Loos talk

[j4]

Cross-posted from theladiesloos. I don't know how to do a proper x-post on LJ, so I'll just say that if you've read it there, you don't need to read it here.

I'm SO FED UP. Since the beginning of May I've had stomach cramps and pain/discomfort, like having trapped wind all the time. It comes and goes, it's usually grumbling away in the background, sometimes it's just a vague feeling of not-quite-right, other times (like right now) it's bad enough to make me just want to curl up in a ball and whimper. Even when it's not too bad it makes me feel bloated and miserable and utterly unsexy (it's really hard to feel attractive when you're constantly farting like an old dog).

I've been to the doctor a couple of times. The answer, basically, is "we've no idea what's wrong with you". He's done various tests and they've all come back normal. I've got an appointment booked for next Thursday, and this morning I was tempted to try to ring up and get a sooner appointment, but I decided there was no point -- the condition isn't going to go away before then, but it's unlikely to worsen any more than this before then, and besides, they're not going to be able to get me an appointment outside work hours, and I can't call in sick with trapped wind, for god's sake. It never seems like it's quite bad enough at any one time to justify claiming that I'm too ill to go to work. It just goes on and on and on, and it wears me out.

In the meantime, nothing seems to make any difference. It doesn't seem to matter what I eat, or when I eat, or if I eat; indigestion remedies do nothing, the stuff the doctor prescribed the last two times did nothing; it doesn't seem to make any difference whether I stand or sit or lie down. There's nothing I can do, and I hate being helpless like this, I just want to know what it is and whether it's finite and whether there's anything I can do to cure it or even alleviate it. If somebody said "Right, you're allergic to everything except rice and water," then even that would be better; sure, I'd never be able to enjoy eating again, but at least I'd know that I could do something.

In addition to the stomach pains I'm getting worse and worse moodswings and attacks of depression. It's like something just bubbling up inside, there doesn't seem to be any way to stop it, I just start feeling nervy and angry and queasy and then something somebody says will trigger me and I'll just be spiralling down into awfulness. I don't even know how to explain it when I'm not actually in that state, it's just like everything burning up inside me, like a red mist, and I end up crying and shouting and being angry and violent and miserable. It's more like a fit or something than a 'moodswing'.

The moodswings seem to be coming in cycles of about 2 weeks, in line with the cycle of my Pill. I've been on the Pill for 10+ years (on this particular one for most of that time), and I've suffered from depression for all of that time (and then some), but it's only quite recently that my life's been settled enough in other ways for me to be able to observe the pattern like that. And the depression started before I went on the Pill, so it'd never really occurred to me that they might be connected. As for the stomach problems in relation to the Pill -- I've always had wind and dodgy bowels when I have my period, but judging from recent conversations on here that seems to be quite normal; but this recent stomach thing is more constant and seemed to come on very suddenly back in May -- so it seems unlikely that it's a result of something I've been taking for this long. I'd be happy to come off the Pill, less happy to try changing to different Pills as I don't want to spend the next howevermany months changing from Pill to Pill and never being sure whether it's the change or the type of Pill or other factors altogether that are making a difference (if any difference is made).

I want to tell the doctor all this, but every time I go to the doc with any physical symptom he asks if I'm depressed, and I know that as soon as I say the magic word "depression" all the physical symptoms will immediately be written off as the hypochondriac imaginings of a neurotic woman, and if I refuse to take YET MORE fucking antidepressants it'll be considered evidence that I "just don't want to get better". (Despite the fact that EVERY TIME I've taken ADs they've not helped at all and given me bad side-effects.)

There just seem to be too many factors altogether, it's impossible to do any sort of controlled experiment, and it's understandable that the doctor just looks at this mess and thinks "Hmm, obviously just a hypochondriac, just wants attention." But I'm not making it up, and I'd be quite happy to never have any attention again from the medical profession as a whole, and I do want to fix it, but I don't know how to untangle it all. I hate it. I want to outsource my entire digestive/reproductive system to Elbonia while they sort out what's wrong with it.

