DOYOUENDO Chronic daily pain in the entire abdomen area & lower back. Many don't realise it can invade internal organs like the bowel. It can also literally stangle organs like the kidneys. I've had folks say ~at least it's not cancer. True but not helpful 🌼
It also took doctors 10 years to diagnose me because my entire life I was told it’s all in my head. I got my period at 8 and my symptoms started at 9 and was told I was too you t to have anything other than a bad period so I was misdiagnosed with a bad period at 12.
No one wants us to get better more than WE do! So don’t say push yourself, it’s all in your head, or be positive. Because comments like that only makes us want to positively punch you in the face.
It’s not all in our head, and positivity doesn’t change anything and neither does exercise. Exercise makes the pain worsen, in fact anything strenuous makes us flare up. When we are in bed, we aren’t being lazy we are just taking the break we need to recharge.
We aren’t addicts seeking for pain meds, we just want relief from the pain & want a cure. We also want those around us to be more understanding & less judgmental. Our relationships don’t last because our significant others either see us as a burden, negative, or don’t believe us.
Endometriosis gave me IC. I lost two jobs thanks to the pain of living with a chronic condition. -If your mom has it, you're more likely to have it too. -Cannot diagnose Endo via ultrasound (unless it's webbed out onto your organs) -Endo can get into your lung, bladder, bowel...
I wish more people were aware of how undereducated some gynos are about Endo. I've had at least 5 gynos tell me straight lies... it took 14 years to receive my official diagnosis. 1 thing women should know? Seek a specialist immediately. Don't waste your time at the gyno.
The mistaken belief that endo symotoms are just painful periods. The reality is that years of misdiagnosis & poor treatment lead to Deeply Infiltrating Endometriosis, which causes organs to stick together & be pulled out of place. Many of us, myself included, then lose organs.
The psychological damage of being told for years that there’s nothing wrong with you, and that the pain is psychosomatic, can be as damaging to your mental health as endometriosis is to your physical health 12YearsToGetDiagnosed
Prevailing treatment models (ablation surgery, birth control, Lupron/orilissa) don’t treat or cure the disease, and can actually make it worse. Pregnancy doesn’t cure it. Nor does menopause or hysterectomy. 2/2
It’s more than just “painful periods.” It’s constant pain, cysts, infertility, fatigue & many other symptoms. There’s no cure, although the most effective treatment (expert excision) is rarely covered by insurance & hard to find a qualified surgeon. 1/2
4everPelvicPain Lupron is not an effective treatment for endometriosis I wish more than anything, that I could go back in time and say 'no' to that injection. It has been seven years and the grief is still intense. 💔 Lupron has ruined my health and my life. And I still have endo.
And don’t forget things like the Lupron Depot shot. Which is pretty horrendous as I’m currently on it.
So, so much! I actually wrote an editorial about it.
But, my 1 irritation when it comes to endometriosis & misinformation is that endometriosis is misplaced endometrium... they are very similar BUT NOT THE SAME. This misrepresentation is why we have not progessed in the treatment or understanding of endometriosis.
There is no cure. No. Cure. chronicillness -This tidbit confuses a lot of people. I hear, 'but I thought you had a hysterectomy?' Or 'Didn't you already have surgery for that?' A hysterectomy can treat adenomyosis, but does nothing for endo & excision can help. Still no cure.
In the past has done endo posts without giving people answers. So because of that, I wish people knew there are doctors who specifically deal with endo and that endo cannot be cured or relieved by anything other than expert excision surgery (not ablation laproscopy).
“There's a lot of confusion out there...What do you wish more people knew..?” That it’s not simply “uterine lining” as article says. Endometrium & endometriosis have countless biomolecular differences & behave differently. “Endometrial-like”, not same. The distinction matters.
The endo belly and pain which goes along with it. And hearing... ‘it’s just something you ate’ 🙈
How vastly the pain can range. I’m good one minute and three hours later my stomach is bloated and I can only stand the heating pad. I’ve had 3 surgeries now and the relief is only temporary. I wouldn’t wish it on anyone.
“Why don’t you just have it all whipped out?” Is the most popular comment people make when they see me drugged up but still in pain each month. Many people don’t understand a hysterectomy isn’t a cure.
Along with I think most males, I was actually unaware of this until Emma Wiggle started talking about it. We are ignorant perhaps, but we really, most of us, want to be better
Cali_Girl090 I want to blast email this to everyone I know
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