February 12, 2014
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/
I am writing to let you know about an upcoming even in Washington, D.C. I am unable to attend this event personally but I support this cause wholeheartedly and I’d like you to as well. On March 13, 2014 women AROUND THE WORLD will be marching in an effort to spread awareness and educate governments, health care professionals and the general public about a disease called Endometriosis. This is a disease that affects 1 in 10 women. It causes debilitating pain. It causes infertility and pregnancy loss. The only effective treatment is excision surgery. It takes most women TEN YEARS to be properly diagnosed. Most OBGYNs are not properly trained to treat this disease. Many well-meaning OBGYNs treat it incorrectly, often resulting in worsening symptoms, because they are not properly trained.
I myself, having been diagnosed years ago in another state, recently saw a highly recommended OBGYN here in [major US city]. She told me everything she COULDN’T do to help me. She was completely unaware that an endometriosis excision specialist was practicing 45 miles away in [city]. Perhaps she’s a good obstetrician. I wouldn’t know since this disease (either directly or indirectly) has left me infertile and claimed most of my reproductive organs. But obviously she wasn’t properly trained to treat this disease.
This happened to me in 2013 in a major U.S. city. Me, an educated middle class woman with good health insurance and access to quality medical care. What about all the women who don’t have insurance? Or the women who don’t know how to do their own research to find a specialist? Or the women who do but don’t have the means to travel (often out of state) to get that care? Or the women whose insurance company says that doctor is out of network so surgery will not be covered? What about all the younger women and teenage girls being told that painful periods are normal and they should just be stronger because doctors are not trained to spot the symptoms? Meanwhile this disease is wreaking havoc on their bodies and their doctors are making them question their own self worth.
For years women have been told this pain is normal. Or that it’s all in their heads. That they are not strong enough. That it is their fault they are in pain. That they are making it up for attention. That they are drug-seekers. Meanwhile they are losing jobs, babies, quality of life, organs/organ function (and not just reproductive organs). We are told we are not strong enough or that these things are due to other causes/conditions.
And so we suffered in silence.
It’s time to end the silence.
We need awareness. We need research. We need doctors who are better trained.
Now we are speaking out. And we’d like your support.
This disease may not actually kill women like breast cancer does but it’s every bit as serious a disease as cancer. If you are not moved to help women who are suffering by your heart then, if you prefer, I’ll give you a financial incentive to support this cause. As a number crunching data geek it pains me to say that I have no idea what the exact figures are but I have to wonder how many billions of dollars are wasted on surgeries for endometriosis that do not actually help the patient because they are the WRONG KIND OF SURGERY? Women with endometriosis, once they are diagnosed (which can currently only be accomplished through surgery), have A LOT of surgery in their lifetime. And it is often the wrong surgery. Better education leading to only performing EXCISION SURGERY could cut healthcare costs in the short term by eliminating the need to repeat a botched surgery. More research could lead to a diagnostic process that doesn’t involve surgery at all. Or maybe even an effective treatment that doesn’t involve cutting a woman open. Who knows what research could discover?
For more information about this worldwide event and about this disease please see http://www.millionwomenmarch2014.org/
P.S. Thank you very much for passing the Affordable Care Act. Although I currently have insurance through my employer I was once denied insurance for a pre-existing condition. Guess what condition? Endometriosis.
January 23, 2014
Why am I writing about it? Because Casey told me to. And I want to help spread the word about this important cause. Because, as you will soon learn, even though endometriosis has affected me directly I feel I’ve gotten off lightly. Many other women have to fight much much harder than I and I want to help them.
I was first diagnosed with endometriosis at age 20. It took me only 2 years to get that diagnosis. For most women it’s more like TEN YEARS. I was lucky to have a doctor cousin who listened to me, did not blow me off or think I was crazy, did not tell me that sex was painful because I was “doing it wrong” (Yup, totally heard that from a doc), and who finally said, “Has your OBGYN mentioned endometriosis? Ask him about it.” And boom – diagnosis. Well, first SURGERY since that’s the only way to get a diagnosis.