Comments

[atreic.livejournal.com]

I never used to get PMT before I was on the pill, and when I went on Ovranette I would get moodswings right at the end of the packet, for about the last three days I was taking pills. They weren't too bad (I just tended to burst into floods of tears over little things) so I just kept taking it, until eventually I went on Implanon and the "PMT", or whatever it was, went away as the M did...

*hugs*

[simonb.livejournal.com]

Your description of trapped wind is very familiar to me - its basically a symtom of IBS (http://en.wikipedia.org/wiki/Ibs). There are times when I've wanted to have a small valve installed in my side so I could bleed off the trapped wind and reduce the pain-related pressure in my gut.

I'm surprised that your GP hasn't suggested doing something like an exclusion diet to rule out food allergies or similar though - its normally the first port of call for western medicine. Personally I'd look at changing GPs if you feel that your current GP is not taking you seriously.

One problem I've encountered is that whilst western-style medicine is very good with what is best described as critical care, it really falls down when it comes to systemic problems because the human body is an incredibly complex organism and we're nowhere even close to understanding how all of it works as an entire system yet.

WRT the LJ cross posting - AFAIAA its not possible to do a cross-post in the Usenet sense within LJ. Its one of the failings of most web-based discussion systems IME. Implementing a cross-post facility would potentially be tricky as well given security related stuff, tracking of comments, etc.

[nomme.livejournal.com]

Your symtoms sound similar to what my girl friend went through. She was back and forth to the doctors like a yo-yo. It took ages to discover what was wrong with her. It turned out to be an ovarian cyst.
I hope this isn't what you have and I dont wish to worry you unnecessarily, but if you can I would suggest you attempt to get a referal for an ultrasound scan.

[aldabra]

Mmm. I had ovarian cysts after years on the pill. Upside is that it seems easy enough to deal with once they diagnose it.

Janet, you're SURE you're not pregnant?

[j4.livejournal.com]

I really don't see how it can be diet-related. I've not made any changes to my diet, the stomach problems (at the level they're at now) came on suddenly and the only things I'd had to eat/drink recently were things I'd been having all my life; also, since they've started, it really doesn't seem to make any difference what I eat or even whether I eat.

I did ask my GP though, last time, and he agreed that from what I'd told him of the symptoms it was very unlikely that it was diet-related. He hasn't even mentioned IBS, either, despite the fact that it seems to be a very fashionable diagnosis at the moment. AIUI, though, IBS is a fairly vague blanket term for lots of symptoms with no other explanation, so perhaps the GP wants to try other things before just effectively saying "Yes, you've got a dodgy stomach that we can't cure, we can give it a fancy name if you like"?

And, to be honest, I'm with him on that. I really do want to try everything else possible before just giving in to the idea that I'll never be able to eat normally again.

[j4.livejournal.com]

*sigh* I've been on the Pill for EVER. I haven't missed a Pill for aeons. I haven't missed a period (though yes I know they're not proper periods, and I've been told you can have periods all the way through pregnancy). I've been having all these symptoms for 4 months now, and my stomach has got no bigger -- if anything, I've lost weight. This really doesn't sound like pregnancy to me. I don't want to have to spend a tenner a month on a test just to convince everybody else I'm not pregnant every time the symptoms have gone on for another month.

[karen2205]

Trapped wind sounds very much like an IBS symptom to me - I get it combined with continual farting. My own strategies for dealing with it (it being IBS as a whole - I don't get the trapped wind thing too often) have been:

(a) writing down exactly what I'm eating & subsequent bowel motions to attempt to work out what causes particular symptoms

(b) trying to avoid dairy. I've switched to goat's cheese. I'm not doing particularly well at this - it's very hard to avoid dairy 'cos lots of things you wouldn't expect contain it. But I'm not at all sure that dairy is causing my problems, having attempted to avoid it for a while, so I'm going back to eating a bit of it.

(c) kind of related to the above - trying to find out if I'm lactose intolerant, by drinking a pint of milk and seeing what happened. There are proper tests for this so it's something worth suggesting to your GP.

(d) wheat is the other thing thought to cause IBSy problems. I will get round to trying to avoid wheat for a while to see if that makes a difference. The same is true of eggs.

People who find they get mood swings from the pill often get on better with patches or a vaginal ring because they've got lower doses of hormones. An IUS/IUD may also be an option. I get on very well with Cerazette (desogestrel) which is a progesterone only pill.

