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Understanding the Other Side

When you are first diagnosed with Endometriosis it’s hard to understand exactly what’s going on in our bodies but even harder is when you try to explain it to someone else. You can give them a list of symptoms – painful periods, Pain with bowel movements or urination, Excessive bleeding, the list could go on but for the most part that is a huge chunk of it. One of the worst things is getting that look that says you’re a wimp and then “Well I have heavy painful periods too.”

So how do you tell your family and friends why yours is different? And how do you explain it in a way that will make them see what you’re going through?

The first thing is you have to know what Endometriosis is. If you’ve been diagnosed with it then your doctor has already explained it but just to remind you, here is what the Mayo Clinic defines Endometriosis as-

“Endometriosis is an often painful disorder in which tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus. Endometriosis most commonly involves your ovaries, bowel or the tissue lining your pelvis. Rarely, endometrial tissue may spread beyond your pelvic region.

In endometriosis, displaced endometrial tissue continues to act as it normally would: It thickens, breaks down and bleeds with each menstrual cycle. And because this displaced tissue has no way to exit your body, it becomes trapped. Surrounding tissue can become irritated, eventually developing scar tissue and adhesions — abnormal tissue that binds organs together.

This process can cause pain — sometimes severe — especially during your period. Fertility problems also may develop.”

Now, in this definition, it says that rarely emdometrial tissue spreads beyond your pelvic region. This past December I had Endo removed from my stomach cavity, from off different places where it was eating along the lining of my stomach, and along some of my organs.  Everyone is different and my observation has been that Endo seems to not want to totally stay with the textbook definition of things.

Now that you know what it is, and you’ve talked to your doctor about what stage you are at and where all the Endo is in your body it’s time to tackle how to tell your family and friends.

The way I explained it to mine was similar to what the Mayo Clinic’s definition is. I simply told them that the lining of my uterus had gotten out of my uterus and was bleeding in my pelvis causing pain, scar tissue and growths. I explained to them that I had pain equal to an appendicitis every month and I was in so much pain that sometimes I couldn’t move, couldn’t speak, couldn’t do anything and would spend days in bed.  It’s also a very good idea to talk to your doctor about how to tell your family. I was around 17 when I was diagnosed so my mom was the first one in my family to talk to my doctor and get the first hand information. Find out if your doctor is willing to talk to your family members if any of them have a question.

When you first are diagnosed let’s be honest, it’s scary! In a way it’s a relief to find a reason for the pain but then you think “Oh my gosh, I have an incurable disease.”  It’s scary and it’s hard to wrap your head around in a lot of ways.  When you start to tell your family and friends remember how you felt that first instant you found out. When you felt like your world totally turned upside down because that’s how the people that love you are feeling too. Think about your mom, sister, daughter, and niece, think about how much you love them and how you would feel if they came to you and told you what you are telling them.

People react in different ways. My mom cried, some of my friends wanted to know what they could do to help me, some wanted all the details and some didn’t want to talk about it at all and still don’t to this day. When you tell someone you have to understand that each person handles things in their own way. As much as we need someone we’re close to and we love to reach out and support us that are not always the case. Sometimes we have to be willing to support them. Often times I have to remind myself that I’m not the only one affected. I’m not the only one fighting this fight. My parents, my fiancé, my close friends that see me go through these things; they are all in it with me too. I have to remember that even though I’m sick it’s not all about me. Watching someone you love fighting a long painful battle is never easy.

So to kind of give us all prospective on what it’s like to be someone on the other side of the fight I’ve asked my mom to give a little of her experience of what it’s like to be the mother to someone fighting endometriosis.

