seeking care from a GI doctor is really important and I mentioned that early – earlier, that we work really closely together as a team. And that’s one of my favorite things about working here at Penn State Health is that there’s a great team of subspecialists who can help us manage these difficult problems. Often, the GI doctors and nutritionist will talk a lot about dietary changes that can be helpful, and these dietary changes can help some of the GI symptoms, but they can also help endometriosis. Again, that individualization of – or individualized care that we talk about. So, looking at your specific diet and trying to figure out if there’s any dietary triggers can sometimes – can be helpful for both diagnoses. If you’re having bowel symptoms such as constipation, or diarrhea, or pain with bowel movements. If you get those things under control, often, endometriosis symptoms will get better, as well. So, I think, again, really important to collaborate together to get you to the relief that you need.

Barbara Schindo –  Okay, thank you Dr. Riley and thank you to Kristi for your question. Again, anybody who’s watching this, whether live or on playback, and you have a question for Dr. Riley, please feel free to put your question in the chat. Also, please feel free to share this post. So, if you, you know, anybody in your life who you know might be having pelvic pain or might be thinking they have endometriosis, please feel free to share this post. And we, you know, we’ll help get all of these questions answered. So, Dr. Riley, another – something I had wanted to ask you. When we talk about diagnosis being difficult for endometriosis, you know, as I mentioned, I know in my personal life, I know some women who have endometriosis. And it took some of them quite a long time to figure out, you know, what was the cause of their chronic pain. What’s your advice for patients who may be feeling frustrated when they – it’s taking a long time to figure out what’s causing their pain and arrive at a diagnosis? What – how do you, you know, advise those patients?

Dr. Kristin Riley –   It’s hard. I think getting to the right person is really important and general OB-GYN doctors are great and some of them have more experience with endometriosis than others. But general OB-GYN doctors have to take care of a lot of different conditions. In our practice, we can focus just specifically on endometriosis chronic pelvic pain. So I think if you aren’t getting the answers that you’re looking for, seeking another opinion for any problem is never a bad idea, right? So talking to another clinician or surgeon can be really helpful. Talking to other people is helpful, too, but as I mentioned, everybody has sort of different symptoms, and so it’s a little bit hard to just by talking to other patients, you know, is this endometriosis? It’s sort of hard to know. I think it’s helpful to get some support from other people and a lot of patients use these online Facebook groups to get support from people who are going through similar things. And I think that’s a valuable resource. What I always tell patients, again, is it’s very different from one person to the next. And try to take some of the things that you hear from friends, or relatives, or other people on Facebook, or other social media sites with a grain of salt, right?

Barbara Schindo –  Mm hmm.

Dr. Kristin Riley –   That everyone’s experience is a little bit different and everybody’s goals are a little bit different, too. Some people really want to be pregnant. They really care about the infertility piece of it, and other patients had no problem getting pregnant at all. They just really need some relief from their pain.

Barbara Schindo –  Mm-hmm.

Dr. Kristin Riley –   And so, I think that’s an important thing to keep in mind when you’re on that journey is that, you know, it’s helpful to seek feedback from other people who have been through it. But everyone’s experience is a little bit different.

Barbara Schindo –  Mm hmm. And what other types of – or types of diagnoses or other, you know, chronic issues might also be related to pelvic pain? Is there anything else that you do a lot of work with in your practice?

Dr. Kristin Riley –   So, you know, some of those other diagnoses that I mentioned. A lot of our patients have bladder issues, bowel issues, irritable bowel syndrome can also co-occur with endometriosis. So, again, making sure that you’re seeing all of those people can be helpful. Painful intercourse, pelvic floor spasm can be a big issue for a lot of patients. We do treatments, you know, pelvic floor physical therapy. Patients who can’t go to PT for some reason, maybe it’s too painful, we also use Botox to help with the pelvic floor muscles.

Barbara Schindo –  Wow.

Dr. Kristin Riley –   Which is sort of a newer treatment that we use. You know, I kind of mentioned some of those hormonal treatments. There are some newer medicines that are available specifically for endometriosis, as well, that we use. So it’s really a multimodal approach to manage all of those issues.

Barbara Schindo –  Mm hmm, and what, you know, what age range of women might get endometriosis and start experiencing this pelvic pain? It’s I just ask because it’s not necessarily always younger women, right? Like some – it’s – would it be possible for a woman to have a regular period for decades and then, you know, develop this chronic pain and possibly endometriosis?

Dr. Kristin Riley –   Absolutely. The progression of endometriosis really varies a lot from person to person. It can occur in teenagers. I’d say the bulk of patients that we see are in their 20s to 40s. So those are the majority of patients, but I also take care of teenagers, and rarely, it can also occur in menopause. So even women in their 50s, sometimes I take care of them with endometriosis symptoms. So it’s a really wide range of patients. Some people have had normal periods for decades and then you’re right. Something changes and it gets worse. Some patients feel better during pregnancy, but not everybody. Some people actually feel worse during pregnancy. In addition, some people feel a little better after pregnancy. Some people feel worse after pregnancy. It can also have this pattern where you just feel better. You randomly get some relief with a treatment and things are great for a while, and then you have what we call pain flares, like [inaudible] time you just kind of have these spikes of pain. And so it’s really hard to kind of predict that, as well. Patients want to know like how long is this going to work, and unfortunately, we can’t really predict that.

Barbara Schindo –  Mm-hmm. Well, Dr. Riley, you have offered a lot of really helpful information. I have really enjoyed chatting with you this afternoon. And I’ll ask you one more question, too, before we wrap up. And before I do, I’ll say anybody who’s watching this, if you happen to catch it on playback and think, “My question – I have a question that wasn’t addressed here.” Please feel free to put your question in the chat at any time. We’ll get your question to Dr. Riley and her team and we’ll get an answer for you on social media. So oops. Sorry, there’s my cat. She has a question, too.

Dr. Kristin Riley –   That’s right.

Barbara Schindo –  I apologize. So my last question for you is anybody who is experiencing chronic pelvic pain or listens to this, watches this, and think, “Maybe that’s me. Maybe I need to see to see a doctor.” How can they get in touch with your department?

Dr. Kristin Riley –   So the number to call is (717) 531-3503 and that gets you to general OB-GYN. And then if you’re hoping to see us in the Minimally-Invasive GYN Surgery Group to talk specifically about endometriosis. You could ask to see – you can ask for that group or you can ask to see myself or my partner, Dr. Arpit Davé. And then if we think you need to see one of the other subspecialists in the chronic pelvic pain group, we can help you get to them, as well.

Barbara Schindo –  Okay, great. For anybody watching, we can make sure that we get that number in the comments so that you have that information available for you. Dr. Riley, thank you very much, again, and I really thought my cats were going to be distracted because I left a snack out for them. And I was like this will be fine. They won’t bother me because they’ll be worried about their snacks, so. Well, again, Dr. Riley, thank you so much for joining us and thank you for watching Ask Us Anything About Pelvic Pain.

Dr. Kristin Riley –   Thanks, Barbara.