Our mission is to increase endometriosis awareness, fund landmark research, provide advocacy and support for patients, and educate the public and medical community.
Founders: Padma Lakshmi, Tamer Seckin, MD
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Nurse Conference 2013 - Lisa Ventola

Nurse Conference 2013 - Lisa Ventola

Nurses Conference 2013 - Misconceptions Myths & Misdiagnosis

- Lisa Ventola


Good afternoon everyone. Thank you for coming and spending your Saturday, giving up your Saturday to spend the day with us. My name is Lisa Ventola. I am nurse practitioner at Robert Wood Johnson University Hospital in New Jersey. I work with a team that responds to rapid responses, emergency responses around the hospital. Before that I was a nurse on a surgical floor taking care of post-op patients and then I did some years in the ICU.


Endometriosis is a topic I am very passionate about because I suffered with it for many years. I had terrible periods as a young woman but so did my mother and so did my grandmother. So, I just dealt with it because it was my norm. In my mid to late 20s I started having symptoms that were not the norm. I had a lot of pain after bowel movements, a lot of pain after sex, even with urinating. I went to see my gyno who thought my symptoms were all GI related and after seeing a gastroenterologist who sent me for endoscopies and colonoscopies and every other test you could imagine, I was diagnosed with IBS and maybe some anxiety. In my early to mid 30s my symptoms worsened in that my episodes sort of became more frequent and my pain had increased, so much so that I actually had to pre-medicate before every bowel movement. I was taking 800 to 1000 mg of Motrin every single time I had to go to the bathroom, if you could believe that.


One day I was at work, I was working in the ICU at the time and I was having a very busy day. I ran quickly to the bathroom and I forgot. I forgot to take my pain medication. Within a few minutes I was in excruciating pain and when I saw my chance I ran back and took my pain medication, and then I actually ran into the supply closet. You know those hot packs you can sort of break and they get nice and toasty? I shoved those down my scrub pants, about eight or ten of them and then went to sit at the nurses' station so I could chart. A physician I was friendly with at the time noticed I was in terrible pain and after a brief conversation we had he turned to me and said, "You know, you have endometriosis". He was an infectious disease doctor by the way.


Two surgeries later I was diagnosed with endometriosis but I was really no better. I was still in a lot of pain, still taking a lot of pain medication and at 38, almost 20 years later, my symptoms had become so severe that I was really not functioning at all, I was missing a lot of work, I was unable to have sex at all and I had to be near a bathroom at all times because I had to urinate every 30 minutes. God forbid, I waited any longer than that I was in agony. I knew I was very sick and I needed some real help. So at 41 I found Dr. Seckin. I had my third surgery here in New York. But because, you know, my diagnosis was so delayed, and I did not get the treatment that I needed, I had to have a hysterectomy if I wanted any sort of good quality of life whatsoever. So that is the bad news.


The good news is that I am completely pain free. I have no pain with bowel movements, no pain with intimacy. I have a normal life again for the first time in almost 20 years. I know that Dr. Seckin is probably tired of all the accolades but there are really no superlatives for me to describe how grateful I am because he really has given me my life back. And so I thank you.


I really want you to ask yourself like if something like this can happen to someone like me, medically educated, working in the hospital every day, with physicians on a surgical floor, I sought what I thought was good medical care. I went to the doctor all the time. Just imagine for one moment what the lay person who has no medical, no clinical knowledge whatsoever goes through on a daily basis, because it really is quite frightening. A hysterectomy at 41, which is still young even to have children, is not always the end result but it can be for a young woman who either does not get diagnosed at an early age or gets diagnosed and does not get the right treatment. It is really important to keep that always in the back of your mind.


What I would really like to do now is clarify some myths. There are a lot of myths associated with endometriosis. You hear about them in conversation and you read about them on the internet. I just want to talk about a few. Endometriosis is rare in teenagers and young women. It has typically been associated with women that are in their 20s and 30s because teens when they have their symptoms early on think it is just bad periods. It is not until the disease progresses like it did for me and the symptoms occurred other times other than their period that they actually become concerned and seek help. That is why we associate it with older women.


"You are too young to have endo". You must have started your menstrual cycle to have endometriosis. You are never too young to have endometriosis. While most women do experience their symptoms at adolescence at the onset of their first period, in rare cases they have actually found endometriosis in small children and infants.


"You must have all the clinical symptoms to be diagnosed". Every woman is different. Some women will have all the clinical symptoms; some may have some or just one. Some women have no symptoms at all, or maybe just around menses, while others suffer every single day.


"Endometriosis only develops in the pelvic cavity". Typically, yes, that is the case and Dr. Seckin touched upon that; your intestines, bowels, your ovaries, etc.; however, in rare cases it can also develop outside the pelvis and areas like the lungs, the diaphragm, your lower leg muscles and even in your brain.


"Minimal disease = Minimal symptoms". That is absolutely not true. There is no correlation on any level with how serious one's endometriosis is with one's pain. You can have a patient with very little disease and severe symptoms; or you can have another with extensive disease and little or no symptoms at all.


"It's all in your head". This is a favorite of mine. Please stop me if I go off on a tangent. This speaks to the topic of anxiety and depression. You will frequently hear those two words in conjunction with endometriosis. And in some patients that may be an appropriate diagnosis but it is not always the case. So I encourage you to really listen to your patient and really look at the big picture. Ask yourself when you are talking to these young women is it the anxiety that is causing the pain or is the pain so debilitating that it is causing some level of anxiety and depression, because those are two very different things.


