A bit of background about my health (gynecological)

[cjsmith]

Sometimes I think I gripe about this too often, and then I forget there are also folks who don't know my history and are curious about it. Feel free to skip this if you've heard it before. Backstory here.

I've had severe monthly pain since I was twelve. I tried all the remedies that seemed to help other folks: vitamin B, heat, exercise (fitness seemed to make it worse actually), weird herbs, etc etc. I developed a pretty strong resistance to most OTC painkillers and almost all anti-inflammatories. (My record is 17 Aleve in a day. It keeps me walking, although slowly. I don't remember how many aspirin I was taking, back when there weren't OTC anti-inflams. It was a dangerous dose.)

Exploratory surgery in early 2002 finally ruled out endometriosis. (I have the video. Hee!)

I went to a specialist. She diagnosed me with herniated nerve bundles along the sides of my pelvis. The nerves are pinched, basically. I sometimes refer to this as sciatica in my belly. [EDIT: This is most likely caused by body fat working its way into the channels in which the nerves run. Some women can lose 15 pounds and get rid of this kind of pain. The doctor agrees that I don't have fifteen to lose.] We have tried various nonsurgical things.

I am now on continuous monophasic birth control (which makes most people quit bleeding) AND a Mirena IUD (which dispenses progesterone and by itself makes some people quit bleeding). The result is the hernia pain is greatly reduced and I now bleed every single day. I also have cramps -- moderate ones -- every other day or so. (Two days ago I had to call for someone to give me a ride home. I could get in the car under my own power, though. That's on the high end of what I mean by moderate.) I believe the cramping is because my uterus is retroverted (it has a strong bend in it), and thus there's very little room for the IUD. Interestingly enough, I have never had "cramps" before in my LIFE. Only after the IUD did I discover what "cramps" felt like.

As soon as I qualify for FMLA (unpaid leave from work for medical reasons) I intend to ask for hernia repair surgery. Recovery is very long and apparently quite painful. [EDIT: Repair involves pulling out anything that doesn't belong in the channel, tightening up the channel itself, and putting a little screen in the way. Unsurprisingly, this hurts. Unsurprisingly, I've stopped believing doctors when they say something hurts. They have no IDEA how much I ALWAYS hurt! But if everyone who has this surgery already has my basic pain level to start with, and THEY say it hurts, then I bet it actually does hurt.] If insurance will help pay for it, I'll ask for a partial hysterectomy too. However, since the uterus is likely not the problem, this might be denied.

Comments

[quasigeostrophy.livejournal.com]

Thanks for posting this. I knew most of the story, but never feel comfortable asking too many questions about a topic like this (medical, not necessarily specifically gynecological).

You always have lots of vibes coming from here to help you get what you need to feel better, for whatever they're worth.

[cjsmith.livejournal.com]

Thank you! And from my point of view, I'm comfortable receiving any questions you feel like asking, medically speaking. Usually if I'm terse I'm just trying not to bore people!

[melanie.livejournal.com]

good grief. *winces for you*

i've never heard of pinched belly nerves like that before. i guess wherever you have soft squishy things wobbling around amongst hard, bony things, though, stuff can go wrong.

our bodies are simultaneously the most amazing and most ridiculous things.

[cjsmith.livejournal.com]

Yeah, the nerve bundles run through a channel in the soft tissue, close to the bone. I am unclear on exactly what forms this channel: connective tissue? musculature? It's possible for body fat to work its way in there, and the doctor thinks that is the type of pinching I have. Some women can lose 15 pounds and get rid of their hernia pain. I don't think I have fifteen to lose.

our bodies are simultaneously the most amazing and most ridiculous things.

They sure are!!

[firecat]

Best wishes for the relatively painfree part of your life to begin soonest.

[cjsmith.livejournal.com]

Thank you! :)

[kimatha.livejournal.com]

How does one get herniated nerve bundles?

[cjsmith.livejournal.com]

The most common way is apparently for body fat to work its way into the channel where the nerve is. (I am unclear on what forms this channel: connective tissue? musculature? I'm guessing at least some muscle, since fitness is a *negative*.)

So I could lose a lot of weight, and it might help. Some patients report dramatic decreases in nerve herniation pain when they lose 15 pounds. However, my doctor and I agree that I don't have fifteen to lose. Maybe five.

[lesliepear.livejournal.com]

Why only a partial hysterectomy?
Hope you can get some relief soon.

[cjsmith.livejournal.com]

'Cause it's easiest. Taking the whole uterus, cervix included, shortens the vaginal canal (since the uterus is embedded in one wall) and may change a person's sexual response. Without risking TMI here, I'll say that as long as I'm married to rfrench I don't want any less room in there. But they can take most of the uterus and leave me my cervix. I'll still have to get PAPs done, but no periods, woohoo.

[lesliepear.livejournal.com]

Makes sense. For some reason I thought a partial hysterectomy just took part of the uterus.

By the way, I'm going to ask about the Mirena based on your posts. I don't really have a birth control issue, but can't use the pill and would love to skip periods. (Age + prone to yeast infections makes the pill a bad choice).

[cjsmith.livejournal.com]

Yeah, there are medical definitions for "partial" and "whole" which don't make sense to me. Something weird like: "partial" doesn't take the ovaries, or something. I tend to get that wrong. So I use the word "partial" like a layman would, and I meant something where they just take most of the uterus.

Mirena seems to be really good for most of the women I've talked to who've used it. I've heard very few people gripe about it. Hopefully you have room for it. (I suppose if you had room for Alan...!) There's also something called, I think, NuvaRing, which dispenses hormones locally too. It's shaped like and is placed like the ring of a diaphragm. I think some women stop or slow bleeding on that too. Worth a look.

