Endometriosis: Not Your Mother's Disease

After I was diagnosed with Endo the response I got the most often was 

"But you're so young!" 

Yes, I was young. I was 20 when began noticing the severity of the disease, but found that symptoms really began around the time I was 14. After diagnosis I began searching for other women my age to read about their experiences, or to try and connect to someone else feeling how I felt. I maybe came across a handful of profiles of women under 27 that spoke about having Endometriosis and living with the disease. The reality was that very few women received diagnosis before the age of 32. 

So what happens when a 20 year old is told you have a hormonal imbalance that will change your life forever? What happens when you are told you might not be able to have children before the thought even enters your mind? What happens when you are told you have three years to try for children before  your chances drop dramatically, and you still don't even have a steady boyfriend? What happens when you have to go through chemical treatment while you are still just trying to finish school? What happens when your first time having sex hurts like you expected, but so does every time after. What happens when you trade student loan debt for medical bills? 

It's like listening to your life end before it even begins. It's like being a stranger to yourself in the years when everyone is telling you to find out who you are. 

 I am not just speaking about infertility, but about the entire package that comes with having Endo.

It's the surgeries, the medicines, the acupuncture, the diet, the bleeding, the boating, the crying, the weight, the headaches, and the emotions. 

This disease is no longer for the middle aged. It's hitting girls during their most fragile years and leaving them to face a lifetime of internal chaos. We start frantically planning for what we should do next. 

Do I freeze my eggs now?

What if the Endo comes back?

Do I do Lupron and go through menopause in my 20's?

Am I okay with a hysterectomy in my 30's?

Will early hysterectomy raise my risk of Ovarian Cancer when I am older?

How do I explain to my future husband about Endometriosis?

How much is IVF?

Does insurance cover any of this?

How will I maintain a job with my pain?

Do I explain my disease to my future employers?

So I have to avoid dairy, alcohol, gluten, and soy for the rest of my life?

It's all just... chaos.

You are left with so many questions. You are left sad and afraid of what this means next. You feel alone. You feel different and broken. It's no wonder so many women suffer from depression and anxiety. I learned while in treatment that the disease had been dubbed "The Invisible Illness".. it sounded like a horror movie, and well, it was.  When relief can't be found you lose hope it will ever get better. When one surgery follows the next you begin to think nothing will ever change. You only have questions never answers. 

So why is it that when I am doing most of my research the only answers I am getting are from other women suffering? I don't understand how still so much is unknown about this rampant disease. I don't understand why we are left to suffer until finally we break down and give away our insides. They can't even diagnose it without cutting into us. I don't understand how the term Endometriosis still goes unrecognized in conversations. I still don't understand why I am having to use a cancer screening test that I pay for out of pocket, because we don't have our own and insurance won't cover it.

1 in 10 women have Endometriosis in the US and we still don't have our own screening test. 

I just don't understand why are we not talking about this as soon as girls hit the age of menstruation. I complained for years, and still not one doctor asked me about Endometriosis being in my family. I even had one tell me I was just to young! Endometriosis doesn't have an age limit. I began this journey at 21 and I will face it for the rest of my life. I am writing this today because I am angry. I am angry and saddened at the phone calls I get from other women talking about the hopelessness and pain that they feel. While nobody ever told me life was fair, they never told me how painful it would be. So I want to talk about it. I want to talk about it a lot. I want to ask questions and give answers. I want to meet other women and I want to hear their stories. I want to figure out what comes next in the medical word for us.  I want to help in any way I can. I want to stop being passed around until I can meet a doctor who can carry a conversation about options, while understanding I am a human and being pumped full of hormones or being cut open every other year is just not working. 

Recently I found a website called http://www.myendometriosisteam.com 

It's like Facebook for women with Endometriosis. It has really helped me connect with women of ALL ages about having this disease. It's open and honest, and a very real look inside what living life is like and can lend some much needed support. You're not alone in this. There are others out there who do understand. Never be afraid to ask questions or to push for answers. 

Endometriosis is no longer my mothers disease, it's mine too.

Yellow Bird Visuals Photography 

Time for Teal: My Life with PCOS

Thank you.

Thank you, thank you, thank you.

I logged on the other for the first time in about 4 months last night and almost fell off the bed at the number of views my blogged has received. 

Thank you for caring enough to read my story. 

It's been a while since my last post, and while my first post seems like a lifetime ago, my life with PCOS and Endometriosis is still very present. 

