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11/18/2008

Endometriosis Blog: November Is National Prematurity Awareness Month

Today I was inspired to write a post after reading an excellent article posted by Kelly Damron!

Her blog is called Twin Peas Blog and Podcast: Infertility and Premature Birth resources and experiences.

I was just reading Kelly Damron's blog post regarding the fact that November is National Prematurity Awareness Month.

I didn't realize until reading Kelly's post that November 12th was National Prematurity Awareness Day because I hadn't heard about it until after the fact!
However, again, the entire month of November is National Prematurity Awareness Month

When certain conditions get more attention and research dollars than others, it's hurtful and damaging to those who have the "under researched" issues that are less talked about in public circles.

Now don't get me wrong. I'm not advocating graphic descriptions of laparoscopic surgeries at the dinner table. What I am saying is that if a bladder cancer patient can discuss his/her condition with family and friends... then patients with endo or patients with infertility/miscarriage history and/or adoption proceedings should be able to discuss their situations just as freely... if they wish to do so.

As Kelly alluded to in her blog post, relatively little attention is given to events honoring "infertility, loss, and premature babies" and that there is much more publicity given for other conditions. This simply should not be the case.

Here are my thoughts after talking with many women who have or have had infertility, miscarriages, and had premature babies...

1) Our society as a whole doesn't know how to deal with these issues. People may gave good intentions to be "polite" and to not be "intrusive". They may avoid discussing these topics for fear of upsetting couples dealing with these issues. However, this can lead to isolation of the couple and make the healing process harder for them than it would be if they felt they could talk openly about it. While patients who go through these emotionally draining and exhausting issues all have their own ways of dealing with their situations, most that I have met WANT to talk about it.

PLEASE NOTE: For open and candid discussion about infertility, miscarriages, and starting the adoption process, please see my friend Alicia's information-packed blog Yayastuff.

Alicia's candor about the wide range of emotions she has been through on her journey is a testiment to her strength and determination. Her courage is inspiring her many readers on her blog!

2) Illnesses or conditions that affect or are related to reproductive organs tend to be less openly discussed than others. For example, endometriosis is rarely brought up in casual conversation but if a person were to talk about asthma or diabetes, the conditions would/could just be discussed openly. There are people who are uncomfortable discussing issues that make them feel awkward. It has taken years for me to do a 180 degree turn from being quiet, shy, and downright mousy about my endometriosis (and other) symptoms... to being open, candid and comfortable talking about my illnesses as if they were any other. (It took me a few years to fully comprehend that I have nothing to be embarrassed about or feel awkward about. If others don't feel self-conscious discussing their conditions, why should I feel muzzled about my health issues)???

I'm not sure if my theories answer Kelly's question or not but I have seen in working with many women in endometriosis support groups that there is often a "stigma" or a level of embarrassment that women sometimes feel when discussing "taboo subjects" such as periods, cramps, hormones, etc. This is truly unfortunate.

How can we band together to make headway on these issues if people aren't talking much about it? If the people dealing with these conditions don't feel at liberty to discuss them with anyone but fellow patients, how will anything ever change for the better as far as awareness?
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Please see previous articles I have written about the other (related) awareness days and/or weeks that I heard about in time. Thanks to Kelly, I heard about awareness month in time to post about it for November!

Related articles:

Wednesday, October 15, 2008 Stillbirth Awareness and Research Act

Sunday, October 19, 2008 Endometriosis Blog -- RESOLVE: National Infertility Awareness Week Is October 19-25, 2008 -- Reminder

Tuesday, October 21, 2008 Endometriosis Blog: National Infertility Awareness Week -- A Personal Story


This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

7 comments:

Mckay K said...

Hi Jeanne! Blogs like this one, Kelly's and Alica's are helping breakdown those walls of feeling embarrassed about a particular female condition. I salute all three of you for your efforts.

It will take continued sharing of information and interaction with others who share your conditions to feel comfortable in your own skin.

