10 things nobody tells you about Endometriosis

March is the awareness month for Endometriosis. In the past, I have told my story on Endometriosis and the surgeries I’ve had because of the disease, I decided to take a new direction in hopes to continue raising awareness.

 

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Surgery #2 – September 14th, 2017 -1 day post surgery. 

A quick reminder of the WebMD definition of Endometriosis (Endo): Endometriosis is the development of uterine-lining tissue outside the uterus. Symptoms may include abdominal pain, heavy periods, and infertility. Treatment options include pain relievers, hormones, and surgery.

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This is what Endometriosis looks like on the inside. Click here for image Link

So with this post, I will give 10 things that nobody will tell you about Endometriosis.

  • Even though one on ten females have endometriosis, it is still a very unknown condition amongst health care professionals. This is because unlike cancer or a broken bone you cannot diagnose it through imaging. The only way you can ‘officially diagnose’ it, is through laparoscopic surgery…but even then.
  • When you undergo the laparoscopic surgery, there is a chance doctors WONT find anything. But this does not mean there is nothing there. Sometimes it is microscopic or sometimes it is hidden behind organs that do not give the camera visible access. If this ends up happening, and it is rare. Don’t give up. Find another solution to help the pain.
  • The unfortunate truth of patients entering the ER many times due to Endo pain. Doctor’s could end up believing a patient is a drug seeker. And you can end up with a reputation on your profile. This is because they don’t see any ‘results’ in the basic tests run when you end up in the emergency.
  • Everyone thinks once you have a surgery it is over and done with. However, that is not the case, it is actually FAR from it. Usually most who really have endometriosis will have to go through several procedures in their lifetime.
  • Hysterectomies ARE NOT THE ANSWER. While for some cases they do help. Having a hysterectomy is not a known cure for endometriosis. Try every possible thing and make sure it is the last resort. If you do have the hysterectomy note that  endometriosis can still grow on other organs; bowel, intestines, bladder etc.
  • Pregnancy is also not a cure for endometriosis. It does help relieve some symptoms (some of the times) but it won’t cure. Once the baby is born…that is if you are lucky to get pregnant, the symptoms will most likely come back and at stronger force.
  • Endometriosis is more than just painful periods. It can also include painful sex, painful ovulation and sometimes just a really bad day in general.
  • Endometriosis affects every single person differently. All the symptoms are different and none will stay consistent. Some months you will feel like you are dying with every symptom possible. Other months you are perfectly fine.
  • A major issue that doctors don’t tell their patients is the pain severity does not relate to the severity of endometriosis. One can have no symptoms and the stage four of the disease. Others can have so many symptoms and it is just starting.
  • The only person who can control your life is you. The couch is not your friend. You are your friend. You need to treat your body right. Eat well. Exercise well. It is hard. But if you want it, you can go get it. Do the best you can and don’t be too hard on yourself.

Here are the ten facts that nobody tells you about endometriosis that I have come up with over the years dealing with endometriosis.

For those who have the disease, did I miss any key points of what nobody tells you?

 

 

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3 Comments Add yours

  1. filly says:

    What they don’t tell you is that multiple surgeries will leave you with adhesions that pose problems and potential bowel complications. Endometriosis is very difficult to manage. They also do not tell you that HRT will restimulate endometriosis post hysterectomy and/or post menopause. Very difficult. Be kind to yourself. Good luck.

    Like

    1. Deidre Matthews says:

      Thank you! And I agree. There is so much we are not told. But I wonder if it is because the lack of knowledge in the medical world or if it is because of the disease is so diverse that there are too many different cases?

      Like

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