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 2012 - One Student's Story

Nurse Conference 2012 - One Student's Story

Lunch & Learn with Padma Lakshmi
Nurses conference 2012 – One Student’s Story  

Padma Lakshmi:  This is MacKenzie, she is a young woman and you are all health professionals so I do not need to tell you this but I am kind of saying it for my own sake too. Thinking back about all the stuff I did tell you just an hour ago. I just want to say that I feel like a doctor-patient relationship and confidentiality is respected. I am in this hospital, which has always respected me, in this room and I just want to say that I am really thankful to MacKenzie’s parents for giving us permission to interview her on stage about a very personal subject. I really want to really thank MacKenzie for sharing her story with us before we start. And to say that I have promised MacKenzie and her parents that her story and she is safe here today. I know that is true but I wanted to say it out loud so that everyone could hear it, especially you.

MacKenzie can you tell me how old you were when you first got your period?

MacKenzie:  I was 12.

Padma Lakshmi:  Can you tell me how long after you got your first period did you start to have pain, discomfort or any of the other symptoms, and please describe those symptoms.

MacKenzie:  Probably at the year mark. For the first year though within three months I was pretty regular and everything was fine and I could not figure out what all these women were complaining about. And then, after that, it was just getting progressively worse and worse every month and I was miserable. I would sit there and I would cry because everything hurt so bad. I was physically ill because food would make me sick. I did not want to eat but I was still hungry. I got really bad headaches. It was horrible.

Padma Lakshmi:  I am going to swap seats with you because of your bangs, I want them to see your face. I am mad at myself I did not do that. There we go, such a beautiful face, we want to see it.

When you say everything hurt can you be specific?

MacKenzie:  I had the really bad cramp part of it. But aside from that my whole body just ached. My back was killing me, my neck would ache. It felt like if you do a whole bunch of exercise after going a year without exercising at all, that is pretty much how I felt. It really hurt everywhere. My arms, everything.

Padma Lakshmi:  And how was your menstrual flow? It is hard to compare it if that is all the period you have ever had but can you describe that to me?

MacKenzie:  It got a lot heavier. Really, really heavy. I went from, you know, just using a pad, like two or three pads a day, to bleeding through these super big tampons and having to change them every two hours.

Padma Lakshmi:  I actually could not use tampons for many years because even that hurt. How did you arrive at using Tampax?

MacKenzie:  Actually because of gym. We had a swimming unit and apparently having your periods was not a good enough excuse not to swim.

Padma Lakshmi:  Okay. And how long was the duration of your cycle typically, after that one year mark?

MacKenzie:  It would last anywhere from three days to 17 days. Some months I would have it and it would only be for a few days at a time. And then I remember this one time really specifically because it was the worst, I bled for three weeks.

Padma Lakshmi:  Did you miss school? Or were you going to school during this time?

MacKenzie:  I still tried to go to school but I ended up having to come home more often than not. And I did not want to be there. I felt terrible because I was constantly asking to stay home and mom would be, “Just try to get through the day”. Then by 10:00, “Okay come get me now, I cannot do this anymore”.

Padma Lakshmi:  I went to school a long time ago, but when I went to school you would go to the nurse’s office and you would say you didn’t feel well and they would have to call your mom or your dad and they would come and pick you up. Is that a similar process you went through to go home?

MacKenzie:  Yes, well, my school’s big thing was “if you don’t have a fever you can probably be at school”. But since I did not have a fever most of the time I would be…it would be like, “Alright, why don’t you just lie down for a little while and see how feel after that and then if you still feel terrible we’ll call and see if it’s okay with your parents”. So I would lie down with a heating pad and nothing would give because the school obviously cannot give you Tylenol or anything. There was nothing to help. It is 20 minutes and then it was 40 minutes and then it was an hour and finally I was like, “Can’t I just leave? I’m not leaving your office today”. They would call my mom and, “She has to go home again”. My mom pretty much knew the deal already.

Padma Lakshmi:  If you were missing school, whether you came home partially, after a partial day, or whether you stayed home sick, how many days would you say, in a typical month, would you miss school?

MacKenzie:  It is really hard to say because some months I would get it and some months I would not. On a month where I got it, including all the time for me just leaving early, I probably missed about five days.

Padma Lakshmi:  Wow, that is a lot.

