NIAW 2017: Listen Up - I Will Not Be Silent

I wasn’t sure what to write for National Infertility Awareness Week this year.  I haven’t been having much time to blog, and I haven’t been very connected to the ALI community online, which doesn’t seem to have the vibrancy that it did several years ago.  But I still need to do something for NIAW, and at this point that means writing.

The theme for this year’s NIAW is Listen Up.  That theme says a lot to me because of where I’ve been and where I’ve come on this journey.  I originally started my blog to encourage people to listen and to not be part of the problem of silence and shame that surrounds infertility.  Along the way, I encountered a wide range of willingness to listen and understand.  There have been people who told me they were glad I was speaking up because they did not feel like they could do the same.  There have been people who were supportive and glad to learn more.  There have been people who have shared information for me to listen to, and who listened in return.

There have also been a large number of people who don’t want to listen, who just want me to shut up and be a good little girl and not talk about things that people don’t want to hear about.  The people who told me that no one really wants to know how I feel.  The people who told me that infertility isn’t something to be open about.  The people who acted like they wanted to listen, told me they wanted me to talk to them about how they felt, and then hid from me, talked about me behind my back for being open, used my feelings and my needs against me.

To them I say, Listen Up.  I am here, I am open, and I am not going anywhere.  I will not sit down and shut up and let you pretend that infertility is a dirty little secret that people deserve or that nice people don’t talk about.  I refuse to be silent, because in silence hides shame.  I refuse to be ashamed for having a medical condition, and I refuse to be ashamed for wanting a child or for wanting another child.  I refuse to be ashamed of my feelings and my experience.  So Listen Up.

http://www.resolve.org

National Infertility Awareness Week: #StartAsking about Endometriosis

This year, for National Infertility Awareness Week, I would like for people to #StartAsking about endometriosis.  I don't mean asking in a casual way, mentioning to your doctor, "Gee, I wonder if I could have this."  I did that, and it almost killed me because I did not push the issue and get an answer until I was bleeding out on an operating table.

Looking back, it appears that I had symptoms of endometriosis from the beginning of my reproductive life.  In high school, I took Advil by the handful for 10+ days a month because it was the only way I could get through the school day and function.  I saw a doctor my senior year and she gave me a low dose Pill, but the word endometriosis was never mentioned.  My freshman year of college the symptoms got far worse, and I was put on the highest dose Pill that's still made, along with iron pills for the amount of blood I had lost, but still the word endometriosis was never mentioned.  At that point I hadn't heard of endometriosis, but I expected that my doctors would tell me if they suspected something was wrong.  My mom had been on the same strong Pill for most of her life, and so I just figured I was like her.

When I was married the first time and we weren't successful with trying to conceive, we went through test after test, but nothing was ever found, so we had the fun diagnosis of "unexplained infertility."  We looked at hormone levels and whether I could have a blocked tube, but never at endometriosis.  At that point, I obviously wasn't using the Pill to control the pain anymore, but I had a doctor who prescribed a strong NSAID to help.  He never mentioned endometriosis as a possibility even with that, simply helped me manage the pain.

When I started dating my current husband, he wondered whether the infertility could be the result of endometriosis, given my history, but then we conceived my son and the question was put aside until I had a cycle again.  I finally asked the doctor that I saw for follow ups after my son was born, and she just said that the answer to that question probably didn't matter and wasn't worth pursing because pregnancy tends to improve endometriosis and because it couldn't be answered without laproscopic surgery.  I just kept getting and taking the same strong NSAID that the doctor back in Maryland had given me, now prescribed by my Georgia doctors.

And that's where we left it until I learned that I had miscarried my second pregnancy and needed a D&C.  The ultrasound had looked abnormal, but they thought it was a different kind of abnormal, a molar pregnancy with a bicornate uterus.  What I actually had was an ectopic pregnancy, implanted on my ovary because my tube was too blocked by endometriosis for the egg to get through, even with how small an egg is.  The doctors did not learn this until I was bleeding out because they had perforated my uterus in getting to where the baby actually was.

Obviously, I survived, and I still may be able to conceive in the future.  Maybe.  But the question that haunts me is, what if the endometriosis had been diagnosed earlier?  What if I had pushed the question? What if my doctors had raised it, any of the doctors that I had seen over the years?

So please, #StartAsking about endometriosis.  Women, #StartAsking your doctors, and start pushing the question if you are blown off.  Doctors, #StartAsking if a patient exhibits symptoms.  Your patients may or may not choose to have the surgery to find out, but they may not know they have a decision to make unless you raise the question.