Well, March is almost over. Endometriosis Awareness Month is almost over and the EndoMarch came and went (but I didn’t).

In case you missed it, Casey put out a blogging challenge and it’s now time for me to wrap it up. But first, here are the previous posts:
Week One: Basic Info
Week Two: Getting Personal
Week Three: An Open Letter to Congress
Week Four: An Interview
Week Five – Goals
Week Six: Why Is This Important?
Week Seven: Spread The Word
Week Eight: Friends & Family

This post should combine Casey’s assignments for weeks 9 & 10. Except I don’t have much to say about them because I didn’t attend the EndoMarch. Which is also sort of why I didn’t post DURING weeks 9 & 10. OK, so maybe I have also been just a little busy with surrogacy stuff, too.

Since I did not attend the EndoMarch I can’t write about what I packed or what it was like to be there. But I CAN continue to spread awareness. But you know what they say, right?

A picture is worth 1000 words.

So how ’bout some VIDEO?

Here’s a short clip from my excision surgery last November.

WARNING: It’s only about 2 min long and is not too disgusting. At least compared to other parts of the video I have. But it DOES show blood and internal organs. If those things don’t make you queasy then take a peek.

So. Now you’re AWARE of what excision surgery looks likes.

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This week’s writing prompt from ChancesOur is:

Did you tell your friends, family, co-workers that you are going to the march? What were their reactions? If you are not going to the Endomarch you can answer, do your friends family and co-workers know about your struggle with endometriosis? Are they supportive?

But first, in case you’d like to catch up here all the previous posts:
Week One: Basic Info
Week Two: Getting Personal
Week Three: An Open Letter to Congress
Week Four: An Interview
Week Five – Goals
Week Six: Why Is This Important?
Week Seven: Spread The Word

Honestly, I’m not entirely sure how to respond to this prompt. I’m not attending the march so I haven’t mentioned it at work. My friends and family know I have endo. It’s not a secret. Nor is my infertility. But I also don’t shout it from the rooftops. I do my shouting here. I pull out my soapbox here on this blog.

But are they supportive? Yes. Mostly. They are certainly not NOT supportive. But it’s difficult enough for ME to process what this disease means for me so I can’t really expect them to really grasp it. It’s difficult for me to say that endometriosis is the cause of all my infertility or every laparoscopic surgery. That’s not really proven.

It is unclear if all my reproductive issues are due to endo. It remains unclear to even now what is going on in my body. That makes it difficult for me to say symptom X is caused by Endo. If I can’t reconcile these things in my own brain, how can I expect others to understand? How can I expect them to offer appropriate support?

But they try. And that is worth a lot.

The Unexplained

March 6, 2014

Recently [this post has been sitting as a draft for some time but that doesn’t really matter since this topic recurs on a regular basis] there was a discussion in the IF corner of the Twitterverse about whether it is better or worse to have an explanation for your infertility. This is an old topic that surfaces every now again – usually when someone who has unexplained (or not well-explained) infertility decides to stop treatments. She knows that stopping is the right choice for her but she still doesn’t know WHY fertility treatments didn’t work. It seems to be frustration piled on top of anger piled on top of heartache.

My infertility is explained – thrice over. Well…explained may not be the best word for it. But I have diagnoses. I can give a name to the cause of my infertility if not a name to the cause of the cause. Giving a name to a thing can give you power over it – or a sense of power. I have names I can bandy about: Diminished Ovarian Reserve, Endometriosis, Adenomyosis. I have test results like AMH, FSH, countless ultrasounds, MRIs and now a pathology report that validate those diagnoses.

In the end, no one can tell me why I have these issues. No one can tell me what caused them. Not even one of them has a known cause in my case.

But I have names to call out and curse. Unfortunately they are all too long to produce any catchy battle cries. “Curse you, Diminished Ovarian Reserve!” just doesn’t have a good ring to it.

Am I lucky? Maybe. Probably. Most days I think so because I’m a person who likes to know things. Also, in the world of fertility treatments I am a rare bird. I didn’t have to make the difficult choice to stop fertility treatments. My RE broke up with me and said your uterus is Swiss cheese please stop the madness. Most people who have gone through IVF don’t have such concrete evidence of what is wrong with their reproductive organs.

