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.

[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.

[firecat]

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

[kimatha.livejournal.com]

How does one get herniated nerve bundles?

[lesliepear.livejournal.com]

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

[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_!

[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.

[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.

[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!

[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.

[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.

[hitchhiker.livejournal.com]

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

[partywhipple.livejournal.com]

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

Came here from tupelo's journal.