Heather Guidone introducing Wendy Winner
I would like to introduce Wendy Winner. Actually I have the good fortune of having Wendy in my life as a personal friend and a colleague. We have worked together, I have seen her in action, I know her reputation and I love her anyway. Wendy is probably the most well known, most well respected lightening rod of endometriosis nurses. She is an RNFA. She has worked on developing much of the technologies we use today. She set standards for nursing care to maximize patient outcome and she is going to talk to us, among a million other things that she does, about basically NO101 because we have heard what it is like to live with this disease, we have heard what it is like to live with someone who has this disease, and we have talked about our personal stories. We know that this disease robs lives, there is no question. But what Wendy and Dr. Seckin in particular are going to talk to us about today is really the who, what, when, where and why…how does this disease happen, what is endometriosis, what is our goal collectively? How do we work together to end the suffering? So please join me in welcoming my dear friend, Wendy Winner.
Thank you so much for inviting me on such a beautiful day to New York from Atlanta. I always love coming here. I would like to especially thank Dr. Seckin, Padma and Heather for inviting me, for allowing me to be part of the Endometriosis Foundation and to be part of this meeting today. This is something, as you can tell from the way I look that I have been doing for a long time. But this is what keeps me going, honestly, because so many people say to me, “Why don’t you retire, or why don’t you just go do…you know…take up knitting or take up all these different things that, nurses and educators, when you work all the time, all those things that you never have time to do”. Or maybe I should take up scrap making. But honestly, I have said, “You know, I can’t do that”.
When I die I may never know how to knit or scrap make or all those other things but this is too important to me. This is what I live and breathe. It is in my blood. It is in my blood since I was in nursing school. I just got exposed to all of this and it is incredibly rewarding. I cannot find anything out there that I think could possibly be as incredibly rewarding. One time I went to a friend of mine who is a counsellor and I said, “What else would be out there? All these different things and I can’t find anything that is this rewarding…where you can really make a difference”. She said, “Well, you would have to take up bungee jumping or something”. So I said, “Well, it’s either this or bungee jumping”, so I decided I would stay with this.
When you think about it, there are so many causes. Unfortunately every day we hear about so many awful tragedies and awful, horrible stories of things happening in this country and the world. There are things that we do not think we could possibly make a difference about and we could go to Washington where we know we would not make a difference. But this is something that everyone of us has the opportunity to change and to make a difference about. Each one of us can actually improve the quality of other people’s lives. It is here. This is exciting and it is something that every single one of us can, from this day forward, really make a difference with. All of you have made a difference to this point. But this is something that we can all go forward from here and really make our mark. Any way you want it to be, even just by taking these signs. These signs are, oh my God, they are unbelievable! I said, “I want to take 500 of those home with me” but I did not get an answer yet…
These slides are not really fancy and you have heard over and over again about the 176 million women that are affected by this. I have heard ranges anywhere from 8.5 million women in North America to ten to 12 million women in North American alone. I think what this tells us, the scary part, is that the number is growing, it is not decreasing. Because we can diagnose these things if we have the proper channels to do that, and more importantly because girls are reaching the age of puberty younger and younger for a whole list of reasons, as a result we are seeing girls starting to have their periods earlier – seven or eight years old. It is no longer that you ask a girl how old she was when she started her period and she tells you 13 or 14 that is changing, it is getting younger all the time.
I want to talk about the actual specifics about what endometriosis is, what causes it and part of the challenge is we do not have exact answers. There is no consensus. No matter how many things you read in the literature or on WebMD, or how many conferences you go to, there is no one answer for all of these questions. Maybe Dr. Seckin will tell us that he has the answer. I hope he does, but really, there has been no consensus on the causes of endometriosis. We think it is somehow involved with stem cells and genetics and more and more I agree with the stem cell and genetics idea; also, the immune system, the immune response and the environmental triggers. More and more we are finding no matter what the problem is the environment must play a role. It is a multifactorial disease and there are many, many causes.
A woman or a girl with a mother who has endometriosis – this is something we do know – is at least six or seven times more likely to have the disease herself. Endometriosis is also associated with other autoimmune disorders, such as thyroid disease. We keep hearing all of these things.