Thirty two years ago, when I had a hysterectomy, there was so much false information and it was considered taboo for women have one and to talk about it.

Ladies keep putting your stories out there. People are changing!You are now instrumental in that change.

Kelly D said...

I agree with McKay K - we need to keep talking about it so that one day these topics will get as much recognition and research dollars as diseases that touch fewer lives. Thanks for the link back to my blog and for your wonderful post on the topic!

Jeanne said...

Mckay k,

Thank you for always having kind, encouraging, supportive words to say. You are awesome! Blogs like Alicia's and Kelly's make me so happy to see women getting the info they need... just as your chronic illness blog gets SO much info out to men and women about various chronic illnesses!

Not that men can't read this blog too, of course. It's just that many of my readers are women because of the nature of the illnesses I write about.

It is true that breaking through embarrassment is part of the deal. It pains me to see people "embarrassed" to have a condition they cannot help!

If someone has cancer, are they embarrassed of it? No. So why should endometriosis cause embarrassment or why should infertility be a "taboo subject" for so many people? It's sad.

I think progress has been made to get patients to be more open than previous generations but I think there's a long way to go yet.

I have heard so many sad stories of women going through a hyst amidst extreme misinformation (if not outright lies that a hyst would "cure" them). It is terrible that it was even more tabbo then than now.

I remember when I was a kid the woman next door had surgery and all any adult would tell me was that she "had female problems". I now know that she had a hyst. What the heck is up with that?? Why did it have to be labeled "female problems"?? Can you believe that?

If a man has prostate cancer, do people whisper that he has "male problems"?? No. They say, "he has prostate cancer". It just boggles my mind...

Thank you for your warm words as always!

-------------------------------

Kelly d,

Thank you for the comment! We are all on the same page about the importance of keeping the conversation going (as I referenced above). :)

It's sad to me that it was ever even more stigmatized before than it is now!!

It's bad enough now but I do think progress is being made in people's attitudes.

So to everything you said both here and in your blog post, I say "amen to that". :)

It was my pleasure to link back to your blog since it was what inspired me to write my post and what informed me about awareness month. (There are so many awareness days/months that it is very difficult for a chronic illness blogger to remember/know about all of them)!

I really appreciate you taking the time to drop in and leave a comment. :)

Jeanne

Melissa said...

Hi Jeanne,

Since I'm still "young", I remember clearly the health education classes where they would bring in a health resource educator to speak to us women on health related issues in regards to the changes we would be going through with our bodies.

I can remember a few points such as "all women have cramps and have mood swings during their period", and that "while it might seem to you like a lot of blood loss, it's actually NOT that much". There was never any talk of how to recognize when something funky is going on within your body, and other than the brief glance over of STDs, other reproductive illnesses were never mentioned.

If public health educators are still educating young girls (think grade 4 and up) that all of this is "normal", how are women supposed to trust in the signals coming from their body that things are not normal?! Add to that the idea that the average woman will go through 7 specialists prior to receiving an endo diagnosis, it is glaringly apparent that women are not supposed to listen to the messages their body is screaming. And doctors further enforce this idea.

Personally, I have no problems discussing exactly what is going on with my body, however have received backlash for being "too open". Our disease is disgusting, meaning that the symptoms associated with it are disgusting. However, I much prefer it when people give me honest feedback when I ask the question "how are you doing", so I treat them the same. It ends with mixed results depending upon the situation.

If we examine the issue from the side of oppression (I am a social worker afterall!), much of the function of women nowadays is not only to maintain some form of income, for most families of course, but to also keep up with the day-to-day functioning of the home. Women are relied on for their ability to reproduce the workforce. When the roles are not being met, that certain individual often becomes "under-valued". Us women with endo face oppression within the system when we try to access services. We're degraded by a medical system that doesn't understand us. We have potential unemployment and marginalization based upon our symptoms. Yes, we are oppressed based upon our symptoms. And it's difficult to draw siginficant attention when you're in the marginalized group.

In any case, just a few of my thoughts...

Melissa

Jannie said...

