Beyond Chronic Chaos

Endometriosis

Endometriosis

Endometriosis affects 1 in 10 women, approximately 176 million worldwide.  It is just as invasive as cancer.  It occurs when tissue similar to endometrium tissue, tissue in the lining of the uterus, grows outside the uterus, generally in the pelvic area.  Pelvic pain is the most common type of pain associated with this disease, although not all women experience the same level of pain nor the same pain areas.  Pain will typically happen alongside menstruation, while some women will have pain all month long.

The Endometriosis Foundation of America defines symptoms of the disease as

  • Symptoms will vary depending on where the endometriosis lesions are growing, but may include:
    • “Killer cramps” – cramps that do not go away with NSAIDS and/or impede the activities of daily living
    • Long periods – periods that last longer than 7 days
    • Heavy menstrual flow – having to change your pad or tampon every hour to two hours throughout most of your period
    • Bowel and urinary disorders – including but not limited to painful urination or bowel movements, frequent urge to urinate, or diarrhea
    • Nausea or vomiting
    • Pain during sexual activities
    • Infertility

This disease does not discriminate, not by age, race or background.  There is a higher risk (five to seven times higher) involved if a relative has endometriosis but research has not provided enough information at this time.  It takes 7 to 10 years on average to be diagnosed with this disease.

Endometriosis causes infertility.  It is one of the top reasons women miscarry their pregnancy.  And if you are lucky enough to be able to get pregnant your pregnancy could be compromised because of it.

There is no way to test for endometriosis.

The only way to know whether the patient actually has endometriosis is to to a diagnostic laparoscopy to get eyes on the patient’s internal organs.  It can spread throughout the abdominal cavity.  The bladder, colon, intestines, ligaments, tendons, nerves, and even the lungs and diaphragm can be involved.  This is why it is so hard to diagnose.  You have to find a doctor that believes you and that is knowledgeable enough in this disease to be able to “take a chance” and operate.

Right now the best way to treat the disease is to have a qualified specialist perform an excision surgery where the endometriosis is actually cut out.  So many doctors want to treat with horrid drugs or even ablation surgery.  They don’t work most of the time.  And a hysterectomy does not cure endometriosis!!!!

THERE IS NO CURE! Let me repeat that, there is no freaking cure at all!!!

This disease is scary, painful and life altering.  It can make you feel like you are crazy because doctor after doctor doesn’t believe you because they can’t see anything.  Please don’t let that stop you from pushing forward and finding a new doctor.  It took me 22 years to be diagnosed and countless doctors telling me it couldn’t be that bad!  It was that bad and is that bad!!!  Reach out to me if you have any questions, if no one else will listen.  I can help direct you to support groups and hopefully a doctor nearby that can help you!

Cramps that knock you to your knees are not normal!!!! Don’t believe anyone that says they are! 

Reach out, someone out there will believe you and help you! You can always reach out to me! 

I have been through it and am going through it all still!!!!

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