u/Chaotic-Menace

Been told no food or drink other than sips of water, I get quite a dry mouth, wondering if anyone knows is there a maximum of water before it's an issue? Like, if I have 375ml water over the six hours is that likely to be okay?

Unhelped by period starting today so resultant extra fluid loss and pain (which worsens the dry mouth). Trying to minimise painkillers as the ones I'm on can cause constipation which I gather wouldn't be helpful...

Right at the start of the six hour fasting time and not drinking water for that long feels insurmountable with the pain - dry mouth on its own I might tolerate but whilst this uncomfortable...

Normally I need morphine. Had tried buscopan before on a friend's suggestion with no luck, but this time tried again because of other stomach/gut symptoms, which meant I started taking it the day before my period which I think made a difference cause it seems to be diminishing the cramps? Like, a lot? The hell? They're not fully gone, and my uterus still feels uncomfortable (like swollen, pressure, cervix is sore) but like thus far I'm not needing the painkillers? Only a couple hours in but it was starting to cramp this morning and when I took the first dose of buscopan it seems to have calmed it tf down? Realise it may not last but also wtf... Why didn't the doctors suggest this before sticking me on increasingly strong painkillers?

ALSO Is this an endo thing or a normal period thing? Like... Has the pain just been my uterus overcontracting this whole time? If this works then like, cool but also now gaslighting myself a bit?

(To clarify, have established possible endo based on symptoms and thickened uterosacral lining but any operation to investigate still probably like a year away. Got a gyno appointment soon to talk about interim options. Feel like there may be more they should be looking at before cutting me open? Are there other things that might be causing the intense pain and gut issues? Is it possible that I don't have this? Am like 50/50 between scared of being dismissed without any diagnosis of what causes it all, and kinda hopeful for if I have something manageable without all that?)

So I might have a gallbladder issue with atypical symptoms (the pain is in my upper back, shoulderblade area, confirmed by physio not muscularskeletal).

I'd noticed the pain was at its worst (like, requiring codeine to function) just before my period so was suspicious of this as a possible diagnosis, but am now informed that hormones can indeed affect gallbladder issues, and that birth control could make it worse if it is that... Which is something of an issue as I also might have endometriosis and they're likely to try to put me on some manner of hormones, which apparently could worsen the gallbladder if it is that... (Have tried a number of birth controls and not been able to stay on them cause they cause such bad mental health issues, so idk if they'll have options that come before medical menopause with add back hormones or not...).

Anyone got experience or solid info on this? Cause I have an ultrasound for gallbladder just under a week before a gyno appointment so suspect I'll not have results in time to like... Make informed decisions 🤦‍♂️😭

But also depending on how much damage an angry gallbladder can wreak over two years half the symptoms might be that....

Just kinda concerned that I might have two conditions that like... Are going to be A Problem with each other

Asking for people's experience cause at this point I don't trust the doctors where hormones are concerned, I've been told so many times that different birth controls would be fine which then weren't, and even had my symptoms denied.

Just wanna hear from people who've actually been there to be able to make some kind of informed decision when I next see the gynocologist 😭

Am in the UK so using NHS (can't afford private). For context.

I'm aware it's rare which is likely why my GP and gynocologist don't believe me about my concerns, but have seen on sites with info about endometriosis that pain radiating tonright shoulder/shoulderblade that intensifies two to three days before your period can be a bad sign, especially when it triggers coughing and breathing difficulties - though a lot of that for me is masked by asthma pump useage - I use them more during that time but keeps me functioning. Also constantly exhausted and my right ribcage area just feels wrong? The pain is mostly in the upper right back, flares up intensely enough to need painkillers to be able to think, and after the pain calms down it feels weird, as though there's a big sticker(/plaster/bandaid) stuck on my back where the pain was? I guess maybe the word is numbness?

Just wondered if this aligned/didn't align, for my own peace of mind if nothing else! And/or knowing whether to push the matter with my doctor. They've referred for ultrasound - would partial collapse or compression show on that? My understanding was that it would need chest xray but could be wrong...

Got an appointment end of August that was meant to be in early April but surprise surprise there was a waitlist.

I was told in January that I could consider the options for what to do whilst waiting for laproscopy and come back in a couple months so wanting to make sure I have all the facts for this one.

I think the one they're suggesting from what I remember is medical menopause and hrt add backs. Having had problems with birth control (can't take it without dangerous levels of depression kicking in), and PMDD that started when I had the Mirena IUD for seven months and lasted about a year after having it removed (no one able to explain this) it seems like my body might not get on well with progesterone - anyone had experience of going on the menopause-hrt route when this is the case? Aware of any options being better/worse?

Another thing I'm concerned about is that the booking team seemed to think seven month gaps between appointments is normal, which obviously if I'm starting a med that might damage my mental health to the point where I have to stop, but that might then have a separate negative affect because of the menopause thing? Or do they give that to you in a form you can stop? Can my GP be in charge of it, or an endocrinologist? They don't seem to have a plan in place for side effects that aren't sustainable...

