Beyond Chronic Chaos

I wish someone had told me about endometriosis

9 things I wish someone had told me about endometriosis

I am super open and honest about having endometriosis.  I don’t shy away from talking about periods, vaginas, my uterus or the pain that goes along with it all.  Many people rely on my experiences of climbing this mountain and uphill battle so I find myself telling people the same things of what I wish I would have known before my diagnosis.  So I thought I would share with you somethings I wish someone had told me about endometriosis in hopes that this will help someone you love!

Painful Periods are not normal!

You should not be crippled by pain monthly.  Your periods should not be so heavy you bleed through everything in an hour.   You should be able to function like everyone else the week before and during your period! 

Just because they can’t see it doesn’t mean it isn’t there

So often when people can’t see it, they don’t believe it.  There never is any proof of growth of the disease until the surgeon gets inside you.  I tend to tell people that the more tests that don’t show anything, the more it leans more towards endometriosis (when you are dealing with certain symptoms).  This makes it hard for family and friends to understand it.  Even doctors have a hard time understanding endometriosis and they tend to brush you off as being overdramatic when tests continue to show up negative.

You are not crazy!

This disease will make you feel crazy.  I remember the night before my diagnostic surgery crying to my husband wondering if I really was making it up.  So many times I was told it can’t be that bad, there is nothing there and I must be exaggerating.  It makes you question reality!  But know that your pain is real and they will get to the bottom of it some day. 

Endometriosis is WAY more common than people let on.

This disease affects 1 in 10 of those born with a uterus!  That is crazy!!!  That is a lot of messed up uterus’ and vaginas!!!  This disease doesn’t get the spotlight like cancers do.  My belief is that it doesn’t kill people like cancers and so it doesn’t get as much attention.  Look around to those you know and line up 10 assigned female at birth and one of them statistically has endometriosis!  That’s a lot!

Lupron is hell

No matter what pain you are in, how desperate you are or how you are reaching for any answer, Lupron is not the answer!  Lupron is a drug that is used to treat men with prostate cancer.  For women it will put you into a medication induced menopause.  It seriously was the worst decision I ever made.  I was so desperate for relief that I just got these shots done so I could have relief, that never came.  I lost my hair, became an emotional wreck, hot flashes, lost bone density and so many more.  I will never ever support that drug or the pill form Orlissa that came out recently.  I know suffer from bone density issues, nerve issues and hair thinning and I will continue to struggle with these probably for the rest of my life from taking Lupron.

Hormonal intervention isn’t always the best

If a doctor doesn’t understand endometriosis their first line of response to “bad periods.”  It doesn’t work for everyone all of the time.  Research is finding now that endometriosis has estrogen and progestrone receptors.  By putting someone on birth control can make the disease worse.  And then when the pills don’t work the doctors think that it is your fault because “it should work.”

Excision vs Ablation

I will always suggest doing surgery with an endometriosis specialist.  There really are a limited number of them.  Specialists will perform excision surgery.  The easiest way that I can describe the difference between is if you think of a weed, and you mow over the top, you don’t see that it’s there anymore but the roots are there and that weed will grow again.  So you never really got rid of the weed.  Ablation actually burns the endometriosis off the tissue, it does not get rid of the “root” of the endometriosis. Go back to the weed idea.  When a specialist performs excision they actually cut out the root of the weed.  This is more efficient and a better way to handle your endometriosis.  Always find a specialist to perform excision, that is your greatest chance of relief.

Hysterectomy does not cure the disease

There is no freaking cure for endometriosis.  Let me say it again for those in the back, there is NO CURE for endometriosis.  Getting pregnant, taking out the uterus, having excision surgery will not cure this stupid disease.  The actual cause of the disease hasn’t been found yet so there is no cure yet either!!!!  Doctors even question this when I tell them I have had a hysterectomy.  Or my other favorite is well if you take out your remaining ovary you won’t have endometriosis anymore.  OMG, can I strangle you?!!!!  This one is my biggest pet peeve, can you tell?!!!!!

Pelvic pain is one of the hardest things to diagnose

So often endometriosis affects other parts of your body.  Many times while waiting to get an endometriosis diagnosis you will be sent all around to different specialists for other tests.  Some things that you may experience are nerve pain, gallbladder issues, bowel issues either constipation or diarrhea, leg or hip pain, rib pain, back pain or many others.  Once again none of these are made up, I even had problems taking a deep breath that they blamed on anxiety and it was endometriosis on my diaphragm.   

I hope something here helps you feel a little bit more comfort and gives you a clearer path in your journey.  As always, reach out for support or with questions.  

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