Nurses Conference 2013 - Endometriosis Assessment Guide and Appointment Preparation
Tracy R. Shaltis, BSN, RN
I have a personal investment with this because I also suffered for many, many years with endometriosis. I am a nurse, I became a nurse ten years ago as a career changer and part of that I am going to speak a little bit briefly about. I know some of you also saw this last year so it is nice to see your faces back and also to see some new faces. We will touch a little bit on a few things that you may have heard before, albeit, briefly.
When I became a nurse I thought that gave me a little bit of more recognition and strength in being able to be given a little bit more respect when I said that something was wrong with me when everyone else said, "There's really nothing wrong with you" or that it had to do with my GI system. I went through that whole battle with doctors, the psyche issue thing, which as I mentioned last year, if you talk to people who know me they might just say, "Okay, maybe a little bit with that. She's a little dense..." But anyway, when you are told that and you are told it over and over again it is very difficult to not start to think, "Am I crazy? Is this something that I'm really not feeling? Am I conjuring this up?"
This disease has been a battle for many, many, many of us. What we are doing here with Endofound, and especially today having all of you in this room, is to make sure that young girls and women do not suffer through what we have all suffered through, those of us who have come and said our stories. I have to relay also back to Padma because she has such a powerful story. And hers ended in such a beautiful thing with her daughter. For those like Lisa and I, I also went through years of infertility, the treatments, the over my head in debt because it is not cheap to do that and it is not easy to do that and most insurances do not cover IVF, and adoption, and all those kind of great things. Had I been diagnosed earlier it might have given me the opportunity to have the child that I desperately wanted. Part of my being here and what we are doing with our outreach program also is to help those young women to not have to go through that or suffer like I did.
I know it was mentioned before that this is something that can affect you throughout your life but also after, even after you have had treatment because that little bit of your life if you wanted a child and could not have one it is always going to sting. It is always going to hurt a little bit. If we can help just one person to never have to deal with that or go through that or feel that pain, in addition to all the physical pain, all the isolation that they go through when they are young girls. This is why it is so important and we are asking for your help and we are so happy to see all your faces here today.
Again, I want to echo Padma with saying get out there, get the word out, tell people and let these young girls know that it is not embarrassing it is okay. This is just another part of your body as if your arm was sick or you broke your leg. This is just another part of your body and it is really okay for us to start talking about this and getting the word out there.
What we did was - I am going to jump right into this - we came up with an assessment guide. We feel that this is really important, especially for those of you who deal with the population of younger girls such as school nurses, those in obgyn offices but really all of us. I am sorry I did not turn around when they asked, how many are nurses in here, in the room? Okay great, wonderful! It is kind of fun, hopefully maybe you will think this is funny. I am a hospice nurse. I told everybody last year do not be afraid, that is okay. One of the things that I have been taught in hospice is the same thing that I think we all learn as nurses. What is our main thing? It is to care for a person. Hopefully I can say that is why we all got into nursing because we care and we love what we do and we love to reach out to people and say, "I'd love to help you let me find out how I can do it". If we do not know how to help maybe we can find out. That is a really important piece of this. We can no longer say, "You know what that's what your period is supposed to feel like". Nah, hmm, I learned in hospice that when a person says something is wrong or says they are in pain my ears need to perk up, my eyes need to perk up and my mind needs to find a way to meet them where they are and to help them where they are. And that is what we need to do with these young girls.
Kids growing up - and I think we were probably like this when we were that age - but you know they are smarter than we give them credit for a lot. We have to listen to them and we cannot just allow them to go off into the distance and not be able to help them. We have to really listen, we have to meet them where they are, which is probably in a frightened, scared place.
