Ask Us Anything About… Endometriosis

Description: The video begins inside the Penn State Health Milton S. Hershey Medical Center. Two people are standing next to each other inside a conference room located inside Penn State College of Medicine. Standing from left to right are Barbara Schindo and Dr. Timothy Deimling.

Barbara Schindo – From Penn State Health, Milton S. Hershey Medical Center, you’re watching “Ask Us Anything About Endometriosis.” I’m Barbara Schindo. According to the American College of Obstetricians and Gynecologists, one in 10 women are affected by endometriosis. Today, we will learn a little bit about diagnosis and treatment options for women with endometriosis. I am joined by Dr. Tim Deimling with obstetrics and gynecology at Penn State Health. Dr. Gerald Harkins was going to join us as well, but he is in the OR today. So we are here with Dr. Deimling. We welcome your questions for Dr. Deimling about endometriosis, whether you’re watching this live, or if you’re watching on playback. Just type your question in the comment field, and we’ll get an answer with Dr. Deimling for you. So thanks very much for joining us today.

Dr. Timothy  Deimling -Thank you very much for having us.

Barbara Schindo – So let’s start with kind of the easy one. What is endometriosis, and are there different stages of this disease?

Dr. Timothy  Deimling -Yeah, no, I agree that’s a good place to start. So if we think — what is endometriosis? You know, if you look at a textbook diagnosis of endometriosis, it’s going to say the presence of glands and stroma outside the uterus, but what does that actually mean? What we’re talking about when we say that are — these are the two cell types that make up the normal endometrium, or the lining inside of the uterus. And that’s the part of the uterus that builds up and gets nice and thick in preparation for pregnancy, and if you don’t get pregnant, then that breaks down and sloughs off. And that’s when a woman has her menstrual cycle. Well, if these cells begin to grow anywhere in the body they’re not supposed to be, that, by definition, becomes endometriosis, and it’s made up of those two cell types. And yes, there are stages of endometriosis. So there are four stages of endometriosis, one, two, three, and four, and the amount of endometriosis or locations of endometriosis tend to be worse, the higher the stage is, with one being the least, and two being — excuse me, and four being the most significant. Interesting thing about staging is that many women’s symptoms don’t really correlate with stage. So staging is really, as much as anything, a way for one physician to talk to another physician about how the endometriosis is distributed in the pelvis, but there are many women that will have stage one endometriosis with very debilitating pain symptoms. And other women may have stage four endometriosis, and they may not even know that it’s present. They’re not having really any symptoms from it. So this staging is important, but it’s something not to get too hung up on.

Barbara Schindo – Okay, that’s useful. What — how does somebody know if they might have endometriosis? You know, what are the symptoms they should be looking for, and how do you diagnose it?

Dr. Timothy  Deimling – Yeah, so, you know, the classic symptoms of endometriosis are cyclic pelvic pain associated with your menses. Oftentimes, it’s the week right before, and sometimes, the first part of your menstrual cycle where the pain is most significant. And then, many women will have some period of time where they’ll have, like, a reprieve from symptoms following their menstrual cycle. What we do find is that the longer a woman has endometriosis, oftentimes, it begins to happen earlier in the cycle and last longer in the cycle, to where they can eventually get to a point where they really have very little time without pain associated with it. The diagnosis is very challenging, and this is one of the reasons there’s often delays in diagnosis, is because we don’t currently have a blood test or urine test. It doesn’t tend to show up on ultrasound, MRI, or CT scan. So there’s a bi challenge. So they have the pain that’s predictable, but the evaluation — unless somebody’s looking specifically for that, or thinking specifically about it, it’s very challenging. So the definitive diagnosis of endometriosis is done with surgical excision and pathologic evaluation. So that’s how we get the definitive diagnosis, but for many women, we’re able to offer relatively low-risk treatments based on the classic symptoms without having to have a surgery before we initiate treatment.

