Endometriosis: What you didn’t know…

I’m in hopes that by telling this story some woman out there somewhere is able to conclude that the pain they 
have been suffering with is not something that they’re just imagining.

As women, we know all about the problems we can have such as ovarian, cervical and uterine cancer.  We are educated on std testing, Pap smears and breast exams.  We get regular check ups just like the doctors say to do.  

But there is a secret disease out there that doctors and mothers and educators don’t always inform us about and that’s called endometriosis.  

When I was 25 I started having really bad cramps during my period. My doctor chalked it up to nothing more serious then menstrual cramps and I was made to feel like I was being overly dramatic about them. So for years I found myself curled up in a ball on my bed crying thinking that all women went through the same things every time they had their period. 

The pain I felt was like no other.  It was worse than any version of labor and delivery. It felt like I was literally being stabbed from the inside. There was no amount of medicine, there was no amount of stretching or moving that could relieve my pain. And for years I let it continue thinking it was just a side effect of being a woman.  

After having my son the pain only got worse. I remember my husband laying by my side as I cried and screamed in pain feeling helpless that he couldn’t console me. It wasn’t until a few years after my son was born that I finally found a doctor who could tell me what was really going on. I had endometriosis. It had gone on for so long that I was already in stage four.

I questioned her diagnosis not realizing that this was something very serious. I had never heard of this disease before. It made no sense to me and I spent night after night tirelessly searching the Internet for information about this disease that no one had ever warned me about.  

I was told that there was no cure for this disease. The only option I had was to have a full hysterectomy. My first surgery was an laporascopy procedure where they go into your stomach with a camera and look around to see what’s going on. Then They take a laser and try to burn off the areas where you are being affected.  My doctor told me that I had the worst case of endometriosis she had seen her 20 years of being a physician.

If you’re squeamish do not read on as I detail what this disease actually does to you. Basically your uterine lining escapes sure uterus and attaches itself to organs inside your body like bubblegum. Or cement. And then when you have your period those pieces of your uterus bleed and burn and spasm causing pain in all areas where they are attached.  It’s like having someone squeezing all of your internal organs all at once. That’s the only way I can describe it.

I was later put on hormones to try to suppress the pain and keep the disease from coming back so viciously.  

Unfortunately for me when I found out that I had this disease I had not been at my job long enough to be able to take FMLA. So I waited a full year before having my next surgery. During that year was probably the most excruciatingly painful and stressful time of my life.  

I went in every three months to have another shot of progesterone that was supposed to help keep the symptoms at bay. But that didn’t work for me. The only thing though shots did was send me on emotional roller coaster that I could not recover from. I mentally thought that I was losing my mind. From highs to lows daily I’m sure it had an effect on myself and my family. 

Finally the day came, the day I had to decide that my family would grow no bigger than it already was. There would only be one child in my life and in having the surgery, there was no coming back. I could never change my mind.  I cried night after night wondering if I was making the right decision. And then the pain would come. I thought that I could find a way to push through it and continue on with life in hopes that I would have another child.

And then the decision was made. I would have the surgery. I would spend the rest of my life wondering what could’ve been. But I knew that I had to make this decision for myself, for my own health, and quite honestly for my own sanity.  

I was never more emotionally unstable than I was that day that they took my ability to have more children away from me. I wondered to myself how could this happen to me? How could I not have known this disease existed? There was all this information out there about all the other things that could happen to a woman. Why wasn’t this information readily available to me? 

After the surgery there was some version of depression that I went through knowing that I had made a decision that will impact the rest of my life. I will never hold another baby that is mine. I will never know what it feels like to have another child growing inside me. I will never have another bond with another person the way that I did with my son.

But as the months went by I found a way to move past that. I appreciate the child  that I already had. And found happiness in knowing that I had done the right thing for my health. But what about all those other women out there that have no idea that this is happening to them?

Now at 35 I feel content with my decision. I feel healthy and happy and quite honestly relieved that I will never have to go to Walmart or send my husband to buy tampons again. I will never know the pain of menstrual cramps. I will never have to stress about having any of those cancers that I mentioned before. Because quite frankly I don’t have any of those parts.  Yes ladies, they took it all. Cervix, uterus and ovaries.  It was that bad. Most likely because I went so long not knowing the truth. 

Of course there are people out there who will ask me if I ever intend to have children again. And I have to make the decision to tell them about my condition or just smile and nod.  And when I tell them the reality,  have them give me those oh so consoling looks of pity about how I’m so young and unable to have more children. But then I tell them not to pity me because I no longer have to suffer in pain. And I already have a precious gift in my son and he is a miracle in himself. 

Yes of course there are some side effects that I was unaware would happen after my surgery. The hot flashes, the night sweats and being thrown straight into menopause in my 30s was a very unnerving situation to be in. But I’m okay with that now. My emotions are stable. I feel leveled out physiologically.  I forgot what that felt like. 

But what I hope people will get from my story, is that you are not alone. If you are having issues such as mine and you have talked with your doctor about them and they are doing nothing, seek out someone who will. I have run into so many women in these past few years suffering from the same condition I had, not knowing what the answer really was. And when I tell them about my story, they talk to their doctors about it, are able to be properly diagnosed. So I know what I went through was for a reason.  To help educate those who don’t know the facts.  

So don’t let the pain that you’re suffering from be something you just “deal with”. Because that’s what your doctor told you to do. It is not normal to feel like you’re dying inside. It is not normal to curl up in a ball and scream in anguish every month.  It is not normal to have a roller coaster of emotions going on inside you daily because your hormones are so imbalanced due to this disease.  

Seek proper treatment ladies. Take care of yourself. And when faced with making the hard decisions, realize that you are not alone. You need to do what is right for yourself, for your own health and for the sanity of you and your family.  And when you find that this is something you are dealing with, tell others about it. Tell your friends, tell your mother, tell your sisters, tell your daughters to look into what might really be going on inside them. Because like I said, no one told me about it. And my doctors seemed oblivious to the idea or the possibility that I had it at first.  

More than 5 million women in United States have endometriosis. It effects most women between 20 and 40 years old.  One in four women have this disease and do not even know about it due to inaccurate diagnosis or incompetent physicians.  

Get the word out about this secret disease.  It’s real ladies! And chances are someone you know is suffering from it right now.  Could it be you? 


One thought on “Endometriosis: What you didn’t know…

  1. This sounds awful. Have horrid period cramps for 20 years, followed by surgery, followed by insta-menopause.

    I have terrible period cramps, but they’ve got to be better than menopause . . . right? In the past, when I went to a doctor for “lady issues”, I was told anything I was experiencing was just stress.

    Like

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