Foreign language

This week, in honor of National Infertility Awareness Week, I will be highlighting various types of infertility, conditions that may cause infertility, and types of loss. I hope you’ll follow along for education and connection. Let’s all do our best to end the shame and the stigma surrounding infertility; I’m pledging to do my best in my daily life to #FliptheScript. 

PCOS and endometriosis: a foreign language to most, these two medical conditions make up a good chunk of females suffering from infertility. Let’s break down these conditions; I’ll share signs and symptoms, as well as what women experiencing these issues wish others would know.

PCOS (Polycystic Ovary Syndrome)

PCOS sufferers typically have irregular or missed periods. Often undiagnosed or attributed to other causes, some signs and symptoms include (source): 

  • weight gain
  • fatigue
  • cysts on the ovaries
  • unwanted hair growth on the body and/or thinning hair on the head
  • acne
  • pelvic pain
  • disturbed sleep
  • and, of course: infertility

Women who suffer from PCOS often have ovaries that produce large amounts of small, immature eggs.

What real women wish you would know about suffering from PCOS:

I have PCOS and people just don’t get it. Why I weigh more, why I can’t lose weight, why I can’t “just relax” and get pregnant…

I was diagnosed with PCOS as a teenager, and just given birth control pills as treatment. No one told me about weight issues that accompanied this disease, I spent my entire teenage years developing an incredibly bad relationship with food and fostering a low sense of self worth, because I couldn’t just lose weight. No one told me about the mental health issues that often face teenagers with PCOS. Though many women find out they have PCOS when they are facing difficulties conceiving, PCOS is more than that.

Endometriosis

Endometriosis is an often painful disorder in which tissue that normally lines the inside of your uterus — the endometrium — grows outside the uterus. Endometriosis most commonly involves the ovaries, fallopian tubes and the tissue lining the pelvis. (source)

The largest symptom across the board for women with endo is severely painful, often debilitating periods, sometimes with pain that persists day in and day out. Other symptoms include:

  • nausea/digestive issues
  • pain during sex
  • pain during bowel movements/urination
  • excessive menstrual bleeding
  • and, of course: infertility

What real women wish you would know about suffering from endometriosis:

I have Stage 4 endometriosis. I would like people to know that horrible period cramps is not normal and it is definitely not “just part of being a woman”. Doctors may be quick to dismiss, do not be afraid to voice your concerns and demand answers.

Trust your gut. You’re not just a “wuss” – severe cramps aren’t normal.
I also had such extreme tube damage from the endo that both tubes had to be removed. No amount of relaxing or yoga will make them grow back and allow me to conceive naturally when I’m not thinking about it.

I am tired of people saying “just relax and you will get pregnant”. No, no I will not, you are not in my doctor’s appointments nor have you gone through everything I’ve gone through or do you know my husband also has fertility issues. It’s very frustrating to be told something is not a big deal. I also heard someone say the other day “if you don’t have endometriosis, don’t complain about your cramps and be dramatic for fun to someone who does have it. That’s not fair. We live with the pain day in and day out”.  I never wanted to say AMEN so loudly before. Women with endo live in pain every day and if not every day, just about. We still have to wake up, work, complete day to day tasks, etc when all we want is to be in bed and be pain free. And rarely do we even complain about it. We live with it in silence when we can and even depression. That is a bit of my viewpoint on endometriosis. I’m sure those with other fertility issues can relate as well.

Stage 4 endo and PCOS. I wish I advocated for myself earlier by asking more questions. I appreciate the doctors who I’ve worked with over the years and value the help they’ve given me. I also though know that the quicker they can get me out of the office the more people they’re able to see. That being said I wish I had asked more questions earlier on, and spoken up about how much pain I was in. Two surgeries and a bunch of medication later I have a better grip on things, but I always wonder if I’d be in the same spot if I started asking questions earlier.

How you can best support someone you know with PCOS or endometriosis: Acknowledge that what they are dealing with is a medical condition and cannot be relaxed, meditated or exercised away. Realize that not only can their condition be causing them physical pain, it is likely causing them mental and emotional pain and stress as well. Be present, not dismissive, and let them know that what they are going through sucks.

 

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