UNDIAGNOSED DRAMA

Undiagnosed for 4+ years. Sharing my stories.

[undiagnoseddrama]

16. Good days and bad days...

So after wetting the bed, I went through a phase of waking up at 3am/4am or 5am for a toilet trip.

Bladder full and in pain running to the toilet half asleep - which I’ve been told can be really dangerous as your body is awake but your mind can still be asleep😴

Anyway, getting to the toilet as quick as you can is the only option because the fear of wetting the bed again is too much, so I sit on the toilet half asleep until the pain eases and I can get up and go back to bed. I try my hardest to ‘stay sleepy’ so once I’m back in bed I fall right back asleep😂

I need the beauty sleep.

That doesn’t always happen so there I am wide awake and then tired for the rest of the day because I’ve only had 6 hours sleep. Btw I need about 10 hours sleep and then a nap to function properly🤣

Even with a morning trip to the toilet, days are either a good day or a bad day and I have to just get on with it.🤷🏻‍♀️

Lots of people ask me “oh so how are you getting on with everything lex” referring to this. I just answer with good and bad days. I hate going through explaining it all. To anyone else, a daily burning sensation is horrifying and they’d be straight to the doctors but that is a pain level of 2/10 each day for me and it’s become the new normal so when I’m having a bad day it’s a 7/10 and I would not be sitting in front of them, where ever we are😂

I’d be in bed, probably crying, doses up on co-codamol to relax some muscles and take the pain away😢

It’s sad that that is the ‘new normal’ for me but I know when it gets bad and going to the doctors every time just really adds more stress.

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Once recent example was on my mum’s birthday (10th February 2020).

I was absolutely fine all day long! Having a good day! Driving home from uni to set up my mum’s birthday evening. I went to the toilet as soon as I got in and once again... BAM!💥 my body deciding that the night wasn’t going to be good too, can’t have it both ways.

I went from 0-100 in pain scale within the second, uncomfortable when I sat down to full hardcore pain after the wee. I was bent over in agony, I couldn’t sit down as the pelvic pain was too much. I took an ibuprofen to reduce the swelling, thinking it would help.

After we had our dinner, I took a bath and had to have a strong co-codamol this time as it was not leaving my body. I had pain just below my belly button, very intense pressure. It also hurt to touch my stomach because I felt like it was going to explode😑

In these situations I just have to let the painkillers kick in, relax as much as I can, hot water bottle on and sleep it off. Best solution in that moment as I don’t have any other options right now in terms of treatment.🤷🏻‍♀️

I had to listen to my body the next day and not go into uni. For my master’s I only do two days a week so it really annoys me when I have to take days off🥴

But my body was so drained from the trauma the day before and I found it hard to move about in my regular time too. I couldn’t get dressed quick enough, I knew I would be in pain driving and then not being able to concentrate just wasn’t worth it.

For the next few days I was drained. My side was hurting all day, I had urgency through the roof, pain when going the toilet, even having to run the toilet through date night in the pictures😑

My bladder hurts when it’s full and when it’s empty. I can’t ever pin point the burning down there it just feels all over. Stomach is swollen and the pain radiates from side to my hip and upto my bra line - honestly don’t catch a break.

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Flare time can fluctuate and sometimes lasting a week or two weeks. It honestly depends. That is a big one to explain to people because I may be standing but I’ll still be in a flare.

Then I went through such a good patch. Feeling generally okay in myself, still so tired in uni but good. ✌🏼

Then right back to flare time all over again.

I usually wake up in agony, bladder full and running to the toilet that’s where it typically starts, a rude 5am wake up call🤦🏻‍♀️

The symptoms build up gradually and then one really bad toilet trip flips the switch to where I need painkillers as quick as they come and I have to try every stand up/sit down position until I can ease the pain. Then I don’t move😂

It’s like a yo-yo, up and down constantly.

So yeah I just have good days and bad days. With probably a lot more bad days than the average person but I’m still alive🙌🏼 Then thankful I have more good days than what some people get too.

Until a miracle comes around the corner I just have to keep up with my supplements, dietary restrictions and see what works for me🤷🏻‍♀️...

[undiagnoseddrama]

15. I wet the bed...

2020 started off just the same, never mind new year, new me. I was still tired, out of routine, uncomfortable, swollen and in pain, literally nothing new. Positive vibes and all haha.

07.01.2020- I decided to go DAIRY FREE🐄. I have read a lot of information on how milk and other dairy products can affect your bladder health. I decided to go full hog and not have milk or chocolate in my diet for the foreseeable future. This was going to be hard! im the biggest chocoholic ever.

I did this though at completely the wrong time! It was exam season, so super stressed and this is the time when I need all the revision snacks I can get. 😩

I was also still on Hiprex and burning everyday.

Three days into my dairy free venture and I had my first exam of January. I had felt funny since I woke up that day, got to my exam and my friends were just saying "You're nervous Lex, you'll be fine." I don’t get nervous for exams like ever so it was not okay.

The nausea was like hell the whole time,🤢 right through my exam. I knew if I went to the toilet in the exam, I was bound to throw up and would not make it back. I had to hold it in for as long as I could. I drove home, got in and sat for no longer than 5 minutes when bam the first wave hit me. I ran to the toilet and 🤮

This then continued for the next 10 hours straight till I had nothing left to give. 😩 I was so bad, I just had to have a sick bowl next to my bed as I never had the energy to lift my head up off of the pillow, never mind get to the toilet.

Each time I threw up, my whole body spasmed, including my bladder. Each time I threw up, it was like someone through a firework up my urethra, burning, shooting shocks everytime. I was in agony, my whole body felt like it had been ran over and set on fire. The pain was too much.

Mainly because of the throw-up session I stopped taking Hiprex because the burning was too much! I had another exam in 4 days where 2 of them I was zoned out and couldn’t focus! You wonder why I failed it🤷🏻‍♀️😭

If this was the side effect of tablets I was fed up of taking them and it had only been 6/7 weeks😭 This meant it’s starting to tarnish my life, my goals, my future. The thought of having to take them for the rest of my life or whatever was a no go!🙅🏻‍♀️

In other news...the burning had eased because I hadn’t taken the Hiprex tablet! Over the next few days I hadn’t had any symptoms at all! Heaven🙌🏼

22.01.20- I decided to try again and take Hiprex. I knew I couldn’t back to the urologist and say I gave up! It probably wasn’t the best day as I was feeling a bit off down there, especially when going to the toilet but I had to give it a go!

The next day was D-Day😑

23.01.20- I woke up and wet the bed🥴

YES I WET THE BED!

In my sleep I was having a dream that I really needed the toilet and couldn’t get to one - life story😒 - anyway once I made it and sat down (still in my dream) the toilet I was sitting on started lifting up from the floor with a green smoky light coming from underneath like in a club!

I’m half asleep at this point slowly waking and I thought oh what’s that?🤔 I woke up wetting the bed🥴

Dan was next to me in the bed and I was mortified! He’s seen a lot but wetting the bed was a new one😭 I screamed at him to move quick, get out of the bed and I ran to the toilet. I didn’t make it and had to wee through my knickers sitting on the toilet. I was so embarrassed and Dan was so calm about it, he’s like “it’s not your fault I know you’re not well.” If that’s not goals right there, ladies you’ve got the wrong guy🤷🏻‍♀️😂

But that was not the point. This meant I got to an all time low with my bladder😩 As I had burning for quite a few days before this I decided to take a sample in the doctors to double check no infection was present etc. I cleaned myself up threw on clothes and out the door.

I’ll be honest I’ve had other times like this, where I have been running to the toilet (you get no warning!) And it’s a little trickle before you get there. I thought that was embarrassing because I’d have to try and dry my knickers a bit before going on but this next level and a big down point for me! So glad I was at home🙏🏼

My bladder felt so heavy and I was stinging all over. They rang me back later that day and said I was all fine! So what the hell caused all this someone please tell me🤷🏻‍♀️

I was 21 and wet the bed...

[undiagnoseddrama]

14. Being in the 2%...

So alongside pregabalin I was given Hiprex 1g (methanamine) which is an antiseptic medication to prevent infections rather than treat them. This was to give my bladder a break from the trauma of further infections and hopefully the nerve pain would go away at the same time. The thought behind this was the trauma keeps my nerves ‘switched on’ and the pain is radiating to my side. They had no other explanations🤷🏻‍♀️ (Keep in mind I still have a calcification right in that exact spot as far as I’m aware- every doctor says it will not cause me pain but if calcifications are in your kidneys, they’re kidney stones and excruciating, in the lungs or breast, meant to feel like a heart attack🤦🏻‍♀️ Next to your lymph nodes lex, they’re painless of course) this calcification may be totally unrelated or as a result of all the antibiotics I’ve taken - who knows at this point✌🏼

The ‘give the bladder a break thing’ has not happened so far, just so you know.

Anyway, through the rest of November and start of December the pain when I would go to the toilet, increased. It started off as uncomfortable then to burning, with such a swollen stomach. The bloat was unreal.

This would also happen in work. I got to a point where I was shaky, sweating with the pain and had to walk it off around work when I just wanted to sit down😩 This is probably one of the hardest parts because it’s not like you can see an injury on me. You can’t see me limping with a sore foot or a cast on my arm. A lot of people can’t even relate because so many people have never even heard of IC (interstitial cystitis) and so many girls haven’t even had a UTI before. When it gets brought up I have to explain my life story which I don’t mind to educate people but can be frustrating when it’s not as commonly known as other conditions.

Most people can’t even see I’m in pain until I’m curled over a table or tell them and even then they say “I wouldn’t even know.”

Through all of this it made me more compassionate and considerate towards other people who don’t choose to share their conditions or struggles. They could be in agonising pain on the inside and still not tell you. Where the littlest thing could send them over the edge into tears or tantrum and you’d just think they’re ‘over-reacting’.