MacKenzie:  That is rounding all the time that I left early for doctor’s appointments and stuff within just staying home.

Padma Lakshmi:  That is 25 percent of her school days missed. A quarter of no math, no history, no art, no sports certainly, but, you know, all of the things that we want for our children, right? And yet you are still expected, of course, to get the same grades as everyone else who is in school 100 percent of the time.

You clearly must have started to see a pattern. It is easy to see “oh my period is coming. I’m going to have this pain”. Can you describe, do you remember the first time that you spoke to someone about the possibility of something not being right?

MacKenzie:  Yes, I was talking to my mom and she was asking me how I was feeling and I said, “Mom, this isn’t okay. This isn’t what it’s supposed to be”. I am no expert but I am pretty sure that I am not supposed to be crying because I am in that much pain. We made an appointment with my…pedia…that word…

Padma Lakshmi:  Pediatrician?

MacKenzie:  Yes, that!

Padma Lakshmi:  It is okay. He could not say some words and he has a PhD. So do not worry.

MacKenzie:  That is a difficult word to say. We went in there and it was, “Okay, well let’s run some tests. Let’s do a blood test. Let’s make sure you are not anemic or anything. We will put you on vitamins”. I took some vitamins and all my tests came back as nothing abnormal, so we just kind of kept going along until the next time came, and the same thing all over again. Only I can remember my freshman year specifically. I was in so much pain I fainted in the middle of class.

Padma Lakshmi:  Clearly a drama queen. I think you are pretty much an expert because pain is your body’s way of telling you something is wrong. And after you are in pain for a long time you become very well versed at it and the signs of its onslaught.

So, did your mother take you to a doctor or did you speak to any health professional other than the pediatrician? Like, you know, a school nurse? Your school nurse. Your school must have been like, “Why are you keeping on coming here and going home”.

MacKenzie:  They know me on a first name basis there, “Oh hey what’s up? You’re here again”. Yes, they knew pretty well. For a long time it was, “You’re here again, what’s wrong this time? Oh, same thing, go lie down”. It was that kind of thing.

Padma Lakshmi:  It is interesting when you describe the reaction of the school nurse I am assuming. Is it a woman? Okay, it sounds almost kind of pat, it sounds almost like, “Oh, here’s the routine”.

MacKenzie:  Yes, that is exactly what it was. I am sure they get it all the time, there is always going to be a girl trying to milk it for what it is worth but I was there and I was actually feeling this terrible and it was just “Well, okay, here we go again” that kind of thing.

Padma Lakshmi:  When I was in school I remember the admission’s office, you had to have a note when you went back the next day. Write a sick note about “Please excuse my daughter, she has a fever or she whatever…has a cold”. Your mother must have been writing a lot of notes. Did your mother state the reason for your absence? Did she say, you know, “abdominal cramps, period or menses or…”

MacKenzie:  I would not let her. That was not something that I felt needed to be advertized to anybody. But we also just kind of came to the point where it was expected, we kind of just stopped writing notes.

Padma Lakshmi:  Really?

MacKenzie:  It kind of got old after a while.

Padma Lakshmi:  But nobody raised an eyebrow at school? Like no one said…there are a few things I want to address and I do not want to forget to address them all in this statement that you just said.

When you went to the nurse’s office, you say you did not want your mom to write the note that said that you had menstrual cramps. When you went to the nurse’s office did you say, “I have my period and I think that’s why I’m hurting”?

MacKenzie:  Yes.

Padma Lakshmi:  And since you are on a first name basis with this nurse did you say I have my period again. She could have looked on her calendar and expected you next October 15th and the November 14th…you know what I mean?

MacKenzie:  That is kind of what you would think should have happened. But even though it would be like, “Alright, it is that time again”. No flag was raised with the irregularity of me coming in. I was coming in like every two weeks for multiple days at a time. It was not just once every two weeks, it was like three days in a row, every two weeks or every three weeks or within a week.

Padma Lakshmi:  And this nurse, or no one else who worked in the attendant’s office said, “You know, why are you missing so much school” or “Something is wrong” or “This doesn’t seem right because I see you more than, you know, your other peers”?