Barbara Schindo – So I had mentioned that one in 10 women suffer from endometriosis, and you had mentioned that it can be a little bit challenging to diagnose. And I’ve also — one of the things that I’ve heard about it, and I think a lot of folks have heard about it, is that a lot of women have felt like they’re being brushed off when they’re talking with a doctor or provider about their symptoms. And then, like, they’re kind of saying, “Oh, that’s normal menstrual pain. There’s nothing wrong.” You know, what would you — what kind of advice do you have for women who say — if you feel are not being taken seriously, and that it’s just kind of being brushed off?

Dr. Timothy  Deimling – Yeah, I think this is a very important point. You know, as you mentioned, there’s often a delay in diagnosis, and for many women, this is six to 10 years of symptoms before they get the diagnosis. I think the most important thing for women with endometriosis is advocacy, and the most important first advocate is yourself. So you’ve got to advocate for yourself. Information is at everybody’s fingertips right now, whether it be on Facebook, whether it be, you know, anywhere else. And so, women in general and all of our patients in general are becoming more educated, and so, advocating for yourself, and, you know, asking those questions, and feel empowered to ask the questions in the clinical visit. Because if your provider’s not willing to address those questions, then maybe it’s time to find a provider that will address those questions, and is at least willing to talk about it. Because — so I think that’s the key, is feeling empowered to ask questions and seek treatment.

Barbara Schindo – Okay. You are watching “Ask Us Anything About Endometriosis” with Dr. Tim Deimling at Penn State Health. We welcome your questions for Dr. Deimling, whether you’re watching now live, or if you’re watching later on playback. Just type your question in the comment field, and we will make sure to get an answer for you. So one thing you had mentioned is finding a provider is an important part. And we are going — so I just want to let folks watching know that we’re going to put some information in the comment field about how to — you know, if you think that you may be suffering from endometriosis, or you think you –if there’s somebody here you’d like to make an appointment. We can put that information in the comment field for you, so there will be a number for you to call.

Dr. Timothy  Deimling – Great.

Barbara Schindo – So after a woman is diagnosed with endometriosis, what are the treatment options?

Dr. Timothy  Deimling – Right. So, really, initiation of treatment with a diagnosis is all about reducing inflammation. What we know about endometriosis is, one, we really don’t have a cure at this point. So we often tell women in our clinic that, at least at this point in time, endometriosis is a forever diagnosis, and what we spend is a lot of time learning how to improve quality of life, manage symptoms to make this much less impactful. But knowing that, even under the best of circumstances, once in a while, endometriosis will have a tendency to remind you that it’s there, but the first-line treatment for endometriosis is really trying to suppress the menstrual cycle. And the reason we do this is, as I said, it’s responding to inflammation. The most common recurrent source of inflammation in a female’s pelvis tends to be their uterus right before it bleeds. There’s a lot of inflammation that happens there. So if we can suppress the endometriosis — excuse me, suppress the menstrual cycle, and we’re not getting this recurrent source of inflammation stimulating these nerves around these endometriosis lesions to send that knife stabbing and twisting pain that these women often report, then that in and of itself can often provide some significant symptomatic relief for a period of time. There are other medical treatment options. So we often will talk about medications that will treat specifically neuropathic pain. These could be medications like gabapentin, Cymbalta, those kind of medications, or if you’re — a combined oral contraceptive pill, which is what we oftentimes use to suppress the menstrual cycle, so just a regular birth control pill, but you take them in a different way. You take them in such a way that you skip your menstrual cycle every month to avoid that inflammation.

Barbara Schindo – And that will help avoid some of that pain, and some of that —

Dr. Timothy  Deimling – Absolutely. And then —

Barbara Schindo – — I just want to quick mention — if any of you are hearing the very loud noises, there is construction happening right above us. So nothing to be concerned about. So I’m sorry to interrupt.

Dr. Timothy  Deimling – — no, that’s okay. And then — so those are some of the medical options for treatment, and then there are also surgical options for treatment. So as mentioned before, surgery really is the way we diagnose the endometriosis, but it can also have a therapeutic benefit. So if we excise these lesions of endometriosis, it does offer symptomatic relief, but often, you get your best long-term results with some combination of both surgical intervention along with hormonal suppression to really give you your longest interval of time without recurrence of symptoms.

