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

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.

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.

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.

Saturday, February 28, 2009

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.

Saturday, February 21, 2009

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. :)

Sunday, February 15, 2009

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.

Tuesday, February 10, 2009

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.

Monday, February 9, 2009

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!

Friday, February 6, 2009

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.

Wednesday, February 4, 2009

Worth sharing

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

http://www.blogher.com/menstruation

Tuesday, February 3, 2009

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.

Sunday, February 1, 2009

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.

Wednesday, January 28, 2009

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.

Monday, January 26, 2009

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!

Saturday, January 24, 2009

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.

Tuesday, January 20, 2009

New research article on endometriosis

An article is being published in the New Journal of Medicine which has contains some pretty interesting findings -

A U.S. researcher links endometriosis to abnormalities resulting from defects in the early embryo. click here to read the press release.

I'm looking forward to obtaining a copy of the full article. The researcher, Dr. Serdar Bulun, has been studying endometriosis for the past fifteen years and is an adviser to the Endometriosis Research Center.

Monday, January 19, 2009

Well, duh.

I'm an idiot - I finally realized why I'm feeling so punk. It's sitting, people. You never realize how much you take sitting for granted until it hurts to do so. I've been doing an awful lot of it lately, and thus my exhaustion and pain.

So, this week, I'm resolving to lie down on the couch rather than sit. Hopefully that'll help!

Sunday, January 18, 2009

Three and a half weeks out

By the time Saturday rolled around, I was exhausted and in a lot of pain. It is frustrating to me that the most simple, basic routine of the weekdays prior took so much out of me. It is what it is - but it is frustrating.

Things that are good for the soul when recuperating - friends. A good friend came up to visit and we just spent the afternoon and evening talking, and hanging out, and it was exactly what I needed.

So if you're wondering how to support a friend in the wake of something like this, know this - that no gesture, however small, goes unnoticed or unappreciated. Just a phone call or a note can brighten an afternoon when you are struggling - just knowing that you are in someone thoughts helps a great deal. Recovery is a long and arduous process, and it's when you are weeks out and still feeling like crap that you need those little things the most.

The worst thing you can do is to do nothing. A blogger I respect tremendously recently wrote,

Now, first of all, let me reiterate that when someone is going through Something Bad, the one thing worse than saying the wrong thing is to say nothing. Nature abhors a vacuum and so do friends ... if you say nothing, don't call, don't write, you create a vacuum. Chances are good that your friend will fill in the vacuum with their own thoughts, and they often (the DRE-BFF tells me) have no basis in reality. Thoughts like, "Oh, I guess I thought we were closer than we are," or "I guess I'm really self-involved and they don't want to have to listen to me," or "They think I need to just deal with it and get over it, don't they?"

LizardEater is the mother of a toddler who has been battling a rare type of cancer called Wilms' Tumor. She's well worth reading. Before my surgery, I was donating platelets in Little Warrior's name.

Friends are an vital part of any recovery process. Never doubt the worth of a few kind words.

Thursday, January 15, 2009

Three weeks out

I've been struggling to put together a post after my post-op appointment yesterday. Everything went fine, and I was cleared in that I don't have to go back again. Stitches look good, everything's healing nicely. I'm to use my own good judgment about exercise and activity in general. I can swim or take a bath now.

I didn't get the pathology report or pictures that I was hoping for, so that was disappointing.

I'm also wrestling with the whole endometriosis issue.

They did find endometriosis on my right side, which explains all the pain in the months prior to my hysterectomy - particularly the ER and doctor visits which had everyone convinced I had appendicitis. They took care of it.

But I've kept an ovary. I'm only 37, and if we can hold off menopause for as long as possible then it's for the best. But it does leave me at risk for developing endometriosis again.

My surgeon put the odds at 50-50.

I'm choosing to be optimistic, but living with this disease, you get used to unfair twists and turns, and there will always be that little fear - will it come back? Have I gone through all of this, only to have to have more surgery in the future?

Endometriosis is such a rotten bastard, isn't it?

Monday, January 12, 2009

Today I overdid

Today, I totally overdid it.

I'm both proud of and chagrined by my walk this morning. I went to the local mall and walked around this morning, early, while all the mallwalkers were cruising along.

I swear, an 80 year old woman lapped me at least twice.

