#And buscopan if I can find any

[ukftm]

Hi I'm about to have a hysto at New Victoria Hospital this coming week (April 23) just wanted to see if anyone else has had this done at New Victoria Hospital? I've been waiting for stage 2 phalloplasty since April 2019 and this op was offered to me as they now don't do all of stage 2 in one go. Obviously it's very annoying having an extra stage added, but I also don't have any examples of other guys experience having this stage done alone? Any ideas on recovery? The team / experience at New Victoria hospital? Would be great to hear others experiences. Thanks

Hi Anon,

That’s right New Victoria have not been doing Hysto’s as part of stages for a while now and most guys are being offered hysto at their local hospital.

From personal experience I had hysto done as part of one stages (before they stopped doing it) at NV. You’ll be looking at 6-8weeks recovery, although NV always seem to quote far less. The important thing with hysto is not to lift anything until you are fully recovered and listening to what the nurses recommend for recovery. Hysto is one of the easier recoveries and you can often think you are recovered because you feel ok, but it’s essential you give yourself the full time to heal as your inside healing takes a lot longer than you realise.

You will also find going to the toilet difficult and can be painful for a while. It’s really important you do not push to go to the toilet, so get your GP to prescribe stool softener, which will make that so much easier and less painful. Get this in advance of your surgery, if you can, as this is a life saver for when you come home. If you can’t get it prescribed in time, get yourself a box of Buscopan stool softener and start taking that as soon as you get home.

I have also had stage 1 phallo at NV. The team are really nice and so is the hospital. You’ll have a great experience at NV as they are very caring and professional.

What I would recommend is telling your surgery team that you do not want an anaesthetist called Dr Gupta, he is awful and treats trans patients horribly (you’ll find lots of trans guys sharing their bad experiences with him online). So make sure you tell the team you want nothing to do with him. The NV team do still use him, so you’ll want to tell them you won’t accept him. I did this for my last surgery and ended up getting a really nice anaesthetist instead. Apart from Dr Gupta, the team at NV are really nice.

[tomatowielder]

(IC anon from before) I would like to hear some things! I mean I know what the doctors tell me about vitamins to take and diet changes

IC is super treatable! most people find some relief with treatment.

if you can afford it, it might be worth having your pelvic floor assessed by a suitably qualified physiotherapist - pelvic floor dysfunction (an overly tight pelvic floor) can mimic IC. and even if there's some level of pain/frequency/urgency there at baseline, an overly tight pelvic floor is going to exacerbate that, and a huge amount of people with pelvic pain will have a tight pelvic floor from 'clenching' during the pain/urgency, so it's worth doing it anyways.

also re the pelvic floor - get a squatty potty, or a big pile of books, or anything at all that allows you to pee in a 'squatting' position. here's some yt videos I use for pelvic floor relaxation stuff:

some exercises: https://www.youtube.com/watch?v=2yx0_PK0Q-4 a pelvic floor focused meditation: if you're dealing with straight pain, too, (like pelvic pain), headspace has some good pain meditations too. but ime they haven't been great for coping with urgency & frequency.

besides that, there's a treatment ladder you can 'go up' w/ your dr, with each 'step' being more invasive. there are a bunch of different medications you can try. if medications haven't brought adequate relief (and for so many people they do! medications have massively improved my quality of life & I don't feel the need for more invasive treatments), you can try things like bladder instillations, botox, neuromodulation, hydrodistention, and medications with higher side effect profiles. some people also find their flare ups are hormonal, for some people birth control is helpful (for other people it isn't). if you want any more info on the treatment ladder, or medication options, I can dig something up?

medications you can try without your dr (they're over the counter) are antihistamines, like loratadine or cetirizine. if you're in the UK buscopan is over the counter too. there's azo in the US, which is meant to be like a urinary pain killer. you could also try baking soda or something like prelief.

some people find a TENS unit helpful - they're about £30 on amazon.

there are also a lot of supplements some people swear by, would you be interested in hearing about them? (all the supplements are kind of hearsay rather than evidence based, but I still take them and have personally found some useful.)

idk where you're based but there may be advocacy & support organisations you can tap into. either way, there's some helpful info from the IC network - https://www.ic-network.com. and if you're in the UK, bladder health UK is good too - https://bladderhealthuk.org

it's kind of a crap shoot that will involve a shit tonne of trial and error. what helps some people actively flares other people, so it's just a tonne of trial and error. but there are a LOT of options to try, and i've read so many stories of an option helping someone - even people who've been suffering for years and then they try an invasive treatment and it helps them. flares might always happen but there is most probably a way of reducing their power & living alongside them. be as patient with yourself as possible, this shit sucks

also idk if this is useful but when it comes to finding out your triggers and stuff (e.g. if you're food sensitive and find that, idk, caffeine triggers you), be super patient with yourself and go easy. I'm really reactive to alcohol but sometimes I crack and drink with my friends - I don't 'deserve' the resulting flare. if you're flaring, there's nothing you've done to 'deserve' it (even if you did the thing that caused it) bc nobody deserves that kind of shit. very very best of luck

edit: also, bladder training helped me with frequency issues! I can find resources if you like, and if you get a physio they should be able to walk through it w/ you - it's gradually increasing the time between bathroom visits until you can hold it for longer more comfortably which reduces urgency over time. if a good physio isn't accessible to you & you're interested in bladder training, I can dig up some resources

[deweydecimalchickens]

So I'm going camping for the first time in nearly ten years by myself. And also having three long mountain days out. Naturally my body is just like "but WHAT IF period though? WHAT IF halfway up mountain and really need some modern plumbing with a locking door RIGHT NOW?"