In September I had some concerning symptoms return and I scheduled an ultra sound with my Gynecologist to make sure everything was ok. The ultra sound showed my ovaries had once again become riddled with cyst, like an "overloaded chocolate chip cookie"  the technician put it. Now, before you go preparing my hysterectomy get well kit and my pamphlet for entering menopause I also took a blood test.  This blood test is used for detecting cancer, yet it also has a handy side effect caused by one disease causing false positives...

DING DING DING! 

Endometriosis

My levels came back low, meaning the Endo in my body was still at bay from the lupron.  My big bad battle with Endo was still won, but all along I was a double threat. I once again have active PCOS. As soon as I started menstruating again my PCOS flared it's nasty head. At first I felt defeated, as though I spent all my time focusing all my energy on one disease just to have been taken down by another. I had done everything the doctors told me to. I had taken all the medicines they had given me. I had lost all the weight I could. I have eaten all the nuts and berries I could fit in my purse. I haven't had real milk, coffee, or red meat in a year and a half. I ran an hour a day, followed by yoga for another 30 min. I have enough vitamins and supplements on my counter to double as my own drug store. 

I wish I could tell you my story ended with me getting completly better and my diseases disappearing the second I got off the operating table, but it didn't. It just doesn't work like that. Being a fighter doesn't mean fighting only until you have won, it means getting back up when the hits don't stop. 

 It means continuing to live your life to the best of your ability. 

When you have Endo and PCOS you learn the art of adapting. You change your life to be able to live it as best you can, and it can be hard and heartbreaking. I would never wish hormonal issues on my worst enemy. It is easy to become to depressed and unresponsive. If someone came up to me and told me to just "tough it out" I would put my extra amount of testosterone to good use. It doesn't get easier for you after diagnosis, it just changes you. You have to make the decision on how you respond to it. 

It took me five months to clearly respond to this...

I did not have as much time being completely  PCOS free as I wanted. I am disappointed all of my life changes didn't mean absolute protection from ever feeling pain again. I am more aware of the severity of my conditions. I begin to look at a bigger spectrum of outcomes outside my one plan as now being possibilities. 

This doesn't mean I stop or give up just because it hasn't provided me what I wanted.  I am still Endo free until the test shows me differently. I am still able to have children until my doctor firmly tells me otherwise. My PCOS is still controlled until my ruptures return or life become unmanagable. 

I have to look at this from a day to day basis.

Today I didn't wake up with a cystic nodule.

Today I was able to work out for an hour without stopping from pain.

Today I am still at a healthy weight. 

Today I didn't have a cyst rupture.

Today I didn't bleed through anything.

Today I didn't have a clump of hair on my pillow.

Today I didn't have a nose bleed. 

I may not be where I thought I would be, but I am a hell of a lot farther than I was. I'll take it for now. I'll take today and leave tomorrow to be it's own.  I can only live my life adapting to what today brings, and that means steeling my heart to the things that may or may not come for me.

When it is time to laugh, I will laugh.

When it is time to celebrate, I will celebrate.

When it is time to feel, I will feel.

When it is time to scream, I will scream.

When it is time to mourn, I will mourn.

When it is time to fight, I will fight.

When it is time to be brave, I will be brave.

When it is time, I will. 

Live today to the best of your ability. Let go of the things you can't control or the questions you have unanswered for now. When the days come to face your fears and heartaches, face them with your heart and allow yourself to feel - but don't get pulled into that tempting darkness of hopelessness and defeat. Don't let your heart become consumed by your doubt that you will never have a life outside pain and heartaches. 

To have a life outside of having Endo and PCOS is difficult, you work at it everyday. You find a GOOD doctor who will listen, and that you RESPECT. This could also mean going to more than one. I have been to three doctors since my journey began. It's a relationship that like all other relationships needs an effort from BOTH sides. You have to talk honestly and openly to your doctor, as well as actually listen to them. You will need to have the courage to speak out against things you don't want to do or are not comfortable with. You have to understand that there are things you will have to do that plain suck. You can't eat a lot of foods. You will have to open your mind to taking birth control. You have to keep up with regular appointments and ultrasounds. You have to be as active as possible from day to day. On days you can run, run. On days you are in pain try your best to take some time to slowly stretching on the floor, or doing simple yoga poses to help relieve the cramps. Drink a lot of water. The topic of medications is a monster of it's own, but listen with an open mind and take time to think before saying yes, or no. 

Don't get discouraged when things don't feel like they are getting better. It will take time. Don't let negative stories or ignorant comments kill your passion to be better. They do not know your heart and they do not deserve your time. It will take a good fight and a strong heart. It will be scary, but you are braver than you know.