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February is always the cruelest month for me, so I can't say I'm sorry that today's the last day! I have asthma and during the last gasps of winter I always end up with bronchitis. I was hoping that this year I'd escape it, but with my resistance down after my surgery I suppose it was inevitable.

But I'm excited to get blogging - because tomorrow is March 1st, and March is National Endometriosis Awareness Month.

My first symptoms of endometriosis appeared when I was sixteen - but it wasn't until I was thirty-three that a doctor actually uttered that word to me. That's seventeen years from onset of symptoms to first tentative diagnosis. And my story is not the least bit unusual among endometriosis survivors.

Awareness is the key. We have to raise awareness. And I'll be doing my part to do just that during the month of March.

See you tomorrow.

Brief check in

Just wanted to post quickly to say that I am doing fine - other than being ill. The flu turned into bronchitis. Recuperating. Will post when better. Thanks. :)

Struggling

As is completely natural after going through a very traumatic fall and a major operation, I am struggling right now emotionally. I've gotten past the immediate physical recovery, more or less, and now it's time for the emotional aspect. I am choosing my company very carefully. I am making great efforts to choose my words carefully. But I do think it's important to acknowledge this for anyone who's reading and going through their own recovery - it's normal. Not a whole lot of fun, but normal.

A moment for clarification

I just wanted to take a moment to make some very clear. I'm pretty disturbed, because I received an email from someone who said about my hysterectomy, "It sounds like it was scary and not safe, and I am sorry you had to experience that."

Nothing could be further from the truth. Let me be quite explicit here - this was the best decision I have made in a long, long time. It was carefully researched, and I screened many doctors before being satisfied that I had found a competent and compassionate physician. I went through every option available to me before coming to this end point. I had multiple opinions, made my lists, checked them twice and then twice again. I am completely confident in the decisions that I made, and in the advice that I was given.

The care that I received before, during and after my surgery was exemplary. After so many years of dealing with less-than-stellar care, after learning to advocate for myself and schooling myself so thoroughly in this disease that the nurses kept asking me if I was a nurse myself, I knew that I was receiving fabulous care. Everyone was sympathetic to both the physical and emotional aspects of my treatment and my surgery. If there is one thing I carried away from all of this, it was that I finally got to the right team and that they took absolutely wonderful care of me.

And I feel better now, despite recovering from my surgery, than I have felt in a very long time. So much so that now I can't quite believe that I made it through last year. Family and close friends knew how bad it was, and even they didn't quite know just how bad. My husband and I know the full story. Things were very, very, very bad.

So to have someone make such a bizarre and quite frankly condescending statement to me was jaw-dropping.

If you had walked in my shoes over these past years - if you knew about all the pain, the ER visits, the doctors,the pain, the medications, the side effects, the pain, the slowly shrinking world that becomes yours when you are dealing with a chronic and worsening health issue, and oh yes, the pain - then you wouldn't dare say such a thing to me. Shame on you.

Healing question

This weekend I was asked this question - How does the recovery for a hysterectomy compare to the recovery for a c-section? It's not a bad question, actually. And since I've now had both, I'm able to compare the two.

(Before I go any further, let me just note that I'm speaking only about my laparoscopic supracervical hysterectomy, or LSH. Hysterectomies may also be performed via an abdominal incision or vaginally, and the recovery process is different for each of those procedures.)

With a LSH, the operation is minimally invasive; the whole thing is done with very thin instruments inserted through small incisions and with the aid of a video camera. If you're a geek like me, you can't help but find the whole thing fairly fascinating. Yeah, we all have our things, and apparently cool medical procedures are mine. Anyway, in my case, there were three small incisions - one in the bellybutton, and one on either side of the abdomen.

With a c-section, I had a bikini line incision which had to be big enough to allow the extraction of a full-term baby. The scar is about five-and-a-half inches long.