Hey uterus this is why nobody likes you.

[pastrygeckos]

Since I've gone through ages with IBS, and I've tried a lot of different things, I thought it might be helpful to someone if I went through some of the tips/tricks/treatments I've tried. Please note that you should never change any treatments without notifying your doctor, and that this is just a guide based on my own experience, whereas someone else might have a negative effect from certain medicines.

Omeprazole (antacid). I had been given pepto that I had to drink at one point, but the omeprazole lasts much longer and is much more pleasant. I'm still on it.

Antidepressants. These can be really useful, as mood/vagus nerve malfunctions/stress will make gut conditions worse. I initially started on them for depression, but we were eventually able to find a type that really helped me.

Buscopan (anti-cramp). They are fairly well known, and they can help ease the cramps brought on by IBS. Like many other things, their efficiency wore down over time for me.

Peppermint oil (capsules). Peppermint in general has a few good effects on the body, including reducing cramps. Once again, these lost efficiency for me over time.

Peppermint tea. Alongside reducing cramps, peppermint helps prevent heartburn, nausea and gas when ingested. The nurses at hospitals might suggest this.

Soft liquorice. As well as preventing constipation, liquorice is also good for heartburn. It's worth noting that liquorice should not be consumed in large amounts as they affect blood pressure.

Cinnamon tea/cinnamon bark tea. Cinnamon is another thing that helps prevent and heal ulcers. I prefer cinnamon bark soaked in milk, with honey but a straight cinnamon tea is pretty good.

The upkeep of bacteria that help your stomach is always a good idea. You can consume milk/dairy products that have been fermented (yoghurt, kefir, etc.) or certain other foods, such as kimchi and sauerkraut. I've been taking a little shot of kefir whenever I take my meds, and it helps coat the stomach so the meds don't erode my stomach too much.

It's entirely possible there are other things that I've forgotten so feel free to add on if you have any other good tips!

[jenna-jayde-the-renagade]

So my life has gone to shit.. I dont trust anybody anymore, and honest to god I cant help but keep thinking of ways to end it. My mom keeps telling me how to feel about this whole thing, that I should be grateful that i got in finally to see a specialist. Reality is I dont even trust those subhuman animals anymore, and frankly they're gonna have to earn my trust. After 4 fucking years, my life, my future being ruined. My mental health going downhill, all for the second time now. Add on to that, I dont get any meds for the pain so this has pushed me into addiction now for a second time. I've been dehumanized and humiliated, treated with nothing but the utmost disrespect while being stigmatized for being mentally ill, transgender and a recovering addict for most of it. They ignored me for 4 years, my body is damaged, and frankly help just might have came too little too late. I wont just suffer through the next one, the next time this happens I'm gonna end my life, my suffering on my own god damn terms. Atleast I still have control over that..

Fuck the canadian healthcare system. Some days I honestly just want to start selling drugs, and fly to a country where I can just pay to play and get the best care in the god damn world. Cause 4 years now I've been telling them to refer me to a specialist, I've been telling them that it's probably crohns or some other GI issue. They need to do a colonoscopy and a scope to find it, so that's what I would ask for. I would never get it, so i more or less gave up on the healthcare system. They would leave me on the floor thrashing in pain for hours. Treating me like a drug addict in withdrawal when I didnt even have any opioids in my system. I would be lucky if I got an IV for fluids, and even more lucky if they pumped me full of a bunch of over the counter drugs and others that didnt work like gravol, tauridol, buscopan, zofran, and haliperidol. I would tell them each time, that this was the hundredth time they tried gravol, and it doesnt help people when they're screaming in pain. They treat the nausea. Its bullshit because I am in so much pain that its making me nauseous and until they get rid of the pain, the vomiting is just gonna continue. They always treat me like I'm full of shit, and when I turn out to be right and continue puking, thrashing and screaming in pain, they just get angry at the fact they were wrong. Our doctors and nurses are a bunch of sociopathic, apathetic adult children who in my experience take pleasure in watching you suffer. The worse I get the more they smile. They are so stupid, blind almost because if their stupid fucking machine says I'm ok then I guess it's all in my head. They only think that theres nothing wrong with me because theyve only ever done a blood test or an xray. Never ever once have they done a single test that would have found the issue, crohns cant be found just on a blood test. The emergency room doctors think it can be, my family doctor and everybody else I've talked to says otherwise.

