Friday, April 28, 2017

I or My Partner Just Received An Infertility Diagnosis. Now What?

Take a deep breath. Repeat after me: I Am Not Alone.

Say it again. I Am Not Alone.

But I feel so alone. So ashamed, so isolated, and so heartbroken. My/my partner's identity as a man or a woman is in crisis. I feel like nobody understands. Nobody is listening.

I know. We've all been there and still feel this way sometimes. Did you say we? Yes.

We're all over the place. Some of us are no longer in hiding, and we want to support those who still are, while still protecting your privacy.

Some of these resources are MRKH and women specific because that what I know. If you don't find what you're looking for here, you can use these ideas to seek them out.

Facebook Support Groups

I have met many wonderful supportive MRKH women through the groups I am in. Use Facebook's search option to look for your kind of infertility or support you are looking for, and options will appear. Then request to join the groups that are appealing to you. I just did a quick search myself, and saw some for secondary infertility, PCOS, and Premature Ovarian Failure/Insufficiency. There are groups out there for you whenever you are ready to join. There may even be some for men with infertility, and some for partners, parents, other family members and friends who want to support each other in supporting their loved ones with their infertility journey.

Do you have MRKH? You can join the support groups listed below. Please only send a request if you are the MRKH woman or close relative. The admins do not allow just anyone to join the closed groups for privacy purposes.

The public group is MRKH Support and Awareness brought to you by the Beautiful You MRKH Foundation. Check out their website for some "secret" groups. 

There are 2 closed groups that are based in the US, but are open to MRKHers from all around the world: MRKH experienes, advice and support and MRKH Pen Pals

There are quite a few more closed groups that are specific to regions in the US, continents, and countries. These include, but are not limited to:


Mid-Atlantic: Strength and Unity (mid-atlantic region in the US)

Can't find your country/region? Simply search for MRKH, limit it to Groups, and scroll down until you see what you're looking for. If it's not there, join the general groups I mentioned above - many women are members of several groups so feel free to pick and choose. 

RESOLVE: The National Infertility Association and RESOLVE: New England

Both RESOLVE: The National Infertility Association site and RESOLVE: New England provide a plethora of information regarding family building options, resources and support groups, insurance information, fundraising and partnerships, legislation related to family building, education, advocacy, and events.

Blogs About Infertility Journeys

Chrissy and Lee chronicle their journey of choosing to become parents through gestational surrogacy because of Chrissy's MRKH, and life after their son Bram was born. They provide information on affording the process as well - 35 ways to be exact, plenty of FAQ's, resources and links, and a plethora of additional useful information.

I came across Just Stop Trying and It Will Happen because it won the 2013 Bloggers Unite Challenge, aka Night of Hope, run by RESOLVE every year. Although Tracy hasn't updated it in a year, I find it useful to read about her journey because I can relate to the raw heartache that is apparent in her posts.

Dawn, at The Divine Life, blogs about her infertility journey. She wrote a post called Friends With Infertility: 7 Ways Not to Be An Asshole. While the title implies that those with infertility are the ones being told not to be assholes, what the post is really about is the opposite. She gives 7 ways of how not be an asshole to your friend(s) with infertility. The title is catchy and it's what got me to click on it because my thought was "Really? There's yet another article about how infertile women should(n't) behave?" And then I read it, and love what she wrote from her perspective of being "pretty fertile." Advice from a fertile woman about how to treat infertile women? Genius, and oh so meaningful. The first step she suggests? You guessed it. Don't be an asshole.

Heidi, at Courageous MRKH, blogs about everyday life and how MRKH plays into it as only one part of her life. It is a courageous statement of how her infertility is not the entirety of who she is as a person, as a woman. She is more than her MRKH. She also makes bath and body products, Sunset Pines Naturals, and when a Courageous line product is purchased, a donation is made to the Beautiful You MRKH Foundation.

Making My Mark is another blog about a woman's experience with MRKH, and Charlie has come up with her own definition of the acronym. Instead of Mayer-Rokitansky-Kuster-Hauser, it's Motivation, Resilience, Knowledge, Happiness. Everything she shares embraces at least one of these points, if not all. She truly shows how motivational, resilient, knowledgeable, and happy we can all choose to be and follow in her footsteps. She embraces her disease and is all the more stronger because of it.

Wishful Mom is run by Charity who was diagnosed with Polycystic Ovarian Syndrome, commonly referred to as PCOS. She eloquently covers topics from marriage advice to what foods to eat or not eat during infertility treatments. And what do those TTC abbreviations really mean? I had never heard of the TTC (trying to conceive) acronym let alone sub-abbreviations, so I found that post helpful. From family and lifestyle to healthy living and money, we get to see different sides of Charity and know that she is more than her infertility.

More blogs about infertility are available by visiting these sites:
Resolve's Best Blog Winners
Beautiful You MRKH Foundation - Blogs about MRKH or by MRKHers
Infertility Blogroll at Creating A Family: The National Infertility & Adoption Education and Non-Profit

Center for Young Women's Health at Boston Children's Hospital

The Center for Young Women's Health is a great resource in general for any young woman, or parent of a young woman, with some form of infertility or other women's health issue.

In Closing

These are just a few resources that I have found helpful over the years. I hope that they are useful for you as well. Please share this post with anyone you think might find it helpful, and help spread the message that those with infertility are not alone.

4 comments:

  1. Great compilation of resources! I'm sorry that this is a struggle you are going through. I know many people that have struggled with this very issue. Prayers and good vibes!

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  2. such a difficult thing to go through, well done for sharing. This will help and encourage many people x

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