Mood swings every two weeks and anti-depressants not working/giving you side effects makes me think that you've not got straight forward depression (I'm not saying that you're not depressed - just that it's not the 'normal' sort of depression). Have a google for 'rapid cycling' - obviously I'm not a doctor, but you might end up finding some label that matches your own symptoms that you can take to your GP.

[juliet]

I got diagnosed with IBS a few years ago, suffering symptoms very similar to what you describe. They prescribed me DRUGS, which I cannot remember the name of (think it began with a C), to take 3 x day. Did the trick. After a couple of months I came off them again (on GP's advice, as apparently sometimes once you've got it settled down it'll stay settled down), & it was pretty much OK again. I get the odd attack these days but nothing *like* what I had back then (agonising in-tears pain, most of the time, & an intimate knowledge of every publicly accessible toilet in Oxford :-/ ).

Aloe vera capsules can also be helpful.

I've also found the following sort-of massage to help: imagine an octagon on your stomach, with the bottom edge running just along the top of yr pubic bone, the top one along your diaphragm. Starting at the diagonal octagon-edge roughly where your appendix is (on the right), press your fingers into it quite firmly & hold for a few secs. Then move round one edge clockwise, & repeat. Go all the way round twice - basically, you're following the line of your colon round, & trying to encourage the trapped wind to come out (you may be able to feel it travelling round, in fact). This does tend to lead to farting a lot, but in a more controlled way, & it reduces the pain.

[aldabra]

OK, just checking. (Though I don't think I gained much weight in the early months; it all seemed to go on very suddenly towards the end.) The wind didn't sound diagnostic, but the moodiness did 8-)

I felt much better when I came off the pill; I think EVER is long enough to be on it. I was delighted to be on it when I was twenty but I wouldn't want to start again now. But then, [analysis of comparable faff deleted].

[ex-humanfema327.livejournal.com]

sounds like it could be food allergies.. i know you want to keep eating whatever you want but it might not be as difficult as you think. get tested in holland and barrett or get someone out the yellow pages. i dont even want to eat chocolate any more. (lie.)

[simonb.livejournal.com]

FWIW I was fine with wheat for years and then I suddenly started having problems with my digestive tract back in '95. It took until around 2002 for me to work out that it was wheat which was a cause of it. I should probably note that I have to ensure that I eat food at regular intervals; if I don't then I can easily end up with trapped wind.

Its certainly possible that its not diet related and is something else. I have to wonder if something has happened to upset the balance of the bacteria which live in your gut - if that goes out of kilter its possible for lots of wind to be produced. You could try some of those friendly-bacteria drinks or eating natural live yoghut for a little bit to see if that helps at all.

Other options are to keep a food diary and see if there is any pattern to the symptoms. At worst you could do an exclusion diet to really rule out food, but they aren't easy to do.

As to not being able to eat normally again, I'm with you on that one. Its a right pain to have to deal with and its one of the main reasons I went back to eating meat again - its made a massive difference to how I view food. Hell, I'm started to play with cooking again which is a nice change from the "Hate food" thoughts I was having only a few months ago.

[bopeepsheep.livejournal.com]

I don't suppose it helps but I'm in a similar position, pain all the time and in very similar ways. I have tested a couple of times but probably have more reason to do so because I have no cycle whatsoever (post-Depo/breastfeeding), no hormonal contraception, and wouldn't have a clue if I got pregnant other than obvious physical symptoms. I know you're fed up with hearing this as a hypothesis, and I sympathise, but I can see why it keeps coming up as a theme - I have wondered several times if I really am, but the tests keep saying no. And you'd think I would know what it felt like... (this is a poke at myself, not you)

Anyway. Have you tried exclusion diets yet? karen2205 has written more or less what I would on that front. So far giving up/cutting down on wheat and dairy has made no difference to me, but they made a huge difference to my mum. Brassicas and fizzy drinks seem to make things worse for me, as does cooked cheese (but not cheese from the fridge). Gallbladder pain can feel like you're describing, too, which is more a matter of cutting out fat as much as possible.

