My Bladder Disease and Me

Ah yes its finally time to talk about my problematic bladder and if you have ever experienced any sort of bladder pain or difficulties, you will know how awful and life controlling it can be. On April 1st 2018, so 3 years ago today, I was diagnosed with a rare and incurable bladder disease called Interstitial Cystitis, a chronic condition causing bladder pain and discomfort.

So how did it start and what were my symptoms? Towards the end of 2017 and early 2018, I kept getting UTI’s (Urinary Track Infections/bladder infections) constantly with various trips in and out of the doctors and even trips to A&E at times where the pain was just unbearable. At the beginning of 2017, I had just got into a relationship with my boyfriend and shrugged off the worry of UTI’s knowing it was probably the urmm … physical *cough* side of our relationship being the cause of it. But as time went on, the pain and discomfort got worse and just would. not. stop. It then got even more worrying when some of the lab results for my urine samples would come back negative, so no infection, but why was I in so much pain? After many different doctors all just giving you the same “hygiene” talk, I finally had a Doctor who also had experienced bladder pain in the past and referred me to a specialist. After various tests and scans, I was then told about Interstitial Cystitis and the good news was I finally had some answers to what my pain was and what I was doing wrong. The bad news? It’s incurable. Them words just shook through me and instantly knew this was going to change my life.

After now 3 years of suffering with interstitial cystitis, I’ve learnt to live with my condition with lifestyle changes, plus various treatments, medication and surgery along the way. So what changes have I had to make? What treatment did I have and what do I do to cope with the pain?

1. Drinks and Diet

(This is a big ol’ section, so take a deep breath and try not to get a headache lol)

Probably one of the biggest changes I made was what fluids I drank. I remember the day the doctor sat me down and said to me “from now on it’s JUST WATER, okay?” thinking she was joking or just meant for a short period of time…but no, she wasn’t kidding. Everything I used to enjoy drinking like alcohol, tea, coffee, coke and fruit juices were now off the table as these were classed as irritants to the bladder. She described to me that I need to imagine my bladder as a cut or a graze on my arm and said “when you put alcohol on your cut or graze it stings, right? That’s what’s happening inside your bladder” ah, so that explains the pain. All those times thinking I had weeks of suffering from a UTI, I was actually having something called a flare up from all those cups of tea and weekend drinking. These flare ups can last for weeks to even months and cause the most awful pain, like peeing lava and having someone stabbing your bladder 24/7. URGH. So for a least a year I did what she said and drank JUST WATER. Oh how depressing that was, until I went on a google hunt to find websites and support groups from other people who also suffer from IC and found a list of “bladder safe and not bladder safe drinks” which I will link here.

DISCLAIMER! Every person is different and has different experiences so in no way am I saying these drinks are 100% safe. Please try drinks at your own risk and consult with your Doctor if you are unsure, do so at your own risk. This is just from my personal experience, yours may differ.

Safe Drinks

  • Water: The safest option. HOWEVER depending on how sensitive your bladder is, sometimes even the type of water can cause flares. For example tap water sometimes gives me a small, but bearable, amount of pain. To avoid this, I have a water filter to get rid of them nasty irritants. If I’m out for a meal or at a pub, I have to make sure they DONT put a lemon or lime in my water!
  • Hot Drinks: Peppermint and chamomile are 100% natural and completely caffeine free. Peppermint is my absolute favourite and is even great to help soothe a flare up as well! HOWEVER I have to make sure its 100% peppermint, some places like Costa for example have 70% peppermint and 30% spearmint, SPEARMINT is an irritant! So I make sure to always ask for 100% peppermint. Hot water and honey is also a fab choice for a winter warmer.
  • Milk/ milkshake: Milk is a bladder friendly drink! When having a milkshake, vanilla is the best option flavour to have. Anything else like chocolate or strawberry can be a pickle and is a possible irritant.
  • Juice: This is when it gets quite difficult. The only juice I can drink at the moment is pear juice, and it may sound weird but its actually SO NICE! Where the heck do I even get pear juice? I get mine from Tesco and will link the brand here. It does contain a small amount of lemon juice but not enough to cause a flare up (my personal experience). Blueberry juice is also classed as bladder safe but I am yet to try it!