On January 1st I was having another flare up, and they shoved me in the psych observation room because they genuinely didnt want to deal with me. They ignore me, and I keep going in because I want help. I dont want to end up relapsing again cause I cant take the god damn pain! But nope, I get treated like a crazy person now.. they did it against my will. And they even tried to take my phone and my keys. I was puking constantly, I needed water to keep hydrated and they left me for 4 hours, locked in, no meds, no help or nothing. So I just cracked.. I had nothing to barf in, to wipe my nose with, or to wipe the cold sweat off me. So I puked in every corner of that room, I puked beside the bed especially because a mop wouldnt fit in there. I pissed in the corner, I would hack up some phlegm and spit it all over the floors and walls, I blew snot rockets on every surface too! After a while some nurse came in and gave me a barf bag. I threw it on the floor and just continued to puke over every hard surface in the place. I was puking every 5 seconds I swear, and the doctor finally came in at 3 hours and 15 minutes. At 3.5 hrs they give me two pills. I straight up tell them there is no point in even taking them. I couldnt even keep water down and these people are stupid enough to make me take pills? Come on. You need to hold it in for atleast an hour to see even the most minimal affects. I was puking every 5 seconds, to the point that I puked before I took the pills, and I puked them out the moment after I swallowed. They had given me a fucking gravol tab, and some Ativan, the latter of which I couldnt even hold under my tongue long enough. I barfed it onto the floor when it was half dissolved. They come back with this clear liquid shit in a shot glass. I swallowed it right after I puked. The liquid burned my insides, and i puked that shit out even quicker. I asked them to give me IV medications for that exact reason, I always ask for IV medications cause its literally a waste of your time and mine to just pump me full of pills when I can't keep them down and they hurt my tummy as they dissolve. They tell me to just "breathe deeply and relax" and to "just try jayden, you gotta try", so then I try, and when they end up being wrong, and I can't take shit. They end up saying that I'm manipulating, that I'm drug seeking or I'm not trying hard enough to make it work. Absolute bullshit, over the course of 4 years I have quite literally told them what to do. I have multiple family members with this disease, and my grandmother was ignored like this too. She told me to ask them for a colonoscopy and a scope, and to ask them to treat the pain, not the nausea cause the pain literally causes the nausea. The sooner the pain is gone the sooner I can be normal and tell them what's going on. Instead I'm left to suffer in the worst pain a human being can feel. I get treated like shit and told it's all in my head. I gave up on getting a diagnosis in year two. I just want to shoot dope whenever the pain comes. Dope atleast takes it away, after all they would be giving me some of the strongest shit they have at the hospital if I was some boomer with a sprained ankle. It would take the pain away. Thats for sure. Being a mentally ill, drug using, autistic tranny they just see that. I get nothing. No help, no answers, not even some relief when my screaming can be heard far and wide.

I want to die right now, and I keep trying to think of a painless way to do it.. buying $400 worth of street fentanyl and slipping into a nice, peaceful opioid coma seems like a wonderful idea right now.. that would end the fucking suffering atleast..

I wont be wearing a colostomy bag. Colostomy bags arent sexy, they are fucking disgusting and you cant just be body positive when you have a fucking bag full of your own shit hanging off you, and your only way of having penetrative sex sewed up permanently and taken away from me. Not like I could even be a decent fuck for anybody at this point anyways. Its painful to shit, let alone anything else. I dont want to give up food either. I love food, food is literally my life and the only way I have to bond with certain people! Like my family for example. Nothing makes me just want to slip.into that coma more then the worry of the future.

Will I be sitting at a family gathering eating bland gluten free, dairy free, all organic 100% vegan fair trade horse shit on a plate while my family actually gets to enjoy the food I used to be able to eat? Moms spaghetti, grandmas meat pies, the baked goods, fresh tomatoes out of my garden and others. A good fucking steak even? Cause honestly a birthday isnt a birthday if I dont have my birthday meal.

I know for a fact my body is damaged from 4 years of suffering. I used to bounce back, now it takes the wind out of my sails for a month.

Needless to say, I just want to fucking die more then anything else. Positivity and anything I love is gone, and all that I have left is knowing that Alberta health services, coast mountain health services, providence health services, and interior health services have all fucked me in the biggest way humanely possible. So thankful for free fucking healthcare!!

You get what you bloody well pay for!!

[bipositive]

As a fellow resident of the UK, an extra heads up - some bugs/illnesses are in the air rn, so it might be a good idea to check with doctors/local health care on what's going around and any over the counter pills to stock jic. (I say this as someone who heard about the colds going around, ended up getting one, and am still in the middle of recovering. The pills recommended to me were paracetamol and buscopan, but idk all the bugs going around, so best to find out all the info possible!)

Yes! Good thinking!Always check up to make sure your medications are in date and your prescriptions are up to date too.Hot weather can exacerbate conditions like asthma and COPD, so it’s best to be prepared whenever there’s a weather alert.With love,                Bi-Positive.  

[incurableoptimistest1994]

Every cloud ⛅️ has a silver lining. In this case, the cloud is that I have a UTI; E. coli to be specific. It makes a nice change, cause my usual UTI bug is Proteus Miribilus, which is notoriously difficult to treat. E. Coli is usually easier (I say usually, cause, like, I his is me we’re talking about 😂). Palliative care rang this afternoon to let me know and see how I’m doing (not good, is the answer tbh 😂👍🏻 a 5/10). I’ve started antibiotics (we keep the ones I’m most responsive to in stock in the house for situations like this one) and cranberry capsules, and we’ve changed my paracetamol and buscopan from PRN to regular for at least a few days. The silver lining? Well at least now we know the reason for why I’m feeling so poorly, and it’s something treatable! This is good; part of me was wondering if this was just my new normal. I’m hoping after a few days antibiotics I’ll be driving my family mad bouncing around and bossing them about 😂! I’ve found it really hard the last few days; I genuinely just feel crap. My brain fog is awful; I just about remember my own name atm tbh 🙈😂! I’m so tired; I’m sleeping 8-9 hours a night, then sleeping 50% of my day away. My neuropathy is really bad too, especially in my hands and arms... it makes doing anything way harder. I’m really struggling to walk. And my pain is pretty bad, especially with some awful bladder spasms. I’m so poorly and exhausted I can’t do any of the stuff I usually do... no yoga, no dance, no walk with the dogs... I can just about manage a shower, and I need a nap after that. But I’ve been making an effort to find joy in the stuff I can do; sunbathing, naps in my book nook, listening to music, watching telly, cwtches. There is still a lot of lovely stuff I can do! If you’ve been in touch with me the last few days and I haven’t responded, please be patient. My brain is currently full of cotton wool, and my body is made of jelly; I just don’t have the energy to Do The Things. I’m hoping in a few days I’ll be back on top form. I really appreciate y’all checking in and being so supportive. It means a lot ❤️ #mybladdersucksatbeingabladder #gotauti #thatpalliativecarelife #poorlygal #yayforantibiotics https://www.instagram.com/p/CDSKvkyjWrF/?igshid=1q3spsculg1lj