MacKenzie:  No, nothing was really said. I think it is partially because it is probably just assumed that there has got to be something going on if my mom was willing to take me out of school that much. I don’t know, maybe they think it is not their place to say something. Or, if, they just kind of assumed I was, for lack of a better term, a problem child who has issues at home and maybe that was what was going on. But it definitely was not like, nobody blatantly asked me “why are you never here” or “why are you always here”?

Padma Lakshmi:  What about your girlfriends? You must have classmates who are also going through puberty and have their period. Did you talk to any of your girlfriends, or your gym teacher? You say you were mandatory swimming even if you had your period. Did you talk to anybody else or a counselor?

MacKenzie:  I talked to my friends and a lot of them only got their periods later so they are really excited about growing up. I can just remember at one point I was talking to my friend and her mom and she was all excited about getting her first period. I was like, “Don’t be, it’s the worst thing you will ever experience in your life”. That was pretty different because she had already, you know, this is like her third time with it and she is like, “What do you mean? I don’t understand what you are talking about. I mean, yeah, it’s uncomfortable but it’s not anything that, you know, would be something to cry over”. I was like, “No, it’s something to cry over. You could definitely cry over that pretty easily, I do it all the time”. That was when I was like, “Oh, okay, maybe I actually am different and I have something going on that most people don’t”.

Padma Lakshmi:  For most people it is not that big of a deal.

MacKenzie:  Well, especially like I have six sisters.

Padma Lakshmi:  Ah!

MacKenzie:  I remember one time my one sister I was like crying I was in so much pain and we were in Pet Smart at the time. My sister was just like, “Suck it up and get over it, we all have to go through this”.

Padma Lakshmi:  Yes, I heard that a lot from people who did not have what we have.

MacKenzie:  She did not really understand.

Padma Lakshmi:  I am just curious, do any of your other siblings have symptoms? Because it is, you know, a greater chance if your relatives have it.  

MacKenzie:  No. My sisters do not. My mom does.

Padma Lakshmi:  We will get to that in a minute. Lucky them.

MacKenzie:  Lucky, that is right.

Padma Lakshmi:  It is interesting that when you went to the nurse’s office, you did, in the privacy of the nurse’s office where it was just the two of you, you did say, “I have my period again” or “I’m bleeding again” or “I have, you know, stomach cramps again”, whatever else you may have said or not, and none of those times did someone say, “Maybe you should go to a doctor”?

MacKenzie:  No. I think it was something like with your period I feel like for the nurse-student relationship maybe it is very hard to say because it is a personal thing. Nobody wants to talk about their period with their school nurse. That is not…that is kind of an awkward situation. So, I imagine it was something like, “Well, that’s your business, you deal with that on your own”. But at the same time I needed help.

Padma Lakshmi:  Does your high school have any sex education that you guys went through?

MacKenzie:  I had to go through that in middle school, not in high school. It was like before all that.

Padma Lakshmi:  And when you were learning about your body, along with your other classmates and how you get your period and the ovaries, I remember the drawing, much nicer than Seckin’s, but… Did you ever hear the word endometriosis?

MacKenzie:  Never heard of it.

Padma Lakshmi:  One of the things that Endofound would like to do is to implement changes to the way sex education is taught in schools in this country and beyond; so that when both young men and young women, or children actually, in middle school they are still children, are learning about their bodies, they learn also about the possibility of this condition existing in their body. That way it becomes a normal thing. It is not something you learn about once you have the problem that you are just made aware of it; like you are made aware of STDs, or birth control, or anything else relating to reproduction. We would like, for both young girls and young boys, to learn about it. So even if you are a boy, and maybe your sister has it, that you are compassionate and you can help. If your sister has not gone to the same school and heard the same speech maybe he can say, “Hey mom, I heard about this thing, maybe Lisa has it”.

But then when you asked your mother to write these notes, she is writing you the notes, what does she write on the notes?

MacKenzie:  Just that I do not feel well, that I was sick. That pretty generic, clichéd kind of note.

Padma Lakshmi:  “Please excuse MacKenzie she is having a bad day”?

MacKenzie:  Never that generic but more like, “Please excuse MacKenzie. She was bedridden and ill”.

Padma Lakshmi:  Well, bedridden is pretty ill. At what point did your mother say…did your mother tell you you would have cramps? Like, my mother told me, “You know, expect cramps. Some women have it, some women don’t”. Did your mother have a similar discussion?