I think "women's conditions" in general do not get as much attention and focus as health problems that can be found in both sexes.

So thanks Jenane,and everyone, for doing your part to raise awareness.

I was brought up in a household where the word "pregnant" was not even spoken, "expecting" was the acceptable term. So, you can just imagine what else was never ever talked about. (Learned about periods and where babies come from, from friends.) Sheesh, talk about the dark ages. And exactly, Jeanne, on "female problems."

Let's keep this going and keep breaking that embarassment (and stigma,) barrier!

Jeanne said...

Melissa,

You hit the nail on the head! I remember being told similar things in school. I have a clear memory of them saying that the amount of blood loss looks like more than it is. We were actually reassured that when the blood goes into the toilet and gets diluted with the toilet water, it gives the illusion of there being more blood than there really is. Okay...

I too was taught about STDs (in health class in high school). We certainly never heard the word endometriosis in that class! As you said, we never were given any education regarding other reproductive illnesses. The notion of listening to one's body and paying attention to signs of trouble simply wasn't covered at all.

I really wouldn't be at all surprised if children are still being given similar speeches to what we heard growing up. This is concerning given that there are an estimated 5.5 million women in North America who have endometriosis!

I believe pediatricians should be alert for endo symptoms too. After all, most women I know who have endo had their symptoms start early on (many with their first period on...) I don’t think pediatricians concern themselves with endo at all. I believe they should!!

I had never even heard the word endometriosis until I was diagnosed at 23. I actually tried to implement a program in schools a few years back but the red tape proved too much for me to tackle. Since my degree is in education (I never went into teaching by choice) and since I have 26 years of firsthand experience as an endo patient, I thought it would be cool to get a program going in the schools. I spent a fair amount of time trying to get all of the ducks in a row. It just wasn’t in the cards but I tried my best to make it happen.

You are absolutely correct that it's nearly impossible for women to trust their instincts and listen to their bodies when they are being taught that some of the very symptoms of endometriosis are "normal" and "to be expected".

The frustration, anger, and sadness women feel at having to go from doctor to doctor in order to get a diagnosis in the first place is absolutely ludicrous!! It is appalling what almost every single endo patient I have met has gone through!

* For some, it's going to numerous doctors before even getting a diagnosis.
* For others, it's getting diagnosed by the first doctor or second doctor but quickly realizing that the laparoscopy that person did when they said they "cleaned all of the endometriosis out" was performed by surgeon who was not very experienced at treating/removing endo!!
* Other patients have suspected endo, go through a laparoscopy, and are told they DO have endo... These women wake up to find they had a ‘diagnostic laparoscopy’. In other words, the doctor opened them up, saw the endo, closed them up, and told them "you have endo".

If a doctor suspects endo going in and isn't qualified to remove it or isn't comfortable doing it for whatever reason, why in heaven's name would said doctor not simply refer the patient to a doctor more experienced in diagnosing/treating endo????

Why put a woman through surgeries instead of one??? Why have her assume the risks of surgery (anesthesia administration, adhesions, chance of infection, etc.) twice instead of once? Even if it's an ego thing preventing Doctor #1 from referring the patient to Doctor #2, WHY would Doc #1 do a surgery KNOWING that he/she will likely find the endo that he/she has told the patient is suspected) only to THEN refer the patient to another doctor after doing a lap to have a 2nd surgery to remove endo??? It boggles my mind. Have you ever heard of a man having 2 surgeries instead of one because the first surgery involved opening the man up, looking around, and stitching him back up… only to tell him that he’d need another surgery to address what they found? I can’t imagine. Yet it happens to endo patients all the time. I have met quite a few women who have had diagnostic laps. It just blows my mind.

