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Velkome to my house ov horrors.  In the next few minutes you vill be "treated" to blood and gore, and grossness, and all zee thinks that make Halloveen "special."

But I must varn you!  If you aret squeamish of zee blood and ov zee female parts leaf now! really, leave now

You half been varned!

Follow me beyond the squiggle of doooooom!  

KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic.  There are two parts to each diary.  First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.

The first room on our tour iz zee family sitting room, often called zee livink room, I zink.  See the pads that cover one side of zee sofa.  Vhat could it be hiding?  Vhat could it be protecting?

Ve shall soon see.

I vould take you into zee bathroom but it is too gory and too bloody.  Blood on zee floor, blood on zee carpet, blood in zee bathub, and in zee sink, blood all over and down zee toilet.  Dis place!  Somethink horrible must ov happened here!

Don't be disturbed by zee drops of blood you see from zee bathroom to zee bedroom.  Or was it from zee bedroom to zee bathroom?

Zhen to zee bedroom. Zee bed, zee blood, all zee blood!

SOMEONE must have been murdered in here! - (scream) -

I could continue in this vein but I don't think you'd take me seriously, if I did.  This was my life, and the life of my family.  For 11 years (1996 - 2007)

(you can stop the music if you'd like)

There was no murder in my home, the person who bled was me.  And I bled a lot, every  28 days (give or take 5 days).  And  I would bleed heavily for 3 days, then it became 4, then to 5.  I wish I could give you a quantifiable amount.

If my periods were a person you'd call it a drama queen, prone to the dramatic, even in it's very first entrance.  I might be the only woman who at 49 can not only tell you the age I was when my menses started (most woman can probably do that) , but I can still tell you the day of the week, around the time it came, and where I was.  I was 12 (1974), it was Sunday around 10:30am and I was at church.

You see, drama.

It made one more dramatic entrance, starting just minutes before I was to walk down the aisle to marry the guy I am still married to (1986).  I had planned for every possible thing to happen - put your thumb through your first set of nylons because you're so nervous, no problem, you've brought a second pair.  Accidentally pull your dress too hard and rip a seam slightly, no problem, you've brought safety pins.  The benefits of a second marriage is that I knew all the insane things that could happen getting ready to walk down the aisle.  I had planned for every possibility but this one.  Our wedding was delayed while my sister, my friend and my mother, went out to the female wedding guests to quietly ask if they had any "feminine protection."

More drama.

But between 1996 and 2007 it was all drama, all the time.  I would go through a large box of jumbo orange Tampax tampons every period and need more.  As would happen on many occasions I would change my tampon, walk out the front door and go 30 feet to the mailbox then have to run in and change the saturated tampon.

While I had had, from the very beginning, blood clots, they were only the size of a pea or chick pea.  From 1996-2007 however the blood clots that I'd pass, were large. Sometimes a half inch to an inch wide and 3 inches in length. In color and visual texture (visual NOT tactile) they resembled beef liver. (hey, I warned you it'd be gross)

And it was like this every month.  Many a night while on my period I didn't even bother going to bed, because I'd be up more than I'd sleep. So why bother?  But I would sleep, often crash.

I'd be so tired by the end that I'd miss seeing something I accidentally got bloody while trying to take care of the mess, and my boys would complain (hey!  I don't complain when you all leave the toilet seat down and make it a mess.  I've put a can of Clorox wipes by the toilet.  If I can clean up your mess . . . .)

Twice I was so tired I hadn't even noticed passing a huge blood clot as I stood trying to clean up.  Once my boys saw it, and once my husband saw it.  Not knowing what it was he picked it up to examine it.  Then he called me, and I explained.  It was at that moment his attitude changed from concern to "she must be going through hell, what else do I not know about what's going on here?"

Once when describing the amount I bled to someone, she accurately accessed that it was like having a miscarriage every month. I hadn't thought of that before, but since I have had two miscarriages, so I had had that experience, I could say "yes! exactly like that."

I was also gaining weight.  I'd hear "you need to get up and exercise," from people, even my own doctor, who seemed to have no idea how tired, wrung out, and exhausted I was.  