Our goal as school nurses, teachers, educators and health care providers is that we can help. We can make a difference. To overcome the reluctance to treat in adolescence is something I hear all the time. Even physicians and gynaecologists are very reluctant to treat adolescents and very reluctant to even sit down and communicate with them. One thing that was said earlier; I think school nurses and teachers are in a position where a young person will come and tell them things that they are afraid to tell anyone else. They are afraid to say it to one of their friends. You know what peer pressure is like; peer pressure is a whole other topic. It is hard a lot of times for young girls to sit down and talk to their mothers, or even to sit and talk with a sister. Often times teachers and school nurses are in a position where young girls will talk to you before they will talk to anyone else. These are very, very sensitive issues. Girls have so much pressure; their appearance, their weight and being socially accepted. The last thing they want to do is talk to someone if they have this problem, or that problem. They feel they will not be accepted. But if they feel that they can come and talk to you, and talk to you confidentially, and you are there to try to help them… One of my best friends is a school nurse and initially it was thought, “Oh the kids will just come and visit with her, she’s very nice and friendly…” but there are a lot of reasons why these kids come and you may find that they may actually have a problem that they were never really willing to discuss with anybody.
Our goal is to give these young girls their life back…and we can experience the joy of helping a young person to feel better. Honestly, as much as we can make them feel better, it is going to be so rewarding for all of us as well. It really works both ways.
What is endometriosis? This is the tough question and not everybody agrees. I promise you, if you lined up ten health care providers and asked them this, you might get ten different answers. Some of this is compiling the most common thoughts at this time.
Basically, during menstruation, you have your period every month. The female body sheds the endometrium – uterine lining that is the endometrium – in the process commonly known as a “period”. In women and girls who have endometriosis, some of these menstrual fluids are retained in the body and abnormally implant in areas outside of the uterus. These implants, or nodules, eventually accumulate on the bladder, the bowel, the ovaries, the cul de sac and any nearby organs. I should also say that some of those organs are not so nearby – they are anywhere in the body, leading to the development of adhesions, scar tissue and invasive nodules. Even in this, there are people who will not totally agree. This is just the most basic term about what happens when you have a period and what happens to that endometrial lining of the uterus. This gives you an idea of how they come up with the terms endometriosis. It can cause symptoms that vary from painful to killer periods, chronic pelvic pain, infertility, pain associated with intercourse and sexual activity, to painful bowel movements, rectal pain and urinary pain or difficulty. You see the whole gamut. You see – and I know Dr. Seckin will say this – sometimes we see somebody with stage three. You will hear about stages; stage one, two and three although we are kind of hesitant to put labels on things or put somebody in a stage. Even the “stage” process is not totally accurate. The bottom line is that stage three and four are the more technically advanced cases. You have to keep in mind that a person can have stage three and four endometriosis and they may have really mild symptoms, unbelievably! I know being in surgery constantly that we will see someone with really bad endometriosis and we wonder how their symptoms are not worse.
Then there is the flip side. You will have girls with early developing endometriosis or not that much it. It may be put in the category of stage one or two and they have horrible pain. You cannot always tell just by the extent of how much pain they have but generally, these people have some degree of pain; it could be the bowel, almost all of these girls have diarrhea or constipation, usually they have bad menstrual cramps that is something you hear first. Some of them have really, really heavy periods, some of them do not. As said, it can cause varying symptoms.
You may hear some of these words: painful periods, if you hear the word dysmenorrhea this is basically a painful period. Sexual activity: that is dyspareunia. You are having pain while you are having intercourse. That is usually because deep penetration, deep in the vagina that area relates to behind the uterus, the cul-de-sac, the rectal vaginal area, all those things. The ovaries may even get hit in that area…surgically we can see it from the inside. Some patients do actually have endometriosis in the vagina. Usually, those are the more severe cases. All of these things are possible, urinary tract, gas and GI symptoms, dyschezia and urinary tract difficulties, dysuria. The most common terms you are going to hear about are dysmenorrhea – painful periods, cramps and dyspareunia, which is basically painful intercourse.