This, for me, is frustrating. I've promised my husband I will not set foot in the gym until my surgeon gives me the green light - which will be at least three weeks from now. But I am just not good at sitting still. In the past couple of years I was finally able to get my act together and get physically active again, and it has done wonders for my health. I enjoy working out. I enjoy the challenge of it, and feeling strong and powerful - particularly important when fighting a chronic disease that robs you of your energy and makes you feel as if your body is betraying you.

And today I went for an eensy little walk, and I am completely exhausted.

I have to remember that my body is doing a lot of work right now, healing from the surgery. But it's frustrating when doing something as simple as cooking dinner makes you need to take a two hour nap.

It's DeLurking Day 2009!

Who knew that there was such a day? But my blogging friends inform me that, yes, there is - so come on, don't be shy! No one likes posting in a vacuum... so say hi. If you have any questions, go ahead and ask them. Anything I'm not addressing? Speak up.

I'm glad you're here!

Ovaries

It wasn’t long ago that having a hysterectomy automatically meant the removal of the cervix and the ovaries. It was, quite frankly, easier for surgeons to simply remove everything while they were in there and so that’s what they did as a rule.

Current research, however, has provided evidence that the ovaries play an important role in women’s overall health. Studies have indicated that oophorectomy, or removal of the ovaries, may lead to an increased risk of cardiovascular disease and hip fracture. You see, those hormones your ovaries give off – even after menopause – do a lot of work. Estrogen helps with muscle coordination, protects your heart, your brain and your bones. It influences your memory and your skin. Additional studies demonstrate a link between oophorectomy and Alzheimer’s disease.

Nowadays most surgeons give careful thought to oophorectomy, and try to avoid it whenever possible. If a woman’s ovaries are diseased or otherwise compromised, then removal may be necessary. In some cases your surgeon may be able to leave one ovary – and believe it or not, that one ovary will take over and do the work of two.

If you have a hysterectomy and are able to keep your ovaries, your body will go through menopause as normal. It’s business as usual as far as they’re concerned!

Saturday, January 10, 2009

Two and a half weeks

A lot has happened in the past few days.

On Thursday, I left the house by myself and drove for the first time since my surgery. It was just a quick errand, but provided exactly the psychological boost that I needed.

On Friday, I woke up and went about my morning without once feeling significant pain. I curled up in my desk chair to read my email. I moved easily. I have turned a corner.

Of course, I am also fighting off a bad cold, and let me tell you that coughing is not pleasant when you have abdominal stitches.

And that's where we are at 2 1/2 weeks.

I am looking forward to my post-op appointment next week.

Wednesday, January 7, 2009

Patient satisfaction with LSH high

As I find interesting or helpful articles, I'll note them here on this blog.

This article is from Reuters Health, and is titled "Patient satisfaction high with cervix-sparing laparoscopic hysterectomy."

Two weeks and one day

Every day I feel a little better.

Today I am smoked because I had a very full day yesterday. My daughter had an appointment in the city. My father-in-law, bless him, came over and drove us there and back - while I'm cleared to drive by my doctor, I don't feel comfortable doing so yet, at least not for a long trip like yesterday's. There's a lot of snow and ice, and I worry about my reaction time or what would happen if I had to slam on the brakes or something. I'm hoping to try driving soon, but Mother Nature is conspiring against me.

So anyway, yesterday involved lots of walking, sitting upright in uncomfortable chairs and so on, and it took a lot out of me. I'm really getting frustrated and impatient, but trying very hard to be kind to myself and keep my eye on the big picture.

My daughter is taking excellent care of me. I automatically went to pick her up yesterday, and she stopped me - "Mama, you can't do that yet!" Smart kid.

This has been a tough week in general... my husband went back to work, and my daughter back to school. Things are close to normal, but not normal. Meals have to be cooked, which is an exercise in frustration - everything takes me longer and requires much more planning. There's laundry and dishes and all of that, and I try to leave some of it for my husband but hate doing so.

But an end is in sight. I'm even made tentative plans for a dinner date with friends in a couple of weeks. We'll reschedule if we need to, but it's giving me something to aim for and to look forward to, so I'm hoping that helps me move along.

I have a couple of informational posts I'm working on, and hope to have those up soon.

Sunday, January 4, 2009

Useful product alert

Thought I would share a tip - there is a product out there called the Bella Band or the Tummy Tube (depending on who's making it). Basically, it's a tube of thick nylon which you can wear around your waist. It's designed for maternity wear, but I have found it fabulous.