And so I am somewhat lucky. I can’t imagine not having a name for what is wrong with me or having doctors that say, “It’s just bad luck, why don’t you try again?”

Actually I CAN imagine not having a name for what’s wrong with me as I did go through that before getting the endometriosis diagnosis. For any health issue, fertility related or not, it can be mentally and emotionally debilitating to have symptoms and no diagnosis. Doctors start giving you that look. That look that says maybe it’s all in her head. And after a while you start to believe it, too. But for those of you with unexplained infertility your only symptom may be empty arms and a broken heart.

And for you I have a proposal. I have names but no ultimate causes. A name is just a word given to something. Why don’t you name your infertility? Give it a name. OWN IT. That’s why I named my uterus. Maybe it won’t work for you, but for me it has helped to actually embrace it, own it…then beat it the fuck down. I got to do that literally through surgery, but words can work too (The pen is mightier than the sword and all). So give your infertility some manner of -osis and start yelling at it.

Just pretend you’re Meredith Grey and invent something like “Hostile Uterus” (OK it’s not entirely made up). Or be cheeky and call it Raymond – because everyone does NOT love him – or some other name you dislike. I can see how screaming at George or Shirley that s/he’s an ugly sonofabeach and should get the fuck out could be therapeutic.

Or not. You decide.

[DISCLAIMER: In case it wasn’t glaringly obvious to you, it is not my intent to poke fun at people with unexplained infertility, merely to have fun with what could be a therapeutic process in dealing with it.]

Once again this post is late. This week…ahem…LAST week I was supposed to write about what I am doing to raise awareness.

I am blogging.
Week One: Basic Info
Week Two: Getting Personal
Week Three: An Open Letter to Congress
Week Four: An Interview
Week Five – Goals
Week Six: Why Is This Important?

I am tweeting.
@FurrowedFox’s #Endometriosis Tweets

I am Facebooking.
Well, you kind of have to be my friend to see that but, trust me, I’m doing it.

I also checked with my state coordinators for the EndoMarch to see if there were any local things happening. Some people are doing flashmobs and even making videos. You should check out Casey’s video here.

Or here.

Sadly there is nothing going on in my area. But I will spread the word about all the awesome things everyone else is doing.

yellow ribbon

Well…I’ve been writing about this for six weeks now, so…if you haven’t figured it out by now… you’re not gonna?

I guess that’s a cop out.

Why is it important?

As Shakespeare once wrote, “let me count the ways.”

Women are quitting their jobs. Or being let go. Because they can’t physically work. Or because the mental/emotional toll/sacrifice is so great that they are incapable of being productive. How can you support yourself, let alone your family, when your health will not allow you to hold a job? Yet these women are generally not eligible for disability. You can sign this petition to change that.

With no job comes no health insurance (until very recently). Lupron, debatedly an effective drug to treat endo symptoms, is damn expensive despite being generic. It’s been around for AGES but the pharmaceutical industry has managed to package it in new ways to keep prices up. Even if you believe it’s not a good drug (as many do), it is commonly used to treat endo symptoms. Yet it is beyond the financial reach of anyone uninsured.

Why is this important?

Because real women are suffering. Only awareness can help them. Awareness will bring education and research. Awareness will bring better treatments. Perhaps even (dare I hope?) a cure.

Week Five. Halfway there! If you’d like a recap…

Week One: Basic Info
Week Two: Getting Personal
Week Three: An Open Letter to Congress
Week Four: An Interview

The goals for marching are threefold: Empower. Educate. Effect Change.

Oh how I love alliteration.

Since I am not able to attend and I am not really integrated in to the medical community I think my main goal here will be to EDUCATE. My goal is to EDUCATE THE PUBLIC ABOUT ENDOMETRIOSIS. And I think I’m doing just that by writing these posts.

But could I do more? Probably.

But I have a lot of other things going on right now. So I’m going to attempt to educate without making myself crazy about it.

First up: Educate patients.

Think you might have endometriosis? Check here and then ask your doctor.

Do you know you have endometriosis but need an excision specialist for surgery? Check out this map to find an endometriosis specialist (hopefully) near you.