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12.2.19 - Dan and I took a trip to Gran Canaria. Finally some chill time during my christmas break from uni. Travel can be a hard choice. I crave holidays but a lot of preparation goes into it, prepping for all of the possible circumstances that could happen.

I take several different pain killers for my pain scale, as I don’t take pain killers everyday they usually work when I need them too so I try to take lower doses of cocodamol or even take a paracetamol if I can so when I’m in PAIN PAIN they can kick in for me!

I also take a small supply of emergency antibiotics. If I feel it’s an infection and I know the difference by now, I will take these whilst trying to get a doctors appointment. Obviously this can be difficult abroad and having to explain everything is hard so having antibiotics can be a big relief to prevent added stress onto my body in that time.

This holiday thankfully I seemed fine! The airport is usually the trickiest part as there is not always quick access to a toilet between queuing and boarding then having to sit for takeoff for about half an hour before you can take your seatbelt off. They’re the crucial times, so I go as soon as I can!

Day 3 into the holiday and the pain in my side had kicked off because we spent all day walking. Before this I had nothing, it was a dream! I then had a couple bouts of pain and twinges in my bladder. One episode we were in a village in the middle of the Gran Canarian mountains and I went the toilet in the little tour restaurant. It hit me and thought this is the worst time for any of this to happen😩 we’re still on this tour, no taxis up there and I had the tightest denim shorts on ever! Which is not good😂

I took an ibuprofen I had on me and after 20 minutes of pacing it eased before we had to get back into the jeep🥴

Honestly hits at the worst times.

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Christmas 2019 had then passed once we got back, I had discomfort across the whole time, swelling, tiredness and irritability.

27.12.19- I woke up and had to run to the toilet, these are scary moments because you’re half asleep, stumbling to the toilet whilst trying to hold your wee in🥴 I had such a painful wee and had to jump into the bath for some relief. I had noticed also when my bladder is full or ‘re-filling’ I can feel my bladder wall cells almost burning alive😩

It hadn’t been this constant for a while and the only difference was the new medication.

I decided to reduce my Hiprex tablets to just one a day and see if this helped.

For the rest of 2019, the burning had eased so much especially when sitting on the toilet. I had seemed to have no side pain which may have been attribute to the pregabalin also.

I looked into the side effects of Hiprex and only 2% experience the added burning and pain when going to the toilet. It was great I had to be that 2%🤦🏻‍♀️ The tablets which were gonna give me a break wouldn’t let me catch that break!

I spent New Years Eve and New Years Day in work so I could have around Christmas off, so that was definitely a chilled one😂

2019 was an amazing year for me, with my graduation, 21st birthday, visiting beautiful countries and a 5th year with my amazing boyf😘 I got through tough times and came out the other side💪🏼

My New Years resolutions decided to be the year of answers🙌🏼 I was going full research head into conditions and pushing myself out there a little more! Or at least stepping in that direction...

[undiagnoseddrama]

13. Officially undiagnosed...

So over September and October of 2019 I suffered bad with pain in my side, horrific symptoms, bad pelvic pain, having to take cocodamol IN WORK! Which I absolutely hate doing😩 Having extreme 4/5 day flares, getting back to normal for 1 week and then flaring up again! This cycle continued and wasn’t pleasant for anyone.

I also went through a whole ordeal of getting a sample to the doctors has to be before 11am as well, because I had an intense four days which I thought was an infection. Waited for the results and when I had gotten over the worst of it the doctors rang me and asked me to do another sample because the lab had ‘lost’ it🙄 So I was waiting for results that were never coming. My it was an infection and my body naturally fought it but when I notice the difference in symptoms I always give in a sample because it is not worth the risk waiting and it spreading.

28.10.19- finally my urogynae 6 month follow-up appointment switched things around!

This consultant was the one who runs my clinics. So basically in the UK, your GP refers you to the hospital. I’ve been to the different departments in different hospitals in Liverpool, England. So now I’m at urogynaecology. You are admitted as an outpatient to one consultant clinic which only runs around 2/3 times a month. He then has his team who take the appointments. Every appointment I have seen a different doctor. I don’t have a specific doctor where I can ring them up when I’m bad, this doesn’t happen not yet anyway! I would love to get to that point where I have a doctor who knows me really but unfortunately that’s not the case.

I have to re-explain my story every time in that 10 minute slot. That’s hard to do, fit 4 years into approximately 2 minutes before they interrupt you and usually they get a pen and paper out and draw a set of kidneys for me.

I know they’re explaining things to the ‘lay’ person but it can be so patronising when I’m halfway to being a doctor myself🤣 *insert hair flick, boast moment* I understand the anatomy, I can tell them in detail how the drug they’re going to give me will affect my body, where and how they work which most doctors can’t do because they don’t need to know. Therefore a kidney diagram feels like primary school SATs class😂

Anyway...RANT OVER!

So I finally got to see Mr Trochez, the head consultant. He actually listened to be fair and after telling him I had seen the pain consultant in the Walton Centre, which is renowned for amazing neurological care, his ears pricked up! See in the NHS they cannot see results from other hospitals based on a data privacy setting. So basically they have to take my word for it.

He started to think about nerve pain and how my side pain might actually be something for a change and the fact they may be connected once I had mentioned the pain consultant said it must be nerve damage and there is no other explanation.

See a lot of doctors say to me are you here for your bladder or the pain in your side? I said well both🤷🏻‍♀️ I think they’re related🤷🏻‍♀️

Some doctors in the past have told me they only have time for one so pick one!🙄

Obviously my bladder has a greater impact on my life so my side pain, even sometimes exhausting, gets forgotten about.

So this time he had no answers, he turned around and said I will have to officially call you ‘undiagnosed’ and see what medications will help your symptoms rather than finding a solution.

So he prescribed me Lyrica (pregabalin 75mg) which targets neuropathic pain, hoping to work on my bladder pain but he said it may benefit my side too.

He also gave me Hiprex (methanamine) 1g which is an antiseptic medication to PREVENT urinary tract/ bladder infections. To give my bladder ‘a break’ and hopefully heal, which in turn, would solve the nerve pain. He said trial these for 3 months and come back to me and we will go from there.

Once this happened I had to make an appointment with my GP to get the medication approved. This took almost four weeks to get an appointment😩

In this time, undiagnoseddrama was born🙌🏼 I felt like I needed to share my stories and hopefully one day be a platform to share other girls stories about living with conditions like mine which are totally unexplained and unanswered😘

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21.11.19- I started my meds.

Hoping this was some sort of relief and miracle cure was being optimistic🤦🏻‍♀️

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That first week was kind of hell.

You have to build up pregabalin, 1 a day for a week then up to 2 a day. The side effects of the first week made my side burn and ache more than its ever done before. It was so bad but I knew sometimes it has to get worse before it gets better! I also had such a dry mouth but after taking the meds for a while this has gone!

I was also super tired and zoned out. I haven’t even had any strong medication, cocodamol has been the biggest one for me so this felt weird!

There were days were I would fall asleep in uni and then when at home doing work I would fall asleep again, with books around me and lights on. Two naps in a day is excessive.

Trust me I can nap anywhere. This happens almost everyday. It is an achievement if I’ve went through the day without a nap. I wish the world would fit around a nap in the day. Siesta is essential🤣...

[undiagnoseddrama]

12. When the boyfriend knows best...

So the few months remaining in 2019 were hit and miss. My ‘freakout’ episodes were becoming more frequent which is just more debilitating, draining and frustrating.

01.08.19-04.08.19 I had the usual symptoms. Pain in my side, burning going the toilet and uncomfortableness during the day.

On the 4th August I had a ‘freakout’. Woke up went to the toilet and it began. My mum witnessed this one and it was at probably the worst one she had seen. I was a mess, pacing back and forth and had to call work to phone in sick because it was so intense.

The thing is the day before I was in work just fine, okay hiding my symptoms, but to them I was good. I hate ringing in sick and never do it unless I have to! This would’ve been a time where I would’ve been curled over the tables and would have to be sent home anyway so what’s the point of going in🤷🏻‍♀️ work is so understanding with everything, I just hate letting people down, especially with such short notice.

The pain over them past few days was concerning too, building up to this. I had gotten antibiotics off the doctors, sent through to my chemist, just to make sure it wasn’t an infection. They know that I know the difference between a flare and an infection so my GP is more than trusting😆

I was given Cefalexin 250mg for 7 days.

So this was the first freakout.

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09.09.19- This night was my biggest freakout to date. This day changed my perspective on my condition A LOT!!

So the usual situation of going the toilet and BANG! It hits you like a ton of bricks! I can’t function in any capacity! I feel like I need a wee and nothing will come as well as needing a poo and again nothing is there...

The fear of getting off the toilet and standing up leads to a fear of everything falling out of you. I know that’s too much information but that’s how I describe it. My bladder or womb is not prolapsed just to make that clear, everything is tight, maybe even too tight yet it feels like it could fall away and I don’t understand what causes that feeling!

This is the scariest time because you’re in so much pain your mind cannot focus on anything else but at the same time it is the point where I overthink so much!

What did I eat? What did I drink? Will this pain stop? Why can I feel my heart beat in my vagina?🥴 Why is everything throbbing, pulsating, stinging, burning? You feel like you want to pull everything off you? Could I actually do that? There is no stopping the overwhelming feelings.

Sitting down is too painful but I’m too weak to stand up and it’s never straight upright anyway. My body completely hurls over in pain and I never realise I’m walking like that.

Dan was trying to comfort me as I managed to sit on the bed. I was panting and crying and begging him not to tell my mum because she just worries. She was downstairs btw.

I sat in a child’s pose yoga position on the bed. Rocking. Like a mad person. Then I would get up because I was too uncomfortable but the shooting pain up my urethra when I move was debilitating, like a blade of fire slicing my insides.

Trying to explain this to someone who has never experienced it can be torture too. I never want to boast saying “You don’t know my pain,” because everyone’s pain is valid and described in a different way and felt in a different way yet this was next level.💯

I took an ibuprofen right before it got to the 15/10 pain level and it wasn’t working.