The Bella Band serves two purposes - it helps you fit into clothes, and it covers your belly. While recovering from surgery, your belly will be swollen and tender, and it will be either impossible or incredibly uncomfortable to fit into your regular pants. With the Bella Band, you can leave those pants unbuttoned and pull the band over them. And with your belly covered, you don't have to worry about your shirt riding up and exposing your gorgeous stitches and such.

For me, there was also the added benefit of feeling like there was a little support for my belly. No more worries about my insides oozing out of my incisions! (No, this isn't a rational fear or even a remote possibility, just one of those idiot things you sometimes can't help but feel.)

A word to the wise - you may want to purchase this via the internet or send someone else to the store if you are feeling emotional about fertility issues. For many women, even if they are done having children or are beyond childbearing age, having a hysterectomy is a profound loss - you will never, ever have another pregnancy. No accidents, no twists of fate, no miracles need apply. You're done. Game over. And if you are wrestling with the feelings surrounding that loss, having some perky clerk in the maternity store pepper you with questions about your due date will not be helpful, nor will the mailings you'll subsequently receive be welcome.

They warned me there'd be days like this

So today is a not so hot day. Physically, I'm doing ok - still pretty sore, still having to pay close attention to what I'm doing and so on. I spent all of yesterday downstairs sitting on the sofa, and believe it or not, sitting on the sofa can be exhausting and painful. I overdid it, should've taken a break or a nap or something.

Reading about the experiences of others can be helpful, but it's important to remember that we're all individuals and there are a lot of factors that play into how we recover. I read about a woman who went for a mile long walk into town after her LSH, and I held her up as my standard - and now I'm disappointed because I'm not in that same place, which is just dumb of me. In addition to my LSH, I also had endometriosis removed, so I'm pretty sore. I have to remember that.

I'm deliberately avoiding getting into too many nitty-gritty details about my surgery because I have not had my post-op appointment yet, so I don't have the full story, and I am have a lot of questions I want to get answers to as well.

Anyway. In addition to the physical crap, I'm dealing with a boatload of emotions. I'm all over the map right now. It isn't fun at all. I'm frustrated with my recovery, I'm panicky because my husband goes back to work and my daughter goes back to school tomorrow and I feel like life is moving ahead and I'm not going to be able to keep up. I'm mad that it's snowy and icy so I can't safely go for a walk around the block, which is what I'd love to do.

And mostly, right now, I am so angry at endometriosis. I am angry at the needless suffering and the lack of awareness that leads to that needless suffering. And I'm angry that my daughter is at ten times the risk of developing this horrible disease because of stupid genetics.

Anyway.

Onward and upward.

Friday, January 2, 2009

Hysterectomy - the basics

So - let’s talk about hysterectomy, on the basic level. A lot of people aren’t sure exactly what a hysterectomy is or what it involves.

A hysterectomy is the surgical removal of the uterus. Plain and simple. But there are lots of choices to be made with hysterectomy, and that’s where all those pesky and confusing details come in.

You may have heard the terms partial, total and radical. But what’s the difference, and what do they mean?


A partial hysterectomy means that the upper part of the uterus was removed, leaving the cervix intact. This is sometimes called a subtotal hysterectomy, or a supracervical (‘above the cervix’) hysterectomy. The cervix is, in fact, part of the uterus – it’s actually Latin for ‘neck’, and so the cervix is basically the neck of the uterus.

A total hysterectomy refers to the removal of the uterus and the cervix. Sometimes people will call this a complete hysterectomy.

And then there’s the radical hysterectomy. The radical hysterectomy involves removal of the uterus, the cervix, the upper portion of the vagina. Lymph nodes, lymph channels, and tissues that support the uterus are removed. A radical hysterectomy is most commonly performed when a woman has cancer, although there are other conditions for which it is recommended.

Now, you may be wondering why I haven’t mentioned ovaries yet. Most people assume that a hysterectomy automatically involves the ovaries – but that isn’t necessarily so! And that, my friends, is another post entirely.

Thursday, January 1, 2009

Day 9

This morning I woke up feeling like I'd overdone it working out the previous day.

It's mind-boggling - just over a week ago I had major surgery!

I'm continuing to take it as easy as possible, knowing that the gentler I am with myself for the first two weeks, the better for my recovery overall.

And I can say with absolute certainty that I feel worlds better than I did prior to my hysterectomy. This was absolutely the right decision for me.