[crackednailsandsplitends]

IBS Truths

IBS Truths

IBS crept up on me so gradually that for the first year or so I didn't realise there was anything wrong. I'd simply ignored and dismissed the symptoms - I'd even resigned myself to accepting that I will probably have digestive problems for the rest my life, they were mild, annoying, and uncomfortable, but I just didn't have the time to go to the doctors for what I thought was something I could live with. I tried to put it to the back of my mind.

However, my digestive system became more and more messed up and with the stress of my father's illness and death, my symptoms worsened, they progressed until I couldn't put them of any further.

IBS is generally diagnosed through a process of elimination where the doctor can't find anything else wrong to explain the symptoms. The symptoms are unpleasant: painful stomach cramps, bloating, diarrhoea and constipation.

How best to treat IBS? It depends on what the triggers are for you. The triggers are not universal to all; what can be a trigger for one person with IBS, doesn't mean it will be a trigger for someone else with IBS. IBS is an elimination journey - i.e. eliminating other illness before you arrive at IBS, eliminating what the triggers are, and eliminating what foods/drinks.

For me, as stress was one of my triggers for IBS, below are some ways I try to practice to relieve my symptoms:

Relaxation techniques like meditation (I downloaded a meditation app)

Physical activities - yoga or pilates (I enjoy both, especially yoga)

Regular exercise is also a good way to help reduce daily stress - I enjoy taking the dogs for a walk, take the kids out for activities etc. 

Make time for oneself - make some you-time.

More recently, it became clear to me that stress was not the only trigger for my IBS, it was clear what I was eating was also a contributing factor.

Over the last couple of months I've started to experiment in cutting out certain foods, and so far I've identified two foods that are a trigger, onion and garlic. These are two foods I'd never consider would contribute to IBS, not in a million years, but they are now on my to avoid list. By cutting these out I've noticed a big difference. To say I am gutted is an understatement. Both garlic and onions were staples in my diet, I love onions, and I've always cooked with a lot of garlic. So my journey to cut both of these out and re-educate myself to cook without these two staples is going to be a long journey. But with any slip-ups, by consuming onion or garlic accidentally (I've already done it when eating out, I ordered braised red cabbage), having Buscopan readily available is a must for me. 

What is Buscopan? Buscopan IBS Relief provides effective relief from the pain of Irritable Bowel Symdrome. It acts on the cause of the pain: relaxing the bowel muscles to help stop the spasm itself and relieves the discomfort caused by painful cramps.

The best way to discover which foods might be causing IBS symptoms is to keep a detailed food and symptom diary. Do your research, like me, you will be surprised at what foods and drinks can be a trigger for IBS symptoms, but whilst I am on this elimination journey, Buscopan is certainly helping me against the dreaded cramps and pains.

Buscopan Kindly sent me this gorgeous IBS Truths kit to get me started and to inspire me to talk about my IBS truths. 

[not-poignant]

Speaking of the stomach symptoms that Ef has to go through, how do you cope with your own symptoms and do you have any protips for dealing with the pain?

Hi anon!

This one's tough, because the cause of the pain can be so multi-factorial. Digestive issues - for the best pain treatment and management - require:

1. A diagnosis 2. Understanding your allergies and intolerances*** (and they are not the same thing) 3. Understanding your triggers

The thing is, a diagnosis can be as good as a cure for some people who are lucky enough have treatable digestive conditions. A person with a finicky digestive system who learns they're gluten intolerant has a cure, even if it's not an easy one (avoid all gluten - symptoms and pain gone! Huzzah!)

Anyone who is having difficult digestive times should, imho, never just leave that as something to self-diagnose and just accept. I get diagnosis is a matter of privilege in some cases, but where it's not, this is one area where you don't want to fuck around and find out. There are literally hundreds of different things it could be, all with different treatments, medications, options, and supports out there. And I do know people who've ended up with severe autoimmune conditions and losing like, feet of their intestinal tracts, or cancer-like conditions, because of chronic diarrhea in particular, because they just 'waited' on the pain they were experiencing in their digestive tract.

And then the rest of this post is mostly like, 'I can't help you because bodies are diverse and 'stomach symptoms like Ef' means hundreds to thousands of different illnesses and hell, I've suggested pain management techniques in that story that you can try right now, and also I can't tolerate any pain treatments so good luck anon but I got nothing.' But like, the long scenic route version.

I can't speak to your issues, anon, because I don't know what your diagnoses are. There's not really many 'idiopathic digestive issue' diseases, but there are a lot of chronic illnesses that can be diagnosed through exclusion that can't be cured. But again, of those - and there are many - I don't know what yours are. And what I have, may not apply to you. It may not even apply to someone with exactly the same symptoms I do.

A person having Efnisien's symptoms could just have some intolerances that could be easily cured by avoiding those foods. Another person might have cancer. Like...you'd be amazed how many diseases cause non-specific and painful cramps and diarrhea. Sometimes it seems like all of them can.

For example, one of my many digestive illnesses is severe medication resistant gastro-esophageal reflux disease. Everyone in my family on my mother's side has it to varying degrees.