Scheduling your life around your period is something many women say they do, and when you bleed this much, you absolutely have to. My periods have also never been 28 days apart.  I gave up trying to count days after a few pregnancy scares.

If it hadn't come by 45 days, well then is the time to start worrying.  

But try having a life when you are basically chained to the bathroom for a week.  

Hold a job?!  How?  If I managed to have a job that gave me sick and vacation days I would use everyone of them and a few more just dealing with my period.  What employer would deal with that?

Just staying well was a challenge that I often lost.  Bleeding this hard and this much often results in iron deficiency anemia, which I have.  It also weakened me, and not being able to sleep fully took it's toll.

So after a week of not being able to go any where, or do anything, but possibly go do the grocery shopping, I'd be lucky if I didn't catch anything one or all of my four children would bring home.  Since I was already in a weakened state, an  opportunistic bacteria or virus would have a field day and it would take me a week or two to recover when. . . .

. . . ding, ding, ding . . . .

 . . . my period would start again.

Truth is for 11 years the weeks when I was well were rare.

So that "I" wouldn't ruin our furniture or my car's seat I would always put a chux pad where ever I sat, and I kept a pack in my car just in case it would start without warning.

Needing chux every where you go also does a number on your self esteem.

Then there was the bed I share with my husband, that looked as if someone had been murdered in it.  Bless him, he never complained about that.

There were some funny things that happened too.  My heavy periods began when my youngest son was 1.  As he grew older and went through potty training he surmised that the issue was that I didn't know how to hold it in, so he counseled me.

He showed me how to cross my legs and a few other tricks.  It was cute and he was so earnest, very sincere, and I thanked him.

As he got older and more able to understand, he saw an Always commercial with the end catch phrase, "have a happy period." He asked me if that was even possible.

You may be asking yourself right now why I hadn't gone to see a doctor.  The answer is I did, family practitioners, gynecologist, and specialists.  All would begin the same way.

They'd listen to my problem.

Vow to help me and find a solution.

Order blood tests, pap smear and an ultrasound.

And all would end the same way too.  So predictably that I could practically mouth the words with them.

All the tests came back normal. The ultrasound doesn't show anything remarkable. We can't operate on a "healthy organ."

I heard it so many times, I thought I'd go postal.

I had thought that hysterectomy was my only option and that I was at first willing to do to have a life.  But then I realized that it would mean a diminution of my sexual pleasure because my uterus contracts in orgasm.  

One of the specialists I went to seeking relief was male.  He did listen and seemed very empathetic.  We talked about the possibility of a hysterectomy and I told him about how I feel orgasms.  He poo-pooed that observation saying that that just didn't happen.  It was only the cervix and if they just left that, well all would be fine.

I wanted to ask him if we just left him the top of his penis, if his sexual pleasure and orgasms would feel the same.  But I didn't, I had yet to find a female doctor who understood what I was saying, why should I expect a male doctor too.  I felt very much like    
Nancy Krieger Weston (Patricia Wettig) on Thirty Something.

When faced with hysterectomy and ovarian cancer, Nancy begins talking about the concept of the "Female Eunuch" and what it means to a woman's over all self concept and how blithely people take this procedure, that will change her sexuality and sexual enjoyment.  No one understands what she is saying and she feels alone.  This I understood.

The male specialist did try to fix it by using hormones, but I was so sensitive that the first night I was screaming in pain because it felt like my skin was burning off.  It ended within 24 hours.

In the years following I met a woman who had a hysterectomy whose uterus also would contract in orgasm.  She told me NOT to have a hysterectomy, that I was right.  But we seem to be too few in number for some doctors to understand.

Sigh. . . so I resigned myself that I was going to have to live this way, until menopause.

Until May of 2007 . . .  when Amanda Marcotte of Pandagon went off on Leslee Unruh, president of the National Abstinence Clearinghouse,   in her blog post "The source of our collective delusions may be summed up in one sentence".

She was being interviewed  by Neil Cavuto on his show along with Mary Alice Carr, NARAL.  They were "discussing"the  "controversy"  over the FDA approving the birth control pill,  Lybrel. The no period pill.

Carr: . . .have a lot of issues where their period every month is actually a problem for them

Unruh (interupting): Lies, lies, lies, lies, lies and more lies.