More pacing, more panting, changing every position I stood and sat in until I felt comfortable.

When I say I can’t sit down. Imagine sitting on a rock right in places where it shouldn’t be😂 then imagine the uncomfortableness, then imagine it’s on fire and paining your insides yet you’re petrified if you move off that rock it’s going to hurt you more. That’s what sitting down feels like in this flare state.

I took a cocodamol around 20/30 minutes into the episode because I was at my wits end. Obviously it doesn’t kick in straight away but I need at least the placebo effect that I had something in my body that would take the pain away as you feel like it will never end! There is no way to get inside your body and press/soothe/calm a pain inside your bladder.

I got back onto the bed and on my knees to put my head into the covers, like how baby’s sleep sometimes. This was the most comfort I had felt. I breathed into the quilt until I had no more energy left and laid on my side in the foetal position.

Dan did everything he could. Tickled my back, ignored me for a minute when I would snap😂🤦🏻‍♀️ played with my hair, gave me water. Distracted me with a video. Stayed silent because sound vibrations in the air triggered my pain😂 Whatever he could he did because everything else was helpless.

I closed my eyes, stayed as still as I could, even someone sitting on the bed can trigger another shooting pain, until the cocodamol kicked in and I could nap.

Dan said to me he had not seen me like that before in the whole time of these episodes. He said it looked like I was having some sort of panic attack.

This shocked me to my core.

I thought a panic attack was being in a situation you didn’t want to be in and stressing that much you start to get hot, dizzy, hyperventilate to the point where you can’t speak or control your breathing.

I could breathe fine, I was just in pain. Just.🙄

He said even though you could breathe, you was panting, not staying in one place, crying, acting so bizarre he said it was some form of attack, panic or not. You had no control over your body.

This changed my view on a ‘freakout’. Was I that caught up in the fear that the pain wouldn’t stop that it caused my body to go into overdrive until something as strong as the tablets stopped everything and relaxed all of my muscles.

That was the scary part, having to rely on that tablet working, calming my body, for that nightmare to end...

[undiagnoseddrama]

11. Do you need an ambulance?...

So after the freakout episode in Berlin a couple of months went past - so I’m going to tie these all into one.

Throughout the month of March shortly after Berlin I noticed the pain in my side amplify more. It was there on a daily basis! I had a lot going on with uni, final year, exams, dissertation etc, so whether it’s stress-related I’m not sure but I found the searing, burning, aching, tenderness there most of the time now. It had kicked up a notch since my episode/flare.

29.04.19 - another follow-up appointment at urogynaecology. So I had been on cefalexin antibiotics for 3 months and hadn’t noticed improvements, I had the episode in Berlin, still had uncomfortableness most days and I hadn’t gone 3 months symptoms free, which they expected. The consultant I saw was a trainee consultant so even though he was already a doctor he was new to this type of investigation. After discussing my life all over again for 10 minutes, he palmed me off with ingesting more turmeric into my diet after noticing I had previously tried D-Mannose and cranberry juice. He said he would see me in 6 months with having no antibiotics and just focus on lifestyle choices.

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I had finished uni, went on an amazing girls trip with my uni girlies and throughout the whole time I was FINE! Not amazing but fine! Obviously there was some uncomfortableness and the pain in my side doesn’t count as fine anyway haha😂 so skipping these boring ‘good’ times.

This does show stress is one of my major factors though! Doctors have told me to reduce stress but with uni and work this is physically impossible!🙄

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29.06.19 - I travelled to the cotswolds in the south of England for my cousin’s wedding. I was panicking at the thought! The last wedding was hell so I mentally and physically prepped everything I could to avoid an episode.

It was the night before my 21st and I was loving life, I was surrounded by all my amazing family, dressed up and went for a lovely meal with my best💖 I also found out my brother and sister-in-law were having a baby! A little miracle✨

30.06.19 - My 21st!💖✨🎉💖✨🎉💖✨🎉💖

I woke up with gifts, cards and champagne what more could you ask for! Then had to get ready for my cousins wedding in the countryside!

I had felt a little on and off all day, some uncomfortableness but I was not letting that stop me I was 21 so the party began! Including cutting my foot on broken glass I didn’t even know happened but hey ho😂 P.S. a lot of birthday shots were involved.

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02.07.19 - So after a weekend of celebrations, my body gave me a big telling off!

The pain in my side became unbearable I say around a 7/10 compared to other pain I’ve been in before, however, I was struggling to breathe because it was in my back, radiating down to my hips all on my left side. The pain was hot and searing and became really uncomfortable.

04.07.19 - So the pain in my side had been there for 2 days straight! Something didn’t feel right at all😭 I got an emergency GP appointment and completed lots of different tests. All clear. I went to do a fresh samples for her, fine beforehand but going the toilet made the pains worse all over my

body to the point I had to stand up for the rest of the appointment. When she examined my abdomen she pressed my side and I almost shot off the bed in agony😩 she suspected I had kidney stones and wanted to send me to hospital straight away.

She rang Whiston hospital which is closest to my doctors and spoke to an emergency ward but not A&E🤷🏻‍♀️ I thought this meant I was seeing a doctor straight away rather than sitting in A&E. Whilst this was happening I was pacing the floor😖 She printed off the sheet including the details and a letter from her and then turned around and asked me “Do you need an ambulance?” She was not convinced I was okay.

I immediately said no, even though I was in so much pain I thought it was a waste of resources, someone else might need that before me! So I got in my car, rang my dad (so my mum wouldn’t freak out) and drove to Whiston hospital😑

It was a painful car ride. I eventually managed to find the ward, halfway across the hospital and checked in. Sat in a tiny waiting room and actually began to cry in the corner, trying to avoid anyone looking because I was in so much pain and didn’t know why😭

My phone also died, I had managed to text my dad the ward before it did but it felt like a lifetime before he arrived.

He eventually found me and we waited for the ‘appointment time’ 5:40pm bearing in mind I got there at 5pm because I just drove straight from the doctors.

We were seen at 12am that night.

I wasn’t given any pain relief in this time, I vomited 4 times with the pain, paced the floor a thousand times, sat down, stood up etc etc, until we were the last ones in the waiting room and my dad went to the nurses station to ask for some pain relief immediately.

A nurse came back and said they will have to wait but to do a urine sample and blood while we wait, this could’ve all been done in the time I was waiting😭 She took my bloods in that waiting room of all places and eventually the registrar doctor saw me. She was the only doctor on shift between this ward and A&E so she had to prioritise cases. Literally shows how crippling the NHS is.

The whole examination all over again, I actually near hit this lady when she touched my side with how much pain I was in, again jumping off the bed. A nurse also came in at this point to give me two cocodamol to take to ease the pain.

She sent me for x-ray to check for kidney stones, because I’ve had too many CTs, whilst they waiting for bloods. The x-ray was downstairs and literally took two seconds!

Back upstairs to wait and the cocodamol started to kick in😍🤪 I have never had this strong of a painkiller before. It was heaven😍 I could feel the pain slipping away from me, absolute bliss🤣

The doctor said I had some constipation after the x-ray results came back and could not see anything else. She said even though it does cause pain she was not convinced this was the ONLY reason for me literally jumping off the bed in pain and I had been the toilet that day too🧐She also said I couldn’t be constipated every day (I’m quite regular💩) so still doesn’t explain the pain I have.

Because I was under investigation at the Women’s they gave me the choice of either staying in overnight to do extra tests in the morning or come back and get an ultrasound to check everything else.

I was literally waiting with people who were just waiting for a bed on this ward. Again I was not going to take advantage and waste resources so I just came the next day for an ultrasound.

The ultrasound was one of the most painful ones I had as she made me roll one side to the next to try and find something. Again all clear😭

I had to go back upto the ward to wait for the results, literally another 4-5hours. I exclaimed to the nurses I’m not waiting for you to tell me the same as what the sonographer has just said. She said if I left, that’s discharging myself and I wouldn’t find out either way.

So we waited and the doctor saw me quickly because they knew they had nothing to report. She said I may as well wait to see what the hospital finds and just continue with the pain medication and laxatives they gave me the night before. (Cocodamol 30/500mg, Ibuprofen 400mg and Movicol satchets)

This was such a weird couple of months and long 24 hours but just shows I don’t make it up, the doctors were not convinced, sending me to hospital and wanted to investigate further but couldn’t find anything🤷🏻‍♀️...

[undiagnoseddrama]

10. My first freakout...

So after the cystoscopy, I did have some bleeding when going the toilet etc and but overall I thought I was alright and recovering well.

In January of 2019 my boyfriend (Dan) and I had booked a trip to Berlin. I knew I needed to get myself well and good for it! So after my cystoscopy, I rested rested rested and finally needed this break away!

21.02.19 - I was in uni the day before our trip away and had to run to the toilet mid lecture. I felt some uncomfortableness but nothing too major so thought nothing of it.

22.02.19- we were away! About to stay for three nights in Berlin, sightseeing, exploring having a well deserved adventure. Everything was fine!! Just before we were about to land I needed a wee desperately!!!! I was about to get up and go and they switched the seat belt sign on to land. This meant about 30/40 minutes before getting anywhere near to a toilet🥴

The plane landed and instead of running to the back of the plane to go, I thought I’d wait until we got into the terminal to get to the ‘better’ toilets. Well I was in agony, have to stand up for so long on them ‘cattle’ terminal buses with no seats.

I saw a toilet sign as soon as we got in, practically abandoned my bags with Dan and ran for my life😂 One of the longest wees of my life! The pressure relief was heaven! This is clearly a sign of my overactive bladder creeping in here, urgency was unreal! The rest of the day was fine after this.

23.02.19- I woke up in Berlin the first full day and I noticed blood in my knickers when going the toilet and when I weed. I thought crap, the cystoscopy has damaged something, something else is going on etc. because I knew I wasn’t due on.

