Words By Mara

This week is National Endometriosis Awareness Week. I have a strong desire to help other women that are undiagnosed or recently diagnosed find the right help and answers.

Let’s start with some facts and stats first:

• 1 in 10 women have Endometriosis (also known as Endo)
• Endo cannot be OFFICIALLY diagnosed without surgery. A doctor might be able to determine if your symptoms match the disease but it’s not 100% unless they see your insides.
• 2-4% of women in the world have Endo.
• 30 to 50% of women with Endo may experience trouble with infertility. Stats don’t always matter though.
• Pregnancy is possible!
• There are other reproductive conditions that can cause extra pain or even mimic Endo.
• Endo is measured in stages but it does not determine your ability to reproduce or level of pain. Stages measure how far adhesions grow in your body.
• Pregnancy and surgery do not cure Endo.
• The best way to remove adhesions is with lasers – not burning.

What is Endometriosis? … Endometriosis is a female health disorder that occurs when cells/adhesions from the lining of the womb (uterus) grow in other areas of the body. This can lead to pain, irregular bleeding where ever the adhesion grow, and possible infertility. It can cause complications with your bladder, immune system, and digestion as well.

Okay, with that said… let’s talk about getting the proper care.

There are unfortunately too many doctors giving false diagnosis and false prognosis. Some doctors base their information on limited medical knowledge of the disease – an Obstetrician (OB) or Gynecologist do not have the same in-depth knowledge as an Endometriosis Specialist. The fact is that Endo adhesions are too small to identify (at this point) by ultrasound or other testing. It is only truly diagnosed through surgery and there is no cure!

When I started having unbearable abdominal pain, I discussed it with my current OB at the time. With an understanding of my medical history, he suspected Endo but never gave an official diagnosis. After my first surgery, he explained that it might be difficult to conceive and that I should see an endo specialist. Read more about my story here.

It was 2 weeks before my wedding when I learned it may not be possible to create a family with my soon-to-be husband. 2 weeks – that’s it. My heart was broken and I was terribly confused. If you’ve ever felt this way, read my other post on “Processing a Diagnosis” and “Understanding Women’s Health“.

Thankfully I met an Endo Specialist soon after the initial diagnosis and he was an absolute godsend. Never once did he say that I couldn’t have a baby – in fact he was very certain that I could. Yet it was hard for us to believe the new doctor based on what the other doctor said.

I can tell you now that pregnancy is absolutely possible with the right treatment, care and surgery. My husband and I are miraculously expecting our first child this summer. We are overjoyed and blessed beyond measure! 🙂

It is unfortunate but when doctors tell patients they MIGHT not be able to have kids… it’s not what the patient hears. The patient hears CAN’T. My mind was stuck on the negative because that’s what I was first told. I spent too many years worrying about my chances of getting pregnant and it really tested my faith.

Ladies – I know this is hard to surpass! That is why it’s so important to find the right doctor and get the proper care.

I hear story after story of women that experience the wrong diagnosis or have a bad experience with a doctor. It absolutely enrages me to hear stories of women getting less than optimal treatment. That is why I want to do everything I can to help others going through a tough transition of diagnosis and understanding the truth behind the complications of Endo.

With that said… I went to Twitter and asked some “Endo Sisters” to weigh in on this topic so that we could all relate to one another. I asked, “What has been the hardest part about being diagnosed?”

• @SalinaSh12 – For me the hardest part is still trying to explain it all to people. They switch off and put it down to problems with your period.
• @EndoForum – Finding peace with myself that I’ll have to live with this forever and make the best out of it without losing quality of life.
• @ LE_tait – Accepting all that comes with Endo and rise above it.
• @unbelizable26 – Learning to deal with the anger I had for the previous doctors who didn’t listen.
• @BattleWithEndo – Learning to cope with the fact there isn’t much they can do after surgery.
• @jennyrly10 – Having no control of how Endometriosis was eating away at my insides. Feeling isolated and exhausted at trial and error treatments.
• @EndoScotland – The emotional side effects of the decision you have to make.
• @bbbrittish – It’s totally unknown; it hurts sometimes and not others with no clear reason.

Thank you to all the Endo ladies for contributing to the conversation and raising awareness! Alone we can feel vulnerable and confused. Together we can learn more and raise awareness for a misunderstood disease.

If you have any questions – please do not hesitate to contact me by email. WordsByMara@gmail.com

*Please note: I am not a medical professional. A lot of my thoughts are based on experience and research.

Copyright 2014 Words By Mara. All rights reserved.

Sources:
http://www.endometriosisassn.org/endo.html
https://www.endocenter.org/
https://www.facebook.com/endowarriorssupport