Here we are the first week in March and the beginning of endometriosis awareness month.
I am happy to see social media light up in yellow, as endo sisters from across the globe do their part to spread awareness of this silent condition.
I admit, I’ve already shed some tears. The message is clear. Endometriosis is causing a lot of pain across the world: physically and emotionally.
The worst part about this pain is that it’s silent.
For many this is learned behavior. We are conditioned to believe that pain with your period is normal. That pain is a normal part of being a woman.
Invalidation of Pain
In line with this month of endo awareness, I’ve been reading Dr. Andrew Cook‘s book Stop Endometriosis and Pelvic Pain.
A passage within it triggered something in me.
In some families there’s a tendency not to discuss ‘private parts’ and ‘women’s problems’, and often, girls who feel embarrassed about their newly changing bodies haven’t learned how to stand up for themselves and say that something really hurts.
The girls may also be ignored because there’s a natural tendency to think girls that age can be overdramatic or are just avoiding school. In what may be the first episode in a decades-long pattern of frustration, the girl’s symptoms are invalidated.
When the girl hears the message that the pain isn’t serious or real, what she really is learning is to distrust her senses, her body—and herself. Worse, it may affect her self-esteem, as she comes to believe that others don’t think her devastating pain is worth their trouble.
– Dr. Andrew Cook
Invalidated. That’s the word that really struck a nerve in me.
Earlier this week on Peace with Endo’s social media channels I posed the question: How long did it take you to get diagnosed with endometriosis?
As the comments poured in, my heart broke. Many of the responses were years with double digits and some were as high as four decades.
Many of the women expressed how no one believed them. They thought that they were “crazy”.
Impacts of Invalidation
As I looked back over that passage in Dr. Cook’s book, I recognize that the invalidation piece is a super painful trigger for me.
And the self-esteem impacts are for real. I’ve struggled with confidence for most of my life. I didn’t want to stand out. I wanted to blend in.
I’ve always had issues speaking up about things. Most of the time I let things go.
So, when I do choose to say something it takes quite a bit of courage. This goes along with my struggle to ask for help. Perhaps subconsciously I don’t think that it’s “worth their trouble.”
Instead, I push through and try and do it all, until my body (and mind) breaks down.
Then there are times when I do speak up and I’m shot down. I speak up about what I need and it’s not validated. It’s pushed aside. Or I ask for help and it’s not granted.
And I get really upset.
This all came to light after a situation last week had me boiling to a point where I was shaking. I was pissed.
And I was burnt out. My body could take no more.
This conditioning played out in my head. My voice didn’t matter.
Invalidated.
And I think from early on in my life, I subconsciously developed this notion that I didn’t deserve to feel good.
This played out in the negative relationships in my life and the way that I treated my body so poorly for so many years.
On the Positive Side?
So what do we do about it? We spread awareness.
We validate the fact that pain with your periods is NOT normal. We spread the word about what endometriosis is and how it impacts your life. In hopes, that maybe we’ll save the anguish of another young girl being pushed aside and labeled as “overdramatic”.
We come together as endo sisters and provide support when it’s lacking in other areas. We come together to lean on and pass ideas off on what’s worked and hasn’t worked.
We come together to heal.
I urge you to speak up and share your story. Have you shared with your family and friends that you have endometriosis and what that entails? Have you come out on social media?
When you speak up, you help other ladies speak up too. Those silenced by dis-belief. By speaking up you could help pull a silenced one out of the shadow.
Validated.
That’s a big thing.
Do you relate to these feelings of invalidation? I’d love to hear from you in the comment section below.
Do feel we need more about this illness. I was still in school when I was diagnosed. Fortunately even though I was so young my doctor believed me. A lot of others didn’t, I was told to live with it. Periods were part and parcel of life. I always learned to take symptoms seriously. If your period means you’re in agony and can’t even live a normal life, getting sick and generally miserable. Seek advice and don’t be embarrassed to ask other women what they experience! Often you’ll find doctors dismiss symptoms as normal “we can’t cope with normal lady functions” when you can say you’ve compared to others, or even ask if they themselves feel so bad it’s when you’re started to be taken serious
I always wondered why if it was “normal” none of my friends were collapsing on the floor in complete agony. In the book Dr. Cook elaborates on the doctor’s dismissal in the acknowledgement that chronic pelvic pain is complex and most just don’t want to take the time, or have the time to take to really make a difference, so women are brushed off and medicated.
My voice wasn’t heard from my family dr and after years of being misdiagnosed, I finally seen a specialist when I was 31! And was finally diagnosed with Endo. Trying to have a baby was getting almost impossible until the diagnosis and surgery. There needs to be a lot awareness on this condition
Indeed. Thank you for sharing a bit of your story Leah. It’s up to us to spread the word.
I have fought for over 20 years for someone to believe me and help me with this. Doctors and even consultant gynaecologists have laughed in my face when I tell them about my pain and told me I’ll grow out of the pain, it will settle as I get older, I should lose weight and the pain will stop or everything will be fine if I would just have a baby. I finally, *finally* have a consultant who knows exactly the suffering endometriosis causes and is willing to fix it. I would not wish this pain on my worst enemy. I feel as though it has robbed me of my life since I was 11 years old.
Ugh. Sorry to hear this Spev, but good to hear that someone finally recognized your symptoms. Sending LOVE.
What a well written peace, I am newly diagnosed but don’t tell many people as there is so little understanding and people just say “oh bad period pain then” if only!!!!!
Reading posts like this really makes more difference to people like me now trying to understand and find a way through this journey, thank you
Zoe
Thanks Zoe. The more you talk about it, the easier it gets. Sending LOVE.
Aubree.
Its very hood you are spreading awareness but there is still no long term treatment or cure. I checked the government website for petitions of research into Endometriosis the last one was in 2012 with just under 700 names on it. There needs to be another petition put forward to the government for funding of research and treatment. I would do this myself but I struggle with anxiety. Could you help us ladies who are suffering make something actually happen so our pain can be soothed and questions can be answered. With femail power and social media on our side we can do this. We can change lives. Thank you.
Hi Georgie – I’ve had a lot of success with dietary and lifestyle changes. There is hope to feel better, but it takes some commitment to make changes. All of this has helped me with stress and anxiety. What we eat plays a huge role in how we feel. Have you looked into that?
Sending LOVE,
Aubree.
I was diagnosed with endo at 21 with my 1st surgery at 22. It’s been a long painful road. After 5 surgeries where endo destroyed most of my reproductive organs and finding out id never be anle to conceive, carry, or birth a child of my own. I finally had no other choice but to have a full hysterectomy at age 27. Followed by a 3 month hospital stay due to many complications because of the endo. Now exactly 2 years later I’m still dealing with pain and depression. NO WOMAN SHOULD EVER HAVE TO GO THROUGH THE HELL THAT IS ENDOMETRIOSIS. No one should be told at 25 they can never have a baby because of it. No one should ever be invalidated and told they are exaggerating the amount of pain they are in. Awareness needs to be brought to this awful disease and cure needs to be found.
Sending LOVE Denise.
It makes me sad to hear how long it took so many to be diagnosed. So grateful that my daughter was diagnosed at 14 and had laparoscopy at 15. I listened to her and watched her struggle. As her mom, I knew something was wrong and I took her to multiple doctors until we found an answer. We were also lucky to have an amazing adolescent specialist in excision surgery and endometriosis treatment. You know your body, fight until you get answers.
Sounds like you’re a good Mom Sarah. Sending Love.