Infertility is also prevalent in endometriosis and I have to say I know plenty of highly regarded gynaecologists who insist that endometriosis is not related to, or causes, infertility. I do not agree with that at all. We see people all the time where the only reason they are there is to get pregnant but may not even have symptoms. We then look into this and find endometriosis. Infertility affects, and I have seen different numbers about this, more than half of the women who have the disease, and that could be higher or lower and if anything, is probably higher.
Some characteristic signs of endometriosis include (pointing to screen) this whole long list of these things. They are all possible and I think we have seen them all. Unfortunately, way too many young people have all of these symptoms, or most of them, in the more severe cases.
One story, quickly…every day I am in surgery and I see this more and more…girls that are anywhere from 20 years old but more commonly 27 to 32/35, the age 27 sticks out. We see so many people that are 27 years old. This is about a woman who gave me permission to use her information when I speak to everyone; she is 32 and is a nurse. She really prides herself on being very well read and knowing and keeping up on everything. She had one of the worst cases of endometriosis. We operated on her Wednesday and we had to have a general surgeon come in with us and do a bowel resection in three areas. And she wants to get pregnant. She had bad pain just like Padma said, she is one of those people; her symptoms, when we looked at her, were so horrible we wondered how she had been able to function. It just amazed me. Even on different areas of her anterior abdominal wall you could not see from the surface but underneath…she is a thin girl and she had these huge nodules of endometriosis. When we got in there we could not even see her…make out what was the uterus, what was the tubes, what was the ovaries. She works in the emergency room at a hospital in the surrounding area of Atlanta and finally a doctor did a laparoscopy. He told her she had this endometriosis but did not do anything. She asked, “How could this possibly be? Since I started having my periods when I was 14 years old I have had pain. I go to a gynaecologist at least once a year for a pelvic exam”. She has had every test imaginable done: ct-scans, MRIs, ultrasound and no one had ever said to her that she had endometriosis.
She is now 32 and she wants to get pregnant, and everything, her tubes, her ovaries, this was one of the few cases that I actually felt like I could see where…because I am very anti doing a hysterectomy for endometriosis unless you really, really have to…but this is one of the few cases where I said, “This patient would be better off if we took everything out”, which we obviously did not do. We did take out her fallopian tubes and fortunately with in vitro fertilization she still has the opportunity to conceive. We left her ovaries and we cleaned them out but I am still concerned for the future. The whole thing was such a mess. What she kept asking me is how could this possibly have happened?
When I was listening to Padma’s story it was so much the same kind of thing it was unbelievable. We see this every day. We see it more and more, the same story, over and over again. It breaks your heart. Every time you hear the story it feels like you are on trial and you almost have tears in your eyes, what can you do to help these people?
Some of the facts…puberty starts earlier and earlier. We talked about the symptoms and the bloating and the fatigue. So many of these girls end up being told there is something – either people do not take their complaints seriously or they just think they are trying to get out of school, or they end up sending them to a counsellor, psychologist or a psychiatrist. I loved it when Padma said when she first saw Dr. Seckin the first thing he did was sit down with her and ask her a lot of questions. That is something that gynaecologists, no matter what their specialty, do not do. You can find out so much about the patient that has endometriosis just by asking them a lot of questions. You can almost, based on that interview, pretty much know what they have got. The medical history is incredibly important. School nurses and teachers can ask specific questions. When you hear that someone has horrible cramps every month with their period, when they have heavy periods or they have abnormal bleeding at times other than their period, the first thing we’ll give them Advil or ibuprofen. That is something you can recommend as they do not a prescription. But these girls/women usually get minimal, if any, relief from that. Physicians give them birth control pills. Typically those are the first things that are tried, ibuprofen around the clock and birth control pills, but most people do not get relief from that. It is a red flag. I am not a fan of putting them on Lupron and GnRH agonist because you have a young girl who has all these things going on…I just hear too many horror stories, people have committed suicide after. It just puts them into a menopausal state and their hormones get messed up and they feel like an old person. Psychologically they have more and more issues and that really, really scares me. There is information in the research and reports in the literature now that some of the symptoms from these medications are not reversible. I am really frightened of that, so I am hesitant. The other thing we see is so many patients that are addicted to narcotics.
