Friday, April 24, 2009

there's a hole in my heart that goes all the way to china

I haven't been posting because I've been struggling, and I haven't wanted to get into it too much on this blog.

As I explained to my daughter - my body is better now, all healed and strong, but now it's time for healing my heart and making it just as strong. This whole thing took so much out of me, more than I realized until recently, and I am aching.

This has been exacerbated by people suddenly coming out of the woodwork. I can't help but find it really offensive to have someone ask me three or four months out, "How are you doing?" The insincerity and emptiness of it stings, and it's like picking at a scab for me.

I'll be fine. It's just that there's this hole in my heart, and I am trying to make it better.

Saturday, March 7, 2009

A sobering reminder

Tonight I am feeling sad for an EndoSister. She posted on a forum I frequent; she had a hysterectomy less than a year ago, after fighting endo for years and years - but the endometriosis is back.

And if that weren't bad enough, she's dealing with friends and family who doubt her, who think she was cured by her hysterectomy.

This has to stop.

Empowerment, awareness, education - and fight for a cure.

Wednesday, March 4, 2009


Support is so important when you have endometriosis! Talking with others who understand all too well what this disease is like can be enormously comforting - and empowering.

One of the support sites I recommend is

Monday, March 2, 2009

Now that's what I call raising awareness!

I just recently came across this story and am very impressed... Diana Wallis, the Vice President of the European Parliament, is running in the London Marathon in April - and she's running for the World Endometriosis Research Foundation! Diana is an endometriosis survivor herself and is determined to raise awareness of the disease. You can follow her training progress at her marathon blog.

Yellow Shirt Day

Today is Yellow Shirt Day! I'm wearing my yellow shirt for endometriosis awareness.

Sunday, March 1, 2009

Myths of Endometriosis - Hysterectomy

During Endometriosis Awareness Month, it's helpful to get accurate facts out there about the disease and to dispel the common myths about endo. The myth I'd like to tackle today is this - that hysterectomy cures endometriosis. Obviously, this is a topic of particular relevance for me.

You see it on the message boards and email lists - women saying, "My doctor says I need to have a hysterectomy because of my endometriosis." They post looking for assurances that this major surgery will solve their problems at last and that they will be cured.

Hysterectomy does not cure endometriosis. Nothing cures endometriosis. I can't be any more blunt that that, folks. Up to 40% of women who have a hysterectomy will experience a recurrence of endometriosis within five years. The key with endo is the removal of the disease, not the reproductive organs. Endometriosis can continue to grow even after hysterectomy.

If you have endometriosis, you're going to have to become your own best advocate. Find an endometriosis specialist - no matter how much you like your regular ob-gyn, this is not a disease for a general practitioner. You will need a skilled, experienced surgeon who is up on all the current research and who will treat you with compassion and respect. You deserve nothing less, and should settle for nothing less.

I personally would never recommend a hysterectomy to anyone who has endometriosis. In my case, I was also dealing with adenomyosis and had exhausted my other options for treatment. I made the decision to have this major surgery knowing full well that it was not going to cure my endometriosis, but that it would resolve some of my other issues. My surgeon removed every last bit of endo he found while performing my hysterectomy - and now we all cross our fingers and hope. And that, my friends, is the way it goes with endo - surgery, and then hope.