My grandma has needed to have two Nissen fundoplication surgeries to survive it, and has taken a proton-pump inhibitor since they were invented to manage it (since the 1980s), and because she's been taking a PPI for 40+ years, her stomach is now also riddled with hundreds of (so far) benign polyps and cysts as a result of the medication that she must take.

She avoids certain foods that I don't have to avoid, but I also need to take more medications than her, my food triggers are different to her food triggers, my brother's food triggers are different to my food triggers and he has the same disease and presumably, with a very similar genetic make up because it comes through the family line. His is very severe like mine, and nearly caused esophageal cancer for going so long untreated (the medication to treat has side effects, but leaving medication-resistant GERD alone can cause cancer of the throat and esophagitis, which my brother has been diagnosed with). My sister also has it. My Mum's is very mild, and she just has to avoid certain foods but needs no medications. And so on and so forth.

So how I manage the pain of just that one digestive disease - for I have more than one - (PPI and H2 receptor antagonist, certain food avoidance, no NSAIDs at all) is different to how my grandmother manages the pain (two surgeries, food avoidance that I don't have to avoid, PPI only), is different to how my mother manages the pain (food avoidance only, and different foods to me), is different to how my sister manages the pain (heat packs). Even the specialists we see are different, and our doctors suggest different management protocols. In that sense, I'm lucky, because my GERD can be medicated and I can generally enjoy eating and not choking on my own stomach every single night. Though I still have 'breakthrough days' where I do wake up choking on my own stomach acid, and have a sore throat / cough for the rest of the day.

So like, I can't take anti-inflammatories for the pain because that affects the stomach lining and mine's already fucked from GERD, but you might be able to. I can't take Buscopan for the pain, but you might be able to. I can't take Immodium on bad days, but you might be able to! Don't get me started on opioids or tramadol, it is very much like my body wants to suffer sometimes, the way I can't tolerate meds that are specifically for pain management. :/ I highly recommend looking up some support groups for the diagnosis/es you have, and seeing what people are recommending.

Because I don't tolerate almost all painkillers, I can't take any pain relief for my digestive illness/es (of which there are like...four, not including doctors thinking that my genetic cancer is causing some of it too, which is just a whole lot of oh well) that isn't just paracetamol (acetaminophen) which doesn't work.

There are no medications that help my chronic diarrhea at the moment, because it doesn't seem to be an autoimmune disease (at least so far, despite flagging for mild autoimmune stuff in every bloodtest I've ever had since I was 18 years old, but that's another story), but if yours is autoimmune in nature, there will be options that aren't pain-medication that may help you, and anything that helps with symptoms also, by default, helps with pain.

Some of my symptoms/pain is stress-triggered (my PTSD and my tumours can cause massive and unusual amounts of adrenaline to dump through my system, and one of the side effects of adrenaline entering the system is diarrhea - it's part of the flight/fight response: digestive disturbance). Therefore, less stress would certainly help me. But one of my specialists just laughed at me gently when I asked him how people stress less. You have to be awfully privileged financially to even try, even without a diagnosis of PTSD. And my tumours will still likely do this to me for the rest of my life, whenever they just feel like manufacturing hormones. They're neuroendocrine tumours, they want to fuck up my hormonal system, lmao.

Basically, anon, your question is kind of too vague to suggest much more than what's in Falling Falling Stars - perhaps some pain killers, perhaps some food avoidance, perhaps some heat or cold packs. Who knows? I have no idea what your diagnoses are, what you can tolerate, and I know what other people use for support, I can't, so I can't speak to how good those things are.

I'm going to level with you, anon. I have no protips for dealing with the pain aside from sucking it up and dealing with it, because I have almost no other options myself except to develop a high pain tolerance (which I have, which is terrible, because it means I wait too long to see doctors for very serious issues, and this has fucked me over more than once - one of my specialists literally yelled at me for it only last year: 'WHY DIDN'T YOU COME IN SOONER, DO YOU NOT TRUST US' which was great).

I'm really hoping you are not in my situation, because my 'dealing with the pain' is a version of 'I am in moderate to significant and sometimes severe pain 24/7 and no one can do anything to help me.' I wish it was only my digestive issues causing that, but the Fibromyalgia is certainly part of that. Sometimes the only way to deal with pain is to see a psychologist, and learn how to live with pain.

Find the support groups for your illness/es anon, they will have big personal lists that everyone is doing, they will be highly diverse and everyone will be doing something different for pain management, from ketamine infusions, to low-dose naltrexone, to ultrasound therapy, to heat packs, to a billion different medications, some for pain, some for your diagnosis. Having a diagnosis will help, because there are medications for specific diseases and disorders, someone with Crohn's will be on a very different cocktail of drugs compared to someone with IBS-D type compared to someone with IBS-mixed type, compared to someone with food intolerances.

And if you're lucky, your issues will be caused by intolerances, in which case you have a cure, even if it's an inconvenient one. But that cure (avoiding the food) can permanently remove the pain in some cases.

I'm sorry I can't be more help. There's just...thousands of things that can cause diarrhea and stomach cramps, and thousands of ways to manage those things. It's too nonspecific, beyond what I've already suggested in Falling Falling Stars. And anything more than that comes with side effects, and it's not good to already strain a digestive system that's strained, when you can potentially avoid it.