Even if they have a good surgery and we fix the cause of their pain the next thing is pain management. We had another person this week, her father is an anaesthesiologist and her mother is a nurse, and she is totally hooked on narcotics. You have to have a whole team. I know Dr. Seckin has a whole team and you need that team to work with you who are used to dealing with these types of patients because they will have a lot more empathy.
A couple of weeks ago we had a patient with endometriosis. She came in the emergency room and they said, “Oh, she is a former drug addict”, so they did not take her pain seriously. She actually had a ruptured appendix. Fortunately I was on-call. I take everybody’s pain seriously, until proven otherwise. A lot of people in health care…they love to say, “Oh this person’s a druggie”. How did they get to be a druggie? Part of the follow up is that we make sure that these patients are followed up, that they have somebody they can go to and get them off these pain medicines once we fix the cause of their pain. Because these girls are starting their periods younger and younger the only doctor that most of them have ever been to is a paediatrician, how many paediatricians know anything about endometriosis?
Most women with endometriosis do suffer some type of pain and some types of symptoms. The amount of money this costs, as Heather said “110 billion?” is rising and rising. There are certain diagnoses that girls get labelled with; a popular one is IBS, irritable bowel syndrome. We see so many patients who have been told they have irritable bowel syndrome and they actually have endometriosis. That is why I am hesitant to use labels. We have had a lot of patients told they have PID, pelvic inflammatory disease. When you take the history you figure out “Gosh, how can that even be possible?”
When you do a laparoscopy and you look at the patients’ fallopian tubes one of the things I learned working with Dr. Nezhat many years ago, and we were just looking into all this, was when we saw the ends of a patient’s fallopian tubes, the fimbria, that if the fimbria was not damaged and they looked nice, then we said, “It’s probably endometriosis”. We knew that PID, most often, will destroy the fimbria and the fimbria will not look nice. However, so many patients have been labelled PID.
Diagnosing endometriosis you can have birth control pills, you can have ibuprofen and you can still have pain. Ultimately, the only real way to diagnose it is to put a laparascope in and to do a surgical biopsy to actually see the tissue. I am fan of doing vaginal ultrasounds, and even on young girls who are too freaked out to have you do anything vaginally, they we will have a transducer that we can run over their stomach and they do not have to have a vaginal exam. Otherwise, they may never want to go to the doctor. If they think someone is going to put something up them, forget it. In young girls we will just take the ultrasound, the transducer. Just like from years ago before they even had the vaginal probe, and most of the ultrasounds have this, and most gynaecologists that do a lot of this we have an ultrasound machine in the office. Just a transducer that we can run over their abdomen to get information that way. It is not invasive.
People are so afraid. They hear, of course, “surgery”. But if you go to somebody who knows what they are doing, at least if someone puts a laparoscope in, and you will probably see more of this when you hear Dr. Seckin’s talk, but laparoscopy is basically, honestly, a hollow tube. You put a light through it and it is no bigger than this, in fact, you can get laparoscopes that are 3 and 5 mm in diameter. The patient is asleep and you put it in their bellybutton and it is attached…something I worked on for many years. When we developed all this instrumentation basically you are taking this tube and a camera is attached to it. This camera has more lines of resolution than you can see with your eye. It is almost like a microscope. You attach the camera to it and the only thing that is going in the patient is this tube, which as I said, could even be smaller than this (10 – 12mm). They are asleep, it goes in the bellybutton, you close that incision and when it heals up, most patients, you cannot even tell they have ever had anything done. You can get so much information that could save so much heart ache. What we are finding is that so many of these girls, if we could have seen them when they were 15 or 20 years old…we had a girl recently, she was 13 and she had horrible endometriosis. We were very thankful that we were able to treat her. Who knows, if she had waited another ten years, what her disease would have been like.