Barbara Schindo – And I think we have a question here from a viewer. Wanda [assumed spelling] wants to know, “Do providers believe that endometriosis pain will end after a hysterectomy, or” — she says she’s been told that is not possible. If somebody gets a hysterectomy, will that take care of all their pain?

Dr. Timothy  Deimling – Thanks for writing your question, Wanda. That’s a great question. So what we know for certain is that, like I mentioned before, we don’t have a cure for endometriosis. And there are providers — and we’ve seen circumstances, too, where it will be implied that, because you’ve had a hysterectomy with or without the removal of your ovaries as well, that this pain cannot be associated with your endometriosis any longer. And what I can tell you is that we see the opposite of that frequently, to where women who have had hysterectomies, women who have had removal of their ovaries will still have active endometriosis lesions, and still have symptoms. Many times after a hysterectomy you do get improvement in your symptoms, but that goes back to what I mentioned before. Because the uterus is such a source of inflammation in the pelvis, that removal of the uterus likely decreases that recurrent inflammatory process, and gives symptomatic relief. So many women will report improvement of symptoms after a hysterectomy, but it doesn’t guarantee that you’ll never have symptoms again.

Barbara Schindo – And we do have another question, too, from Pamela [assumed spelling]. She wants to know — you had mentioned this a little bit, but I think this is a little more specific. Is diagnosis for endometriosis only made laparoscopically?

Dr. Timothy  Deimling – There are a — that’s the most common way to diagnosis endometriosis, for sure. You could technically do it via laparotomy as well, which is a big, open incision, but at this point in our society, we — most gynecologic surgeons are doing everything laparoscopically, and should be able to get a diagnosis just with laparoscopic surgery. There are a few circumstances in which you can diagnose endometriosis without laparoscopic surgery. There are a couple of cysts that form on ovaries, for example an endometrioma, which has very classic appearance on ultrasound, where you can have a high enough suspicion that you feel comfortable saying yes, this is your diagnosis, just based on the ultrasound. But that’s a very small subset of patients. We’re routinely saying, like, we’re going to treat you for endometriosis independent of whether or not we know for sure you have it, because even if it’s not endometriosis, and it’s cyclic pelvic pain, you tend to have similar benefits, okay? But if we get to a point where we’re in a treatment pathway, and you’re not responding to these treatments, a lot of times, at that point, we’ll for sure say, “Hey, maybe we should do a laparoscopy, and make sure we’re actually dealing with what we think before we continue to progress down the treatment pathway.”

Barbara Schindo – Okay. You’re watching “Ask Us Anything About Endometriosis” with Dr. Tim Deimling. We welcome your questions for Dr. Deimling, whether you are watching here live, or you’re watching on playback. We will get an answer for you. And if you feel like the information in this — if this “Ask Us Anything About” is very useful, or could be helpful to somebody you know, please feel free to share in your own timeline. And I want to go back to — we had talked about some of the treatment options, and one of the options you had mentioned was surgical treatment. So how can you know when surgery is needed to treat endometriosis, and, you know, what kind of surgery is it like?

Dr. Timothy  Deimling – No, this is another good question. You know, that’s such a personalized decision. And so, one of the things we strive really hard to do here is take every single individual and have an individualized treatment plan for them. And, you know, there’s a dialogue that occurs between us, as the provider, and the patient that’s really important in making that decision as to how much is the endometriosis impacting their quality of life. What are the anticipated long-term outcomes from surgical intervention, and how are we going to also continue to manage after surgery to decrease the likelihood of needs for, you know, multiple recurrent surgeries? But — so that decision is oftentimes based on if you’re having refractory symptoms in spite of treatment. Then you will consider looking again to say, “Hey, you know, do we need to do some excisional process in conjunction with this, to improve symptoms?” Or, you know, at some point, if a woman has been trying multiple different treatments and different excisional processes, then that also — the discussion of, you know, do you — what are your fertility desires? Do you want to move with a hysterectomy or something like that to help alleviate symptoms more long-term?

Barbara Schindo – And is it — is most of the surgical procedures for these types of treatments minimally invasive?