We were hoping that this assessment guide would be kind of an in with that to help and to understand and to be a way that we can facilitate that open discussion and also to bring up a conversation about it, have these girls be able to talk to their parent or guardian and also to their doctors about it. Any nurses who are involved with the care of young girls and young women, I believe, and the Foundation believes, that we should start to assess these young women the same way we assess for any other childhood or female diseases. We have a questionnaire. You always have these long questionnaires we talked about that before too, somebody says, "I filled out all the paperwork". All this paperwork that we fill out before we go in these should be questions that we are asking; are you having painful periods, are you having excessive bleeding, describing what excessive bleeding is for a young girl in school saying, "Do you bleed through a pad or a tampon in one class or in one hour? Are you crawled up in a ball? Are you missing out on your life, sports and dance and drama club and all the things that go along? Are you missing going out with your friends? This is a horrible, isolating disease. What comes with it is a lot of things that we talked about. The GI the GU problems, the back pain, the leg pain, the numbness and the migraines, I would stay in my room for months at a time. Dropped down to almost nothing, which I was small to begin with but you cannot eat, you cannot sleep, you are crawled up in a little ball. The doctors were happy to write tons of narcotics. But, you know that did nothing but steal away a lot of my younger days, my high school days.
It is important that we reach out and we really start to understand why this is so isolating for these girls and why we should screen early on. Like I said those questions should be asked, they should be out there. The screening should be age appropriate. Of course, depending on what age group you work with if you are working with girls who are a little bit younger, on the younger side of like when they are first getting their period around maybe 11/12, of course we are not going to focus so much on infertility issues as we would maybe with college age girls. I do not know if anybody here works with college age people, I know Sharon does. It is important that even though we are having somewhat of the same conversation weaving things in and out it is important to have age appropriate things to speak to these girls.
The survey that I am going to show you, the paperwork I am going to show you, it is important that it is non-threatening even though when we talk about the definitive diagnosis being surgery. Of course, it is frightening. It is frightening to a woman who is older because none of us want to have to think about that or deal with it, so we can only imagine what a young girl is thinking who most likely, hopefully, has never had to have surgery in her life. We really need to kind of gear it to say, "Listen, you know it is a surgery, it is invasive, however, it is not terrible, terrible. You know they are going to go through small little holes and they are going to look in there". It is important for us to make it in a dialogue they can understand. We want to keep the terms so they are more layman's terms but we also do not want to discount these girls by kind of dumbing it down too much because like I said, I think they are a little smarter than we think sometimes.
All of you have the guide in your folders in your bags if you can just bring that out. Sometimes it is a little difficult to see on these slides. We will just go over this briefly. The first page is the endometriosis screening tool. As you can see there are some directions on there as to how to use this tool or which way would be appropriate really to use the tool. There are three primary screening questions at the bottom. The screening questions, have you experienced so much pain around your periods that you are unable to attend school, work or social events? Very important because as one of our other speakers mentioned we want to look at this and say, "It is not always about when they come into the school nurse office or what. Let's look at - wow - they've been absent quite a few times" or "They're not showing up for clubs or they're not participating in social events. What is going on with this person?" Especially, you have your girls who might a little bit more shy and you have those who are very gregarious. If you are seeing that there is a change and you are the people on the frontlines you are right there dealing with these girls all the time. You know your students, you know if there are changes, so that is a really good point. Have you experienced heavy bleeding that lasts for more than the first two days of your period? We explain that and that can be elaborated upon saying you know if the girls are saying, "I can't make it through a class without running out", then we know that is a problem. Have you experienced recurring pelvic pain, which is pain in the lower belly because we want to tell them that, some might not understand exactly what, "Well what is pelvic pain?" Any time during the month where you do not have your period, which prevents you from participating in activities, causes you to take medications to relieve pain. I think this is an important point as well. We want to find out what these girls are taking, how much they are taking. A lot of what happened with myself, I know, because I would just dump anything down to try to relieve the pain. You do end up with gastrointestinal problems at that point because you are just burning holes in your stomach. A lot of times because of pain we all know when we are in pain we do not want to eat, we do not want to do things, we just take a pill and lie down, which all of us as nurses know is not a really good thing for your belly. These are these first three initial questions that should be asked.