The consultant said that this might happen when taking the antibiotics for a long time and my pill might make me spot in between periods but not to worry.

Myth debunker side note- typical antibiotics don’t affect your contraceptive pill, as thought in the past. The only antibiotic which affects your pill is rifampin (Given for Tuberculosis TB and meningitis) just incase anyone was ever worried, especially having to take so many antibiotics all the time. Other types of medication or side effects like vomiting can affect the pill so always check with your GP👨🏻‍⚕️👩🏻‍⚕️

So I put a little panty liner on to be safe and went exploring the capital. Totally recommend Berlin btw. I’m so glad we squeezed so much into this day, we went everywhere clocking up around 20,000 steps in one day as the next day wasn’t as fun!

24.02.19- the next morning was my first ‘freakout’.

I woke up, got in the shower and when I weed in the shower the intense pain/symptoms came😭I thought this was karma for having a drink with my dinner the night before and holding my wee on the plane😩

So I ran a bath, which usually calms everything and sat in it for a while. I still had all my symptoms pain, uncomfortableness, feeling like I was going to wet myself, so much pressure on my bladder etc.

I got out the bath and sat on the toilet for a while. Went through the whole regime of up and down, on and off the toilet. The pain was not going away at all! It felt like a fire inside me, stabbing, burning everywhere! There was not a pinpoint area to which I could locate the pain, just all down there, everywhere!

I was pacing the hotel back and forth and couldn’t stop panting with the pain, I had clothes on and then off, laying the bed, sitting down, standing up, crying, saying to myself “why now?!”, back to pacing the room over and over again. Debating whether to stay in the hotel room or just go out and suffer?

A couple hours had passed by this point and our early plans for day 2 in Berlin had to be on hold😢 I eventually managed to get some jeans on to hold everything in, took a deep breath and had to bear through it because I didn’t want to waste our last day on our little trip.

We went to the zoo and waited in the queue for quite a while😩 when we got through the gates and looking round I was in pain the whole time. I immediately needed a wee there and then and had to actually run to find a toilet. This is me all the time, I don’t know the difference between needing a wee - which I could hold till I got to a toilet - and then immediately having to go the toilet there and then before weeing myself😑

After going the first time in the zoo, I felt so much relief, still uncomfortable but better. Managed to get on with the rest of the day around the zoo slowly and some other attractions making up for the rest of the time in Berlin with my Dan❤️

I stressed out a little bit with the return journey on the flight too just because of the time you’re restricted to go to the toilet but I was all good, thankfully🙌🏼

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For the following week, I had the uncomfortable symptoms, running the toilet, pain etc. My mum was convinced and still is that this time and the ‘wedding’ episode was me passing kidney stones because people have described the pain to be similar. Still to this day I will never know because how the hell are you supposed to catch the kidney stones when you don’t know they’re coming? 🤷🏻‍♀️ They also never find them on scans etc. and I’m not allowed to get anymore CT scans now so will never know! Interestingly, the consultant at my cystoscopy said to me that the stones I may produce would never be seen on a CT they’re too small and would easily be overlooked.

Struvite stones can be different to calcium stones that usually make up ‘typical’ kidney stones and he said they would only be seen with a camera inside my kidney but then again, how and when would we know they’re there?🤷🏻‍♀️...

[undiagnoseddrama]

9. To go where no one has gone before...

So a cystoscopy was booked. A cystoscopy is an endoscopy of your bladder, basically a camera through your urethra to diagnose conditions, investigate etc. There are two main types of cystoscopy; rigid or flexible. Flexible scopes only requires local anaesthetic. A rigid cystoscopy requires general anaesthetic and different instruments can be attached for surgical removal etc.

First of all I had a pre-op. 14.01.19. The usual blood pressure, urine sample, consent forms etc. I had to see a nurse about the risks of the procedure and she said “Right you’re getting bladder Botox procedure and a cystoscopy.”

I was like hell no!! I haven’t agreed to this! I had a look at my notes the consultant had written and it said cystoscopy and Bx. Bx in medical terms means a biopsy. This is where they scrap some cells for further testing. Good job I checked because otherwise I’d never be able to pee with the Botox going on🤣 (usually for severe overactive bladders). I think I embarrassed the nurse a little but you definitely have to be aware of the procedures they’re doing, you have to be aware of your health. Research is key! 🔑

She explained what I might need to bring with me to the hospital; dressing gown, slippers etc for the time in the ambulatory suite - a new department in the Women’s so you don’t have to be under general anaesthetic for these procedures, you’re in and out and can recover at home instead of staying in hospital.

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01.02.19 - D day.

I had to be at the hospital quite early in the morning and mum wanted to stay with me the whole time. We got called in and my mum wasn’t allowed into the suite with me😥 I think she was a little more scared than I was. I was quite relaxed because I thought this would be give me some answers finally!

I went into the room with my bag of tricks and sat down on a ‘blue’ chair (significance of this will come later😅). I sat down next to other women, mainly older than me which can be quite daunting too and just began lightly chatting whilst watching the TV. The women were all in there for different reasons not all cystoscopies.

The nurse called my name, explained the procedure which again they got wrong! She said so you’re here for a cystoscopy of your uterus. Well no, a cystoscopy first off means in the bladder only and I couldn’t understand why they don’t read the notes properly it’s scary how wrong they could be! I corrected her and said it’s my bladder and a possible biopsy. She just gave me a dirty look in disbelief.

Sorry to the nurses who I have embarrassed or insulted but I have to make sure it’s right🤷🏻‍♀️ She gave me a hospital bracelet and them hideous gowns. I got changed, knickers off, the total gross part, put on the dressing gown to match the other ladies and my slippers and went to sit on a ‘red’ chair this time. This meant that was it, you’re on your way. We were all lined up like we’re ready for the slaughter house🐄 👍🏻

We sat patiently till our name was called into the side room, consisting of a desk, a bed, multiple surgical instruments, two nurses and the consultant ready to go down under😫

I sat down first and discussed my condition what they’re going to look for and the procedure. I also weirdly begged for pictures of my bladder as I wanted to see and record it🤷🏻‍♀️ he said I couldn’t take a picture of the screen but the images that go in my notes I could take a picture of so all good!

I laid down on the bed, feet in stirrups and took a deep breath🙈 he sat on the stool cleaned the down below area, with what I presumed was some surgical wipes and then said he’s ready. First of all they fill your bladder with a saline solution they do this using a catheter. The nurse beside me told me to grab her hand. I looked and did. I knew this was going to hurt.

So in it goes. Up my urethra. The instant feeling, I’ll be honest is horrific, an instant wave of feeling sick, I almost asked for a bowl🤢 They told me to pant and breath through it as if I was in labour. I could feel it move every inch into my urethra and then into my bladder. It was then an instant feeling of needing a wee, I panicked a little thinking I was going to wet myself😩 but this was to expand my bladder so it could be seen on the screen.

He pulled out this catheter and the rest of the fluid poured out all down to the floor. I’d thought I’d wet myself but they reassured it was just excess fluid when the tube was removed.

He then grabs the next tool, the cystoscope. My one was flexible, hence the reason I was still awake! So in he goes again feeling the tube move every inch up into your bladder, once it reaches the bladder you get instant relief, actually it’s more comfortable there, if that’s even possible in this situation.

I took my mind off things by looking at the screen. What other time do you get to see the inside of your bladder I was fascinated😏

He never noticed anything malicious, no growths, no reason to take a biopsy. He did find trepidation lines - five of them - which indicates early signs of an OVERACTIVE BLADDER. In your 20s you shouldn’t have any at all! Older ladies and men will have several lines, especially if they overactivity. See the image below!⬇️⬇️⬇️

He checked both my ureters which lead up-to my kidneys. Both looked fine! I then asked what are the red things floating which at first he didn’t notice.

He took a picture and they’re floating blood clots, either from past infection, kidney stone production where blood from the surrounding tissue and then led to my bladder, he had multiple reasons but couldn’t give me a definitive answer.

Interstitial cystitis was not on the cards, he found no signs, so I felt like all of this was a waste of time😭

He took everything out, the nurse dried all the areas, took my feet out the stirrups and then told me to stand up slowly as everything might feel weird.

I sat back on the chair, dressing gown on and talked to the consultant. He prescribed me with 3 months worth of antibiotics (Cefalexin 250mg) as a prophylaxis so my bladder could recover from infections.

He also advised bladder training. So out of caffeinated, fizzy drinks and alcohol only have one a day. Obviously this can be hard if I’m going out, busy day and purely forget but I do try!🥴

I took pictures of the bladder images he took. Left the room and went to sit back on my red chair.

Everything felt out of place down there. I remembered I urgently needed a wee and went to the toilet and to also put some knickers back on.

I expected a scene from Carrie with blood everywhere but for me it was okay. The stinging was there and uncomfortable feeling after but nothing too malicious.

I sat back down, got given one cefalexin to prevent any infection and a tea with biscuits for some energy. The nurses were all lovely during the procedure and very comforting afterwards, some of the women came out white as a sheet, horrible to see them before and after.

I had to sit for half an hour before they took my blood pressure. The nurse called me in, took it, hesitated and said I might have to stay for a while because it was low.

I asked how low because naturally I do have low blood pressure. I have been dancing since I was 4 and the sort of ‘athletic’ element of that as they call it, reduces blood pressure. She was annoyed by this as it wasn’t in my notes before, but I said it wasn’t my fault🤷🏻‍♀️

I was free to go, collected all my stuff, walked out of the suite, awkwardly I felt, and back towards the main waiting room, to see my mums face light up when she saw see me. She genuinely ran to me to get my bag and help me walk.

I was fine, I could walk just everything felt in the wrong place, like they he muddled it all up.🙈 I was exhausted to be fair and we just waited till my dad could pick us up.

We went home, I fell asleep and recovered for the week with some paracetamol and ibuprofen to reduce any swelling.