[lesliepear.livejournal.com]

I had room for Alan to fit -- but I had to have a c-section as he wasn't going to fit going out. (But I'm sure the mirena is smaller than an 8 lb baby!)

[cjsmith.livejournal.com]

It sure is smaller than even a leetle baby! Apparently insertion is less fun if you've never delivered vaginally, as the cervix is tighter. But it wasn't at all bad enough to be an obstacle if Mirena is what you want.

[wispfox.livejournal.com]

Wow! That sounds intensely unpleasant.

Having an odd wish that I could do something to help, when, well - that'd be pretty difficult! Many good wishes for getting something useful done about this _soon_!

[cjsmith.livejournal.com]

Yeah, I've actually been pretty bitter about it for a while. It's only in the last few years that I've realized most women don't have it this bad and it's just me who's broken. That in turn made me think it might be fixable!

So maybe I won't be a bitter old lady. ;-)

Thank you for the good wishes! :-)

[wispfox.livejournal.com]

It's only in the last few years that I've realized most women don't have it this bad and it's just me who's broken. That in turn made me think it might be fixable!

I'm glad you realized that! Because, yikes...

And good, on the maybe not being a bitter old lady!

[ericainohio.livejournal.com]

Wow, I'm sorry to hear that you've gone through all this for so long! Here's wishing you the best and hoping you find a solution to be pain-free soon.

[cjsmith.livejournal.com]

Thank you! I'm eligible for FMLA Marchish. *fingers crossed*

[vito-excalibur.livejournal.com]

Wow. Well, good luck, I hope they can fix it! What a shitty thing to have to deal with. You are remarkably whine-free.

[cjsmith.livejournal.com]

Thank you. I'm trying to avoid getting bitter about it all, which is sometimes easy and sometimes not. Fortunately, if I have lots of time and money (hahaha) it looks to be fixable.

[rampling.livejournal.com]

Ow, many sympathies on dealing with such ongoing pain. I'm finally pretty much "out of the woods" on my whole neck pain thing, and I'm so relieved. It must be so tough to go so long with such huge pain. *hugs* I hope the FMLA-enabled surgery helps a lot.

[cjsmith.livejournal.com]

I am SO glad your neck pain is getting better! Yikes but that was a long road.

(At least with the worst of mine, the first twenty-four years, I had breaks. Regular breaks are a godsend.)

[datagoddess.livejournal.com]

Here, I'll give you some of what I've got and you can get the hysterectomy paid for ;-)

Just kidding, I wouldn't wish this on anyone. But I hope you get relief one way or another soon!

[cjsmith.livejournal.com]

I understand completely. In some ways I almost wish I could take it from you...

Thanks. And you know my fingers are crossed for you, too, in a big way!

[genderfur.livejournal.com]

Thank you for sharing. My only comment was going to be, "Keep your cervix!" but it sounds like you already know about that.

A woman at worked whom I liked but didn't yet know well told me quietly that she'd be having a hysterectomy. I told her about leaving the cervix, even though I knew it would embarrass her a little, given that we didn't yet know each other well. And she didn't know about it, and she likes her sex life, and she thanked me for the info.

[cjsmith.livejournal.com]

I hope I wasn't oversharing. :)

Ayup, I knew, but thank you: it's good information! Keeping the cervix does mean the procedure can't be done through the vagina, which would be an awful lot shorter recovery time, but hey. I'll take the best answer over the quickest one.

[genderfur.livejournal.com]

Not oversharing. No.

And for anyone who might have thought so, you gave plenty of up-front warning. So overall, I think it was Information, but not Too Much of same.

[cjsmith.livejournal.com]

Thanks! :)

[lcohen]

that sounds intensively awful. i had an egg in one of my ovaries rupture once and i'm not likely to forget how painful that was--i can't imagine it going on and on. i hope that you are able to have your medical procedures done soon and in their entirety and that you have a successful recovery.

[cjsmith.livejournal.com]

Oh ow. I have no idea how bad that would be, but something tells me it would be baaaaaaaaaaaaad. Was that a thing requiring surgery?

[hitchhiker.livejournal.com]

ouch - that lends whole new levels of meaning to 'not fun at all'. hope they manage to do something helpful.

[cjsmith.livejournal.com]

Yeah, my big challenge (honestly) is to avoid getting bitter. I'm on the edge of that one. But yeah, my fingers are crossed for the future!

[partywhipple.livejournal.com]

You've had this post up for quite some time. Did you get the surgery?

Came here from tupelo's journal.

[cjsmith.livejournal.com]

Hi tupelo's friend!

I haven't had the surgery for a couple of reasons. My feet got worse, so they're top priority right now, and at the same time the cramps got quite a bit better. I have very light cramping maybe one day in ten. For now I'm willing to wait it out. Every so often my abdomen knots up and I swear to schedule the operation the next day... and the next day it's better and I wait. :-)

[partywhipple.livejournal.com]

Ah I can completely understand. Are you going to have surgery for your feet? i didn't read what the problem with them was.

[cjsmith.livejournal.com]

I did have surgery for my feet. It didn't work. The short story is that there's damage in there, cause unknown, solution unknown. I'm probably going to wind up with an electric scooter and a disabled placard.

I am doing my darndest to avoid getting bitter. I had really hoped to -- heck, I had assumed I would -- have a couple more decades of ability to walk. Maybe the Swim from Alcatraz would be a good shift of focus! :-)

[partywhipple.livejournal.com]

O.o

Youre going to swim the bay?

[cjsmith.livejournal.com]

I'm thinking about it. (Well, half the bay.) I'd have to train up, of course. But people without feet can do this swim. If I work hard, I believe I can too!