*** Please remember that there is almost no way to know your intolerances except through a food elimination diet, and anyone trying to sell you a blood test that tells you otherwise (i.e. naturopaths) is a fucking charlatan. There are, I believe, only 2-3 intolerances that can be read through blood test, one of them is lactose. There is no such thing as an accurate 'intolerance blood panel.' And only an allergist can diagnose allergies (with the exception of coeliac and again probably lactose issues lol), and finally, allergy =/= intolerance. Elimination diets should be overseen with the help of a doctor or specialist or dietician, because they are difficult to do and can cause or exacerbate eating disorders and disordered eating. I am not a doctor, always talk to your doctor about this stuff first, if you're concerned.

[readfelice-blog]

moominland chronicles fünfzehn: felice vs the german health care system

Hello you, 

It’s 4am on Friday morning, I’m lying in bed with one of my 3 flowered ikea lamps burning away, holding my cuddly pig tight to my chest whilst I tap out this blog on my iphone, balanced on a pillow.

I cant sleep.

I’m going to get a taxi to hospital in 5 hours.

Before we start all that please administer any of the below music to yourself as an accompaniment, I’ve been dipping my toes into the clear water of pop shoals this week, I might be the last person to have listened to blond (an article in vice insisted upon me lining it up on my google play - still no cd player, I know):

Frank ocean

Nikes (song, always a fan of a big opener on an album)

https://vimeo.com/179791907?ref=em-share

Blond (album, yes you've probably heard it already)

https://www.discogs.com/Frank-Ocean-Blond/master/1046042

I'm also late on the train for Mitski I’m sure, but the words, restrain in her voice and divergent harmonies (discordant, is that better?) are searing through me, might listen again in the hospital tomorrow.

Though perhaps as she grows older she wont long for that kiss quite as much as she does now, because prince charming will never save her really (though she does acknowledge that from time to time on this album)

Mitski

A horse named cold air (song)

https://youtu.be/ce3m-o1pZqY

Be the cowboy (Album)

https://mitski.bandcamp.com/album/be-the-cowboy

And just this one song, which kind of speaks frankly from my heart a little, or at least I sympathise with, though in a fuller sense my situation is very different and it’s only my little brain that identifies with the lyrics.

SZA: the weekend

https://youtu.be/PALMMqZLAQk

So then.. youre suited and booted musically, lets press on shall we? After all I mentioned hospital, it would be cruel just to taper off now.

Heres my small brain again:

Fuck the fucking german health system, fuck all those uptight bigoted cunts that put the phone down on me this week, fuck my insurance for charging me since july and slyly adding it to my bill, fuck the man at the tk queue yesterday who aggressively shouted at me for talking on the phone with my sister, about my illness, at the first opportunity that day after a very strange experience with the gynaecologist.

Ok, 

I’m breathing, my small brain is retracting, lets continue a bit less aggressively now.

Health health health, we’re jumping back on the theme from last week, because sometimes illness doesn't go away, and as this blog is my warts and all document of the weird happenings of my life, I am going to be very very open about whats happening to me this week.

So I’m bleeding, like all pre menopausal women do who dont take contraception that inhibits it, thats what was happening in Paris, thats what has been happening for 3 weeks.

I’ve been bleeding for 3 weeks, yes.

I had really bad period pains last time round, which is unusual for me these days, I took buscopan plus, i soldiered on, then it stopped for a week, then it returned, light some days, heavier seemingly at the weekends. I pigheadedly pushed through physically exhausting weeks of cleaning, travelling, working, I’m a freelance cleaner, I don't get sick pay or holiday pay, I have to work or I can't pay rent.

I wrote a blog about it last weekend. But that was just before the blood clots starting coming, when the first one fell out it plopped in the toilet, I was so shocked I fished it out and curiously studied it (warts and all, I’m sick of skirting the weirdness in my life: its there: get used to it). I thought it was a dead baby, it was monstrous and displayed a horrid kind of plasticity as it eerily shifted round the jar in my hand I was gently coercing. It was an alien, more like rosemary's baby than my cherub cheeked nephew.

That was MONDAY.

I thought, ok the babies fallen out, now it’ll surely stop.

On sunday the bear got in touch, he'd been trying to phone, he was annoyed he couldn't get in contact, he was horny. I told him I was still bleeding, he insisted I go to the doctors, in his very forthright way, he sent me money to go even: because i was clueless about my insurance at that point. I knew i’d been getting letters I couldn't read from tk (die teckniker, german health insurance provider)  for months, since I stopped working at the hostel, but I’d just carefully ignored them.

I didn't have the money to pay for health insurance.

I botched my first attempt to see a gynaecologist, I made an appointment online but the transfer the bear made was not in my bank so he asked me to phone them and check payment methods. When I did the receptionist point blank refused to speak English to me, my quandary was simply, “Do I need cash today?” But she was haughty and unsympathetic, another colleague took the phone, who even through garbled understanding felt kinder but it soon transpired that my appointment was for November 1st not October 1st.

“Im very ill i dont think I can wait that long.”

I phoned Meoclinic to be told by a woman with razors in her voice who suddenly became sickeningly sweet after she’d told me it was €400 just to see someone. I felt like the pleasure she was deriving from me tripping over my words and despairingly saying that was to much money for me, was enough for her to take home and masturbate over later, in her silky agent provocateur corset, on silk sheets, with a flute of champagne on the bedside table.

I gave up for the day and decided that tomorrow I’d go to the doctors I went to for my sti test a few months ago, they were very nice. They spoke english, they had open appointments the next day at 18h.

TUESDAY

More clots started coming, big, gloopy, just pouring out of me, they were announced by a tirade of blood, I was soaking through organic pads at an alarming rate.

So that wasn't the baby on Monday then.

I went to clean first, I cant afford to not clean for reasons stated above, at an office where the woman who employs me talks to me through gritted teeth as if our every interaction is painful to her.