If only it really were that easy. The biopsy came back negative. Which didn’t phase my doctor. He stood by his diagnosis. Unfortunately I moved around quite a lot so my next doctor just saw the biopsy results and said, “No, you don’t have endometriosis.” But he was willing to go along with my wish for Depot Provera and even kept the diagnosis code on the records so that insurance would cover it. This was way back in the day when insurance wouldn’t cover birth control if you were using it for *ahem* birth control but only if you were using it for something else. Oddly, that helped me out not just financially but by keeping the diagnosis on my records even though that doctor was skeptical.
I remained on some form of birth control for many years. That was enough to keep most symptoms at bay so I never lost my job from being out sick too often. I never ended up in the ER because the pain was so horrible. So many women do. So many women have surgery after surgery – often with well meaning but untrained OBGYNS – and still get little to no relief. They can’t holds jobs.
I do know what it’s like to see doctor after doctor, have test after test, and get no answers. Endometriosis rarely shows up on imaging tests. I know what it’s like to be poked and prodded and probed only to ultimately be met with that doctor look that says, “It’s all in your head.” Just the process of getting the diagnosis and/or determining if all your symptoms are due to that one diagnosis or if you perhaps have other things going on…that process itself is exhausting and fraught with fear of hearing, “There’s nothing wrong with you. Stop malingering.”
Although my physical pain from endometriosis has never reached the level of so many other women’s pain, I absolutely understand the psychological side of things. My story is actually more complex than I’ve shared in this post but the gist remains the same. The reason it’s so incredibly hard to get doctors to truly listen to you is because the doctors themselves need to be better educated about this disease. OBGYNs who are not experts in endometriosis treatment/excision need to stop telling patients they know how to treat this disease. Because they don’t. Doctors across all specialties need to be more aware of this disease so they can recognize its symptoms and refer their patients to qualified care. And maybe they should check their egos at the door and refer women to qualified care even when they DO recognize the symptoms and agree with a prior diagnosis – instead of offering sub-par care (this happened to me recently). And when a celebrity such as Padma Lakshmi doesn’t get diagnosed until age 36 you have to stop and say, “Houston, we have a problem.”
It’s a big problem affecting 1 in 10 women worldwide. The first step in fixing a problem is acknowledging that you have a problem.
AWARENESS, bitches. —> EndoMarch
January 16, 2014
Bloggers unite!! Form of…Advocacy!
What? This is not the Wonder Twins?
Damn. I really wanted special powers.
Well, it ought to be. Because we’ve got to send a message and that’s what the EndoMarch is all about. I personally will not be attending but I support the cause and will be participating in this Blogging Challenge for two reasons:
- I support the cause (duh, I just said that) because this disease has certainly impacted my life
- The lovely Casey over at ChancesOur might go Yonkers on me if I don’t. 😉 And hopefully she will forgive me for plagiarizing her post (pretty puhleez?)
So…what is EndoMarch and why should you care?
EndoMarch 2014 is an endometriosis awareness event that is happening in cities WORLDWIDE on March 13th, 2014. Yes, I wrote WORLDWIDE folks – that’s how important this issue is. In the U.S. it will be in Washington, DC. But this is a worldwide event because endometriosis is a disease that effects at least 1 in every 10 women, yet it takes on average TEN YEARS for women to get diagnosed due to the lack of education and awareness in the medical field and the general population. There is very little in the way of public awareness for the disease. Women with endometriosis often suffer in silence. Women often are left misunderstood and lose their jobs, friends and the support of their family while left in chronic, debilitating pain. Women lose their organs, their pregnancies, and their fertility as well. Endometriosis has a profound impact on the lives of its patients and those near to the patient. The only way we will see improvement in awareness of the disease, money raised to find better diagnostics and treatments for endometriosis is to come together as a community and make some noise. We need to be heard.