I experienced some bleeding generally on my pads during the week and definitely when weeing. It just felt like UTI symptoms. The aftercare was just rest really and I was bag to myself in a few days, the ‘everything out of place’ feeling did stay for about a week or so but eventually got back to my normal.

3 months of antibiotics then began...

[undiagnoseddrama]

8. Get a second opinion...

Nice little introduction on the 26th October 2018. Very shortly after the pain management clinic. I got another UTI. Had to go to urgent care out of hours situation this time to see a GP as my doctors was all full. Positive. Cefalexin 500mg for 3days. ✌🏼 It so bizarre that this becomes a normal routine for me and I brush it off with nonsense. Just makes me laugh when a girl mentions they got one over the weekend and felt like they were dying. I’m like girl I feel you! Try 15/16/17 UTIs later, I’ve lost count🤷🏻‍♀️

Whether the September/October infection had come back with a vengeance or this was a new one, my body just didn’t get a break so this bout of UTIs.

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Still with no answers it was back to my GP, another infection after being discharged from urology just proved I was still not good! So he referred me to gynaecology at the women’s to investigate this route. He was baffled at my condition and wanted to help me, which I’m forever grateful for as most other doctors brushed this off with ‘standard UTIs.’

23.11.18- The first gynaecology appointment.

Women’s outpatients, new chapter, new hope? Well maybe not. I was met with quite an abrupt gynaecologist who personally, I felt like he just wanted to go home😒 First of all my medical records didn’t appear on the screen and after the typical spiel of my life, he said he thought my doctor and I quote was “cheeky” for referring me back to the hospital after urology had discharged me. He was basically laughing in my face.

I said well my doctor is concerned about what’s going on and felt like you could help me in some way rather than leaving me to get antibiotics after antibiotics. He said straight away that there was nothing he could do. Never even examined me my pelvis, back etc like the other doctors or asked me deeper questions about periods etc. He just wrote a letter to URO-GYNAECOLOGY explaining he wanted to transfer me over. This team are gynaecologists who specialise in how the urinary tracts and bladder interacts with the female organs too. Years ago many people thought they were separate but this whole line of medicine shows the cross link between the two systems.

I thought great. Just pass the parcel like I don’t matter. So again I had to wait for another appointment. I reflect on this and think what if I was discharged here again. Back to nothing. Definitely one doctors opinion is not valid in your health! Remember that!🙌🏼

20.12.18 - This day was a bit of a game changer!For the first time in all these appointments, I met a WOMAN gynaecologist. Not that I’m sexist in anyway but I felt like someone finally understood me and the difference was phenomenal.

The usual questions came, blah blah blah and then she began to ask me what tests I had done.

“A urinary flow?”

“Urine diary?”

“A smear?”

“An internal examination? You must of?”

“A cystoscopy?”

To all of these questions it was a no.

I hadn’t heard of half of them before? I was “too young” to have a smear and nope, no one had give me an external before?

She was in utter shock. She said after around 3/4 years of all of this happening she was surprised my GP hadn’t give me an internal examination before never mind one of the consultants at the hospitals.

She booked me in for the urinary flow tests and explained she wanted me to keep a urine diary at home, measuring how much wee I had by pissing into a measuring jug every time I peed😩 I had to bring this little diary with me to the next urinary flow appointment

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INTERNAL EXAMINATION

After she booked all of this on the screen, she asked if she could do an internal examination now! She was so shocked that no one not even my GP had done it before or the fact, this could’ve been the cause of it all. She asked for consent and ushered a chaperone into the room as I was on my own.

I’ve got to the point where I would literally let them try anything, obviously I felt nervous but she explained everything she was going to do and over to the bed it was🥴

I took off my pants, laid down and first she cleaned all her instruments and lubed them all up😑 I took a deep breath and as she turned round from her table of utensils, the contraption appeared. I thought it was absolutely huge and never going to go anywhere near me🖐🏼

She used what’s known as a speculum, basically a plastic duck bill shaped instrument that goes in and widens the vagina, so they can examine it properly.

She told me to breath and relax during this. Well no way could I do that! It literally took my breath away, it was quite tight and uncomfortable but didn’t last well long. I’m actually not too sure if she took a smear swab or not? But generally this is the same procedure as a smear test. She took that out after a minute or so and said the manual exam was next🥴 She lubed her gloves and then used her fingers to examine inside. This wasn’t as uncomfortable but still a random woman feeling around should we say. She did this to check for any obvious masses or cysts, abnormalities in the vaginal wall or damage to my cervix.

Whilst she was still there, she decided to tell me, I was making it slightly difficult because I’ve got such good pelvic floor muscles. Suppose there is a bonus out of all this🤷🏻‍♀️

Once she was all done, (she never noticed anything malicious) she told me to clean myself up and come back to chat. I wanted to just lie there for a second, to just gather my thoughts after that event hahaha. They also gave me a pack of wipes/tissues to clean myself after the KY jelly used practically gets everything😷

She then began to discuss the other tests she wanted me to try. She was convinced - and this was the first time a doctor has mentioned it to ME, is that she thought I have Interstitial Cystitis (IC)/ Chronic Painful Bladder Syndrome.

She explained a cystoscopy (a small camera into the bladder via my urethra) was the only way to diagnose this and believed this was the best next step, even though it’s very unpleasant, it must be done.

When I’d brought up IC to other doctors/consultants, they would always try and avoid the situation, acting as if I act like a hypochondriac. I literally visit the doctor with a new theory every time to try and guide their investigations because before this point nothing got done🤦🏻‍♀️ I was fed up. I do research like hell, that’s what I do at uni, how I revise, if need to do the whole outside subject before understanding one concept so of course I’m going to do that with my body as well.

I signed a few consent forms, read all the information packages she had gave me and she actually wished me good luck before I left the room✨ There was some hope after this appointment. I hadn’t cried like the others, I walked out with a smile on my face, weird when you’ve just had a stranger and several instruments too close for comfort🙈🤣 ...and it was a step in the right direction.🙌🏼

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URINARY FLOW

Around 2 weeks after the amazing appointment with the urogynaecologist, it was time for urinary flow or uroflowmetry I believe it’s called.

So this appointment was a funny one. I turned up to the department with no information at all🤦🏻‍♀️ but I brought my urine diary woooo! I always bring water as well because usually I have to do a fresh sample for the doctor or it involves an ultrasound etc. So I basically had to fill my bladder and sit on a ‘special’ toilet which recorded flow, amount, time all those sorts of things and then get a ultrasound after to see if my bladder emptied.

So I drank a bottle of water, went to the toilet and it was not enough for a good reading😫 the nurse told me to go back and drink another bottle before coming back. So the waiting room it was for almost 30/45 minutes.

In this time I met a lovely lady, who basically told me her life story😂 typical day out in Liverpool. She politely asked me what I was here for, mid conversation and of course makes the waiting room atmosphere a bit less boring. I explained everything and she explained hers, telling me she has had ‘the botox’ several times. So I immediately thought in her face where else?🤷🏻‍♀️

Well she meant in her bladder! With overactive bladders, if the typical ‘bladder training’ techniques don’t work, (basically trying to hold off going the toilet so it’s not every 20 minutes, reduce caffeinated drinks, try to reduce getting up in the night etc), Botox in the bladder is the next option!

It basically tightens up the bladder wall muscles to prevent incontinence and reduce the amount of times you have to go! Well I was baffled never heard that this existed!

After the delightful conversation, it was time to try again, back on the special toilet, beep beep beep, the reading on the paper flies out the back, the nurse removes my wee out the bucket - lovely job🤢 and I go straight into the ultrasound room to get checked.

All my results looked normal, only 30ml of wee left in the bladder, which I thought was weird, I expected it to empty out completely but apparently this is within normal levels.

They did this to check if wee was being left in the bladder or in a ‘kink’/dip in the urethra. This would then be a site for bacteria to grow here, causing the infections. However, this was not the case.

My flow and bladder were all good. So I waited for the next test and this was the cystoscopy. The moral of this story is that one doctor can make all of the difference. If I hadn’t of seen her, maybe my diagnosis would be further from what it is now who knows?...

[undiagnoseddrama]

7. Is it all in your head?...

From around this time, things started to pick up. There became more frequent hospital/doctor visits and around the time I started to notice trends in the symptoms.

First of all, I noticed a couple of occasions I would have my symptoms, burning, irritable, pain etc and when taking a sample to the doctors the culture would be clear even if they sent it to the lab to be tested. I was getting the same symptoms but not bacteria present. Obviously, antibiotics are not given for ‘clear’ samples so I’d have to march on, drink tons of water, cranberry juice, home remedies, hot water bottles, baths and so on.

Another thing was, I was still getting my side pain. I had a follow up with my GP and reminded them of the pain I was getting in my side and felt like urology totally dismissed it after the CT scans. Just because nothing visible is there (except for the calcification) doesn’t mean there still isn’t a cause, anyway. He wanted to send me for an abdominal ultrasound to check out my liver/spleen etc. and this got REJECTED! The hospital felt there wasn’t enough evidence to send me for a scan. So it never happened. I only found this out later on and not receiving a letter for months🤷🏻‍♀️

My final appointment at Aintree urology was in the 29th March 2018, after the CT scans and a 6 month “lets see how you go”.

They felt like they had no where else to go with the investigations and said they couldn’t treat me with anything, I was so young nothing they had experienced so because they had nothing to go off so I was discharged. I was discharged with ‘lifestyle choices’ and to keep a food diary👍🏻

I think my dad was in the room for this one and basically had enough, saying they couldn’t just leave me hanging with nothing. So to be fair they transferred me to the pain management clinic at the Walton Centre attached to Aintree hospital to finally to do something with my side. However, this was a 12 week waiting list!😴

.................................................................................

In the meantime, I had had several infections.

17.9.18 - I had already been on nitrofurantoin antibiotics for the standard 3 days and NO relief of any of my symptoms. So I gave a sample in the doctors.