Lowly pauper girl, know your place.

Anyway due to logistical issues she had probably not envisaged, I didn't do the whole job and left early. I walked out on to the money lined streets of Uhlandstrasse, Cara Delevine’s svelte androgynous eyes staring out at me from various glass paned monoliths, and sat on a moth eaten bench, very upset from the shift, feeling utterly worthless, responsible and at fault, bleeding.

Then I had a cigarette, collected myself and went to tk: Round 1.

I waited, gushing out blood, in line for 25 minutes to see the receptionist, then a further 10/15 to see the sales girl. I dont have to pay them straight away but when november comes I will have to pay them 720+€ , plus from then on 180€ a month, from an average wage of 800€.

In retrospect I was probably fully within my right to protest starting the contract from July 1st, but I was so grateful for someone health related to be talking to me in English and perhaps it will stand in my favour now the hospital bills will be tallying up.

I left with no card or proof of insurance.

I went home, lay down, then showered, laced my trainers and went back into the world depleted, to Mehringdam to see the emergency doctors, it was raining heavily outside.

They were different this time, I had no proof of insurance but I had the bears money so I was paying cash, I waited dutifully and wrote in my diary.

It was a different female doctor, a more boxy and less vital woman than the previous medic I’d met at the same clinic. About halfway into my bloody tale of woe she stopped me panic stricken.

“You know this is a doctors surgery, you have to go to a gynaecologist.”

“Ok, so you cant help me.” - i start putting my coat back on.

A pause.

“Can you at least refer me to one? I’ve had a hard time trying to find a gynaecologist, I can't really speak German, people have been very rude to me so far, I came back here because I remember people were kind and tried to help me, even though I wasn't sure it was the right place.”

We go out to reception where I stand in front of 2 receptionists who speak in German and totally ignore me, the doctor hands me some measly bits of paper with contact details printed on them and hurries away. Shaken from my bloody tale of woe I imagine she just sits in her office for 10 minutes alone obsessively sterilising her hands and shuddering.

I continue to look at the 2 women in front of me who carry on as if I am invisible for a further 5 minutes, I tell them I’m going to the toilet and then coming back, they brush me off. More blood pours out of me. I return and finally they allow me to pay them, I plod back out into the rain and miserably wait for a bus, head home via the shops and climb back into bed.

WEDNESDAY

Is a national holiday, so I can't sort anything, my client offers me the day off, I take it. I make 9 drawings for my project, bounce the rough edit of the album I’m working on, pull myself to the dance studio I’ve started to rent to practise my live show. Have a long overdue singsong, though I can't really dance i can still sing.

Sunday edit: I’ve since missed 2 bookings at the studio because of this infernal bleeding, hope I can go back soon, it was utterly riveting to finally find a place I could sing as loudly as I wanted.

It's a glorious day even though blood still rains, I’m not cleaning, I’m doing what i really want to do.

THURSDAY

I need to be at my clients early, but I go via the apotheke on the way, there a pharmacist advises me on the best way to take iron and vitamin supplements, sells me ibuprofen and alerts me to the gynaecologist upstairs, but she’s only open till 13h, my job is supposed to finish at that time.

I hum and haa as I hobble to my clients and when I get there decide to finish the job early and see if I can get an appointment.

On the way into the building there's a system of doors, I enter alongside an elderly gentleman with a walking stick and we have quite the time not understanding each other, me holding doors for him, him very jovially propping them open with his stick. I have no idea what’s being said but something tender and wonderful is occurring between us that puts a lightness back in my step.

This reception is slick and clean, the receptionist is neat and elegant. But the doctor isn’t there. They wouldn’t accept my tk insurance anyway, they’re going on holiday till November.

Ok,

I leave and just flop down on the street outside, I’m supposed to be doing a double clean today but I have a 2 hour window before my next job, which is only a 15 minute walk away. I’m getting closer to seeing someone. Still crouched down on the street, still bleeding, I dig out the contacts handed to me, one is for a doctors I’ve called before. I call 2 numbers from the 4 sheets I have, both go through to hard voiced women who utterly refuse to attempt to speak English to me and relish the goodbyes they bestow before they coldly put the phone down. To the second one I say in English:

“I’m really sick, but if I don’t speak German I am just going to continue to be sick, is that what you’re telling me?”

I found a list on google, theres a male gynaecologist just up the road, a man rummaging in my lady bits is a bit disconcerting but truly I’m beyond pride now.

This reception is more modest, I place my cleaning bucket on the floor and then just start with

“I’m losing a lot of blood, can you please help me.”

He’s in.

These receptionists are gorgeous humans, they speak to me in broken English, they’re shocked I’ve been bleeding for 3 weeks, yes he will see me, please take a seat.

He’s a big warm man with no sexual energy, I tell him everything, I feel so grateful just to be able to see him that I’m bowing as I say thank you. I get sent to a little room, remove my trousers and knickers, get let into another room, climb on the chair, he inserts the spy camera dildo (ultrasound) device inside me, then on the screen we look at a ball like thing inside my womb.

Hes glowing when he tells me its probably a very early pregnancy, he’s so excited, though it’ll most likely be a miscarriage, but he paints a future where my little fetus determinedly survives the bloodletting and in 9 months time arrives in my life.

I cover everything in blood, which freaks him out.  

“You’re really bleeding a lot.”

He gives me the ultrasound photo, then after some confusion I go to the nurses and deposit a urine sample on the counter of another room.

“Thank you so much for seeing me.”

“Of course: you have been bleeding for 3 weeks.”