MacKenzie:  Ah, yes. When I like first got my period I knew it was to be expected. Like having six older sisters who already went through it, I pretty much knew that already. I knew cramps were to be expected. But mom caught on really quick that these were not cramps, they were a lot more than cramps.

Padma Lakshmi:  At what point did you meet Dr. Regard?

MacKenzie:  March of my freshman year of high school.

Padma Lakshmi:  You are a senior now.

MacKenzie:  Yes, I am a senior now. My pediatrician sent me to her to kind of figure things out because they were at a loss, they did not know what to do. I was going into high school, it was time anyway.

Padma Lakshmi:  Can you please describe your first consultation with Dr. Regard?

MacKenzie:  It was – I really do not know how to explain it. It was like, “Okay so you’re going through this, this and this, let’s see what we can do”. Within my first consultation she had me for tests and I was trying out new things to try and manage the pain. The term endometriosis had come up. It was not definite. We had not really talked about it in depth, but it was a possibility.

Padma Lakshmi:  That is all we ask that the issue be at least raised. Hopefully before you get to somebody like a Dr. Regard, hopefully soon after you are missing school.

MacKenzie:  I want it noted that she was awesome.

Padma Lakshmi:  Thank you!

MacKenzie:  Just saying.

Padma Lakshmi:  Thank you Dr. Regard. Then what happened?

MacKenzie:  I came back to her I think three months later and things were not getting worse. They were no getting better. They were not really getting worse either. It just kind of stayed the same. I do not remember what it was, but she had me on some kind of treatment or something to make it better.

Padma Lakshmi:  Long word. We heard them this morning.

MacKenzie:  I do not remember! That was not helping. It was actually…by the second visit with her, after that things had gotten worse. I think I went back either three or six months later and it was, “Okay, we think you have endometriosis for sure. This time let’s go on the pill”. I started treating it that way and I went for more tests.

Padma Lakshmi:  How long did those tests take? How long before you… how long were you on the birth control? You said three or six months, but I want to know…

MacKenzie:  I do not remember exactly how long. But I had been on the pill from that point on up until my surgery.

Padma Lakshmi:  When was your surgery?

MacKenzie:  Last December.

Padma Lakshmi:  That is a long time. That is a couple of years, right?

MacKenzie:  Something like that. When I first went on the pill things were getting better and then they were not anymore.

Padma Lakshmi:  It stopped working?

MacKenzie:  Yes, it stopped working. Then she put me on a different regimen, and that worked for awhile. Then it stopped working. Then we talked about surgery but I did not really want to do that. Inconvenient. Finally I was like…

Padma Lakshmi:  Also, it is like surgery, you know? Anesthesia, needles, right?

MacKenzie:  Yes, I am not really fond of sharp objects.

Padma Lakshmi:  Me neither.

MacKenzie:  But finally, in September of last year I was like, “Alright, I just can’t do this anymore”. We called Dr. Regard, “It’s time. Pick a date”. We went into her office a week later and we figured out when we were going to do my surgery.

Padma Lakshmi:  I am just curious. You say that when you went on these medications that things did improve for a while. Did you pass the nurse in the hall from school? Did she say, “Hey, where’ve you been?”

MacKenzie:  Well, it was not quite like that. Like it would improve, but not exactly to the point where I should have been. I would still be missing school but not as much as I was before I went on the pill. But enough to still be like still not exactly right.

Padma Lakshmi:  You know when your body is right or not. When it feels right. That is a subjective thing but you are in your skin. You know when you feel good, you know when things are “normal”, right?

I am just curious about your other teachers. Your math teacher, your English teacher, your history teacher, did any of those teachers say, “Why are you missing so much school MacKenzie?”

MacKenzie:  No. Nobody really asked me because it was, yes, I was missing a lot of school but I would make sure I had my work in. It was not really a super big issue. My grades could have been better, sure, but it was not like I was failing anything.

Padma Lakshmi:  Okay good. I just want to talk briefly about how you feel now that you have had your surgery.

MacKenzie:  So much better. So much better. I can actually go to school now and live normally. I can do things. I do not have to constantly worry about being in pain while I am doing things. I do a lot. I put too much on my plate on purpose. Now I can actually get through that without having to stop and say, “Alright, I don’t feel good, let’s go lie down”.

