Its hard to believe that March is half over and Endometriosis Awareness Month will soon be winding down. It has done my heart good to see my Facebook feed turn yellow and see a steady stream of endometriosis awareness posts, educational articles, and resources shared so frequently. It almost me sad to think that is going to change.
I would love to see endo awareness become more of a year round thing. I obviously know that for many of us it is. I mostly definitely want Blogging For Endometriosis Awareness to become a year round campaign. I would love to have monthly linkups. Thoughts?
The theme for this week’s post is, “If I could change one thing about the stigma of endometriosis, it would be . . .”
I would love to change the stigma that endometriosis is a “female problem.” Granted it is a disease where the lining of the uterus grows elsewhere in the abdominal cavity and elsewhere in the body so it is obviously an issue that most predominantly affects women but somehow the stigma that its a “female problem” or a “female issue” makes it more taboo to discuss.
No one wants to talk about periods, bleeding, bloating, painful sex, and things sticking where things aren’t supposed to be stuck.
Endometriosis is not bad cramps, PMS, or crappy coping skills.
Endometriosis is a serious disease that can cause chronic and crippling pain. It often takes YEARS to receive a proper diagnosis (source).
Endometriosis is a major source of female infertility. A staggering 30-50% of infertile women have endometriosis (source).
Endometriosis often results in premature hysterectomies which often do not provide long term relief. Hysterectomies are the second leading surgery for premenopausal women (following c-sections) and a large portion of these procedures happen as a result of endometriosis (source).
In a survey conducted on the long term effects of endometriosis, 51% of the women surveyed stated that endo has affected their work and 50% stated that it has had a profound impact on their relationships (source).
These examples are just a small sampling of how greatly a woman’s life is impacted by endometriosis. I honestly believe that if endometriosis affected men in the same ways as it affects women, there would be far greater advancements in research and treatment options but because it is still considered just a “female problem” by so many, resources are limited.
I would love to see this stigma changed. It is by our efforts to raise awareness, support, and, most importantly, education about the disease that we can have a hand in changing it.
I am excited to announce that this week’s linkup post also includes a giveaway! One of our business sponsors, Seaview Jewellery, has graciously donated a beautiful necklace and charms to give away to you awesome folks! The charms can be put on a keychain or zipper pull as well as a variety of other places. This week there will be 3 winners (one will win the necklace and two others will win charms). Look at these beautiful creations:
To enter the giveaway, leave a comment telling me what stigma about endometriosis (or chronic illness in general) that you would like to see changed (mandatory)!
For an extra entry, tweet this post and then leave a comment letting me know that you did with a link to your tweet!
This giveaway will run through Friday, March 27th! You can also visit Diane’s blog for additional giveaways courtesy of Seaview Jewellery! Next week’s linkup will also feature endometriosis awareness jewelry giveaways courtesy of Seaview and our other business sponsor FJJ Creations!
P.S. Don’t forget to link up your post this week!
education about what endomitrosis is, there are so many myths and misconceptions about it, even among doctors and other heath care people its so hard to find someone who can even diagnose let alone treat you for it. I feel like I should carry a card around to pass out so people can understand why I can’t always stand up straight, or I have to pee so much, or even after my hysterectomy I still am in pain. Instead I try to patiently explain that years of suffering I finally found a doctor to tell me what was wrong, and start treating the disease. after multiple hormone treatments, my doctors suggested the hysterectomy, by this time my bladder was so covered with growths that it will never work right, there was growths out side of my abdominal cavity that meant they had to remove muscle as well as tissue that I can never rebuild, and is growing back every month because my brain still releases the hormones that make that tissue grow. Honest, it is something I deal with everyday all day long.
I have continued to have recurring endo after a total hysterectomy too and it is awful! I had one laparotomy following my hyst to remove endo. It was back throughout my pelvic cavity and they ended up having to cut out my peritoneum which led to adhesions which led to a total bowel obstruction and emergency surgery. We are certain that adhesions are back (and likely endo) and has begun to affect my bowel function but because of my obstruction history, I am considered too high risk to go in preemptively so I feel like a ticking time bomb for another obstruction to happen. Never mind the extreme amount of pain I am in. I totally understand what you are dealing with and so many people, even doctors, don’t get it.
OMG, I am so with you! I’ve even had medical professionals label my symptoms or the condition as a whole as a “female problem,” as if a disease is only worth treating if it affects both sexes. I’ve enjoyed your posts so much, even though I haven’t been contributing this year (new baby, no sleep, you know:).
