There is no pain, you are receding...

[logansrogue]

Okay, so this is the letter I wrote to my endo support group today:

Well, I've had quite a week. First of all, the pain has been increasing lately in my pelvis. For those that are new, I'll just briefly describe my endo journey so far. 3 laparoscopies, 2 where they excised endo (because the gyno didn't believe I had it in the first place and didn't prepare for it). Tried Levlen, Microgynon, Mirena and something else that slips my mind. None of these worked well with me. Mirena was particularly horrible. Have been surviving on Ponstan and Codeine, visiting pain management to help with the pain that I've been told is neuropathic. I no longer think it is, especially due to the results of an ultrasound I had this week.

The ultrasound was going swimmingly. Everything was normal. A good level of endometrium lining inside a normal looking retroverted uterus. Right ovary a nice, oval, healthy looking thing with a row of beautifully distinct follicles. I was showed the recruited follicle for my next ovulation. Then the right ovary.

There was a dark vascular patch on the top of it. It is measured at 11 x 19 x 15 mm. They're fairly sure it's endo. I was on day 9 of my cycle, so it wasn't likely to be fluid from a burst follicle. Though if I get my period super early, maybe it was. :-P

I went outside the ultrasound place, 200 dollars out of pocket (and only having 125 dollars on me, which I promptly gave the lady and promised I'd be back tomorrow once the government had paid me my paltry disability payment). A couple walked past with their toddler son, all blond hair and big blue eyes. I promptly burst into tears and sobbed my heart out. My ovaries had been in perfect condition until now. I'm looking down the barrel of having to have a baby in difficult circumstances, but I'm bound and determined that I will have one, some way, some how, no matter how hard it is. I know I am meant to be a mother.

I saw the doctor today, and we talked about coping plans and me seeing my gynaecologist again. To be honest, I'm not too crazy about my current gyno, but he seems a good sort at heart and truly interested in helping me cope with my problems. I hope he has some tangible and reasonable options for me when I see him. Until then, the doctor has given me a new BCP to try - the pill, something beginning with Q. I forget the name right now. It's a fairly new one, with a *lot* of stages!!

She also listened to me when I told her that Dolased (10.5mg Codeine phosphate, 5.1mg Doxylamine succinate, 500mg paracetamol) wasn't cutting the mustard anymore as a pain killer, that it helped for two isolated patches of the day, and then the rest of the day I was basically boned. She gave me a prescription for slow-release oxycontin, 10mg. I am absolutely terrified of taking it. I've read the side effects and I've also heard a lot about how addictive this stuff can be. I'd rather take more codeine than get hooked on something like oxy. Has anyone here ever taken it? Is it effective, or even worth the crappy withdrawal symptoms?

Anyway, the fact that the doctor listened to me about the pain and everything else and gave me new things to try, and listened to my problems and was truly concerned for my well-being and respectful of me - I burst into tears. Happy, grateful tears.

"I don't know why I'm crying like this," I'd said to her, "I just can't tell you what I've been through. It's so good to finally have a doctor that listens to me."

Seriously, if you're in the Perth area, my doctor is an absolute angel. I have never, ever felt stupid for coming to her with symptoms that bother me. Ever.

Half my stress and concern and the reason I even brought pain up with her was because my pain management doctor had given up on me, it seems. His notes were, "Given [the medication for neuropathic pain], keep taking, continue with psychological care." And I blew my friggin' top.

I was stomping around the kitchen, practically shaking with anger, ranting at my mother, "I'VE BEEN THROUGH RAPE TRAUMA! I AM NOT HYSTERICAL! I AM IN REAL PAIN, DAMN IT!" Hence, why I cried when my doctor took me at my word. The other thing was that the pain management doctor didn't even bother to schedule a follow up appointment to see if I was all right on the new pills. The new pills had a high incidence of making people suicidal. It was such a frightening possibility that I didn't end up taking it because a) I had my doubts that it was neuropathic pain (rightfully so) and b) the rape trauma, and past depression issues.