Dr. Timothy  Deimling – Yes. Here, we do over 97% minimally invasive for these types of procedures. Rare is the circumstance in which you would have to do a laparotomy, and that’s great in multiple reasons. They have lower infection rates. You have lower hospital — length of hospital stay. You return to work much more quickly, on the order of half as the amount of time needed if you have to do a larger incision. And so, here, we try very hard to accomplish all of these surgeries with a minimally-invasive approach, whether that be laparoscopic, robotic, or vaginal.

Barbara Schindo – Okay. And on top of surgical treatment options, other treatment options, I know that here at Penn State Health, and at the College of Medicine, you are also working on a lot of research related to endometriosis. Can you tell us a little bit about that?

Dr. Timothy  Deimling – Yeah, that’s the part I’m always excited to talk about. You know, we think it’s very important to be at the forefront of the treatment of endometriosis here, but we also think it’s important that we contribute to the development of new information. As we’ve talked about before, we don’t have a cure for endometriosis. It’s a very challenging disease to diagnose, and so, we have multiple clinical trials that are ongoing now, some of which — in which we’ve partnered with industry to look at new drugs that would be available to treat endometriosis. And we also have other studies that are ongoing, looking at treatment options that were developed by us. We’re having funding from the National Institute of Health to evaluate treatment options. We’ve also had studies in the past where we’ve partnered with other institutions, gathering tissue, and gathering demographic data to try to see — can we develop some biomarker, or can we develop a noninvasive test that would help us lead to the diagnosis? So we are always looking for — providing the opportunity for local women, regional women to participate in these studies, so that they can, one, be at the forefront of what treatment options are available. Two, help contribute to a disease process they’re all very frustrated by.

Barbara Schindo – And we will also put in the comment field here, as Dr. Deimling mentioned, multiple ongoing clinical studies. We will put information in the comment field about how to find out more about those, if that might — may be something you are interested in, or perhaps you know somebody who may be interested in participating in the study. We have another question from Pamela, and Pamela wants to know, “Do you feel like diet could relieve pain from endometriosis?” Changing your diet, would that be helpful?

Dr. Timothy  Deimling – Yeah, I think the short answer is yes. The longer answer is, we’re not exactly sure how. I think that is somewhat individualized for women as well. We do know that inflammation plays a role, and there’s more and more data saying that the food we eat impacts how our entire gastrointestinal tract function, and just generalized inflammation in our bodies. So we’re oftentimes telling people to try to follow some version of a low — anti-inflammatory diet, or also doing things like keeping a food diary to say, “Hey, you know, I notice if I eat X, Y, or Z on a regular basis, then that helps — I mean, either — then that exacerbates my pain, right? So it increases my pain, or makes me more likely to have a flare.” That’s most likely related to just localized inflammation in the GI tract related to a food you’re eating that, in somebody that doesn’t have endometriosis, they may not have this pain symptom. But when you’re already sensitized and — to this inflammatory process in the pelvis, that can really cause some major problems for endometriosis.

Barbara Schindo – One of the other things you had touched on briefly was talking about fertility desires, and how that becomes a part of the treatment plan. So will endometriosis affect a woman’s ability to become pregnant?

Dr. Timothy  Deimling – Yeah, endometriosis absolutely can affect the ability to become pregnant, but it’s almost important for women with endometriosis to know that they can still become pregnant. We have seen cases where women have been told, “Well, if you have endometriosis, you won’t be able to get pregnant,” and so then, they don’t take — they don’t use mechanisms to protect themselves from pregnancy. And so, then they unexpectedly become pregnant, but many women with endometriosis do have the ability to get pregnant, and have the ability to get pregnant spontaneously. If we look at numbers, around 40% of women that have infertility will also have endometriosis. So we know that it plays a role, but by far, most women with endometriosis are able to have children. And if you’re getting — if you are going for laparoscopy, or having other things done, something that we also tend to evaluate at the time of laparoscopy is we want to evaluate your anatomy. We want to make sure that your Fallopian tubes are normal in appearance, your ovaries are normal in appearance, and there are other things we can do, like flushing the Fallopian tubes with saline or a dye to make sure that they’re open. And these can help improve pregnancy rates, and give us some real information to give back to that individual patient about what we would expect for their fertility.