As I wait in the reception for the test results a new future, inconceivable before this point, rolls out before me, where I have the baby and take the government stipend to look after it as a single mother, I thought I didn’t want kids but something seems so precious about this vision. It’ll just be me and my little ball of love, together in some warm cosy flat in Prenzlauer Berg, surrounded by all the other Berlin mothers.

The test is negative, a jolt of dismay passes through me, the vision is shattered, I have to go to the hospital he says. They give me the bill, without proof of insurance I pay in cash, thanking the bear silently. He also tells me to go to my insurance and get a letter, because the hospital will really cost a lot.

So I go home, breathe and collect myself, go back out. Spend over an hour wandering around looking for a photo kiosk for my insurance card (not blind> I’m using google maps to try locate one), finally I find it nestled into a dark part of the s bahn station, it costs double what the machine costs but I just eat the charge, earlier I’d spend 30 minutes wandering around the crossroads outside Leopaldplatz: the fotofix on the map was apparently invisible, I need a picture. I then wait for another 30 minutes to have my photo taken.

When I get to the u bahn where tk is there is a fotofix booth right there, to my left as I walk out of the station, I really hold myself back from screaming and kicking over all the chairs arranged outside the cafe before me. I finally manage to call my sister and it's a glorious funny loving chat, cut short by the aforementioned man in the tk queue.

I tell him in english which he insists he doesn't understand, that I am having the day from hell and that was the first time I’ve managed to speak to that person, he abuses me again in German but then stands very far away from me, the shame weaving around him, I curse him, but its a little thing, just that I hope he gets eaten by spider babies.

Don’t take yourself too seriously.

I retrieve my letter from the receptionist, the same sales woman I spoke to on Tuesday who doesn’t recognise me at all.

It’s getting late in the day, I call back my sister and head to Charite Campus Mitte, as I get there it dawns on me this is where I was an extra on an art video shoot around 3 weeks ago.

There is no discernable entrance, it seems mostly deserted. I travel up in a lift towards the gynakolgie department, but when I exit the skybent box that is my vehicle there is no clear signage towards it, just a door to an emergency exit staircase, wind billowing behind it, with a note in fluoro yellow fixed on its metallic facade and a bridge / corridor leading to empty waiting rooms.

I give up, decide I’ll go to the address given to me by the doctors tomorrow. I’ll go home and sleep now.

Home, I eat then I crash, I get into bed at 19h, I’m still here its now 6am and I’ll try sleep a bit more before I get a taxi at 9am.

I’m scared

It’s like some sick version of the night before christmas, black humour and absurdity have been welcome companions but armour fades in bed, so writing this in the knowledge I will share it with the online community has been the only thing I can do to douse the fear.

I’ll probably have to beg receptionists later but I just hope I get to someone who can start to mend me, because the blood is still coming, for the first time since it started it stained my sheets last night but I’ve wiped them down a little.

Sunday edit: the sheets are now in the wash.

Saturday edit: they did see me, I’m having an operation on monday at 9:30, the saga continues because I have to rush back to the gynaecologists first on monday to get a note so I can be operated on : as by the time I got out of hospital on friday the gynaecologists surgery was closed and nothing is open on the weekends.

And on the anaesthetists form where it asked me who would be collecting me or looking after me for 24 hours after the procedure I stubbornly wrote noone. Though my mentor will be around as I swallowed my pride and asked her.

And, of course, I just expect more bullshit: that was my dads very astute advice:

“Expect more bullshit Felice.”

So then, yes I should speak German, yes I should of sorted my insurance, yes I’ve been irresponsible.

Saturday edit: I’ve been utterly irresponsible and disrespectful to the country I live in, I MUST learn German and make more of an effort to learn their culture, right now I’m truly an idiot abroad.

I might cancel all my jobs next week as well if I’m really sick, I might not be able to go to Krakow and watch Eartheater,

Saturday edit: All my jobs are cancelled, one of the days next week is my birthday, which I’d scheduled a double clean on so perhaps it’s not all bad.

But I’m not going to see Eartheater, if you’ve heard irisiri though ( LISTEN TO IT, I IMPLORE YOU, MORE THAN ONCE, on the first listen it’s quite harsh: https://alexdrewchin.bandcamp.com/releases) then you’ll immediately understand that not going to her show because I’m having my uterus forcibly wedged open and something cut out of it, is utterly appropriate, it’s like missing formula one because you got hit by a ferrari.

I hope I’ll be better by turin.

Saturday edit: very much.

I will still finish this project whatever happens.

Saturday edit: Now I have a week off it should help.

But I’m not 100% sure how I will make ends meet this month.

Saturday edit: Perhaps the polyp they cut out of me on monday is really an alien and I get paid hush money not to leak the story to the press.

I really miss the nhs, its a big soft Pugsy bear I just want to hug and hold and thank for everything it’s done for me over the years.

The german health system is an amalgamation of all these callous female receptionists, ignoring you and filing their niles whilst you just bleed out in front of them.

But still, I’m stubborn, its a test and i will overcome it whatever it is. I am not leaving berlin, I am standing taller, stronger and more powerful than before. I’ve experienced completely new angles and feelings this week, it’s been abhorrent but kind of sickly enjoyable as well. Life is always entertaining as it energetically throws its bounty of strangeness, cruelty and beauty (etc) at you.

It’s all good fun, even the dark days.

I’m going to try get a bit of shut eye now, might move my alarm back a little see if I can get 2 hours before i wake up to get a taxi.

Take care everyone, if you made it to the end then I guess thank you for reading as well, it’s a long fraught one this week eh?