NOT Safe Drinks

  • Alcohol: my biggest personal irritant. My god when I drink alcohol it feels like my insides are on fire, and even alcohol free still causes irritation. I’ve now lived 3 years sober and you know what? I dont even miss it (well sometimes but it’s not a big deal)
  • Caffeine: Oh to have a pumpkin spiced latte or have a nice morning brew again…those days are long gone. So what about flavoured teas? Nope. Green Tea?! Nope. Even caffeine free is still an irritant, but other people’s experience may differ.
  • Juice: Most juice is unfortunately off limits, including orange, apple, pineapple, cranberry, basically anything citrus. Squash is also off limits for me personally but it differs from person to person.
  • Fizzy, Sports and Energy drinks: anything carbonated or has caffeine is a no go. This includes sparkling water but its worth a try.
The only pear juice I can find in supermarkets!

It was all about trial and error, but was also getting the confidence to try new drinks as well. It can be very daunting when trying to drink something new, knowing it may cause me pain for endless amount of days. I always tired to make sure I tried a new drink when I had a few days off work and made sure I drank a whole big glass of the stuff so I knew for sure if it hurt me or not. I’d wait a good 24 hours to see if I had any pain and if I didn’t, it was good to go!

Food isn’t really much of a bladder irritant to me but can be for some. I know sometimes when I eat lots of chocolate or have a big bowl of tomato pasta, there sometimes can be a small flare of pain, but not enough to cause much distress. I dont, however, eat any citrus fruit like mangos, pineapple, oranges etc as I know these do cause me pain. Lastly ice cream is also something I keep an eye on, as essentially once its all mixed up in your tummy, it is really a milkshake drink. BUT saying this I haven’t had much trouble with different flavoured ice-cream in the past so maybe I should try different milkshake flavours? Hmmm.

And that’s that for diet and drinks. It may not seem like such a big change, but for me it was definitely the social aspect of drinking that was the hardest. If I had a penny for every time someone asked me why I wasn’t on the alcohol on a night out, I’d be a rich girl indeed. It was constantly having to explain myself and having them pressuring me to “just have one!” or questioning “so when can you drink again?” do you know how belittling that is? Invisible illnesses are real and people need to think before they question someone’s lifestyle choices. I’m honestly quite happy to not drink alcohol ever again and if that’s a problem to someone, that’s says more about them then it does to you.

2. My Medication

ANOTHER DISCLAIMER! I AM NOT A DOCTOR! All my medications are on PERSCRIPTION which were chosen for me by many doctors. YOU MUST see a doctor before trying ANY of these medications and am not suggesting you must have them. These are just what have worked for me PERSONALY and am only writing to give options to what you may suggest to you doctor and what my PERSONAL experience has been.

Lucky enough, my journey with finding the right medication to help me cope with the bladder pain has actually been a short one. For some though, it can be a long process of trial and error trying to find the right medication specific for each persons needs, as like I’ve said, everyone is different and has their own personal experiences.

Oxybutynin – Tried but didn’t find it right for me. Oxybutynin is a bladder relaxant which can help stop pee urgency and stop spasms. I found this medication way too strong, yes it relaxed my bladder, but to the point where I didn’t even know I was peeing! And found it very hard to push the lasts bit of wee out (sorry gross alarm) which is dangerous and can cause UTIS – the exact thing I was trying to avoid. Plus it made my pee green!!

Amitriptyline 10mg/20mg – A pain killer, took a while to get used to but works perfectly for me to keep the pain at ease. I take 10mg every evening 2 hours before bed (it makes you drowsy) and 20mg if I feel like the pain is worse today or having a flare up.

Trimethoprim 100mg- a non penicillin based antibiotic and I take one 100mg tablet every 2 weeks to keep my UTI’s at bay. Now, taking antibiotics often isn’t the best for your health and can cause complications down the line, however this was the only option to stop myself getting recurrent UTI’S. Not only are my UTI’s extremely painful but they can actually worsen my condition, so it was decided my Doctor that taking a low dose antibiotic every 2 weeks would be better then having UTI’s constantly. It was also suggested to me by my doctor that I should time taking the 2 weekly tablet after having s3x, as we sort of worked out this was my main UTI cause. This has been working really well for me and, fingers crossed , haven’t had a UTI in nearly 2 years!

Once again do just want to mention to please check with your doctor before taking any of these medications! Also do not giving up going to the Doctor if you feel like you are getting no answers or help from them, it took me a good year to finally see one who had bladder problems herself who put my on the right medication and also made a referal to a specialist.

3. Treatment

Oo here’s where it gets a bit more complex! So I was told my bladder disease was not curable right, but was it it was treatable with various medications and procedures. This really was a turning point for me and finally going down the right track to manage my condition.