If these girls could have their first surgery between 15 and 20 if they are having these symptoms; the key is also to have their surgery by someone that knows what they are doing. Through the Endometriosis Foundation, Heather, Dr. Seckin, myself and all of us, we know around the country and around the world who the people are. Unfortunately, I may be too picky but if Dr. Seckin agrees with me we could just about count on one hand, maybe two if we are generous, how many people we would let operate for endometriosis. We will help you with that. I would rather they put a laparascope in, make the diagnosis and do nothing else if they are not able to or they do not feel comfortable. Do not open the patient.
We get patients all the time where someone went in. They opened the patient to make the diagnosis and closed them back up. “Oh my God, you did a big incision for that…that’s horrible!” Do not let anybody tell you that you cannot see better with a laparascope than with a big incision. You can turn that camera around so that you are standing on your head, 360 deg. We have got monitors, HD cameras with the highest lines of resolution that you could watch a football game on, better than watching the football game! I would much rather use that laparoscope to be able to see this disease in its earliest forms than in its worst forms. If you do an open surgery it is just the eye, you cannot see what is underneath the sponges and the retractors.
I think you get the drift. I just want to show you here a couple of pictures of what typically endometriosis looks like. The gold standard of laparoscopic surgery is excision. This takes you to a whole other discussion that Dr. Seckin will discuss. If you are reading about this or talking to people about it you want a gynaecologist that does laparoscopic surgery, who knows about endometriosis, and that does excision. Not ablation, not destroy the disease, excision. There are people out there who are claiming to do excision and they are not doing true excision. The best way…I tell people all the time, and I am always telling nurses and other health care providers…for anybody who is tired of doing what they are doing now, or they do not want to be in the operating room, do research. Research, you can do forever. And the only way we can properly evaluate how our patients do, is to do research and follow up. I am not talking about two weeks, three months, six months, I am talking about years and years of follow up.
We can keep getting better and better…no matter how good we might be we can still get better. As far as I am concerned we will not be there yet till we wipe out this disease. The goal here is that we want to get rid of the patients’ pain and we do not want them to have additional surgery but we do want them to have the best quality of life. We want them to have babies if they want babies, whatever it is they want to do. We want them to go play sports, go run a marathon…whatever! But the key here is that you have to excise the disease. The only way you know about your techniques and how you are doing is how these patients are doing five, ten, fifteen and twenty years later. The research is so important…follow up, follow up.
As said before you cannot always tell about the pain as far as the stages of disease. The cause of endometriosis, that is something we know more about. I think it does have an involvement with stem cells. Thank God that Dr. Seckin, Padma, Heather and the Endometriosis Foundation are working very, very hard on research and stem cell research. When you start hearing about stem cells for so many parts of the body I really am hopeful that the day will come that stem cells may be our answer. Time will tell, but whatever it is, that is something that we are trying to get going.
(Ms. Winner is showing on screen slides.) Just to show you a couple of real simple examples of endometriosis. This is laparoscopically where everything is magnified. There are different ways that endometriosis can look. This is just very basic, a pattern of lesions in the cul-de-sac. This is the back of the uterus, this is what I talk about, this is the cul-de-sac area here and as you go down lower you go down to the rectum – the whole rectal vaginal area. You have got the top of the vagina, the cul-de-sac and then back here the rectum, all this stuff is bowel. When you hear people talk about the uterus and sacral ligaments on each side it is very common to have endometriosis that can cause pain in those areas. Sometimes we will see patients that have endometriosis just on the uterosacrals and nowhere else and they have horrible pain. This is a more typical looking endometriosis. Once again, another reason why the gynaecologist 0074 doing the surgery needs to really know what they are looking at and have good visualization because endometriosis appears in many different ways. This is a fibrotic nodule here. We see a lot of patients who have had superficially treated endometriosis or ablation. We have to go deeper to excise it, get down to the normal tissue, the normal peritoneum because somebody else has done their surgery and just skimmed the surface. This is something called red implant. It can look all different ways but a lot of doctors, unless it looks like your typical, whatever typical endometriosis is, they do not think there is any endometriosis.