Just looking for anyone with the same issues with birth control who's had success with the medical menopause-hrt option really?

32, UK based so NHS - can't afford private.

Had intense upper back pain for several months two and a half years back, it eventually subsided with massage, chiropractor, pain meds, but still flares up at minimum once a month for a few days to disabling levels of pain, and really is there at a low level most of the time. It's been a cycle of going to the doctor, getting told go to physio, physio not working and the doctor redirecting me back there anyway. Physio has finally outright said to the doctor that it's not a physio thing but doctor seems insistent on checking if it's a gallbladder issue first. Which requires ultrasound so who knows how long I'll be waiting. I've been begging them to do something for the last two years, at least to check so I can know its not lungs or heart, and its at the point now where it's harder to breathe if I lie on my right side or back, as well as my pulse having sped wayyy up. During pain flare ups I cough a lot more and my asthma meds don't work as well. At what point do I just go to the emergency room and see if *they'll* bother to check? 😭

The last couple months symptoms have rapidly worsened. Latest to appear is brain fog, right at the end of my period. And the day before an exam. Not ideal. Couldn't plan for it as didn't have it before. But this is incredibly stressful. Can barely revise because of it. Can barely make sense of my own thoughts. Terrified that this is going to destroy my life before I even reach the point of getting any treatment. I've been due a follow up after an MRI for months now, but they say theres a backlog so won't even book me in. I can't take birth control because of the mental health impacts - I get so depressed on them I end up wanting to give up on everything and move back in with my parents. I'm 32, in a decent job, own a house and two cats, decent social life, hobbies that I love... Birth control makes me want to give it all up. I've tried several, each worse than the last.

But this brainfog...

I'm at the point where if I lose this job I'm inclined to sue the NHS.

It's taken two years being send to the physio and sent away again for the physio to finally write to my gp to say that the pain in my upper back, ribs, all down my right side (and starting to reach my left side too) is not muscular-skeletal and is likely an organ issue. On the one hand, good that the gp is being forced to look into it. On the other, I am genuinely scared that this disease, if it's even what I have, will kill or severely disable me before it's even diagnosed. I feel at risk of losing everything and I am terrified. I can't afford to go private. I feel so helpless.

So I hear people saying thats what patients do all the time. But actually in my case it's been the doctors?

I've kinda realised this through chatting to others here. Tangentially not directly. But it feels like my doctors have no interest in looking at other possibilities? Like, I'm not set on it being endo. I'd distinctly prefer it not to be. I would much prefer they rule it out properly via laproscopy BUT LIKE, AT LEAST CONSIDER OTHER OPTIONS FIRST??? Surely it's not the only thing that could be the case, but they've yet to mention a single other option. I get that tests like ultrasound and MRI might pick other things up but none of that's been mentioned so it doesn't feel like anything else is being considered? I've not been told if other things are ruled out? Amd they're insistent on pushing birth control rather than trying to actually resolve the issue? I'm sure intense pain in any other organ would be more urgent than this...

So it's not like I'm desperate for it to be endo, I just want a diagnosis of something so we can start to look at solutions that don't come with a ridiculously high price?

Anyone else experiencing this?

Anyone's suspected endo turned out to be something else?

I'm in so much pain. Periods are reaching a point where I can't do anything on the first three or fpur days. Combined with the pre menstrual upper back pain which also flares up my asthma and makes me cough a lot, that's a total 5-7 days a month where I can't do anything. I cancel plans, fall behind on work and housework, the cumulative effect fucks up my life, all told.

Codeine slightly lessens it but the amount needed to decrease the pain enough to function pretty much knocks me out, so stops function that way instead.

Theres still at least a year on the waitlist for laproscopy. There's a point at which if I'm having an operation anyway they might as well just take the womb out and dissect it to see if they can find endo. I don't intend using it. I'm 32 so know where I'm at with kids - if I want them it'll be adoption, fostering or via a partner (bisexual so could have kids with either gender, or at this age a partner could bring kids into the relationship with them so like...). What I do know is I'm not going to go through pregnancy. If my body deals this badly with routine maintenance I don't trust it to not make pregnancy horrifying. Not a risk I'm taking. I don't identify as female anyhow - non-binary but leaning more male as time goes on.

I'm inclined to keep the ovaries as truth be told I don't trust the nhs where hrt is concerned and in any case my mental health has had such bad reactions to birth control that the risk inherent in that is pretty high. I think my ideal would be to go on testosterone instead but with the way politics are lately I'm concerned about access in the long term. The idea of taking oestrogen frankly makes me feel sick and I already know how much progesterone screws me up (mental health related risk to life kinda thing) but obviously I dont want to lose bone health.

