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.

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.

Support

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 WeAreEndo.org.

Why we need to raise awareness about endometriosis

This press release from Endometriosis UK says it all:

ENDOMETRIOSIS: SURVEY SHOWS TEENS AND YOUNG WOMEN TOLD TO 'GRIN AND BEAR IT '

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.

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.

March is Endometriosis Awareness Month

Welcome to Endometriosis Awareness Month! The fabulous Endochick has put forth a great idea -

MARCH BLOGGING MADNESS FOR ENDOMETRIOSIS AWARENESS

Endometriosis survivors across the web are going to blogging, twittering and talking about endometriosis all month long to raise awareness.

I'll start off the month by recommending a website - endometriosis.org. This site is a global one and has a wealth of information for anyone who visits.

Education, awareness, empowerment... and hope for a cure.

Back

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.

Oh, come on.

After talking with some hystersisters about how I'm feeling five weeks post-op, I realized that I am apparently dealing with my ovary going into shock.

Night sweats, insomnia, headaches, wild emotions and so on - super fun.

Hanging in there.

Another milestone

Four weeks and five days after my hysterectomy, the stitch on my left incision has finally fallen out. Yeah, I know, you're probably thinking, Big deal, so what?

The incision on my left side was taking much longer to heal. When I was moving from the gurney to the comfy chair in the recovery area, I managed to rip the stitch on that side - so instead of having a little 5 cm incision, I have a 20 cm gash. The stitch was hanging on on my left side because there was so much more healing to do there. It was also snagging on everything I wore and was very tender - so I am incredibly relieved to see it go.

I also took a big step forward today, quite literally - I walked my daughter to school for the first time in almost two months. It's only about four or five blocks, all told, but it was absolutely too much for me until today.

So hooray for progress!

Sickness + recovery = very little fun

I got pretty sick this week. Unfortunately, when your body is putting all its energy towards healing you are more vulnerable to all the lovely bugs that are floating around at this time of year. It was pretty much not a lot of fun.

Feeling better, and will catch up on more posting in the days to come.