Padma Lakshmi:  I used to think I had a really low threshold for pain. It turns out I have a really high threshold for pain. And I think you realize that after you have the surgery. As a patient you do not really know until you look back.

I wanted to ask you about your mom because there is an interesting third act here to this story. Can you talk a little bit about your mother’s gynecology?

MacKenzie:  That is not something I hear every day.

Padma Lakshmi:  It is not something I say every day! But we have your mother’s permission.

MacKenzie:  Well my mom, her gynecologist that she had been to for years and years – I am only finding out about this now as time goes on – but I guess my mom had a lot of similar pains and her gynecologist was like, “It’s probably just a cyst, you’re fine”, never really looked in depth into it. About a month after my surgery my mom was in for the same surgery. They took a whole bunch of endo out of her as well. We are twins now.

Padma Lakshmi:  Well, we are glad that a whole bunch of endo was taken out of both of you. And finally, before we finish I just…is there anything I have not covered or is there anything that you would like to go back and say to that school nurse? If you have, then that is fine but what would you say to all these school nurses?

MacKenzie:  The symptoms, they are horrible enough to begin with, but the isolation that came with it from…you know people think you are faking, whether they say it or not, there is always that insinuation. There is always that undertone. That for me made for a very horrible three years of my life. I knew everybody thought I was making it up. I became very depressed by it and it changed me in a way that was not good.

If any young girl can be saved from that then save her, even if it is just a question like, “Do you feel okay? Have you seen somebody about it?” That can help a whole lot as opposed to, “Why are you here again?”

Padma Lakshmi:  Puberty is hard enough without this layer on top of it.

MacKenzie:  Exactly.

Padma Lakshmi:  Can you talk about that a little bit? The isolation and the loneliness? We spoke on the phone in preparation and you talked extensively about that.

MacKenzie:  Even my pediatrician had given my mom a list of names of therapists she thought could help benefit me because she was not entirely convinced things were as bad as I said they were. I mean, I cannot blame her. Two and a half years of not finding anything was really hard, on all of us. I still have a very personal relationship with my pediatrician. She is my dance teacher, I see her every week. It was even from my family, well, my mom aside, my mom was on my team from the beginning, but even just having my sister say to me, “Suck it up, stop exaggerating, you’re fine” was so hard. My dad did not know what was going on, not my step-dad, that is my step-dad, he is really nice, he is cool too. I need to clarify that. Even my dad was like, “Well, you know, if they are not finding anything then there must not be something there”, and that was not the case at all.

When I was in pain I did not want to come out of my room because I did not want to have to face everybody saying, “Oh, well, you know, you’re fine. Get over it”. So my room kind of became my cave. The door stayed closed a lot of times. I became very, very withdrawn from everybody and everything. I took to hiding out in my room instead of talking about it. It was very hard because I did not…I mean…I knew I could have gone to my mom at any time I needed to but I did not want to burden her with it either. I was very…I guess the only word I can think of is withdrawn. Where most teenagers should be going out on Friday nights and having fun, I just wanted to stay in my room where nobody could accuse me of faking or being over dramatic, which is what I heard a lot. I spent more nights crying than I did doing homework. That was when it became really evident that something really needs to change because that is not okay either. When I cannot get through a day without actually just sitting there and crying for 20 minutes – then something is wrong. Nobody should have to go through that alone, let alone a girl who going through probably high school, which I think we can all agree will be the most difficult point in anybody’s life.

Padma Lakshmi:  Also the most fun, it gets harder after…there is this…sorry to burst your bubble. It is fun in college. College is really fun.

There is a sense of hopelessness as well as a sense of embarrassment because your period is not going anywhere, right? It comes back right around after a month, a lot of young girls that I speak to talk about that. I understand the not wanting your mom to put the specific reason why.

I want to thank you for sharing your story so openly. I want to thank both of your parents for bringing you here and giving us permission to talk to you. I sincerely hope that you too will be one of our soldiers and our messengers to other young girls who may not have been fortunate enough to find a Dr. Regard in her life, or a Dr. Seckin in mine. And maybe not fortunate enough to be one of the students of these nurses who are here today. Thank you so much MacKenzie. We wish you luck, we look forward to seeing you grow and blossom.

MacKenzie:  Thank you.