Friday, January 31, 2014

Bloggers Unite for EndoMarch: Week 3 - Letter to Representative

Dear Elected Representative,

I'm writing to tell you about a disease myself and 176 million other women worldwide are afflicted with.  It causes daily pain and can cause infertility, dashing the hopes of ever having children for so many women.  It can be debilitating and can greatly decrease the quality of life for those who have it.  It can take up to a decade for many to be properly diagnosed, which in 2014 is astonishing and unacceptable.  So many doctors are misinformed and are telling patients things that are just plain wrong.  

This disease is called endometriosis.  It occurs when tissue similar to the lining of the uterus is found in other places in the body.  It breaks down every month when a woman menstruates but has nowhere to go so it creates adhesions and scar tissue.  It can fuse organs together and and cause irreversible damage if not found in the early stages.  There is no cure, and the best treatment is currently excision surgery.  

On March 13, 2014 a wonderful event will be happening in Washington, DC and dozens of country capitals across the world.  It is called the Million Woman March for Endometriosis and will be a widespread effort to raise awareness for the largely unheard of disease.  The main goals of the march are to educate and also to bring about change.  Introducing early screening in schools and developing less invasive diagnostic testing are two of the hopes for the near future. 

I, myself, believe I've had endometriosis since I was around twelve or so.  I grew up thinking my pain was normal and never sought help until my mid-twenties.  Had I known that that type of pain was not just my lot in life as part of being a woman and that something was actually wrong, I could possibly have been spared over a decade of pain.

I urge you to get involved in any way you can whether it be attending the march or speaking with your fellow elected officials.  The women you represent deserve a cure, and I believe we can all work towards that together.  To learn more about the EndoMarch and how you can make a difference, please visit

Thank you for your time.

Wednesday, January 29, 2014

Snow 'n Stuff

It's been a weird week!  The afternoon after I last wrote, I was struck down with the freakin flu.  It was not pleasant, and I was miserable for quite a few days.  I missed two days of work last week, but I'm lucky that I have a job where that's not such a big deal.  I was in bed for five days straight and am still feeling a little funky.  Mostly better though.

I'm missing even more work this week because of snow!  We left early yesterday because of bad conditions and had several inches of sleet on the ground before it even started snowing.  Woke up this morning to several inches of the actual fluffy stuff on top of all the ice.  I made it into work for a couple of hours but was the only one, and who knows what will happen tomorrow.  My boss is of the wait and see mentality.  I know I can get in, but everyone else lives a lot farther away and can't.  I hate missing so much work!  This next check is not gonna be good.

But, I did get to play in the snow with the pup today, and we had a great time.

He absolutely loves it.  He runs and snarks and tries to catch the snowballs I toss to him.  It's pretty adorable.

In other news, last week my oldest "sister" let everyone know that she is pregnant.  So happy for her, but the way she told me was very strange.  She called me and said she wanted to give me a heads up about something.  She asked what I was doing in August.  If I'd like to come spend a few days with her (she's a couple of hours away).  To help with the new baby.  I'm all.... what now?  She never came out and said it, so I had to ask her if she was pregnant.  To that she said yes.  She always has been a weird girl, but I love her.  Grr...

Like her sisters before, whenever they announce they're pregnant with their first, I send flowers.  Sent her these...

They reminded me of when she got married.  She was in a blue and white dress and they both had yellow flowers.  She liked them and called to thank me.  Said she couldn't remember the last time she had flowers delivered to her.

The boyfriend and I talked a little more about the future.  He said he's planning on proposing this summer after he moves in and can save some money for a ring.  I'm almost at the point where I say screw the ring... let's just do it and get on with things.  I'm not always good at waiting, and this latest pregnancy announcement has got me even more anxious.  Sigh... in good time.

I think that's all my news for now.  Gotta do this week's EndoPost soon, so that will be on the way!

Tuesday, January 21, 2014

Bloggers Unite for EndoMarch: Weeks 1 & 2 - Basic Info and What the March Means to Me Personally

As I briefly mentioned before I will be attending the Million Woman March for Endometriosis in Washington DC in a couple of months.  I'm pretty damned stoked about it!  I just found out about this bloggers uniting thing and thought it would be awesome to participate.  Now, you and I both know that this blog has always been more like a teenage girl's diary than anything else, basically because it's where I come to vent and talk things out.  I thought it would be interesting to actually write about something important, so here we go....!