"Your physician can diagnose endometriosis from a verbal description of your symptoms". I know Dr. Seckin also touched upon this. While that may be helpful the only way for your physician to definitively diagnose endometriosis is through an exploratory laparoscopy.


"Pregnancy cures endometriosis". I heard this many times from my gynecologist. "Get pregnant and it will solve all your problems". Unfortunately, that is false. Pregnancy-like hormonal treatments may temporarily suppress symptoms but it does not eradicate the disease, and symptoms do often reoccur after a woman gives birth.


"Having a hysterectomy cures endometriosis". While that might be warranted in certain cases, removing the ovaries and/or the uterus, without removing the endometriosis itself outside, does not resolve symptoms and even with a hysterectomy symptoms can eventually return.


"Surgery cures endometriosis". Surgery, specifically speaking laparoscopic excision is the gold standard for treatment right now. However, it does not cure endometriosis. While this may also relieve symptoms these symptoms can also return years later because there is no cure for endometriosis, as we know. But we are hopeful that changes in the future.


So why is endometriosis so misunderstood? There really is a lot of confusion surrounding the disease, which really creates a lot of barriers for treatment and early diagnosis. I want to talk about a few of them.


Females, you know we have that stigma, "Periods are supposed to cause discomfort" and I agree with that; discomfort - yes, excruciating, debilitating pain, heavy bleeding causing you to lay in bed for days on end with your heating pad - absolutely not. I know you have heard it a million times but we really cannot say it enough; that is not part of being a woman. And yet, we are all still conditioned to think that is still the case, especially if mum and grandma had it.


So we really need to change that mindset. It is an uncomfortable topic. You know symptoms are embarrassing. Try sitting across from a physician, a male physician, and telling him "I have rectal pain. It hurts to have a bowel movement, it hurts to have sex". It can be very difficult for a woman at any age but especially a young teen. It is complicated and frightening, which it can be. The definition of endometriosis itself, if you look on the internet and there are many of them, can seem very complicated and confusing to someone who has no medical background. Young girls especially worry about things like being labeled as "being sick". They have concerns about how they are going to be perceived maybe by their peers depending on how old they are, with men and future relationships because that can be hard. A proper diagnosis to confirm is invasive. There is no blood work, no lab tests, no CT-scan you can take that is going to tell you that you have endometriosis. It is an invasive procedure and it is surgery and that is frightening to a lot of people. I cancelled my procedure three times before I actually showed up because I was scared to death. I never had surgery before. You know, they also hear buzz words, "surgery", "infertility", "chronic pain" at any age that can be very traumatizing.


The definitive cause is unknown. We do not really know what causes it. Is it an immune dysfunction? Is it genetic predisposition? We think maybe as we see a lot of families affected by it, mum, sister, grandmother but we really do not know for sure. We assume it is rare because we do not talk about it. It is a female problem. And truthfully, it does not get the same publicity as other illnesses, like breast cancer and MS.


Endometriosis mimics many other diseases. Diseases like ovarian cysts, fibroids, diverticulitis - you have heard these all before. Crohn's, appendicitis, bowel obstruction, colon cancer, pelvic inflammatory disease, sexually transmitted disease, anxiety and depression and IBS.


IBS is a big one so let us talk about just briefly IBS and endometriosis. Just listen to these definitions for a moment if you would. Endometriosis results from endometrial tissue that is now growing outside the uterus, which is causing pelvic pain and alteration in GI and urinary symptoms. While IBS, or spastic colon if you will, is a symptom based diagnosis, chronic pain, bloating, alteration of bowel habits. It has no organic cause and historically is a diagnosis of exclusion, meaning when all other tests are negative this is sort of what they infer. But I want you to look briefly at the similarities here because there really are a lot of them. Abdominal/pelvic pain, constipation, bloating and flatulence, fatigue, body, back and leg in pain, nausea, vomiting, urinary urgency, frequency, retention, rectal pain and pressure; also, a sensation of having an incomplete bowel movement and painful intercourse. The one main difference that makes endometriosis unique is that it is cyclical. In that I mean women that have these symptoms are more likely to report them being worse on or around their menses. In addition, endometriosis patients also can have complications; infertility, miscarriage and ectopic pregnancies that obviously IBS patients do not have. But the problem with this is what I said before, which is as the disease progresses women tend to have those symptoms not just around their period but at different times during the month, or maybe all the time. It becomes less and less obvious that it is cyclical. Hence, you get the diagnosis of IBS all the time.


You can see how someone could mistake the two. However, a good clinician, even if they are thinking IBS, should really still have endometriosis on the radar, especially if a woman is having bad periods. But unfortunately, that is not the case all the time.


But I have to say as someone who suffered for a very, very long time; even with all this confusion and misconception we have made a lot of headway. There is really much more awareness today than ever before, certainly more than when I was in my 20s. But diagnosis can be difficult. We are not asking you to diagnose but rather just to consider. Consider endometriosis when you are talking to these young women. We recognize that can also be very difficult.


Tracey is going to talk with you now about some of the assessment skills that we have come up with in order to help you do that. Thank you.