In other health news, I am going to get the final verdict on whether I have gluten intolerance or not (doesn't matter what the verdict actually is, I'm not eating it again, too much pain, bloating and weight gain!). I've had two gastroscopies in as many months, and I tell you, those weeks of gorging oneself on wheat products is NOT FUN.

So, a huge essay later, now you're all caught up. :-P My love to everyone on list, and I hope you're all doing okay.

Hugs, love and painfree days,
Nancy.

Comments

[wiccarowan.livejournal.com]

As far as getting pregnant is concerned...

I have endo but didn't get diagnosed until 2 years ago (age 36) having been fobbed off with all sorts of bullshit along the "it's just heavy periods, love, deal with it" line for decades. 1st lap took twice as long as they'd said because the doctor had expected it to be far better in there than it turned out. Then followed 3 months of horrible induced menopause and another lap, joy joy joy.

Anyway, when I was 32 I managed to get pregnant and had my little one when I was 33. I'd been on various contraceptive pills on and off since the age of 16 - it took 18 months between coming off the last pill and getting pregnant. This on top of the fact that my then-husband drank & smoked heavily so difficulties were as much him as me.

It's possible to get pregnant despite the endo. I am, apparently, a bit of a disaster area around the reproductive organs but the evidence that I'm fertile is currently snoring his head off under his dinosaur duvet. Don't give up.

[kaberett.livejournal.com]

a) DINOSAUR DUVET
b) I am so so sorry that doctors over there are so crap about the induced menopause thing :-( I get given HRT with mine, and it is marvellous.

logansrogue - have I pointed you at the list of things-I've-tried? Would you be interested? They are not all (possibly even mostly not) painkillers.

[logansrogue.livejournal.com]

Absolutely! Shared knowledge is vital with dealing with this sort of thing, I've found.

[kaberett.livejournal.com]

Here you go.

[poeticalpanther.livejournal.com]

Hi wonderful woman,

yes, I've been on those very same 10mg slow-release oxy for...let's see, seven or eight years now?

I currently take 10mg SR 4/day, 5mg + 375 paracetamol 3/day, and various other non-opiates.

The main difficulty I experience is constipation, which is brutal, and often means I spend a day every few weeks (ahem) working out the bugs, as it were. That's quite unpleasant.

But I also stop taking them for at least one week every couple of years, to see how I'm doing on the terrifying addiction front. And y'know what? NOTHING. No physical, no emotional, no psychological craving.

See, when you take 'em for real pain like you and I have, it takes almost no time for you to lose any ability to gain any kind of euphoria out of them. It's only taking them when you don't have pain that brings that kind of issue.

Second, in the end, I don't give a shit if I do get addicted to them. I mean, I can't go without air or water, either, and the withdrawal symptoms for both are brutal. So why don't I get shit for those addictions? Oh, right, because everybody has them. And if not everyone has it, well, then, obviously it's a bad and scary thing, and that people misuse them, well, that obviously means that people like you and I must be bad people who are faking it to get the easy doctor-given high, right?

But no. Not so.

If they're recommending them, I say take them. Worry about the fucking addiction when the pain goes away, if it ever does (and FSM preserve me, how I hope it does for both of us).

Sorry for the profanity-laced rant here, this isn't mad at you, of course, it's the stupidity of small-minded people who have never lived with pain like we do, every bloody day, that annoys the shit out of me.

If you need 'em, chick, take the pills. Don't worry about the petty morality of the toffee-nosed types.

[poeticalpanther.livejournal.com]

Oh, and in those seven or eight years? I've had three (sorta) dosage increases, total. When I first started, I was taking 3x 10 SR, and 2x 5mg + para, /day. I added a 5mg about five years ago, and another 5mg after that, followed this year by a reduction to 3 5mg and increase to 4x 10.

