What is Endometriosis and How Does it Impact Fertility?

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“Okay… I’ve heard of it, but what actually IS endometriosis anyways?

This was the exact thought I had last week when a potential client shared her story of getting pregnant which required IVF because of her endometriosis diagnosis.

Even with two years of doula experience and a fascination with women’s health, I’ve never fully understood what endometriosis is and how it impacts fertility.

I sat across from her as she described how during one of her periods she noticed significantly more blood than normal. Enough that she was prompted to go to the emergency room where they gave her a blood infusion and quickly after shooed her away saying there was nothing abnormal besides a heavier bleed which accompanied her ‘normal’ period.

After seeking opinions from three (yes THREE… all of whom were male…a story for another blog post) providers later (who each sent her home saying her symptoms ‘weren’t abnormal’) she was left feeling belittled and unheard. It wasn’t until she was trying to get pregnant unsuccessfully and went into a fifth (female) provider who took one look at her chart and stated clearly “Oh - well I can see right away that you have endometriosis - most likely causing your infertility.”

This is only 1 of HOW many stories like this? Countless.

So, with this story in mind and it currently being #endometriosisawarenessmonTh, I decided I could no longer be ignorant…

So let’s break it down together:

‘ENDO-’ means internal

‘-METRIUM’ means womb

So endometrium is the inner-most layer of the womb. And endometriosis is where the endometrial cells (the ones that are normally found on the walls of the uterus) grow outside of the womb…aka in places they’re not ideally supposed to be.

Once/month, your ovaries send out hormones that signal the endometrium to build-up preparing the uterine lining for implantation of the egg. Once the egg implants in this comfy, cushy new built-up wall, if the egg isn’t fertilized, the endometrium sluffs off and results in that good old monthly panty surprise us women know ALL too well.

However, if you have endometriosis, this special endometrial tissue grows outside the uterus… for reasons that aren’t yet clear to scientists.

The tissue continues to thicken, then sheds and bleeds with every menstrual cycle. However, the blood and tissue that collects outside your uterus in your pelvic cavity has no way of leaving your body and can irritate the surrounding area causing these noticeable symptoms:

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  • Painful periods

  • Chronic worsening central pelvic pain

  • Pain during sex felt deep within the pelvis

  • Heavy bleeding or irregular bleeding

  • Pain with bowel movements or urination during your period

  • Pain in the pelvic area, lower back or legs

  • Nausea

  • Fatigue

  • Diarrhea and constipation

  • Infertility (well get to this below)

“Okay… I think I’m with you (even though it’s been over a decade since health class where we only spent 10 minutes learning about the female reproductive cycle)…. but how does endometriosis affect fertility?”

  • Bands of scar tissue (adhesions) may form, sticking the reproductive organs together (i.e. ovaries and fallopian tubes) or causing the fallopian tubes to close

  • Endometriomas can form on your ovaries (sometimes called chocolate cysts): fluid-filled sacs on your ovary that can invade the healthy ovary and destroy the eggs that are resting there. Endometriomas can also adhere to the fallopian tubes making it difficult for the fertilized egg to travel to the uterus

  • Ongoing inflammation from endometriosis can make the whole reproductive chain function less efficient - inflammation may affect egg production and ovulation

“This is a lot of information to take in… let’s say I have it… how is it treated?”

  • Pain management medications: aspirin, acetaminophen, etc.

  • Hormone therapy (i.e. birth control pills) can prevent monthly endometrial build-up and bleeding

  • Surgical: removal or destruction of endometrial tissue, removal of scar tissue and adhesions, removal/drainage of cysts, removal or destruction of nerve fibers that transmit pain, removal of the uterus (hysterectomy), removal of your ovaries (oophorectomy)

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“While I appreciate you explaining how it causes Infertility, I’d LIke to know what that means for getting pregnant…!”

Well, here’s the deal. Of the 10% of women of childbearing age who have endometriosis, only 30-40% of women with endometriosis are subfertile (it can take longer than is typically expected to get pregnant).

The good news?? Pregnancy is often still possible! The key is getting into your provider to get a better understanding of how to treat your unique endometriosis.

  • People with mild to moderate endometriosis, especially those who are younger may be able to get pregnant without intervention

  • Minimally invasive surgery to remove lesions, cysts and scar tissue may make it easier to conceive

  • Egg or embryo freezing is a possibility if you are not ready to have children but you are concerned about future fertility due to endometriosis

  • IUI (intrauterine insemination) may be recommended as a precursor to IVF: this is where the doctor places sperm directly into a persons uterus during ovulation and costs less than IVF (sometimes as low as $300/cycle)

  • Providers may use IVF (in vitro fertilization) where the eggs and sperm are combined in a lab before implanting the fertilized embryo into a person’s uterus - bypassing the ovaries and uterus all together (on average between 10-15K in the US according to the Society for Assisted Reproductive Technology)

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You’ve read this far (or skipped straight to the bottom) so I’ll make it Quick…

Just like anything in women’s health, it may take several attempts to get to the bottom of what you’re feeling in your body. One of my fundamental beliefs is that the more women tune into the natural rhythms of our bodies and the more armed we are with information (yep - give this article a share to spread the knowledge), the more likely we are to be our own outspoken advocates for getting the care we deserve.

So, while you’re simmering on all this info and pondering your bada*** lady power, here are a few of my favorite endometriosis community spaces if you’re keen to explore more:

…plus this short and sweet 5 min video (shoutout visual learners) explaining endometriosis

Endometriosis - causes, symptoms, treatment and pathology