If Doctor #1 suspects endo and isn't skilled or trained at removing endometrial implants, why not refer the patient to a specialist as soon as endo is suspected??? It makes absolutely no sense to put a woman through 2 surgeries instead of one! (Granted I wouldn’t want a doctor who is afraid or ill-equipped to remove endo to work on me because someone who doesn't know what they are doing could well do more harm than good). So I suppose a diagnostic lap is better than that exact same unskilled surgeon attempting to remove endo without having the proper training/experience to do so properly. I still maintain that Doctor #1 should refer the patient to Doctor #2 the minute he/she suspects endo)! Sadly, you are correct that many doctors do reinforce the notion that some of the classic symptoms of endo are "normal".

Like you, Melissa, I am very open about my symptoms. Anyone who reads through blog will discover that pretty quickly! I grew up in a house where "female problems" were simply not discussed. I have done a complete 180 degree turn from “silence” to some degree of "can't shut up about endo". With the 1st lap… after 10 years of suffering in silence with no explanation, I finally had a name for what was happening to me! The only slight problem was that my Doc #1 wasn’t skilled at removing it or at treating after surgery. However, I was actually relieved when I was diagnosed because I finally had some validation… some proof that I was not crazy or exaggerating or "too sensitive" but that I had a real illness with real symptoms that I was not imagining! The problem was I needed a doctor who had a clue…

As far as the issue of oppression, you are soooooo right that there is a whole dynamic going on with that.

I saw something on the Internet a few years back (don’t remember site) that blew my mind. I don’t normally discuss religion in my blog but I’m going to touch on it here (just in passing) to make a point (vague/no particular religion). This document I came across on the Internet went back hundreds of years and it talked about how (in many different religions), women weren’t allowed up at the altar (or even allowed to go to church) during their periods or something like that. It had to do with this whole “blood isn’t clean” mentality combined with, frankly, men who wanted power positions that purposely excluded women... and women being “unclean” was their justification for excluding women from doing certain things. I guess, from what this paper said, that it was the start of how many religions even to this day have male clergy but not female. (I’m no theologian so I don’t know how accurate this paper was but the theory sounded interesting the way it was described anyway). It was basically explaining how it became commonplace in many religions for only men to be allowed to perform certain activities in the church (i.e give sermons). It was really interesting.

Anyway, the paper explained it a whole lot better than I am but it gave detailed explanations of why women’s menstrual bleeding was viewed as “disgusting”, “unclean”, etc. and how that attitude basically segregated men from women some of the time and placed “rules” on women other times.

I wish I had the link because it was actually quite interesting. I had forgotten all about it until I read your comment and it popped into my head when you used the word “disgusting”.

Anyway, women nowadays are quite often expected to fill that “Superwoman” role. You are absolutely right about the whole “becoming under-valued” aspect.

Women and men are not treated equally in the health care arena. Most prescriptions have been tested in research studies on men and not on women.

Women’s pain is undertreated as opposed to men’s. See this interesting link about that: http://www.forgrace.org/women/in/pain_home/

Men are taken more seriously when presenting with the same exact symptoms. Studies have shown that women’s heart attack symptoms are not treated as aggressively as men’s, for example.

There’s a definite oppression factor and certainly many women are misunderstood by their doctors, not believed, labeled with terms like “neurotic”, etc.

Having worked about 80 hours a week in my mid 20s (yes, I was very stupid to do that!), I now am too sick to work outside the home.

When I tried to go back to work (when my husband was part of a massive, sudden layoff and he was looking for work all day every day… which meant no income!)... I wound up in the hospital from trying to go back to work... and that was only working part time!!

It took a long time for me to accept that I can’t work the kind of office job I used to work (due to various illnesses I won’t get into here). In fact, I still haven’t really “accepted it” and I probably never will completely.

When I tried a totally different kind of job which required standing on my feet for long periods of time, I believe it contributed to the nerve damage (in my feet especially) that my neurologist believes is permanent.

It is incredibly frustrating to watch my husband working 7 days a week for almost 4 months straight now and not be able to contribute some money to put towards my mountain of medical bills!

So far, my blog is intended strictly to help people. I won’t lie, though. Someday I hope my blog ads for Amazon and such will bring in some referral money. It sure would be nice to contribute some sort of paycheck.