This is an invasive bowel implant. If it is superficial on the bowel we will excise it and remove it from that area. We are seeing a lot of people who almost have a bowel obstruction when they come to us. Or, we put in a rectal probe when they are asleep and you cannot pass the rectal probe because they are so scarred that even when you free everything up there is this stricture. We have a general surgeon that we work with routinely where we do everything laparoscopically, but that area has to be removed. When you look at these things you can see what the normal bowel should look like. It should be smooth. Fortunately people have many loops of bowel in the colon as it is very long. If an area needs to be resected you can do a reanastomosis laparoscopically. Fortunately there are all kinds of stapling devices, circular staples or you can sew it but the person should not need to have a bag, like a colostomy bag. We spend a lot of time with patients discussing all the possibilities, discussing their symptoms and the risks. We have everybody do a complete bowel prep before surgery because the goal…many of these people have had so many other surgeries…is that we want them to have one surgery. To be able to get in there and if we find that they have one of these strictures or one of these areas, that we can go ahead and treat it. We always have the general surgeon that we work with routinely available and he knows about the case. We have our whole team. We had a case the other day where the endometriosis was invading her bladder, so we resected that area out of the bladder. All of these things are treatable and that is why you have to have a whole team.
When you are talking about “chocolate” this is just very simple. Here is the uterus, the fallopian tube and this is the ovary. See this stuff coming out? A lot of times it looks like Hershey’s chocolate. Honestly, you would think by now I have seen enough of these that I would not even like Hershey’s chocolate but for some reason I still like chocolate. But this stuff really does look like…honestly this is not the real coloring…it is really not accurate because when you see it in real life it really looks like Hershey’s chocolate. Too often though a patient will have the surgery done and all they will do is go poke a hole in it, drain the cyst, the Hershey’s chocolate, and maybe they will suction it out or it just kind of leaks. But then they do not remove the shell inside the ovary. You have to remove that capsule as we call it. If the capsule of the cyst is not removed then the cyst is not going to be gone.
Another thing to remind everybody, this is not a malignant disease, it is not cancer. But you know a lot of people feel that the treatment of it is so frustrating, so hard to get a handle on, causes so many horrible symptoms and I have talked to plenty of gynaecologists who have said, treating this is worse than trying to treat cancer. But it is not cancer. There are forms of endometriosis, a low percent, that are cancerous. That is possible. But for the most part it is a benign disease.
That is what the ovary looks like. In this situation the ovary does not have to be removed which is another thing, a lot of doctors will just go in and remove the ovaries on a 22-year-old patient. You can open this up, drain the cyst, remove the whole capsule and preserve the normal tissue. Another thing we do, it is much better laparoscopically as far as development of scar tissue. There are materials that we are working on – nothing is 100 percent – but we are working on more and more materials to get something that will prevent scar tissue formation. The best thing is good surgical technique and minimal blood loss and we are very, very picky about that. Everything is magnified but people always make fun of me in surgery. They say I count erythrocyte because I do not like any bleeding, the less bleeding the better. You have to make sure afterwards that everything is hemostatic, there is no bleeding. It is very, very rare in a laparoscopic case that a patient needs to have a blood transfusion. It is not like open surgery. But still, we are doing things that they do in open surgery, we just use very, very delicate tissue handling and then anything is possible. The patient always has to be informed of that. What we do in a case like this though (pointed onscreen), when you open up the ovary, you remove the cyst wall and you want to protect it from scar tissue. The ovaries are what we are especially concerned about developing scar tissue or having been stuck to the pelvic side wall. We try to put something on here, or wrap the ovary with some type of adhesion barriers, to protect against scar tissue. I have yet to find any adhesion barrier. It is better than open surgery but I still have not found anything that is 100 percent. I have been involved in just about every clinical trial over the last 30 years for adhesion barriers. It keeps getting better and better but there is no replacement for good surgical technique. That is the biggest challenge.
There are all kinds of atypical endometriosis that are there and that is another reason why you have got to have an experienced endometriosis surgeon, an experienced laparoscopic endometriosis surgeon. Typical or atypical it appears in many different ways.
Thank you very much for being patient and listening to me.
Heather Guidone introducing Wendy Winner