20.9.18 - they rang me after the sample was lab tested to find blood +++ in my sample and felt like I had become resistant to the previous antibiotics after using so much nitrofurantoin. So I was given cefalexin 500mg for 7 days to try and rid my infection.

Cefalexin is just another antibiotic not so specific for UTIs but acts against a broad spectrum of bacterium so usually does the job!

02.10.18 - I had another confirmed UTI and even though previously I had a bad experience with trimethoprim, I was given a 200mg 7 day course.

This was three different types of antibiotics in under a month!

Upto now this probably was the worst stretch of going back to the doctors over and over with untreated symptoms. Given more antibiotics but thankfully these tests were confirmed each time so antibiotics were the only treatment. My body literally couldn’t fight it out at all😓

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10th October 2018.

7 months after my original referral I had an appointment at the pain management clinic. I felt so guilty that I was able to drive to this appointment, walk in unaided and sit reasonably comfortably whilst a lot of people in the department had significant trauma to their lives for whatever reason. I did feel like I was in the wrong place as I know my pain was not this severe.

I spent around 20 minutes in the appointment. Having to explain my history, day-to-day life, struggles, what I am able to do etc and he must of thought why am I here? I could stretch and reach any way he asked I was still dancing so quite flexible and able to still engage in the activities but I just had this pain in my side everyday!

During the appointment I actually broke down and cried, I understood it wasn’t life-altering but explaining the important events I had to miss, how I was only 20 and shouldn’t be in pain as well as I felt like no one believed me got a little too much🙈

After all this, this was the doctor who asked me point blank “Do you think you imagine this pain? Do you think it could be psychological? Do you think it’s all in your head?”

I straight out said no! I just explained how I missed such important days in my life so why would I want to be in pain!😒 I always feel like this came up in every conversation I had, I always felt selfish that I was sick again and again and everybody had to hear about it without having any answers😒 I felt like my friends were sick of hearing about it, that it wasn’t worth stressing over. All these thoughts literally came out in that office. Anyone who knows me, knows I’m a crier! I rarely get angry, my emotion just comes out in tears so the fact he said that to me, which annoyed me, lead to a massive lump in my throat, red puffy eyes and several tissues. My anger comes out alone back in my car calling him for everything but never saying anything at the time! Probably my biggest downfall.

The only suggestion was that I might have nerve damage from all the past infections I’ve had. That my nerves surrounding my kidneys are permanently “switched on” and that the only treatment would be to go 2/3 years, infection free so they could begin to heal. I just knew this was never going to happen.

I was discharged immediately from the clinic but given a leaflet on my way out for a group to visit about living with chronic pain. As I read the booklet the cases included people who had strokes and getting their lives back on track. A brain infection and had to remember how to walk and talk again or someone who had been in a car crash with significant nerve damage to their legs.

I am truly grateful I’m not in their position but felt like that class would’ve not been the right thing to attend. I would’ve felt like I was rubbing it in their face that I could walk in or drive there etc when they’re unable to do any of those things themselves.

With again no answers. Feeling like it was totally pointless and that the consultant didn’t believe me at all it was back to the drawing board. Again...

[undiagnoseddrama]

6. 400 chest x-rays later...

29th August 2017.

So the urology department sent me for a CT scan.

A CT scan combines a series of X-rays taken from different angles around your body to provide a more-detailed image than plain X-rays do. You’re able to see bones, blood vessels and soft tissue within the body, identifying any abnormalities and focussing on any sign of kidney stones.

So first of all you’re not allowed any metal items on you when going inside the CT scanner, cleverly, rather than having to wear the horrific hospital gowns I just wore gym clothes. Sports bras have no underwire in them and no zips etc on leggings so all good. Also, had to remove all my jewellery because it all interferes with the imaging.

Again they asked me several times if I’m pregnant as this, unlike ultrasounds can be extremely damaging to an unborn baby! I also had to sign a waiver to say I was fully aware of this risk and that you’re consenting that you’re not pregnant and happy to have the scan.

I had to lie down on my back with my feet going first into the scanner. It looks like a smaller donut than the big scary MRI machines and because my kidneys/ torso was being scanned, my head actually didn’t go into the machine so not claustrophobic at all if no one has ever had one before!

The scanner talked to you whilst the radiographer left the room into the control room. Asking you to breathe in and out at several points or hold your breath whilst the machine clicked and took images. The bed moved in and out several times only lasting 5-10 minutes before the lady came back to say I was all finished!

In the meantime, I was sent a letter from the consultant to say there was a dark area over my left kidney, nothing specific could be made out, so I had to go for another CT scan, with contrast this time, to get clearer images.

In a later consultation about the CT, I explained the ‘wedding’ episode and although the doctor was slightly confused about it all, he agreed with me that it sounded like I passed a kidney stone rather than just an infection and the next CT scan might help give some answers.

.................................................................................

25th September 2017

So the second CT scan was set up a little different. This time I had to have a contrast put through my body before scanning. It’s basically like a dye that goes through your body via a cannula.

So first I had to have the cannula fitted and I had this in my arm just like when you get bloods taken. This is basically a needle placed inside your arm with a valve attached so they can easily give you medication/dye without several injections.

Again I wore gym clothes to avoid the horrific hospital gown...top tip!😂 Laid down and away we go.

The woman attached a automated machine to my cannula so it could continuously flush my body with the contrast. First of all, she flushed it with saline to see whether the cannula was attached properly in the right place etc. She specifically said to me if your arm starts hurting let us know because it meant the cannula was ‘leaking’ inside.

She started the saline and I felt a weird sensation all down the inside of my arm right upto my wrist, so told her it was hurting, she checked the cannula and said “Oh it looks fine.” 🤷🏻‍♀️🤨🤦🏻‍♀️ Filled me full of confidence clearly after she explained the pain = leaking.

She then added the contrast and said I will feel the sensation of wetting myself🙈 the one fear when going through multiple UTIs, the pain, the urgency, is wetting yourself anyone will agree with me, even if you had the mildest one! You feel like you have no control over that area as it is, never mind something that will intentionally make you feel like it happened.

She reassured me that it’s not really happened, she said people get up to check the bed and everything but it’s not the case, it gives them an indication that the dye has reached the kidneys and bladder that’s all! Well it did instantly! The feeling is the strangest sensation ever! Yes you actually feel like you’ve wet the bed underneath you! But it’s bone dry.

Anyway, still attached to the machine for the duration, the CT starts, again feet first in, click click click, several times and all done!

The radiographer came detached me from the automated IV machine and then you went back to the nurses to remove the cannula. With this however, you have to wait around in the hospital for around half an hour after, incase there is any allergic reactions to the dye. The appointment letter explained all this and that of course there is some horrible complications if the dye caused an allergic reaction, for example it could lead to death💀 Obviosuly the worst case scenario!

Me and my dad got a coffee, chilled and it was all good so off back home we went.

The results came to my GP within about 2 weeks. The original dark spot seen on the first CT scan happened to be calcification. These are little build-ups of calcium that happen naturally in your body. People can get them more than others if they have an over-production of calcium or a lack of vitamin D (so calcium is not absorbing into your bones well enough). They then said to me 70-80 year olds have these all over their bodies and nothing to worry about. However, as this was outside my ureter tubes this was not classed as a kidney stone.

It was attached to my lymph nodes just outside the tube and they told me it wouldn’t cause pain at all. Yet... it is exactly where the pain is in my side I still get 3 years later. I furiously explained to the consultant that I was 19 not 70 or 80 and shouldn’t be having any of them!

If these calcifications were in my kidneys or gall bladder for example, they’d cause extreme pain, sometimes bleeding and various treatments including operating, are required to remove them. Yet just because it was outside any organ, they’re harmless apparently and mines still there as far as I know🤦🏻‍♀️

Overall I understand it was a ‘clear test’ which I’m totally grateful for but frustrating even more that this was not an answer and I just gained 400 chest x-rays instead. (1 CT scan ≈ 200 chest x-rays) This also means I can’t get anymore CT scans in my life unless it’s an emergency because of the radiation risks they bring.

So all fun and games...

[undiagnoseddrama]

5. The Wedding...

Okay so this day needed a post all of its own!

My brother’s wedding was on the 5th August 2017 in Canterbury, Kent. We all travelled as a family down there for an extra long weekend, stayed near the venue and were all super excited!

I woke up to my alarm on the 5th all good. Went to the toilet and that’s where the story begins! My bladder literally never wants me to have a good time. It definitely picks its moments!

I sat on the toilet in agony, talking to my body like please just go away this is not the time and place! Just hold off for 12 hours please! I was a bridesmaid walking my niece (aged 3) down the aisle for her to be the flower girl. I knew she wouldn’t do it without me there, so I couldn’t miss this day even if I wanted to!

I managed to get myself off the toilet, throw on gym clothes super quick and get on with it! Somehow the thick waist band helps hold my lower belly tight and this feels more secure for me when I’m swollen, uncomfortable by supporting the pressure when my bladder feels super heavy.

There was a knock at my hotel room door, my mum all excited with champagne in hand ready to see how I was getting on. She took one look at me and knew something was up, I told her straight away that I think I’ve got a water infection and I’m trying everything to keep it away😂 oh how I was wrong!

She sent my dad over the road to the petrol station by the hotel to get baking soda! I make a drink with this to neutralise the acidity of the urine which comes with infections, literally only a teaspoon in a big bottle of water! This mimics the anti-cystitis sachets, however, this needs to be done with caution as too much in your system can be fatal! This buys you some time before seeing a doctor and generally eases the symptoms!

I carried on, got to the venue to meet my Sister-in-law to be and the rest of the bridesmaids. I was holding it together but felt like I needed 10000 wees, I tried to hold it as long as I knew it would be painful.

I distracted myself with jobs, helping set up last minute decorations and fixing makeup, curling hair and the pain seemed to subside.

I walked down the aisle with my beautiful niece, sprinkling flowers, crying in the seats like I do at every wedding! Took a million photos, listened to all the amazing speeches and got through it almost forgetting!