We are going to go to the next page. With the following page if any of those three questions were answered yes, any of them, one or all three, two, it does not matter, you should probably go to this page and get this page filled out.
If you work in a doctor's office, obgyn office this is probably a good thing. You can go over this with the young woman in your office even if you are a school nurse. You hand this to the girl and you say, "You know what, if you answered just a couple of those questions, I don't want you to be scared, I'm not telling you this is what you have, but I'm going to help you by finding out. Maybe this isn't what you have but at least we're a step forward to make you able to have a better life again". Try to make it non-threatening. But this page goes into a little bit more detail as you can see. If they are really filling out a lot that is in that little box on the right, we know we are looking at probably, again, something to take us a little bit deeper, a little bit more knowledge about what is going on with these girls. If this form is sent home for the girl to fill out sometimes that can be a better thing because they may be more honest and you want to tell them that honesty is the best thing for this. You do not want them to hide their symptoms or lie about them, "You're not going to get in trouble, it's going to be okay and we're going to find somebody to help you. We want you to know that when you fill this out". That is probably a good way to start.
They can bring it either back to their parent/guardian and then we are going to talk a little bit more, further on, about how to elicit help and what is a good way to elicit the help. That is going to be our next page.
Just briefly going over this you can see the questions we have on the left hand side. This would be for somebody who may have already had these issues, and had they been diagnosed with ovarian cysts, and it brings into it about the exhaustion, the weakness. And also the genetic link as we talked about a few times, which we are finding more and more as the research goes on. Even just listening to stories, again, as nurses, what do we do at the beginning and end of our shifts? We report, right? We love telling stories. Well we do that, we love hearing about those patient's stories, we love hearing about what happened in their families, "Well, what about this, what about that?" We are finding that it is very, very important to know, "Did your mother suffer like this? Even if they weren't diagnosed, how were your mother's periods? Did you notice her being doubled over in pain..." When we started working on this tool it occurred to me that I remembered seeing my mother like that and it probably would have never occurred to me had I not thought about this. You know, lying on the couch with the headache, the nausea, and we were kids and she said, "You guys, you've got to just play right here so mommy can see you". But sick, sick, sick, sick, sick. Talking to her later realizing at 40 years old she had a total hysterectomy, really not knowing why, because they just said that she needed it. She probably had it as well. She probably had endometriosis and we did not know. So that is a very important question.
Going through those and then we are going to the next page. I know this has a lot on it but it is a very important page. This information sheet it is very thorough and informative but it can be administered to the patient, the parent or guardian and be reviewed by both. Important considerations are discussions with regard to preparation of physician assessment and appointment, and it encourages the patient or guardian to seek appropriate and compassionate care. We do mention this later down and I encourage all of you to read through these because they are really great, they are super important and I think that the language on them is wonderful. It really opens up, it will open up your mind a little bit more as to what to say and the things to say that are really good.
One of the things that I want to point out is how important it is to allow not only the young women that you are talking to, but the parents, the guardians to understand that because this disease can be very misunderstood, misdiagnosed and under-diagnosed, if they are not getting the answer they need or want from that first doctor they need to just keep on going. Whether it is two, three, four, I had five doctors. I had four botched surgeries before I found Dr. Seckin. That was by my own just at the end of my wits, going crazy looking everywhere for help. You have to be tenacious because this disease is also tenacious but what we are finding out there and the way doctors just wash their hands of it and say, "You're supposed to feel like that, it's called a period, you're a girl, suck it up". Yeah, you have got to, you have got to say, "No, I'm not going to suck it up anymore, I'm not going to do it". It is important to let the parents, the guardians and these young girls know it is not okay to feel that way. When your body is in pain it is telling you that something is very wrong. It is okay, we are going to help you to find out why but this is what you need to do. So please encourage anyone who you talk to to continue to get opinions until they find one that suits and somebody that can help them. That is really one of the most important things I think about this assessment guide. Again, make sure the information is appropriate for the age group.