I totally understand! Been there and its no fun! Hopefully more sleep will be on the way soon!
We are starting to turn a corner, thank goodness, but of course every night is different. He’s perfect and we’re over the moon in love with him, but we’re also a little mushy-brained 😉
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The stigma is a good one. I’d like to change the stigm that it’s an excuse to be lazy, that it can’t be as bad as we say. Yes it can.
You are so right! I’ve been told that maybe I just have a low pain tolerance and I wanted to slap the person. When you’ve dealt with chronic pain for over ten years, your pain scale completely changes. When I was in the ER for my total bowel obstruction, the pain was absolutely the worst pain I had ever felt in my life and the nurse said that I was holding it together pretty good to be in such pain (I was pacing my room because the pain was too great to sit still and at that point, 4-5 nurses had attempted to secure an IV and had yet to be successful). I asked her if it would speed things along or help the situation if I curled up in the fetal position in the floor and started screaming. She responded, “I guess you’re right.” Darn skippy I’m right.
the sense that sick people always “look sick”…i look around my mid-30s age, i look thin and fit, i can hide the pain when i need to….but i’m wracked by pain all day every day and getting up in the morning means making an affirmative decision to fight.
i hate to say it and can’t phrase it well, but also the belief that it can’t be tha bad if it’s not going to kill me. first, suicide is a major danger for chronic pain patients. Second, i may not be dying, but I’m also not really living
That is so so so true. Ugh. I feel your pain! Literally. 😉
I have not had endo since my hysterectomy, but so have several chronic illnesses which are debilitating to my quality of life and relationships.
The stigma that I would change is that I can just rise up by my own will and be who people want me to be, on their schedules, with their energy and strength. I pushed through for over 30 years, but it took everything out of me and now I cannot even hold a job for wages or keep up with friends and family. Talking on the phone can wipe me out for days or even weeks. The stigma that if I just wear myself out I can sleep and wake up refreshed is so frustrating. I’ve even been told by doctors that of course I have pain, I am a woman so just deal with it and stop mentioning it.
That is terrible! I know where you are coming from! Some days the simplest tasks can wipe me completely out even just taking a shower or blow drying my hair can be exhausting and so many people cannot understand that. Thank God for the Spoon Theory as it has really helped explain my situation with family and friends!
That is terrible! I know where you are coming from! Some days the simplest tasks can wipe me completely out even just taking a shower or blow drying my hair can be exhausting and so many people cannot understand that. Thank God for the Spoon Theory as it has really helped explain my situation with family and friends!
I left a comment, but forgot to include my twitter link to your blog, and I also linked to Diane’s.
Yours here: https://twitter.com/intent/tweet?text=Changing+The+Stigma+Of+Endometriosis&url=http%3A%2F%2Fwww.anewkindofnormal.com%2Fchronic-illness%2Fchanging-the-stigma-of-endometriosis
If I could change one thing about Invisible Chronic Illness, it would be the way that doctors treat us as patients. (Just a quick background on me: I gave Crohn’s Disease, Chronic kidney stones, bulging discs/arthritis in my back that causes severe back pain & sciatica, and chronic migraines.)
Most of us have to see many specialists because our main illness is never just “one” single issue. It affects many areas of our body – physically, mentally, and emotionally. And SO many doctors have no compassion or empathy, or if we have a real symptom that they haven’t read about in med school, they either ignore it or act like we’re making it up. I truly wish that every doctor had to experience some kind of chronic illness in order to truly understand us as patients! We need doctors who aren’t afraid to advocate for us and help us through the process which is never instantly or automatically fixed!
Amen sister! My gynecologist, rheumatologist, and gastroenterologist work great together but my other doctors, especially my pain specialist which seems flat out wrong, can be total d-bags. I’ve been told that all of the doctors in the area think he is a jerk too so I guess I’m glad its not just me. Up until my last visit, he had “mild obesity” on my chart as a source of my chronic pain. Even at my heaviest years ago, I have never been in the obese range. Jerk.
Amen sister! My gynecologist, rheumatologist, and gastroenterologist work great together but my other doctors, especially my pain specialist which seems flat out wrong, can be total d-bags. I’ve been told that all of the doctors in the area think he is a jerk too so I guess I’m glad its not just me. Up until my last visit, he had “mild obesity” on my chart as a source of my chronic pain. Even at my heaviest years ago, I have never been in the obese range. Jerk.