Someday I also hope to write a book. In the meantime, I have blogger friends who have been blogging longer than me who have told me that it isn’t unusual for it to take 1-2 years of blogging to start to make any money to speak of.

The thing about blogging is I can do it at home on my schedule. If my fibro is flaring, I can get up and stretch whenever I need to. If my IC or IBS are acting up, I’m one room away from the bathroom. The same applies for needing quick access to the bathroom during my period. With my MCSS (multiple chemical sensitivity syndrome), I don’t have to worry that someone in the next cubicle is wearing perfume or cologne that affects my ability to breathe properly, makes me feel nauseous and dizzy, makes me feel faint, gives me a headache… I don’t have to hold my breath on my way into office buildings as I walk by smokers huddled by the doorways, etc.

Blogging is an outlet, it’s cathartic, it helps people, and it distracts me from my excruciating pain. I have tried going back to work at a variety of jobs. Not only did I get much sicker from doing so and wind up in the hospital... but any money I made was immediately eaten up by the extra co pays I had to make to extra doctor’s appointments from pushing myself too hard and making myself sick!!!

Don’t get me wrong. Blogging is a job! It’s hard work and it’s exhausting at times. I take it very seriously and really do hope to make it into a career someday (vs. now where it’s essentially volunteer work, in a sense)… The thing is that it’s something productive that I *CAN* do.

While I started a local endo support group in 2001 and we met monthly (until just recently… our meetings aren’t quite so regular now...) and while I did plenty of productive stuff as group leader for that, blogging connects me with far more people and gives me the opportunity to make an even bigger impact (in some ways) than I did at the local level. (I’m still a big advocate for in-person support and I don’t mean to suggest that blogging is better than in-person support. It’s like comparing apples and oranges).

Anyway, I try to look at it like this: I’m doing what I am supposed to be doing right now, I’m sharing what I know and helping others, I’m learning and growing… Someday it would be great if blogging and/or writing a book bring in some income. For now, my main goal is to help people.

Melissa, you are completely correct that we really are oppressed based on our symptoms! You are also correct that being in a marginalized group makes things challenging!

Again, check out the For Grace site:

http://www.forgrace.org/women/in/pain_home/.

It’s interesting… Thanks for the thought-provoking comments!!!

Jeanne

Jeanne said...

Jannie,

I agree that women's health issues often take a backseat to other conditions. Many research studies back this notion up.

Thank you for everything you do! That one post you did on endometriosis (and the petition) got such a great response! It was really nice to see so many people rallying that way. :)

If I recall correctly, I think the phrase in my house was "so and so is having a baby". I'm pretty sure neither pregnant nor expecting were used.

Yeah, "female problems" was the famous phrase in our house. As I got older, I realized that this phrase was usually (but not always) code for "hysterectomy".

It always struck me as odd... the term "female problems". I have never heard the term "male problems" used even once but I've heard the term "female problems" from several sources. I'm not sure what's up with that?

I agree that we can't fix a problem that we're afraid to talk about!

The longer we suffer in silence, the longer it will take to find better treatments - or even a cure - for endometriosis and other chronic illnesses.

The stigma extends beyond endometriosis. Since the vast majority (though not all) of fibromyalgia patients and interstitial cystitis patients are female and since these illnesses often co-exist, it means many patients are getting a double whammy, a triple whammy, or even more.

It's bad enough to have one poorly understood, stigmatized illness that affects mostly females or all females (thus generally getting less research dollars, as a general rule). To have several is exponentially tougher.

Yes, it's important for people to speak up, advocate for patients' rights, and push for research to find cures.

There should be ZERO stigma.

Unfortunately, you are absolutely correct that there is stigma and embarrassment... There should not be either.

We have to break down the barriers to finding cures. Not even being able to talk about a problem makes it impossible or near impossible to solve. So silence itself becomes a barrier.

So speaking up is really important. Without awareness and education... the cures will be that much further off for these physically and emotionally painful conditions!

Jeanne

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