Here's my honest estimation - the c-section was much, much easier to recover from. As I put it this weekend, when they did the c-section they pulled a baby out and stitched everything back up - but when they did the hysterectomy they removed an organ and removed endometriosis. Oh, and an ovary. All of that was really rough on my body. I do think that people tend to blow off any laparoscopic surgery as no big deal, but that really betrays a lack of understanding of the procedures. Just because they're using teeny little instruments doesn't mean they're not doing major work!

You want progress? I've got progress.

At this point, the main symptom of my recovery process is a tendency to get over-tired. Amazing, isn't it?

I went out last night for the first time in a long time. Prior to my surgery, I wasn't really in shape for going out. In fact, I would have loved to thrown a 'farewell to my psycho uterus' party before my hysterectomy, but I wasn't up for it even in the slightest. But last night, I met old friends for dinner and drinks - some of whom I hadn't seen in close to twenty years - and had a wonderful time. I stayed out very late and laughed myself silly for hours on end. This morning I was exhausted, and took a two hour nap after doing my morning errands - but other than that, I feel fine.

I cannot tell you how wonderful that is. Sometimes, when you're in the middle of something, you don't realize quite how intense it is. Now I look back on the autumn of 2008 and wonder how on earth I held it together and kept functioning.

Worth sharing

A beautiful post on BlogHer about hysterectomy, coming just when I really needed it:

http://www.blogher.com/menstruation

Six weeks today

It's hard to believe that at this time six weeks ago I was in the recovery room after my hysterectomy.

Pain-wise, I'm doing very well - only a few twinges if I overdo. I'm still easily tired. We had a big event Saturday that completely wiped me out, and I spent all of Sunday on the couch exhausted.

I'm even thinking of heading into the gym next week - nothing strenuous, just a slow walk on the treadmill! I'd rather take my time now than set myself back by overextending myself.

The best part - my adenomyosis pain is gone. No more sharp stabbing pains, no more feeling like a red hot cannonball is lodged in my pelvis.

Progress.

Just a thought

I remain flabbergasted by the people who do their best to pretend I haven't had major surgery or to ignore my health issues. Because, oh my god, it has to do with my womanly parts.

To say I consider these people utterly pathetic would be too kind. No, I don't need you to hold my hand and sing kumbaya at a campfire. You don't have to say the word 'uterus' if you're truly that uptight and it freaks you out. But, geez, if you see me a month after my surgery and can't even say, "Looks like you're feeling better," or "How are you?" or anything like that, then, well, um, wow.

In all seriousness, setting aside my own personal annoyances with people -

It wasn't all that long ago that no one would acknowledge breast cancer. It was considered shameful and embarrassing and you were supposed to go to your corner and not speak up about this horrible disease, because heaven forbid we say the word "breast" in polite company.

2.5 million women in the United States have had breast cancer, are survivors or are warriors. To put that in perspective, the population of Nevada is 2.6 million.

Endometriosis doesn't kill you. It just does its best to destroy your life. Sometimes I go to the various endo support sites and I just weep, reading the posts from all these women who are suffering. Here's a sampling of subject lines from a boards I frequent:

22 & a hysterectomy? Advice, please!
Horrible ER experience
Bleeding won't stop
Ruptured chocolate cysts
Endo found on bowels
I just can't stand it anymore
Which painkillers work best
Finally giving up on having a baby
Lost my job, too many days out


The average woman suffers for 9.28 years before they're diagnosed. And then once you're diagnosed - guess what, there's no cure.

Take a look at this survey of 4000 members of the Endometriosis Association. 79% of those women report they cannot carry on normal activities as a result of their disease. 61% of them were told there was nothing wrong with them the first time they sought help from their doctor.

All that suffering - but we're not supposed to talk about it.

There are 5 million of us with endometriosis in the United States today. That's more than the population of the state of Colorado. It's five Rhode Islands.

God forbid we make you a little uncomfortable by talking about it, though.