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.