Cystistat® Treatment – probably the best thing I’ve done to help my bladder but also not the most fun. Cystistat® is a solution that gets inserted into your bladder through catheter (so basically had a tube up my wee hole) and I had this done ONCE A WEEK for a good two months, then it went down to every 2 week for a couple more months. Really early in the morning as well ew but it was a very quick in and out job. Once the solution was inside my bladder, I had to hold this in for at least an hour for it to do its work. Not going to lie, having a nurse put a tube in your wee hole was not the most pleasant thing in the world, but after a while I did eventually get used to it. It did sometimes leave me in a lot of pain during the day, as the catheter could sometimes scratch my insides and wow did it hurt to pee for a day or so. It was also very emotionally draining having to wake up that early, to strip off and wear a gown, lay on a hospital bed and a nurse poking around down there! And not knowing if it will hurt today, will I need to take the day off, is it even working etc, however thankfully it was all worth it and the treatment did wonders for me. I could of chosen to still have this done even after the course was finished, but I was just about to have another procedure done (which I will discuss in the next paragraph) and felt like it did it’s job well enough for me not to go again. If you want to find out more about the treatment I had, click here.

Hydrodistension and Cystoscopy – this was done to reduce pain and discomfort in my bladder and to further the investigation to see if there was any abnormalities that wasn’t picked up on previous scans. A hydrodistension is where my bladder was slowly stretched out with fluid. I was on general anaesthetic at the time so was fast asleep and didn’t feel a thing. But oh goddddd the pain when I woke up was a weird one. I felt like I needed a wee really really REALLY bad but was still too sleepy to get up or even ask. Once I finally came to, I saw I had some sort of nappy/sanitary towel thing down there to catch any blood caused by the surgery. I ate A TON of bourbon biscuits and was told I wasn’t allowed to leave the hospital until I had a wee. OH. MY. GOD. I must of been in that toilet for AT LEAST half an hour, peeing literal blood and in the most excruciating pain. I finally come out of the toilet in tears, but the nurse just goes “ah yes I see you’ve passed urine then! Off you go home xoxo” WHAT? THIS IS NORMAL? Spent the next 3 days in bed drugged up on co-codamol to wait for my bladder to heal up and stop peeing literal blood. It eventually all cleared up, cystoscopy came back with nothing unusual and was sent off on my merry way. This procedure has helped me coped with my condition a lot more and dont feel the urgency to pee as much as I used to.

All this took place in the space of about 6 months, adding on another 6 months after that for recovery, so it was a long, tiring and worrying journey, but knew it was something I needed to do in order to live, somewhat, pain free again. I could of had the option to continue with the Cystistat® treatment but decided against doing so as I felt I was doing okay and didn’t really need it, plus it put me under quite a lot of stress and anxiety getting up early and worried about the pain that would follow. I would definitely recommended any of these treatments and just think its always worth a shot if you’re willing to put your body and mind through the bad side of the treatments in order to feel the benefits afterwards.

4. Changes to lifestyle

And finally after sorting what my pain triggers were, had my meds prescribed and had the right treatment done, it still wasn’t over yet and I had to make lots of lifestyle changes that were also causing my flare ups or things that could worsen my condition.

  • Bladder Friendly soaps, bubble bath etc – oh wow the confusion I used to get before discovering that soap can irritate the bladder too! I would hop out the bath in absolute agony down there, not knowing I was using all the wrong soaps and bubble bath! So no more fancy lush for me, even baby bath irritated me and it was a case of trial and error trying to find the right brand and ingredients that allowed me and my bladder to wash pain free.

The brand of soap I use the most is Sanex’s “Zero %” range, with absolutely no fragrance, sulphates, colourants or soap, which can all be bladder triggers! I never have had any problem with these products and I can finally relax in a bath without having the stress of after pain. The two products shown on the right are the ones I use the most, the Kids Head to Toe Wash is what I use for my bubble bath and the Shower Gel is what I use when having a shower and for a body soap when in the bath. It’s also a big plus that the product is vegan, recyclable and has a 93% of natural origin.

Another bladder friendly soap (for me anyway) is Dove Sensitive Skin Micellar bars, which is fragrance and sulphate free. I mainly use this for shaving, pairing it with a bit of coconut oil for the perfect shaving cream combo. Also love that it contains plant based cleansers, comes in a recyclable carboard box and is safe to use on the face!

If I had to use something that wasn’t bladder safe, I’d try my best to avoid the soap or scrub coming into contact with the area ‘down there’. So for example if I wanted to exfoliate my legs with a body scrub, I’d simply stand in the shower with just my lower leg wet, scrub it up and wash the scrub off COMPLETY before properly showering or running a bath.