Barbara Schindo – Okay. You are watching “Ask Us Anything About Endometriosis” with Dr. Tim Deimling. Dr. Deimling has been offering a lot of very useful and helpful information about endometriosis. Anybody with questions about it, or anybody who would like to maybe make an appointment, or speak with a provider, we will put the information — where to call in the comment field here. So what kind of support networks are available for women who have endometriosis? I know one of the things that we do here is Hershey Medical Center hosts a conference every year. Can you tell us a little bit about that?

Dr. Timothy  Deimling – Yeah, that — we’re very excited. This is actually our fourth year, but our second year of having this conference in a slightly different format. We’re putting together a two-day conference that’s going to serve dual purposes, because we really felt there was a need in the region for both. It’s going to be March 27th and March 28th, and the first day of the conference is really focused on educating regional providers. So what we’re trying to do is, we’re gathering experts from all around the region. So we have representatives from major universities from all around the region that’ll be coming and speaking about endometriosis, because that’s what they’re passionate about, and what they do at their home institution. And our goal is really to educate providers in the region, whether it be nurse practitioners, or midwives, family physicians, OB/GYN, general OB/GYNs, or anybody that just has a patient or thinks that they might have patients with endometriosis. We want to provide you education about all the things we’re talking about today — the diagnosis, the treatment. You know, how are we capturing these women? How are we closing that gap in the delay of diagnosis, you know, to shorten it from six to 10 years? And then, the second day of the conference is really focused on the patient. So we bring in a lot of local experts, whether it be a nutritionist, or a physical therapist, and ourselves are often involved, and oftentimes, fellows — so physicians that are training in the specialty that we’re training in. And our goal there is to provide education to the patients, but also to provide a platform where the patients can come together and mingle amongst each other. And so, it’s a relatively unique conference format. I haven’t seen many like that, where you really have a dedicated day for providers, and then a dedicated day for the patients to really expand the knowledge of the local community about endometriosis and its treatment.

Barbara Schindo – Yeah, that sounds like a really fantastic resource, not only, as you mentioned, for providers, but also patients, not only to be kind of getting educated, and learning some things, but also meeting a lot of people who are going through what they’re going through, so they can find a vast support network there as well. And we can include some information on that conference in our comment field as well.

Dr. Timothy  Deimling – Yeah, and what’s even more — and one of the unique things that we — some of the feedback we got last year is we do have lunch there. And at these lunches, our speakers all kind of go sit down at the tables with our patients, and it’s a unique opportunity to kind of informally interact with the speakers that are there as well. So it’s a great opportunity hopefully for patients to get information that they’re craving.

Barbara Schindo – Yeah, that’s wonderful. We have another question. We have a question from Daisha [assumed spelling]. She says she was just diagnosed with stage four endometriosis with a mass constructing the Fallopian tubes. What are her — what’s the best option for her to become pregnant?

Dr. Timothy  Deimling – Yeah, I mean, I think that without seeing what’s going on with the individual Fallopian tubes in your specific case, it’s difficult to answer. Because you really only need one functional Fallopian tube to successfully get pregnant spontaneously. It sounds like, in this case, at least one of them is compromised, but it really has something to do with what the other Fallopian tube looks like. What does the rest of the anatomy in your pelvis look like? So we do often recommend for our patients that do have significant amounts of endometriosis that they — we may end up having them seek the care from fertility specialists a little earlier in the process than we would a woman without endometriosis, just because we know there’s a risk for some infertility there.

Barbara Schindo – Thank you. And I want to say thank you to Dr. Tim Deimling for joining us today, for “Ask Us Anything About Endometriosis.” We’re going to wrap up the live portion here, but if you are watching this on playback, and you — there’s still something that you want to know that Dr. Deimling hasn’t already spoken about or answered, please feel free to still put a question in that comment field. And we will get that to Dr. Deimling, and get an answer for you. Thanks for watching.

Dr. Timothy  Deimling – Thank you.