Without them, I'd be completely unable to work, even as a translator at home. I'd basically be bedridden. With them (and with taking a bunch), I can even manage to lumber around a soccer field for a couple of hours once a week. No comparison to quality-of-life. Without them, I'm so nauseous I can go days without eating, just from the pain. With them, I can keep myself alive.

No contest. If they would work for you, give them a shot. If they don't, THEN worry about it.

[logansrogue.livejournal.com]

Before I started taking regular painkillers (mefenamic acid combined with an opiate, in my case, codeine) I couldn't do *a thing*. At all. I had three hours a day tops where I was able to do stuff. With the painkillers I can get shit done, it just seems that these days the endo is worse and I need to cover the pain better.

The doctors are talking about a possible laproscopy. More scars on my belly, YAY. Well, I'd be happy with scars if it meant I had reduced pain for a while.

[kaberett.livejournal.com]

It's not surprising that the pain keeps getting worse: with the drugs you're just masking the symptoms, not stopping the stuff growing. :-/

[logansrogue.livejournal.com]

Well, there's a good reason for that - I couldn't take the hormone pills they were giving me, and then they just gave up on me. I tried three different types of BCPs, and Mirena. All made me feel like hell on earth. Next period, I'll be trying another pill. So believe me, it's not that I'm not trying things, it's that things that are supposed to help keep making me feel worse.

[kaberett.livejournal.com]

Urgh, you too? :-( (They only got me to try one type of BCP and Mirena; but then they couldn't give me oestrogen because migraines...). I'm sorry for suggesting that you weren't trying things; good luck with the next pill on the list.

[logansrogue.livejournal.com]

Yeah, it's super frustrating. It's why I've had so many laps in such a short time. Three in five years. I also get migraines, so I have to be careful about what I take. The Qlaira they've put me on might be an issue with that, but I guess I'll find out.

Oh hey, it's cool. I figure you're assuming the worst of my doctors, not of me. And having experience in the health system as I do, I don't blame you!

[kaberett.livejournal.com]

I'd be really interested to know what you think of that - it's something my consultant (whom I generally trust!) has also mentioned as an option.

[logansrogue.livejournal.com]

My doctor was bringing up Nuvaring, but I was all, "Dude, no, you lose hair with that thing and I have thin enough hair as it is." I'll probably write about it as I try it on here. :)

[logansrogue.livejournal.com]

See, I've heard tell of folks talking about how addicted they are to what I'm on now, which is codeine. And honestly, yeah, I get quite a pleasant buzz off of them. But I also take a break if I'm feeling like I have too much in my system. Other than being slightly groggy and blah the next day, the withdrawal symptoms for me are negligent. So I figured on the way home from the doc's that the oxy will probably do the same thing. I hope that's how it goes. Can't say much more, cat is now currently sitting right up near my fce on my decolletage!!

[poeticalpanther.livejournal.com]

I did forget the other side effects I hate:

1) sleeping pills don't work on me, at all. Like, doses that would kill many smaller humans, don't even make me drowsy. I think the receptors are similar, and may well simply be blocked.

2) OXY ITCH! I fucking hate oxy itch. I should post a picture of my shins just now, with my alluring wounds from the nights where I've scratched my poor shins bloody in my sleep. Thankfully, it's one of those things that only hits when I'm at high (for me) dosages. If I'm on my usual maintenance dose, this one hardly ever happens. Ever see heroin addicts scratching their forearms and shins? That's oxy itch. I get it a day or two after I play soccer, because of the elevated dosage I use to get through the games.

My experience with the SR, btw, is that they claim it's good for 12 hours. Believe this like you believe 1 Advil could cure anything ever. I find that 8 hours is a fair guess for how long they last, 6 if it's a bad one.

[logansrogue.livejournal.com]

1) I don't take sleeping pills. I find opiates usually send me off when I take them anyhoodles. And I take them after dinner, so...