The EndoMarch is happening in country capitals all over the world on March 13, 2014.  Leading professionals in the endo field have organized this event to raise awareness for the ever-daunting endometriosis.  The hope is to bring much needed attention to this widely unheard of and misunderstood disease which affects so many women.  Everyone can be involved, whether attending in person or in spirit.  Registering is super easy and you can find everything thing you need to know here.

My last post (which you can find here) really ties into what this march means to me.  Since it's got a brief breakdown of my history with the disease, I won't go into it much again right now, but I will echo the feelings behind it...

I wish more than almost anything in this world that I had known what endo was back when I first started menstruating.  I wish I had known that the pain I felt was not normal even though other women in my family experienced the same.  I wish that I had sought help back then and possibly have been spared over a decade of excruciating pain.  I wish that I didn't have to wonder every single day about the status of my insides.  I wish that I knew if I'll ever be able to create a little life one day.

When I first learned of the EndoMarch, a smile spread wide across my face.  I look forward to it with great anticipation and I feel hope.  I am so very thankful that this disease is being taken seriously and that great effort is being put forth to do something about it.  To bring awareness of this "taboo women's period problem" to the masses.  To get women properly diagnosed and treated years earlier than they have been in the past.  To prevent damage that late diagnosis can lead to.  To one day find a cure.

I can only imagine how empowering it will feel to be standing in our country's capital as part of a worldwide event surrounded by so many endo sisters and supporters.  It's gonna be pretty awesome.

Wednesday, January 8, 2014

A Bit on Endo

I don't think my birth control is working as well as it used to.  It had been my miracle drug for pain management, but it's been slowly sliding downhill lately.  The everyday pain had been gone, but it's slipping back in.  The "that time of the month" pain is getting stronger with each passing month, but luckily pain killers still help.  I'm spotting for several days again before and after AF.  The getting really emotional for no reason right before AF arrives is back as of yesterday.  I wanted to cry all day at the slightest things for absolutely no good reason, and I hate it.

I'm not looking forward to how I'll be when I finally go off the birth control to start TTC again.  (I'm kinda hoping it'll be later this year, but as with everything else, I guess we'll see.)  When I came off to start TTC the first time, it got weird.  My body was doing things it never used to do before I ever started taking BCP.  Beforehand when I was a teenager and in early 20s, I would get debilitating pain at the start of AF that would last for a few days.  I would barely be able to stand upright or walk... I remember crawling to the bathroom all the time, crying the whole while.  My back and bowels were affected.  And the whole time I thought it was my normal because other women in my family were affected the same way.  Never did I know that that type of pain was definitely not normal.

Then I started taking BCP and started to feel better.  I took them for about two years until the ex and I were ready to start TTC.   That's when my body started doing more weird things.  I started spotting at odd times of the month.  It started as a few days after AF left and a few days before she arrived the next month.  It worked up to every day in between, so I was bleeding to some extent every single day.  And I started experiencing mittelschmerz, which I never had before.  It started when it should, when I would be ovulating, but it also escalated, and I was having similar sharp and stabbing pain every single day.

I started doing research, and that's when I first learned of endometriosis.   As I read through the symptoms and realized I had a majority of them I wondered if it could be the reason I'd had so much trouble through the years.  As it turned out, my doctor found a cyst behind my cervix during a routine exam just a couple of months later that was biopsied and confirmed as endo.  Talk about timing.

It makes me mad that I'd never heard of the disease before.  As many as one in ten women have it, yet very few people have ever heard of it.  Had I known about it in my teenage years, I could have taken action then and been spared years of pain.  But I thought it was just my lot in life as part of being a woman.  It also angers me that so many doctors do not have correct information on the disease.  A lot of misinformation is still floating around and some of the things I've had doctors say to me about it still anger me to this day.  Having experienced that, I am certain now that if I do ever have a laparoscopy, it will be done by an endo specialist.

It's interesting to me how this one disease can affect so much of your body.  How it affects more that just the reproductive organs and can disrupt the proper function of others.  When this sciatic pain was at its worst a couple of weeks ago, when I could barely walk without being in tears... I started spotting.  Could it be related?

Anyways, back to the birth control.  I wonder what will happen when I stop taking it again.  Will it be like it was the first time?  Will the pain be the same, or any better or worse?  Will any new things develop?

Will I be able to conceive?