Included with the assessment guide is a personal pain profile. This allows the young woman, or girl, to make marks on these bodies. Because we know that endometrial tissue can occur anywhere on the body, even though it is primarily in the pelvic area, pain can also radiate. Pain can be felt in many different areas. You want to encourage women about that and say, "If you're feeling pain somewhere else it may not be endometriosis at all but we just want to kind of know where all of your pain is". We have the key on the side so you can mark P over all the areas that they are having pain during their period, X over the areas which are any other time of the month and C where they experience constant pain, which can happen. We also encourage them to be creative with it, they can use different colors, they can use whatever suits them to help them to get that out.
We included a personal profile daily symptom tracker. This calendar is made to be used as a cyclic calendar so it should begin on the first day of the period and not on the first day of the month. We included boxes that are typical for the symptoms, however, there is another box but I think this is a great place to encourage young women and girls to open up a journal and get a little journal. Start to correlate the days. If there is not enough space for them or if there is something that they are not seeing on there it can be very cathartic for them to write a journal. The other great thing about not only the assessment tool and having this in front of you, but having a journal. I know for me I am a very visual person. When you see that in front of you and you start marking this up with red, it is one thing to say, "Ah, I have pain in a lot of..." When you look at that physically, or the girl looks at that, or their parents or guardian, or better yet their doctor, when they take this in and say, "Here, somebody gave this to me and this is how I'm feeling and I need you to know. I need you to help me". To look at that and go WOW, this is, this is taking this person's life. This is taking the quality of life away. That is where I believe having that piece of paper helps. To have that visual of this is a huge chunk of this young woman's life that is being affected by something let us find out what it is. Also the journal, as I mentioned, great for them for them to get it all out. How much medication they are using, what they are feeling, "I cried this day. It was so bad I stayed in bed all day". These things are really important and can be wonderful just for them to be able to have an outlet for it, as well as for us as nurses since we are the first people maybe we pick this up before the doctor does. We look at it and then we say, "This is wrong". So what is our job? To go to the doctor and go, "Hey, come on, I need you to look at this, come on - now. I'm not going to listen to you yell at me. Just look at this. And I want to help you with this". It is important for us to be a little tenacious too about all this.
That is our assessment guide and it is available on the website. I think you each have one copy in your file there. We also have our posters, which Padma talked about too. These are great. We hope that at some point you will go in every woman's bathroom anywhere that you go and you will see this because it is important for us to start making this more familiar, making it less frightening, making it less like, "Oh God, we shouldn't talk about that. That's a period, that's bad". We need to start talking about it more and more and more.
I know that we are going to be talking a little bit about our outreach program coming up and I want to mention that this is very, very important for us. We are hoping that you will all kind of be ambassadors for us as well. I did one presentation in a school. It has been a couple of years since I was in high school or a couple of decades, so I was not sure how it was going to be received because it was boys and girls. I have to tell you one personal experience. Not only did their ears perk up and you start saying these things, you get a couple of snickers here and there, but there was one, a boy and a girl sitting together. They were boyfriend, girlfriend, and after we went through the whole thing he turned to her and he said, "I am so sorry and I'll never say anything to you again about when you have your period. I'm so sorry I didn't know".
So this is not just for us to be telling the girls about, this is for us to be telling everybody about. Padma mentioned it and I think a bunch of our presenters today mentioned it this disease affects everybody that surrounds us. It affects everybody that touches our lives and all of the lives that we touch. On that note, as nurses, that is what we do. We touch lives, we care about people. Sometimes we put our hunger aside, our thirst aside, our bathroom aside because there is somebody in front of us that truly, truly needs our help. It is important for us to do that, to listen, to understand a little bit more and to be able to help. You have the opportunity to change a woman's life, to save her from years and years of pain, infertility, lost relationships, lost careers and just fun. You have the ability to change the quality of life of a young woman and I hope that you do that and again, I thank you all for your kind attention for staying all day today. Thank you.