Endometriosis: Myths Busted

Endometriosis Myths Abound Everywhere!

As a person who has had endometriosis for as long as I can remember I can attest that myths about endometriosis still run amok all over the place.  These myths aren’t found just on the internet either.  I’ve heard them at school, the mall, even in doctor’s offices.

March is Endometriosis Awareness Month

Since March is Endometriosis Awareness Month, I thought it would be a good opportunity to touch on this disease that eventually had me walking with a bright blue cane for awhile.  You don’t know what Endometriosis is?  Check out my previous post on Endometriosis , or save it on Pinterest.

The myths and misconceptions I’m about to cover are not in any order of importance but they do need to be stopped.

 The Myths

  • All you need is a hysterectomy and you will be cured.  It’s a very common thing for someone to say to those of us with Endometriosis.  Unfortunately, it’s not the actual normal plumbing that is causing our pain.  Endometrial lesions are OUTSIDE of the uterus itself not just on our reproductive organs.  Some of my friends have had these lesions on bowels, ureters, a kidney, and really the list can just go on.  Mine was in the peritoneal wall of my abdomen, ligaments, and the Sigmoid colon.  Since hysterectomy only takes out the uterus and in some cases the cervix, all these painful lesions are left behind and so is the pain.
  • Endometriosis is just “monster cramps” take some over the counter pain medication and stop being a baby. When I had my excision surgery in September of 2015 with Dr. Ken Sinervo, that was the first time in my life that I remember having no pain from endometriosis.   After only 2 days, I didn’t need any pain medication other than over the counter Advil.  I didn’t need Advil for very long either!  This was also the first time that I actually realized that an over the counter pain reliever ACTUALLY WORKED.  Most people didn’t know that when they would offer me some of their Wal-Mart over the counter pain medicine, I thought they were crazy for thinking it worked.  I’m not even kidding when I say that taking Naproxen, even prescription strength, was as useful as taking sweet tarts or tic tacs for my pain.   If you also suffer from Endometriosis pain, you know that I’m not even exaggerating here!  Most of my life I thought all of you taking over the counter pain reliever were being sold snake oil, imagine my surprise when I took some, and it worked!
  • Just have a baby and it will go away. This is really bad advice and please don’t say this to anyone.  A baby is a permanent addition to your life that many women want and some of them can’t have due to Endometriosis and other issues.  Some ladies will find they have some time with no pain at all.  I on the other hand had a massive increase in pain due to the location of my disease.  When the pain finally returns, you now have a baby that needs you even though you can barely breathe through your pain.  Please understand, I don’t regret having children in spite of endometriosis and I’m not suggested if you have it, you shouldn’t have kids, just please do not think that having a baby will fix it. 
  • If you have Endometriosis, there is no way you will EVER have kids. Again, this is simply NOT true.  There are a lot of factors that will determine if a woman with Endometriosis can still have children.  It is much more difficult for you to conceive if you have Endometriosis on your ovaries or Fallopian tubes for example.  Personally, I was able to have some children, but my lesions were not primarily on my reproductive organs.  Ironically, many women are not even diagnosed with disease until after the first child is born.  Did you know that many of us have seen several different Doctors for as long as 10 years before we even get a diagnosis? 
  • If you just eat/drink this/that and exercise, all your pain will go away. While I am completely aware that certain types of foods can trigger different pain reactions, diet and exercise alone are  not enough for many ladies!  My doctor actually has a great chart in her office showing how certain types of food break down into compounds that can increase the pain sensation.  She also knows that I tried that (AND adhered to that!).  I spent 5 years as a vegan and lost weight and had some good days but it never reduced the pain long and it did in fact increase my thyroid disease. (But we aren’t talking about Hashimotos today.) 
  • Endometriosis is from retrograde menstruation/tampons. This one, I can sort of understand why it is still out there, it was the best theory years and years ago.  However, science has improved and we now know that even babies still born have had the lesions inside their little bodies.  While it is true that no one can agree on a definite cause, this isn’t it.  My own mother has endometriosis and wouldn’t let me wear tampons for this exact reason!  I still had Endometriosis though.  Some great Endometriosis specialists like Dr. David Redwine, Dr. Andrew Cook, Dr. Robert Albee, and Dr. Ken Sinervo have all published work showing that this theory is nothing more than a myth.  Unfortunately we still have pharmaceutical companies publishing this myth on their websites and pamphlets.  

These are 6 of the most common things I hear regarding Endometriosis.  What about you?  Do you hear myths about Endometriosis too?  I’d love to hear what you’ve learned about this disease and what has been proven false.

I have Endometriosis or think I may, what do I do now?

First of all, I’m so very sorry!  While we can’t yet say, there is a cure, there are some better methods of surgery that are becoming more main stream.  This is called excision surgery and it’s not the same as ablation surgery despite the many claims that it is.  You’re not alone!  At least 1 in every 10 of us have it.  Below I will list some great resources for you.

  1. Center For Endo
  2. Nancy’s Nook
  3. Endometropolis
  4. Stop Endometriosis and Pelvic Pain by Dr. Andrew Cook
  5. Dr. David Redwine’s Endopaedia

Thanks So much for spending time with me today.  I love hearing from ya’ll so please leave a comment or message below!

Until next time-

Davi

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