You can register here to attend the march today. Contact a march precinct manager to see what is happening near you. Join Casey and Melanie in Washington D.C. Casey is promising hugs to all the ladies she connects with online. That alone is worth the trip!
July 22, 2010
I was reading someone else’s blog and came across her reasons for starting her blog anonymously. She has since ‘come out of the closet’ and the blog is no longer anonymous. She stated that one of the reasons she started her blog and shared it with real life friends and family so that they would know what she she was going though. That makes sense. But she was protecting her identity and not revealing any identifying info so others – presumably strangers – couldn’t figure out who she is. That struck me as a bit odd. Mostly because that’s not my reason for maintaining my anonymity.
I remain anonymous for different reasons. I don’t share this blog with friends and family. If I did I wouldn’t be able to use it the way I do – as an emotional outlet and a place to vent about people I know IRL. It’s really more of a journal. Which likely means it will never become popular or make it on anyone’s list of Must Read Infertility Blogs. And I’m OK with that. It serves my purposes. It acts as a journal for me and it’s also a way to share my experience with others who may be having similar experiences. Through blogging, and twitter, I’ve discovered other women who are going through the same things. It makes me feel less alone. So maybe this blog can do that for someone else.
As for identifying information… there are about a zillion clues to my real identity contained in this blog (although I suppose you wouldn’t pick up on some of them if you don’t already know me). I don’t work that hard at remaining anonymous. I don’t use real names so that all our identities are somewhat protected (I really don’t want to out Right Guy – that’s not my place and he’s a private person). But if someone were to try and figure out my real name, I don’t think it would be that difficult and I don’t think I’d care that much. I think I’d have more trouble with friends and family reading this blog than ‘strangers’ finding out my real name.
I wrote those paragraphs a few months ago and have had this post saved as a draft ever since. At the time, I had an original feeling of needing to explain my choice in remaining anonymous. But after some reflection, that feeling passed and just didn’t quite resonate with me. So the post has been sitting in the ether, waiting to be either deleted or expanded. Well, today, after reading Keiko Zoll’s first installment of A Belly Full Of Fire I decided I needed to finally revisit this topic. Because I’m torn.
I would really like to Take The Pledge issued by Resolve. I am open to my friends and family about my infertility (although I can’t say I’ve shouted it from the rooftops). And I have no problem using my real name to advocate for infertility issues. But I DO have a problem with using my real name on this blog. And I feel that if I’m going to do it, I should do it ALL THE WAY. Dilemma.
What to do?
- I could start another blog/twitter account under my real name and use it for advocacy and this one for venting. But that seems silly. And if I’m going to be a health advocate I would have to do it for not just infertility but also lung cancer and other senior/caregiving issues. And who has the time?
- I could remain silent but that seems irresponsible. Although, there is also a part of me that feels like I’m too old. I feel like the ladies with POF in their 20s have a much better and bigger soapbox to stand on. I suppose I’m still dealing with feelings of guilt that I simply waited too long. Which is really not rational given that my symptoms, masked for who knows how long by birth control, started at age 34. It is also not rational given that I did TTC with my ex-husband when I was 28. Back then I had endometriosis and it turned out he had an abysmal sperm count. But somehow I still feel ‘judged.’ I still feel like everyone thinks I just put off having kids to further my career or something. And that wasn’t it AT ALL.
- I could start using my real name on this blog/twitter. SCARY.
I guess I need to deal with all the aforementioned guilt first. Ooh, what fun. ::sigh::
I suspect this guilt runs much deeper than I’m even aware of. Even the name of this blog, Fox In The Henhouse, is a (not so) subtle nod to the guilt I feel that I somehow caused this. Because I am the Fox. So I’m essentially accusing myself of stealing my eggs. Boy, am I a piece of work. 😉 Again, good thing I have a therapy appt in a few hours.
Anyone got any advice on overcoming all this crap and just going public?