[hairyears.livejournal.com]

Change doctors. They can't all be crap, although the evidence does seem to be stacking up.

Bad guts can make life a misery: if julietk has benefited from an effective treatment, the information is well worth tracking down. IBS and general gut problems do not seem to be treated very well in this country; that's annoying because they are all potentially serious - even trapped wind - and they are all treatable. Albeit not always effectively.

BTW, trapped wind is a very, very bad thing when practicing the rolling exercises in an Aikido dojo.

[filecoreinuse.livejournal.com]

I was also going to make an IBS post. Have you tried doing a week of the 'usual supspects' diet-wise and seeing if that helps? E.g. a week of no wheat or whatever.

[j4.livejournal.com]

I haven't tried exclusion diets -- partly because I've not managed to find two months that I can put aside when I don't mind not being able to go out at all; and partly because I don't want to make myself sensitive to stuff (thereby adding to the problem) by cutting it out of my diet.

Gallbladder is one thing I'd thought of -- my dad and his mum both had gallbladder problems (my dad had to have his taken out when he was in his late 30s) and with my dad he thought for ages it was an allergy to eggs, though it seemed to be a sort of inconsistent allergy. Problem is the doctor won't just test for that on request, and he doesn't seem to think it's much of a possibility. :-( I haven't tried cutting out all fat, but high-fat certainly meals don't seem to make it noticeably worse...

[gnimmel.livejournal.com]

I came off the pill (I'm now using a diaphragm, so no hormones whatsoever) and found it helped my mental state quite a lot, even though I'd been on the pill for long enough before I started feeling mentally grotty that it seems unlikely it was the main cause. So it might be worth a try.

[j4.livejournal.com]

I'm not doing particularly well at this - it's very hard to avoid dairy 'cos lots of things you wouldn't expect contain it.

It's much better now than it used to be -- for a start, you can get dairy-free alternatives in supermarkets. I was lactose-allergic when I was tiny, & thus on a lactose-free diet for the first 12 years or so of my life. After that I decided to try the dairy stuff again & was apparently fine. I suppose this could be a very belated recurrence of the dairy problems...

patches or a vaginal ring [...] an IUS/IUD

Arghh. No, no, no, absolutely no to having great lumps of stuff stuck in me. I feel sick and dizzy and tearful from putting a tampon in. And just hearing friends' accounts of having coils fitted has made me feel queasy and faint.

just that it's not the 'normal' sort of depression

There's no "normal" sort of depression. It's basically a blanket term for lots of different symptoms, with lots of different (possible) causes. ADs certainly don't work for everybody, and they give most people some side-effects.

I also don't have any sort of mania inbetween the mood crashes, which sort of suggests that bipolar disorder ("rapid cycling" or otherwise) wouldn't be a very helpful label.

[juliet]

No, no, no, absolutely no to having great lumps of stuff stuck in me.

Does that apply to things in the arm as well? Because the implant might be one option, if not - that's lower-dose as well (& progesterone-only).

BTW, this is the NHS guidance to doctors on IBS, which if you've not already seen it may be helpful. I am pretty sure that mebeverine (down the bottom under 'anti-spasmodics') was what I had (so, er, not beginning with a C, then :-) ). They also mention peppermint oil as an OTC remedy - try peppermint tea of a morning?

[j4.livejournal.com]

I'd be fine with the implant from a having-things-stuck-in-me point of view, but at the end of the day I suspect it's effectively just like trying a different pill (it's the same hormones, innit?) and it's harder to stop (I assume you can't take it out yourself!). :-/

Seen the NHS thing, but thanks for the confirmation of what you were prescribed. I'm always a bit wary of trying to self-prescribe because I know the doctors (quite reasonably!) don't like it, but I'll bear it in mind.

In the meantime I will drink more peppermint tea. At least it tastes nice, even if it (like everything else) makes no difference...

[vatine]

I had similar symptoms (with added diarrhoea (sp?)) as primary symptoms when my lactose intolerance went into full swing. Lactose-avoidance requires lots of label-reading and annoyingly many medications use lactose as a filler in pills.

My darling wife have similar symptoms when she ingests gluten, that might (possibly) be worth trying. That was a semi-quick on-set in her late twenties (as in "ramped up over about 6 months").