Carr: This actually would help them to actually avoid that (unintelligible)

Unruh: Planned Parenthood and NARAL have been out there trying to control women for many years. And we are seeing heart ache and disease and young women who are suffering.

Bet you can't tell what set me off /snark

I went off in a rant that deserved it own blog post.  It began:

WARNING – DO NOT READ THIS IF YOU ARE SQUEAMISH

Hey Unruh STFU!

I’m 44, past my “baby making” prime. . . my period has been a problem for 11 years and I am actually enslaved by it.

(and I did pull it and the subsequent followup  out and onto my own blog.  They were both good rants.IMHO)

What I had was "menorrhagia"

Menorrhagia is the medical term for menstrual periods in which bleeding is abnormally heavy or prolonged. Although heavy menstrual bleeding is a common concern among premenopausal women, most women don't experience blood loss severe enough to be defined as menorrhagia.

With menorrhagia, every period you have causes enough blood loss and cramping that you can't maintain your usual activities.

-Mayo Clinic

My rant at Pandagon produced advice that I soon took

Clytemnestra - I believe there is a new procedure where the doctor cauterizes the uterine lining. No periods (or extremely light periods) and no hysterectomy.

You may want to talk to your gyno about that.

-Wayward

Endometrial ablation -

Endometrial ablation is a procedure that destroys (ablates) the uterine lining, or endometrium

-webmd

I found a new gynecologist and explained my problem to her and that I wanted  endometrial ablation.  She pulled me back and slowed me down, first we needed to do all those same tiresome tests. . . . again.

And I did, arriving in her office to hear the results.  Again, as so many times before I heard:

All the tests came back normal. The ultrasound doesn't show anything remarkable.

I felt my heart begin to fall as I was sure the next words were that nothing could be done because of my "healthy organ."

Instead she began discussing ablation with me.  Was I sure?

Hell yes!

I wouldn't be able to have any more children after the procedure.  Was I sure?

I've had four.  I'm DONE!

So she explained that they do NovaSure.  But if there were issues they would "burn off" the uterine lining "manually."  Basically mouse ball tracking, video game style.

As part of the prep to make sure there weren't any abnormalities inside my uterus that couldn't be seen via ultrasound she wanted to do a hysteroscope (put a camera in my uterus).  So we scheduled that for an in office visit but my uterus wouldn't cooperate.  Since the hospital had the equipment for the "tough" cases like me/mine a hysteroscope would be done there before the ablation.

I was anxious and actually had a feeling of hope that had been long absent.  Because of RomneyCare our health insurance (the third one my husband's employment had moved to since this all started) couldn't deny the procedures because of a "preexisting condition."  

But that doesn't mean that they didn't try to get out of it.  They did.  They called my doctor, the hospital and finally me, to try and pressure us out of it.  My doctor told me of their call(s) saying she had never experienced anything like it.  When they called me to make sure I really wanted and needed this, couldn't I just do xyz instead, I stopped the rep short.  Explaining what my life was like,  I gushed  thanking them for "giving me "my life back.  

The call ended and there was no question but that this was going to happen.

The day arrived, it was all outpatient and I went in.  During the hysteroscope they found polyps inside my uterus.  There were so many of them that they looked like pink overstuffed cushions packed closely together.  From the picture they showed me it actually had a rather  comfy, and inviting quality to it.

- Polyps, had been the cause of 11 years of heavy periods and a life on hold.

- Polyps, that were not detected by ultrasound, even the internal probe.

- Polyps, that could have been simply discovered, and dealt with if someone had thought to put a camera up there and just check it out.

Because of the presence of polyps I then had an unexpected procedure, a Dilation  and Curettage (D&C), to remove the polyps.  This was necessary to make the lining of my uterus more regular.  But even with that the chance of "over burning" areas was too high for NovaSure so the ablation was done the "manual" way.

For a while my periods ended completely, which was to be expected.  Then it  came back and were manageable, also to be expected.  Now, while my periods are "heavy" they are no where near what they were, and I can manage.  I can even sleep at night!

But more importantly, my house no longer looks like a bloody house of horrors.

Priorities! ;-)

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