Beyond Chronic Chaos

advice about endometriosis

My advice about Endometriosis

As I sit here writing this post, I can’t help but wonder what advice about endometriosis would have made a difference had I known earlier in this fight.  This fight is against doctors, family and friends, yourself and this disease that not much is known about!

Now that I have been living with this diagnosis for five years, it is crazy how much I know about the disease versus the doctors.  I still deal with the stigma of the disease and the idiotic theories that some doctors believe.

Here are nine things that I wish I would have known when I was 15 years old and starting this process and even seven years ago when I was in such severe pain it was decreasing my quality of life.

  1. You are not crazy!  No matter who doesn’t believe you or who says it is normal, this is not normal.  It is not normal to blackout from your period, to bleed through everything, to be curled up in a ball due to the pain of your period.  And you actually feel this horrible pain and really live this in your life.  People will doubt you and make you question your reality but you are not crazy!
  2. Not every treatment that works for your best friend with endometriosis is going to work for you or the next person that comes behind you.  It was discovered recently that endometriosis isn’t only made of estrogen and actually contains progesterone too.  This is huge why treatment doesn’t work for everyone.  One of the “best” lines I hear often on endo boards is that if this treatment didn’t work then you must not have endometriosis.  That is a load of bull shit!!!  There is no fix all with endometriosis or else we would all be on it!
  3. Do your research on your doctor who does your surgery.  I highly highly recommend not allowing a “normal” gynecologist to do your surgery.  Find a specialist that understands endometriosis and is skilled in the excision of the disease!  This will drastically reduce your symptoms.
  4. Don’t let this disease play tricks on your mind!!!  It will make you feel guilty and worthless.  It will probably make you contemplate why you are living at all.  Don’t let it have that control!
  5. Have someone come with you to your appointments.  It helps for moral support but also for having another set of ears to hear what is being said and another point of view for the doctor.  
  6. Keep fighting!  I can’t even begin to tell you how many doctors I saw before my diagnosis.  And it took just one to finally believe me and understand what was truly going on!  You may have to see half of the gynecologists in town but do it.  Keep fighting until your voice is heard.  Painful periods are not normal.
  7. It is ok to cancel plans.  Some friends won’t understand why you are canceling plans or will try and make you feel guilty, they aren’t true friends.  You need people that are in this for the long haul.  People need to be willing to have snuggle time on the couch or crawl in bed with you while you are in pain. 

Side note!!!! I’m not sure if every person with endometriosis will agree but my heating pad is a game changer.  It will not make the pain stop but it will calm it down enough to relax most times.  WARNING!!!!  Don’t use it constantly or too hot, I just learned that you can actually damage the skin cells and cause a specific type of cancer from this!  (Don’t ask me how, I was just reading about it!)

  1. Don’t let talking about your period, uterus or vagina be taboo.  So often in today’s culture, these topics are off the table as part of conversations.  We need to make it ok to have a conversation about bleeding monthly.  I truly believe if this wasn’t so awkward to talk about we would be further along on the road to a cure.
  2. Lastly, painful periods are not normal!  Let me say that again, painful periods are not normal.  For those of you in the back row, painful periods are not normal.  If ibuprofen doesn’t take the pain away then that is not normal!!!!  Don’t let anyone tell you differently.

I will fight until my dying day that endometriosis is real.  It is not something women make up.  And that this disease affects one in ten women.  Reach out.  Ask for help.  I know people all over that can suggest specialists. 

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