Other than that, all I can say is "listen to simonb".

[juliet]

Well, it's progesterone-only rather than oestrogen & progesterone (unless you're already on the mini-pill, which is progesterone-only as well), & it's significantly lower-dose than any pill can be, because of going straight into the bloodstream. But yeah, you have to go back to the clinic/GP/whatever to get it taken out if it doesn't work out.

With the moods & the stomach (& the fact that they're almost certainly interconnected in *some* way - feeling icky not good for mood even in the better bits of your mood-cycle, stress etc bad for stomachs), if I were you I'd be looking at coming off the Pill altogether for a few months to see what effect that has. I nearly did that myself (well, didn't get my implant replaced) recently, but in the end the doctor & I decided to see if having a new implant would fix the problems instead. Which it seems it may have done, touch wood.

[nods re self-prescribing] OOI, what did you get prescribed the last couple of times, do you remember? If it/they was/were anti-spasmodics, then that avenue's maybe been tried already...

[extends sympathy if desired]

[j4.livejournal.com]

I was lactose-intolerant when I was a baby, and was on a lactose-free diet for the first 12 years or so of my life. (I know all about the label-reading -- by the age of 3 I could read ingredients and tell whether something was 'safe' or not.) As a teenager I decided to try the dairy stuff again & see if it still made me ill, and as far as I could tell it no longer had any effects. I suppose it's possible that it's come back, but the allergy specialists who tested & diagnosed me when I was tiny apparently said that I'd either have it for life or grow out of it. (I say "apparently" because I was 4 months old at the time so only have my parents' word for this.)

I really don't want to try random shot-in-the-dark dietary modifications where I cut out anything that might conceivably cause an allergy (and risk creating a sensitivity to the foods in question where none previously existed). And if I do go down the exclusion diets route, I'd prefer it to be on the advice of somebody with medical/nutritional training rather than somebody who has major psychological problems with the whole area of food and eating.

[j4.livejournal.com]

Change doctors. They can't all be crap, although the evidence does seem to be stacking up.

This one's actually better than most that I've seen. :-/ (Mind you the lowest-point benchmark is still the female doctor who, when I went to her with chronic and fairly serious depression, said "Well, you're a woman, and you're a finalist, so obviously you're going to be feeling a bit under the weather." She didn't seem interested in the fact that I had an 8-year history of depression and a 21-year history of femaleness.)

The practice I'm currently with actually has a sensible appointments policy, and receptionists who don't breathe fire, both of which are a refreshing change. So I'm really reluctant to change again unless they do anything actively bad (as opposed to just-a-bit-dozy).

[j4.livejournal.com]

I was thinking of trying coming off the Pill for a few months (though I'm dreading the possibility of going back to 9-day-long periods with anxiety and panic attacks) but if I'm going to do that I'd rather do it with medical guidance -- or at least with some reassurance from the doc that it's unlikely to make anything worse. Or at least awareness of it so that it's on my medical records, frankly, because I'm sick of having to tell doctors the same things over and over again.

Last time I got prescribed super-strength Gaviscon (which I think is just for heartburn/indigestion); the time before that it was some pills that according to the leaflet were supposed to be for Reflux Syndrome. (Can't remember what they were called, I'm afraid.)

The Gaviscon is bright pink, chock-full of sweeteners, and tastes like sorbitol-and-vomit. Blehhhhhh.

[rmc28]

Given all the comments so far, I think I'd suggest two things:

1. Stop taking the pill, for at least three months, maybe six. I remember that when I stopped taking mine I had a month or so of noticeable changes (some spottiness, some emotional reactions different, both more and less intense, than expected), and then everything just went on as normal.

2. Ask GP to refer you to a dietician or whatever the word is these days. Point out it's been since May, they've tried drugs, and if you're going to isolate a food allergy, best to do it with someone who knows what they're talking about.

Can you take a printout with you of some of what you've said above, summarising the situation? I did this in preparation to see my GP about having Mirena removed, and if nothing else, it helped me to remember everything I wanted to say, and if she had been unhelpful, I could have just handed it to her and said "read that, then tell me you won't".