How the hell do I get this sh!t taken seriously? Gynocologists obviously don't see me when the pain is at it's worst cause it would take a lotta luck to book an appointment for exactly when that hits (not consistent enough) and even the waiting list for a follow up from MRI seems to be long - I keep being told they don't know when they can book it in even though the MRI was at the end of March. Its at the point where if I knew a reliable way to damage my uterus so severely they would be forced to take it out without injuring other organs I'd do it. Sometimes I even wish cancer had shown up on the ultrasound just so they'd do something. I've been in so much pain I sometimes faint or throw up, every month since I was a teenager apart from when I was on birth control which eventually led to severe depression and burnout. I don't know how to go on like this. No one takes it seriously - even the symptoms in my upper back that affect my breathing every month which based on my research could signify partial lung collapse, especially with the level of pain it hit last month and this one. I feel like I'm going to die before they do anything about it. I can't afford private healthcare so I'm trapped. I look young and I think sometimes they presume theyre talking to a teenager or someone in their very early twenties, even if they've bothered to look at the notes it feels like the bias is there. I would go to a&e but can't drive when the pain is at its worst and don't have any friends who both can drive and believe me about how bad it is. Not to mention I wouldn't be able to sit there for hours and I am not sure if they let you lie down...

EDIT TO ADD: if they are able to offer me non hysterectomy options I am super on board - just not open to the ones that are a risk to bone health or mental health because like... Same problem at that point... Honestly if they were bothering to look into other causes for the pain that would also work but it seems like they want to wait the year and a half to do an operation to check for endometriosis BEFORE they bother to check other less invasive possibilities.... Also frustrated because I keep getting "if you're still having symptoms maybe talk to your gp..." When I try to chase up appointments and like... Why would I not still have symptoms when you have done nothing about them???

So I've lost a fair bit of weight on ADHD meds (don't know the exact amount cause knowing my own weight causes all manner of issues with eating and self image) and seem to have also started feeling the side effects of Elvanse a bit more - wondering if anyone's found that happen after a bit whether with or without weight loss and whether splitting the dose or going down a level has helped?

Going to talk to my doctor about it obviously but trying to get some insight/heads up on what my options might be!

The side effects are mostly just anxiety reappearing where previously adhd meds had surpressed it, but not in a way that feels like upping the dose would necessarily be the best plan? Hard to explain, its just how it feels in my body. So I don't know if this is now anxiety *caused by* the meds. But at the same time the weather has been chaotic and air pressure changes can also trigger the anxiety so hard to tell if it's that! And maybe also hormone changes but not really got a reliable way to check - makes me think that trying to get a few more blood tests over my life to establish a baseline would have been smart!

Am currently all over the place between the weather, the resultant lack of sleep and assorted battles to sort out ADHD and other health appointments, so I guess that's also a factor. Mostly just wanting to hear other people's experiences cause I'm a little worried about going down a dose if it might feel like it just stopping working, but at the same time maybe if I come off for a week or two and go back on at 30 instead of 40?

Specifically concerned about this week which in my area is due potential highs of 35C - other areas apparently cpuld be 39C.

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I don't have aircon, and have minimum office days so can't work from home all week to monitor cats and any air cooling method I use to make sure of no issues.

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They're indoor cats (too many accidents in my area, hoping to sort a catio for them at some point though). This means I can't have windows open to vent a portable aircon and hesitant about window blocking methods for venting unless someone has tried and tested options!

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My eventual intention is to get air con put in (I'm extremely sensitive to the heat and neurodivergent which can add an extra layer to my ability (or inability!) to deal with it.

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Cats are both coming up to about a year old now, in case it's relevant!

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Just want my babies to be comfortable 🙈

I've been in a horrible cycle for the last two and a half years of going to the GP, being told to self refer to a physio, doing the exercises they set and either having no change or worse pain, going back to the GP and being told to self refer to physio again.

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They've said they're not able to refer me for any scans, and that the physio might be able to but only if there are specific symptoms, but they won't tell me what those are so I don't know if I have them - as far as I know I'm not explaining in the right way and that's blocking my access to real help.

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Is there anyone else/other type of health professional other than physio I could ask for referral to for this? - I need help with it because at its worst the pain is debilitating but no one seems to care because it started at random and not from an injury. I've found GPs work best when I have a suggestion of somewhere to be referred to.

32 and currently (painfully slowly) being investigated for endometriosis. Finding that it's hard to explain my situation to a doctor when I don't have a reference point for what a "normal" period is like.

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For context:

My pain goes right across my lower abdomen now, I'm sure it used to be more central but now goes all the way out to the sides, especially the right side which now is lowkey sore most of the time even between periods, especially if pressed on. Also the usual lower back, upper thighs etc but I've seen those mentioned as normal. It's how far across my abdomen it's going I'm wondering about.