I thought I’d pop the toilet before dinner...

On a scale of 1-10 the pain was genuinely 1000. I felt like my insides were on fire🔥, I had to put my hand over my mouth to cover the scream I was about to let out in the tiny toilets, whilst trying to hold my floor-length dress so it didn’t go down the toilet either.

I began to pant like people do on the telly in labour because I couldn’t focus on anything else. I got up and shuffled my way out, back to the table where my family sat, this felt like 3 miles away across the room.

I couldn’t sit still in one place, I was so uncomfortable, wanted to scream, cry and nothing helped!

I went back to the toilet within five minutes because the urge of weeping yourself was too unpredictable! I sat on the toilet and that little trickle is your biggest enemy! The pain again went from 0-1000.

I always think this is the worst part of a UTI or anything related. The constant fear of wetting yourself so you immediately run the toilet only to find you do not need a wee😩 it bring on the pain just as bad as the first time and have to begin the cycle again.

Flush. Stand. Shuffle. Repeat.

I begged my cousins and family for any painkillers which is not like me at all! I would never normally take them! I can’t justify the fact of putting them in my body but this time all morals were out the window!

The only thing around was a packet of paracetamol in the ‘wedding survival kit’ outside the toilets. I took 2! No hope at all, the pain did not go away!

Between getting up to get some food from the boho BBQ at the wedding and running the toilet 2 more times. I contemplated everything!

I couldn’t eat with the pain, I felt nauseous, hot, shaky and felt like it would never end!

I began to google the nearest walk-in centres, my go to at home. Well in Canterbury there is no such thing! Liverpool has a least 10 of them and they’re my survival kit when I’m like this! The nearest place was a minor injuries unit 30 minutes away from the venue or Dover hospital about 45 minutes away, the nearest A&E.

My dad took one look at me and said get in the car we’re going! Dan came with me too because god knows what was going to happen next! I still had my gym stuff in the car from earlier getting changed, which I was so thankful for and I got into the car ride from hell!

Every bump, jolt, brake angered the pain down under! The held in screams continued for 30 minutes until we reached ‘ghost town’.

This ‘minor injuries unit’ was a old cottage hospital, looking like it was still in world war 2! It was deserted and so eerie. There was not a patient, nurse, doctor or visitors hanging round anywhere! The reception and waiting area was empty and a woman at the desk was completing a crossword. I had no energy to even speak to her I was in so much pain but had to eventually to get her attention as she was oblivious we had even arrived!

She began to ask me a million questions, details, doctors, why I was there, religion, who would I prefer to see a male or female?

I honestly said “I don’t even care if they’re qualified as long as they can give me something”. This was whilst I was hurled over her desk looking like I was in labour! Standing up was excruciating!

She asked me to wait in the waiting room, again deserted, 15 minutes before a nurse come. Sample taken, usual questions and she managed to find my antibiotics in their stores to give me straight away rather than finding a chemist too.

Nitrofurantoin again. 100mg. 6 tablets.

The only picture I could find😂🤦🏻‍♀️ wanted to show the colours💚

I got a bottle of water from the vending machine and took one instantly. Telling my dad I had the intention of going back to the wedding later on in the night.

Got into the hotel. Ran a bath straight away! I sat on the toilet whilst it filled. In the bath, out the bath, on the toilet and off. This cycle repeated over and over! The pain never eased at all even being dosed up with paracetamol. I felt as if I couldn’t control anything; I wasn’t sure if I was going to wee myself or poo myself, the sensation just felt the same the whole time. Only thing to stop this anxiety was to sit on the toilet so I did for most of the afternoon with Dan holding my hand because he also felt helpless having to watch me in so much pain and not know how to help. I managed to eventually shuffle out to the bed still in my towel for 2 hours, I found the right spot to ease everything before I ran and threw up several times with the pain from down below.🤮

The pain only eased as I began to fall asleep crying because I wasn’t at my brother’s wedding😓 still furious it happened to be on this day! I made sure my mum and dad didn’t tell either of them as well. I didn’t want them to make a fuss, worry or ruin their big day! But they did notice I wasn’t there later on😞

.......................................................................................

I woke up the next morning, early hours of course, running to sit on the toilet! Straight in the bath afterwards as this is the only thing to ease the pressure! Also it’s sounds vile, but you have to wee in the bath too, as this will ease the pain. However, this time this time I was horrified! The bath turned green! Yes green💚 Another brilliant side effect is that your wee literally glows in the dark with nitrofurantoin. Immediately jumped up, showered and got out!

This day was (6/8/17) I was okay, managed to get dressed and see my family the next day at a local restaurant, all of them asking a million questions, calling me a trooper because I hadn’t told no one in the morning I’d felt like that but when it comes to this, I always feel like it’s embarrassing to tell.

So yeah... I missed my brothers wedding because of these awful infections and my awful bladder. Antibiotics kick in quick and literally back to normal once I got home but moral of the story is you cannot plan anything and expect it go to plan...

[undiagnoseddrama]

4. Ultrasounds and Urology...

So I was sent for my first PELVIC ultrasound by my GP back in the women’s hospital 5/5/17.

A pelvic ultrasound again, is a non-invasive technique, allowing quick visualisation of the female pelvic organs and structures including; the uterus, cervix, vagina, fallopian tubes and ovaries.

This was basically the same as last time! Drank lots of water before I went in, to the point you feel your bladder is going to explode and straight in to lie on the bed. Cold jelly and away we go!

Whilst lying down she asked me about the symptoms I’d been having and general reason for having the scan etc. Explaining the story over and over gets really tedious and I thought I was done at that point🤦🏻‍♀️ The sonographers always seem really suspicious when you’re discussing everything, always feel like they don’t believe me and now I know it’s because nothing is there!

This time however, they found something! She asked me if anybody had ever mentioned a FIBROID to me before.

Fibroids are abnormal growths that develop in or on a woman's uterus. Sometimes these tumors become quite large and cause severe abdominal pain and heavy periods. In other cases, they cause no signs or symptoms at all. The growths are typically benign, or noncancerous. The cause of fibroids is unknown.

I said no, never even heard of them before! She told me that I have one and it could be the cause of the water infections! A fibroid could cause my womb to become heavier and push down on my bladder causing the urgency and maybe allowing bacteria to hang around more easily.

She got a better angle, measured it and said because it’s at the top of my womb and only 2x2x2cm, which is actually tiny in comparison to some other cases, she wasn’t worried at all and it wouldn’t cause any pressure on my bladder. She told me also not to worry about fertility etc because it too small to cause any damage.

Whilst cleaning up she said it will probably just give me bad period pains and causes heavy periods. Which made sense! When I was younger this was the case but being on the pill reduced a lot of that.

This appointment my mum and dad waited for me outside. I remember being quite nervous and sweating but I strolled out like nothing was going on. They stress out quite a bit, but so do most parents and I’ve learnt to play things down a lot too them because when they’re stressed, I’m stressed and stress = episode.

.................................................................................

A month later was my first urology appointment - 1/6/17. I was sent to Aintree/Fazakerley hospital to their specialist department.

I went in to one area, needed to do a sample there and then, waited again and finally went to see the consultant. Sat down, explained my life once again to the consultant and there saw the first flaw in our NHS.

He couldn’t see any of my notes.

To him I had had only ONE UTI in my life because a culture was sent for screening (the one that confirmed the type of bacteria that causes my infections). I explained I had around 10-12 infections or symptomatic ‘episodes’ whatever you want to call them, probably I slight exaggeration but I’d lost count at this point. I was confused and felt in a bit of dream. I felt like the words coming out of my mouth he did not believe at all! I questioned whether what I was saying was the truth or does every girl feel like this and never mention anything?

Again, he examined my side, belly all of that to feel for obvious masses etc. Nothing. He was concerned about my side and felt like because the ultrasounds hadn’t shown much, again he took my word for it because nothing was on the screen,🤷🏻‍♀️ the next best thing was a CT scan to see if any stones were around, which would cause the pain and infections I had been getting.

He also mentioned I was the youngest person to ever step foot in the department so he was a little ‘inexperienced’ on how to treat me! I thought great, totally reassured me that thanks👍🏻

I was also waiting for a urinary tract ultrasound (12/6/17) at the time, which would show any kinks or bends in my urethra which might harbour bacteria after weeing. This one was also all clear. Again a relief but still no answers...

[undiagnoseddrama]

3. What a good start to 2017...

So like I said a couple of months had passed. I was relatively okay! Started uni at John Moores and thought the symptoms were all gone🤷🏻‍♀️

It got to January 2017, exam season! These were my first exams in uni, first year, it doesn’t count, but I decided to stress over them that much at the time, I nearly ended up going to hospital! I’ve realised stress can be one of my triggers the only meaningful one I have found! I try now to not think about exams, money, life as much and just go with the flow✌🏼

I had all the usual symptoms, burning, stinging, tenderness on my pelvic area, running to the toilet every five minutes with just a dribble, a mini ‘held in’ scream episode and building up the stress to stand up and put your pants back on! The worst feeling!

I went to my doctors, a male doctor this time because the female doctor just didn’t believe anything coming out of my mouth! He did the usual dipstick test in the sample, one I prepared earlier🤣 but he repeatedly kept asking me when my last period was! It was 2 weeks ago!

Again the fear crept in, I thought he was about to say I was pregnant!

You might think this is a repeating pattern, how petrified I was and always thinking I’m pregnant, but you hear a million stories of girls getting one pain and delivering a baby on the kitchen floor, this would be my absolute nightmare! At this moment in time and still today I have a busy life in uni, work and napping😴 but to be honest I am too selfish and too young right now to have a kid.

Anyway back to it, he turned around to me and said there is blood in your urine sample. Even though you can see it in the wee. Typically because an infection gives a dark cloudy sample. I was relived I wasn’t pregnant, but now scared as to where it came from, when all them adverts are terrifying, ‘blood in your wee, blood in your poo, it’s time to see the doctor!’