One of the hardest things I’ve ever had to do is watch Rachel fight this terrible disease. There are no words to explain the helplessness I feel when I hold her as she is in so much pain her entire body is shaking.  She is stronger than anyone I know.  She fights hers silently.  I would tell anyone who has a loved one who is fighting this disease to give them all of the encouragement you can to keep pressing on.  It is not easy as you watch this happen month after month and watch treatment after treatment fail.  We searched from the time she was fifteen years old until she was seventeen years old to find why she was in such severe pain.  She underwent test after test as her doctor searched for an answer.  Unfortunately, the doctor she saw at that time didn’t know very much about endometriosis and thought you had to be older to even have it. She began to act as if she thought it was all in Rachel’s head.  Finally, we had a break through during an ER visit.  A male nurse stuck his head in the door after hearing my frustration at the doctor.  He asked if we’d ever taken her to a Gynecologist and had her checked for endometriosis.  I said no and he advised me to give it a
try.  Thankfully he pointed us in the exact direction we needed to go.  I was so tired and frustrated with doctors by this time.  I was tired of seeing my daughter crying in pain and no one being able to give me a reason. But the helplessness and frustration didn’t stop with a diagnosis.  Then came the educating time and the disappointing news that there wasn’t much known about this disease and that it seemed as if it was put on the back burner with research.  It seems with this disease you have to just have a hit and miss time of trying to find an answer that works for you.  I know that someday someone will finally find an answer.  And until then I encourage you all….KEEP FIGHTING and pressing on and know that you have people rooting for you every step of the way!” – Lisa Bain

This is not an easy fight. And we cannot do it alone. We can’t get through this fight, day in and day out without the support of the people around us. So as you lean on “your person.” remember that it’s a fight for them too and let’s not forget the other side. Because we couldn’t do it without them.

Much love and pain free wishes!

The informational content of this article is intended to convey general educational
information and should not be relied upon as a substitute for professional healthcare advice.

This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.

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6 comments

  1. Rachael, Thanks for sharing your story. In 1991 I had a total hysterectomy because of endo, and it helped tremendously with my pain, but I know I am lucky. Surgery is not a solution for everyone and even after radical surgery some women still suffer. My heart goes out to everyone and anyone that suffers wit this horrible disease.

    Your Mom’s letter was heartbreaking, she sounds like a great Mom.

    mo

  2. Rachael,I totally understand what u r saying. Having such a supportive mom gotta help. I am in real need of the hysto.now at 33. I was 1st diagnosed at 14. I have 2 miracle babies & it kills when I can’t get up & do things w/them cause of the pain. I don’t have medical ins.& real hard to get any let alone affordable. I was also diagnosed w/cervical cancer at 16. It has gotten so bad it effects everyday life. In this country today I can’t get medical help at all. My teeth r destroyed because of all the meds & can’t get anyone to help. It’s a catch 22 in this world & my life is on hold in massive Daily pain over money. I just don’t understand that. My mother recently passed in July, she was my Only understanding go to. Luv a miss her very much,& u r very right, easier to fight the good fight with support. Hope this get better & go well for you.

    • Traci I can’t tell you how sorry I am for the loss. I can’t imagine not having my mother around to help me deal with it. Please know that I am praying for you and that if you ever need to talk I am just an e-mail away. ♥

  3. I am 18 and was diagnosed with Endometriosis a year ago. I’ve tried birth control, lasporoscopy, and as soon as insurance approves it, i am going to begin Lurpon Depot. In three weeks i am supposed to graduate and move on with my life… but have been stuck in bed for months. my pain is constant and doesn’t leave. This horrible disease has ruined my life and may even prevent me from walking at my graduation. My family has been there for me, but they just don’t seem to understand the pain and helplessness. I pray there is a cure found soon because i don’t want to live with this for the rest of my life.

    To begin with, i was only upset that i wouldn’t be able to have kids. But now, i just want my life back so i can enjoy bein a normal teenager for a while. I am horribly heartbroken as i write this because this weekend i missed my senior prom. My beautiful dress will sadly remain on the hanger forever. Hard to believe something that so few know about can cause so big of a change in someones life!!

    I have been considering a histerectomy, but parents and doctors say i’m too young. After reading Mo’s comment i think it’s the only way i will be able to finish school and fulfill my dreams. But i know that with God all things are possible and he has a plan. I pray he will help me make this choice between either giving up my dreams, or giving up the option of having a child someday. Endometriosis has caused me to hit rock bottom. i’m on my knees at this point and see no way of getting up.

  4. Run From The Cure by Rick Simpson – Check it out and form your own opinion. I believe it is what we all have been waiting for!

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