As with any health condition it is wise to be your own advocate. Or, better yet, bring someone with you to your appointments. Always ask questions, do your own research and challenge your doctor if what she says doesn’t correspond to your research. Make her explain her reasoning.

And if you are experiencing severe pelvic pain on a regular basis don’t let anyone try to tell you that it’s normal. It’s not.

I suppose it wouldn’t be a blogging challenge if I was on time with every post. This one is a bit late as it’s already Week Five (how did THAT happen?).
If you’d like a recap…
Week One: Basic Info
Week Two: Getting Personal
Week Three: An Open Letter to Congress

Part of ChancesOur’s EndoMarch Blogging Challenge is to interview someone going to the march. Given that so many of us in the Twitterverse and Blogosphere do not live near one another this interview was conducted via email.

Here’s what Jackie has to say:

1. Why are you going to EndMarch? What specifically made you decide to go?

I’m going to EndoMarch because this disease has been a major part of my life since I was a teenager. I wasn’t diagnosed until the age of 25, however, I have dealt with the pain since I was 12 years old. It’s affected me both physically and mentally. I’ve undergone two laparoscopies to excise my endo, however it always grows back, and it seems the pain gets worse every time. The major reason I have decided to go to EndoMarch however, is that Endometriosis has robbed me of my dreams for my future and family. It has left me infertile. I have been trying to have a child for over five years with no success. I’ve undergone 8 IUI’s and 1 IVF and suffered one miscarriage. I’ve given myself hundreds of shots in the belly and taken numerous pills in order to overcome my endo so that I can have a child, but to no avail. I suffer mentally from anxiety and depression because of the pain and hopelessness that over takes me.

By going to EndoMarch, I hope to be able to bring awareness to this disease. I want young women to understand how it can affect your fertility so that they might be able to take action sooner, by freezing their eggs or having children earlier. I wish for a future when endo can be diagnosed more easily and earlier, and be treated and cured.

2. Are you going alone or is your husband or someone else going with you?

I will be attending EndoMarch with my husband, Joe.

3. If someone else is going with you, why? Just to support you or does s/he have other reasons? (sightseeing is a totally reasonable answer btw)

My husband will be joining me because he supports me in all things. But also because he sees the agony that this disease causes me. He hopes that I can connect with friends and also doctors that might be able to help me in the future.

4. How has endometriosis affected your life/career/family?

Endometriosis runs almost my whole life anymore. Depending on my pain level, it dictates whether I go to work or if I have a paperwork day at home so that I can rest. It dictates whether I have the energy to visit my family or go out with friends. It leaves me anxious, exhausted and weary. The infertility it has caused has left me barren, which has left me with a deep sadness. Endo and its affects have made me almost antisocial; where I prefer to be at home alone or with my husband, rather than to have to go out in the real world.

5. What is the ONE thing you’d like the public to know about this disease that they likely don’t know?

The major thing I keep seeing is family doctors telling women that they have endometriosis through a testing other than laparoscopy. This recently happened to my niece in law, and I told her to tell her doctor that he could only correctly diagnose via laparoscopy. I want doctors to be more aware of the diagnosis and treatment of endo, that way they can correctly diagnose their patients in a timely manner.

All I can is…WOW. If you didn’t realize it before, perhaps you do now: this disease invades all aspects of your life. It can dictate whether you have children. It can dictate whether you go to work. Or even whether you can hold a job. And many doctors are still clueless about how to diagnose it – let alone treat it.

First I’d like to call your attention to something that Jackie did not mention but alluded to. Some days she can’t make it in to work. There is a concept of spoons that is used for people who suffer chronic pain/illness and it applies to women who suffer from endometriosis. The idea is that you only have so many spoons to get through your day. Some days require more spoons than others. But when you are out of spoons… you are out. You can read about it here. I myself have been lucky to not have many days that required me to count spoons. Others are not so lucky.

And so they are marching. In March. How many spoons will that require? Most likely the sickest will not be able to march. The poorest will not be able to afford to travel. But other women will march for those that cannot.

For more information about this worldwide event and about this disease please see http://www.millionwomenmarch2014.org/