  • No Swimming in Chlorine Pools– Now I’ve always HATED swimming pools anyway and still cannot swim for the life of me to this day, but that doesn’t mean I wouldn’t love to cool off from the heat in a pool or even warm up in a nice, cosy hot tub…sigh. Unfortunately for me chlorine is a complete no go for my bladder and I avoid it at all costs. I’ve never actually tried to see how I would react to chlorine, but to be honest, knowing I react badly just to soap and fragrance in bubble bath, I’m terrified of the idea of swimming in literal acid. I did consult my doctor and do a lil research and both said that chlorine is best to be avoided, but depends on person to person.

Swimming is a great low impact exercise, especially for people, like me, who have bladder conditions and sometimes find cardio difficult. I cannot swim for my life, but give be a hand float and damn I could swim the English Channel (well not actually but you know what I mean). I LOVE going to the beach and swimming in the sea doesn’t irritate my bladder! There are also facilities available across the country with salt water pools which I haven’t tried yet but is something I will consider if I want to avoid dirty sea water.

  • Planning toilet breaks and fluid intake – another side effect of living with a bladder condition is needing to pee constantly. Luckily after treatment and medication, my urgency to pee is a lot better than it used to be and I can hold it quite well, but still I have to go many times in the day and need to make sure that wherever I’m going, there needs to be toilets available. I do try controlling this by decreasing my fluid intake… but then the less water I drink, the more my bladder hurts, so its a double edged sword. I always just try to plan my day ahead in advanced and whenever I see a toilet, I GO. I remember back in 2019, I was in Belfast and my boyfriend had booked me an 8 hour walking tour of Game of Thrones locations which were all in the middle of nowhere. I’d just recently had my bladder surgery and instantly thought OH GOD what if I need to pee. I contacted the tour company and they put me at ease by saying that there were lots of toilet opportunities throughout the day and I made sure I went at every stop! So yeah, it can be frustrating but there is lots of ways around it and it’s just all about planning ahead.
  • Low Impact/Low Weight Workouts – 2019 was a rough ol’ year for my bladder, having it poked with a tube once a week AND then being expanded to its max compacity to the point where it tore and had to re-heal it self, it’s safe to say I took it easy when it came to working out. I didn’t want to stop completely so knew I had to do some research on what I could and couldn’t do.

I mainly focus my time at the gym on legs and abs, but my booty wasn’t going to do anything without any weight increase. Lifting anything heavy during my healing process was a complete no go, and for the most part of 2019, I simply couldn’t put my body under too much pressure. My dream booty just had to wait and decided on working on just toning found the best way to go was using cable machines and resistance bands. I practically LIVED on cable machines for a whole year just because I found it easy to add weight gradually and test my limits. The weights being on a cable was also a safer way of training, if I was to fail and drop the weight, it wouldn’t cause me any harm. Resistance bands were great for me also, as it added that extra bit of resistance without putting strain on my injuries. I used these methods mostly for my leg/glute workouts but did incorporate them into ab and arm workouts too. It was a tough old year but in 2020 I finally go the confidence back to try heavy weights again, and yes lockdown did ruin that goal a bit and I’m completely writing off my gym goals for that year. 2021, I hope to get back to the gym as soon as possible and start training consistently again.

Conclusion

Thank you so much for reading my post about my bladder disease, if you’ve got this far. It’s been a long journey of pain, worry and fear, but it definitely has made me a stronger person and I hope I’ve raised some awareness around IC and general bladder problems people may come across. It used to be something I was so embarrassed by and was ashamed of telling people what was wrong with me. I’ve learnt to accept that I’m going to have this for the rest of my life, so I might as well share my story in hope that I give someone else the confidence to share theirs as well. I want to also just mention that thousands of people suffer with invisible illnesses everyday, going through pain and tiredness, but looking completely fine on the outside. You just never know what someone is going through so never be quick to judge them.

If you have any questions or comments, please feel free to contact me or leave a comment below. Here are a list of sites that you may find helpful if you are also suffering from Interstitial Cystitis or Chronic pain.

If I remember or come across any more helpful sites, I’ll be sure to update them on here.

Once again, thank you so much for reading. Remember you are never alone and there is always support out there if you are suffering from a chronic illness.

“You’re not a victim for sharing your story. You are a survivor setting the world on fire with your truth. And you never know who needs to your light, your warmth and raging courage”

Alex Elle

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