2) Ah, I've had that when I've had a day full of codeine. I remember having terrible itches when I was on pethadine. I was so high I kept scratching my face. I left the hospital with little scratches on my cheeks. I only get slight itching with codeine, though. But it won't be a rude surprise to me. I'm an opiate veteran.

Huge thanks for your feedback on this, btw. Whenever I look online for stuff about oxy, all I read is horror stories. I needed to hear the good side so I could balance up the risks and the benefits properly.

[poeticalpanther.livejournal.com]

And I'm not saying they can't be addictive - it could be I'm just not physiologically made for that addiction, I don't know. Absolutely there are people who say they are, and I've no reason to disbelieve.

I just say that the addiction doesn't matter, when the thing you're addicted to is necessary for life. We don't call out diabetics for taking insulin, though they'd have some pretty dire results without it.

Sorry, hon, don't mean to wall-of-text you here. It's obviously a tender spot. :)

[logansrogue.livejournal.com]

No no, I feel you so much on this one. I've had conversations with people I love (Family, boyfriend) and they're all worried about me taking painkillers all the time. I get to the point where I cry in frustration, "What else am I supposed to do? What kind of life am I living if I can't DO anything other than sit around in agony all the time?!"

I did get addicted to codeine at one point, but that was mismanagement rather than the drug being bad. It was my first year or two on ongoing pain meds and you know when you're first in pain, you take it and think of it like "This med will take ALL the pain away. When any pain comes back, take MORE." And that ended up with me taking 4 doses a day and being an absolute space-cake all day. Then I had a lapro and WOW getting off that dose was HARD. Next time around, I spaced it out and toughed out some levels of pain. So with that experience, I might be susceptible to addiction, though my body kinda stops me before that happens. I couldn't get past 80mg a day of codeine because it was making me ill. Hell, I'd go down to one dose a day, or skip a day, due to the skeezy feelings I'd get from all the opiate in my bloodstream.

[likebunnies.livejournal.com]

Well, you know my story. Endo since I was 12 or 13. First surgery at 17. Second at 18 or 19. Several years of birth control all the time month after month. Pain everywhere blah blah blah. Still in mother effing pain even though I'm approaching peri-menopause. My one ovary is usually missing when they do any scans so they can't even tell what kind of shape it's in.

AND you know about Damien. He's not supposed to exist yet he does. So, my lovely, lovely friend, do not panic about the babies. I have more friends who never knew they had a problem with anything suffer from infertility than it seems I've had friends with endo suffering from it. *hugs*

[http://users.livejournal.com/lemmings_/]

I honestly don't even know what to say. It makes me upset that you are always in this kind of pain. I think you deal with it bravely and I hope that there is a solution around the corner for you. This doctor sounds like a good place to start. I live in Perth too so is be interested to see who she is. Take care of yourself.

[transcendancing.livejournal.com]

Just a post to pass on some *love*

I think lovecraftienne makes a whole lot of sense.

[melalucci.livejournal.com]

::hugs:: Do what you need to do to feel better. :)

[haute-kitten.livejournal.com]

i had a woman working with me once and she had the endo like you and suffered it for 20 years. She managed to have children, it is possible, you just have to force your doctor to help you. her daughter is now 16. she had all of her womb removed, but said if they leave one cm it will grow again, which happened to her.

[greteldragon.livejournal.com]

*hugs*

I'm sorry this is happening to you.

As an FYI though neuropathic pain doesn't mean you're making it up, it means your nerves are fucking around. It's pretty normal to happen with chronic pain.

It's normally treated with pysch and varying neuropathic pain meds. Psych because it's a cycle thing. Stress/depression tends to flare the nerves up then make the pain worse, making the stress/depression worse etc....

So it's not the pain management trying to dismiss you! And also if you're really worried about the side-effects of what you've been prescribed, tell them you aren't comfortable with the side-effects. God knows my meds have been changed all over to place to find something that worked well for pain and left me relatively functional.

Hope things get better, and this helps.

[asweetdownfall.livejournal.com]

<3 You're amazing, Nance.