He sat down and continued to ask about my symptoms etc and pain in my side, examining the tenderness in my stomach and back to check for any possibility of a kidney infection as blood is a key sign. At this point pain was a no, just tenderness and pressure on my stomach.

He prescribed me antibiotics as it was a confirmed infection and wanted to send my sample off to the lab to confirm the bacteria involved and confirm I was taking the right antibiotics.

This time I was introduced to nitrofurantoin. Again, nitrofurantoin is an antibacterial agent and a first line treatment for UTIs. It is effective against a broad spectrum of bacteria. 1 x 100mg capsule twice a day.

The lab results came back and found the bacteria causing the infection was Staphylococcus saprophyticus. Now this was surprising to my doctors as they believed it was caused by E.coli, the most common bacteria to cause infections as it easily gets into the urinary system due to ‘wiping’ wrong etc.

Staph Saprophyticus however, only causes 10% of UTIs in women and it actually is a bacteria present in the natural flora of the women’s genital tract. This meant this was my ‘own’ bacteria causing these infections and not from an outside source! So basically, the ‘healthy’ bacteria in the genital tract responsible for cleaning, fighting off infections etc. gets into the urinary tract somehow and this becomes a problem leading to a UTI.

As nitrofurantoin is quite a broad spec antibacterial they still fought this bacteria so all good!

The most strangest side effect I found when taking nitrofurantoin is that your wee turns GREEN! Literally highlighter green! Especially with the 100mg strength. So don’t be afraid if you’re given this, you have not been abducted by aliens haha.👽 There was no dizziness or strange sightings with this, just a slight loss of appetite but that usually comes with the infection anyway!

3 days later the symptoms were all gone and back to normal!

However...

From this point onwards I began to have experience pain off and on in my left side round about my kidneys. The pain felt like a dull ache nothing too noticeable but it was there!

I thought I might of slept funny, maybe it was my pair of new jeans being too tight around my waist but no, almost three years later it’s still here🙋🏻‍♀️

It would come for about 20 minutes in the day and then go, totally random and I couldn’t find a trigger for it or a suitable reason...

I was still waiting for hospital referrals at this point so the doctor advised me to wait until then and see if anything appeared on the scans...

[undiagnoseddrama]

2. Fourth times a charm...

Many occasions later, both confirmed and unconfirmed UTIs, after visiting the doctors and sometimes the walk-in centre, as appointments are like gold-dust. A nurse advised me to see my GP about getting an ultrasound scan because they had seen me way too many times in one year! Constantly being given antibiotics to treat ‘one off’ infections was not the answer anymore.

I went back to my GP in December 2015 and at first she said there was no point going for any investigations because I’ve had 1 or 2 infections, it’s what she called ‘honeymoon cystitis’.

Honeymoon cystitis is a type of cystitis (inflammation/infection of the bladder) specifically caused by sex. The symptoms are the same as typical cystitis; burning sensation when peeing as well as the frequent urge to go to the bathroom.

I was fuming that she immediately put it down to that! The fact was, nothing could happen in that department😒 because I was feeling this way 24/7 and after courses of antibiotics, week in week out, the symptoms were still coming back!

The nurse in the walk-in had ruled out any initial concerns like STDs etc. but insisted I speak to my GP because 4 infections within a year was a ‘cause for concern’.

After explaining this to my doctor, several times in one appointment, because she was ‘unaware’ I’d had this many antibiotics, she decided to book an appointment in the women’s hospital straight away for a renal ultrasound.

A renal ultrasound is a safe and painless test that uses sound waves to make images of the kidneys, ureters, and bladder. It is exactly the same as a pregnancy scan so not harmful at all!

Apart from one little x-ray as a kid. Fortunately, I’d not really been to the hospital for much. The ultrasound was scheduled for the 5th January 2016 in the Women’s hospital, Liverpool. My boyfriend Dan came with me for support and off we went.

The appointment was quite early in the morning, not many people were there at first. Over the next 15/20 minutes, I realised a lot of women were coming in for scans with these grey folders...

I initially thought “where is my grey folder, should the lady at the reception have given me one, what’s going on?”

When they said renal ultrasound I presumed we would be in the ‘kidney department’ (urology). Well no. As I was sent to the Women’s hospital in Liverpool, purely on the basis of getting an appointment quicker, here is where most of the Liverpool babas are born. So the scan was amongst all the other mums to be, getting their ultrasound scans as well.

Suddenly, I realised these women were here for their ultrasound scans because they were PREGNANT!

Instant panic came over my whole body hahaha. Makes me laugh now that I was so stupid enough to think I was going to the ‘kidney’ department to get a scan but no. I was here. With everyone else.

I looked at Dan and was petrified at what people might think of us, we looked sooo young back then and of course, I did not want to see anyone from school incase rumours started setting in that I was pregnant😂 I went to an all girls school so this would’ve been a hot topic🙈

Then I thought omg! What if I am and in this ultrasound she’ll find a baby rather than a messed up kidney. My mind thought a million things...

I told Dan to stay in the waiting room to avoid suspicion and off I went. Lied down on the bed, extra cold jelly all over me and we were off with the uncomfortable small talk this stranger had to do with me and probably another 20 women later on today.

There was a sonographer student in the room as well, so the lady explained a lot of medical jargon to her. A lot I couldn’t even understand, explaining what she was seeing on the scan. This to be honest was a little bit nerve wracking, I didn’t really know whether having ‘that’ or ‘this’ was good or bad or if they found something there.

The scan wasn’t uncomfortable at all but the whole time I was just thinking about not wetting the bed😣. You have to drink a least a litre of water right before you go in so your bladder is full and visible on the screen.

Thankfully, everything seemed reasonably okay I just have one kidney slightly bigger than the other. The left one which surprisingly, coincides with the pain I now suffer with.

This literally meant nothing at the time so it was back to the drawing board...

The lady was happy, cleaned me up but that jelly just gets everywhere so you feel sticky for about a week! So don’t wear jeans to the appointment!

Cleaned up, quick run into the little en suite, as you feel like your bladder is going to explode the amounts of time she pushes on it, moves you round the bed and gets you to breathe in and out😂 The toilet also has two doors one to the scan room and one outside, check both locks! Out I go, running out of the waiting room so no one could see us!

Not much happened after this for a good while. My body gave me a little break. I still got uncomfortable sometimes with slight cystitis but nothing super serious and no confirmed UTIs. Till next time...

[undiagnoseddrama]

UNDIAGNOSED DRAMA

1. Where it all began...

So from the top. It all began on the 24th February 2015 with a trip to my doctors. 2/3 days of dysuria (burning), stinging, pain when going the toilet, so much pressure pushing against my bladder, highly uncomfortable and irritable - all my ‘typical’ symptoms now. I also wanted to sit on the toilet, all day long, because every time I stood up it felt like I needed to go again, the fear of weeing myself was sky high! I was still in 6th form (school) at this point and I actually threw up several times during lessons with the pain and discomfort I felt.

Initially, I thought it might just go away, after a few days. Thinking maybe it was something spicy I’d eaten and caused a burning pain, down under, or probably because I hadn’t drank enough water and my body was telling me off. I was too scared to tell my mum at first as well, probably because I didn’t want a million questions...

So of course, I sat on the toilet, in agony by the way, googling all the symptoms I was experiencing, finding the worst case scenario.

It was either a ‘water’ infection (UTI) or chlamydia. Nice. I knew the STD was impossible so I went with the UTI.

A UTI or urinary tract infection, commonly called a water infection, is an infection in any part of the urinary system; kidneys, bladder, ureters (tubes connecting kidneys to the bladder) or the urethra. Women are at GREATER risk of getting a UTI than men, because a woman’s urethra is so much smaller than a man’s. This makes it easier for bacteria to get into your system.

Yes it’s caused by bacteria! So many people didn’t know this when I explained my symptoms to them, which just baffled me - another reason I wanted to explain my story.

Usually it is caused by E. coli, which is in your own gastrointestinal system and can easily ‘get in the wrong place’, through many different ways. UTIs can also be caused by different bacteria and once you get one, fun fact: you’re prone to getting more and more!

Back to that day, I finally told my mum and we got an emergency appointment the same day at the doctors. Told to pee in a pot and come back into the room.

In there, I got asked what I thought was the most embarrassing questions of all time, whilst my mum sat beside me. Are you sexually active? Is there a chance you’re pregnant? Could you possibly have an STI? I actually couldn’t cope. I just wanted the ground to swallow me up. I stumbled with every answer, I think out of shock.

After getting through all that and my first of many times peeing into a pot, a UTI was confirmed with a positive dipstick and I got given antibiotics called trimethoprim.

Trimethoprim is an antibiotic and is a first line treatment for uncomplicated urinary tract infections. Only taken one tablet, twice a day, for three days as they’re fast acting. Literally just what you need when you’re in this state. With an endless list of side effects with trimethoprim I probably got quite a few... I felt nauseous, dizzy, I could see black dots in front of my face and suffered with a high temperature, but I thought this was just part of the infection.

The next day, you begin to feel back to normal again but it is essential the antibiotics are taken for the full course to eradicate all the bacteria. The 3 day course was up and I thought it was all over. Wishful thinking...

[undiagnoseddrama]

UNDIAGNOSED DRAMA

Hiii, my name is Lex, I’m 21 and currently ‘undiagnosed’.

For over 4 years now, I have suffered with multiple urinary tract infections (UTIs), unexplained flank pain and now what the doctors call ‘episodes’. After multiple scans, investigations and home remedies, the doctors are lost and the process to just ‘treat’ the symptoms begins...

I am grateful they’ve never found any serious conditions, however, being left in the dark has just been as frustrating!

What’s shocked me the most is how many of my friends and family didn’t understand UTIs or even understand their own body (even when I would constantly talk about it🤦🏻‍♀️) so I decided to share my experiences, to educate others and seek advice myself on the ups and down of being chronically undiagnosed.

So here’s the drama...