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With pain levels, they are faint, throw up, struggle to focus, stand up for long or leave the house kinda levels, I work from home during but often can't get much done - unfortunately doubt I'd get away with sick leave to the extent it would be needed to cover even the worst of it. Ibuprofen and naproxen each helped for a couple years but then stopped having any effect. Currently codeine (30 or 60) helps a little but not enough and after the first dose subsequent doses don't seem to be effective.

So I'm on the waitlist for laproscopy and a little bit terrified by the number of posts of people saying they felt worse? Or had long term issues?

I don't feel I have much choice in the matter cause basically all birth control screws me up and I *have* to try to find out why my periods and the pain directly before in other parts of my body are so debilitating, especially since most painkillers have stopped working and the only one that I can get that still works makes me exhausted and has horrifying side effects if I use it to actually prevent the pain for the whole time, I can only really use it once a day for when I need to get stuff done urgently or to leave the house...

But kinda scared the investigation will disable me further?

Not to mention that because of the reactions to birth control, if I do have endo I'm likely to end up picking between:

- living with the intense pain and hoping the endo doesn't cause too much organ damage,

- using birth control and giving up on having mental health good enough to keep my job

- getting a hysterectomy and having to rely on the NHS's opinion of how much HRT I need (I gather that because their guidelines are for people going through menopause at the usual time the level they aim for is low if you're in your thirties) not to mention the possibility of having the same issues with mental health from that as from bc, on top of a risk of bone density loss....

Like.... Are there seriously no options that aren't "well, guess you're fucked, which disability would you prefer?"...

Looking for advice!

I've started going camping more but got some food issues - both in that I'm quite picky and struggle to organise myself to cook whilst camping. I also don't have a camping fridge, only a coolbox that doesn't last long and haven't been able to afford to get camping stove yet.

So I'm looking for ideas for camping food that:

- are vegetarian (due to sensory issues so not strict, products that aren't strictly veggie are fine)

- don't require cooking or can be prepared in advance and kept for a few days without needing a fridge.

- don't need to be refrigerated

- are fairly consistent in texture (same texture each time, can be an issue with fruit)

- nut free or flexible on nut content if recipes; some nuts make my mouth itch and I never remember to note down which, I gather this can be a sign of an allergy that could become A Problem!

- protein sources useful - can be difficult due to issues with meat!

All ideas appreciated!

I've started camping more but due to autism have some limitations on what food I eat and due to ADHD have trouble organising myself to make food whilst camping/managing to do this in between other activities. I am also prone to forgetting to empty out coolboxes and such (again, ADHD issues). I also haven't been able to afford to get a camping fridge or stove yet 🙈

So basically I'm looking for food I don't have to cook and ideally don't have to keep in a coolbox. Fine with recipes, I don't mind doing food prep in advance.

I struggle with meat and fish sometimes so prefer vegetarian options, and can struggle with fruit and other foods that are inconsistent in texture. Dried fruit is less of an issue. Partocularly struggling for protein sources as protein helps the ADHD meds work better. Aware its optimal if I avoid just eating sugary snacks and crisps!

In the UK if it's relevant.

I gather some bc can mess with adhd meds (specifically I'm on elvanse) and wondering if anyone knew about that cause the internet is a hellscape and I'm currently in too much pain to do proper research?

I don't really want to be on birth control but I'm desperate, there's pain in my upper back that kicks in about a week before periods and during periods the pain is so bad I shake. The only painkiller that works is a higher dose of cocodamol that I have to get on prescription and can only use when I need to go out or similar, because if I use it for the full time I'm in pain I feel very ill when I come off it - since normally I only get about ten-twelve days relief having a week where I am to all intents and purposes ill is not an option.

My job is intense and I'm already playing catch up all the time because of the pain days where I can do very little but cant take leave because of their frequency.

Gyno is looking into endometriosis but the wait for laproscopy is about a year and a half and MRI came back clear so that won't be changing.

Aware oestrogen and possible endo may not be wise but historically progesterone only birth control has killed my mental health and I cant afford for that to happen right now.

Combined made me eat everything in sight with no control but hoping adhd meds will counter that.

Any experience with bc affecting/not affecting meds?

So far have tried Mirena (caused massive depression and mood issues, and pain after insertion never stopped), norethisterone (even worse depression, stopped early as it felt dangerous to continue), rigevidon (couldn't stop eating and burned out at work, depression again) and cerelle (more depression but less horrifying than the first two).

Wondering if anyone with similar effects from the above has had any luck with something else?

Currently on no birth control which means about a week of mental health issues before periods and about four or five days of brutal pain when I have periods- possibly endometriosis, got doctors looking into it but waitlists are very long.

In the UK if it's relevant.

Not willing to try things with risk to bone density as some of my hobbies wouldn't be possible/would be very risky if I had bone density issues (stuff like swordfighting).