I am 35 years old, living with stage IV Endometriosis, possibly adenomyosis and struggled with infertility for almost 4 years. I also struggled with PPD and now struggle with PMDD. I am a mother to a son that was born at 18 weeks and too precious for this earth; and now a mother to a son born in August 2011. By journaling here, I hope to benefit both for myself and for others that are dealing with this disease and fertility struggles. Thanks for visiting!

Wednesday, March 6, 2013


Survivor Letter

About the Letter, from the author: Written 17 years ago, the “Survivor Letter”, as it has come to be called over the years, has been distributed around the world and reached over a million unique readers since its release.  It has been translated into several other languages; reprinted in books; shared extensively across global patient communities; read to the crowd from the steps of the Lincoln Memorial in Washington, DC at the national EndoWalk for Awareness; given to families, physicians, caregivers, spouses, friends and government officials; and is currently used by various advocacy organizations in the US, Europe and Australia to facilitate efforts at raising awareness and validating those who live with the disease. A heartfelt thank you to all who have felt it was of value enough to share.  Unfortunately, a very small number of select individuals have missed the point of, or otherwise misunderstood (perhaps intentionally), the Letter.  It was never written "in anger" or from a place of hopeless desperation. This is not an "angry" piece whatsoever; but rather, a heartfelt plea to simply BE HEARD and understood.  If one has never truly walked in a survivor's shoes decade after decade, or had an overwhelmingly negative impact on their life as a result of this disease, it is unlikely they would understand the real message - and though others may interpret it as they wish, girls and women who have truly struggled with endometriosis in ways that others will never understand DO 'get it' - and it is for THEM that this Letter was released publicly so many years ago.  The Letter is provided below to give those around you a better understanding of what it is like to live with a chronic, painful illness that is under-treated, under-diagnosed and widely misunderstood – and perhaps, even, ignored - by society at large.  More importantly, this letter is for all the Endosisters around the world who hold their heads high everyday - in spite of endometriosis.  It is you who have banded together and made real strides in this illness.  You are all my heros and  keep me motivated every day to keep fighting the good fight against this disease for us all.-Heather


Rebecca said...

There were times Endometriosis had ruined my life. But I'm not going to let it ruin the rest of the life I have left.

Samantha Ranieri said...

I Think this was very well said, I am proud of you for saying the things we are all thinking and feeling and you are correct on 100% of it. Its a constant struggle and there is no worst feeling than someone so close to you not understanding and thinking you are crazy for it. Thank you for this