Endometriosis- The Importance of being your own Advocate

Kunbi O / Monday April 9, 2018
This post is sponsored by SheKnows Media

Happy new week friends! As you know, last month (March) was Endometriosis Awareness Month and I have been doing a lot of self-reflection. One thing that has been on my mind lately is the importance of my own voice when it came to my chronic illness and resultant issues. Last week I attended the Wine + Gyn event hosted by SheKnows Media featuring a panel of truly amazing women: April Christina of Endonme, NYC Pelvic Pain Specialist, Dr. Tayyaba Ahmed and Moderator Nitika Chopra. Guys, it was WELL worth it!

I can’t tell you how much I learned about fighting for your health on this panel. Healthcare is such an important aspect of our wellbeing, so we have to speak up and continue to fight until you find what works for you. As Dr. Ahmed said during this panel, “Find a doctor that doesn’t look through you, but actually sees you.” Here are the 4 things you need to be armed with when advocating for yourself:

1.Know what it is:

(En-doe-me-tree-O-sis) is a chronic condition in which tissue that normally lines the inside of your uterus (the endometrium), grows in other places. What this means is that since there’s uterus lining tissue in random places, you bleed and hurt from these places when your period comes. No one knows for sure what causes endometriosis but there are a few theories. Some say it’s caused by a back flow of menstrual blood that has settled in the pelvic organs; some say it’s a transformation of cells that line the abdomen into endometrial cells; others say it’s an abnormal transformation of embryonic cells during development.  In general, endometriosis is estimated to affect between 3% and 10% of reproductive-aged women. A lot of researchers believe it could be genetic so if a relative of yours suffers from it, you’re 5 times more likely to have it.- www.speakendo.com

  1. Keep track of the Symptoms:

With endometriosis, endometrial tissue can grow anywhere in the body. Because of this, the symptoms of endometriosis can differ from woman to woman.  The 3 major symptoms are referred to as the 3 P’s:

  • Painful periods: Known as dysmenorrhea (DIS-men-uh-REE-uh)
  • Pelvic pain in between periods: Known as non-menstrual pelvic pain
  • Pain with sex: Known as dyspareunia (DIS-puh-ROO-nee-uh)

The ladies spoke in length about these symptoms and the importance of keeping track of them monthly. April Christina touched on keeping a monthly journal on your cycle and whatever symptoms arise. I thought that was a brilliant idea! Who else is more equipped to know your body than yourself? I for instance would have benefited greatly from a journal over my 16 or so years of terrible periods. I would have had proof and facts to present to my doctor. Some more symptoms to look for are:

  • severe period pains.*
  • lower abdominal and pelvic pain with or without a period.
  • pain with sexual intercourse
  • heavy periods
  • painful bowel movements or urination (doesn’t necessarily mean endo, could just be a UTI)
  • bleeding in between periods (could indicate growth of a “chocolate cyst” called ‘Endometrioma’ which is caused by menstrual blood backing up into your body).
  • Other symptoms include digestive issues like constipation, nausea or diarrhea.
  • Infertility

*note: the severity of your pain or symptoms does not necessarily indicate the severity of your endometriosis. Some women with minor endometriosis may suffer more intense symptoms than those with severe endometriosis.

  1. Ask Questions

Although many symptoms may point to it, you still need to confirm a diagnosis with your doctor. This is where self-advocacy plays the biggest part. ASK ALL THE QUESTIONS! Please remember that when it comes to your health, there are no stupid questions. Take your notes to your doctor and discuss every little thing with them.

Because a laparoscopy is the only way to confirm endometriosis, a lot of women go years without a diagnosis. I for instance went 10 years without knowing that I had endometriosis. By the time I was diagnosed, it had spread to most of lower abdomen. If you suspect something isn’t right, make sure you ask your doctor about endometriosis.

Dr. Tayyaba Ahmed discussing with us on the importance of talking it out with your doctor.
  1. How to Manage it

There’s unfortunately no definite cure for Endometriosis at this time. However, a lot of the symptoms can be managed through surgery and medication. Here are some methods you should know:

  • Hormone Therapy: If you’re not trying to get pregnant, this is most likely what the doctor will recommend. Hormonal birth control could be used for an extended cycle (fewer periods in a year) or continuous cycle (no periods) thereby calming the inflammation caused by the rise and fall of estrogen during periods. You can read a more educated description of hormone therapy here.
  • Pain Management
  • Homeopathic Treatment
  • Lifestyle Changes
  • Hysterectomy: You may have read about Lena Dunham’s very brave decision to have a hysterectomy . In severe cases of endometriosis, a total hysterectomy along with removal of the ovaries may be the best cause of action. This decision is of course a life-defining one and should be explored with advice of a medical professional.

This was an amazing event and I can’t believe I learned even more than I already knew about Endometriosis. If you would like more information on Endometriosis, I found this page by Speak Endo very helpful.