I saw my Urologist (Dr E) yesterday so thought I would give you an update on where I am with my Interstitial Cystitis journey.
It’s been a rough few months. I still haven’t recovered from my cystoscopy with hydrodistention and my symptoms are much worse than before the procedure. Whatever my Urologist did that day, my poor bladder still hasn’t forgiven me and I’m not sure she ever will.
I finished my course of six bladder instillations a couple of week ago. I tolerated them really well and the more I had, the less painful they were. I didn’t feel any improvement until number four and after number six, there was definitely a decrease in my pain. My pain is still very up and down but I do get times when I have no pain at all and feel almost “normal”.
I am trying to experiment with the IC diet. I’ve followed it fairly rigidly for three and a half months and feel it’s time to be brave about trying other foods. The diet has become so boring and monotonous, it’s driving me crazy!
The first thing I tried was white chocolate…obviously. It’s supposed to be more bladder friendly than milk or dark chocolate. I bought a high quality bar (Sainsbury’s, Taste the Difference as opposed to my usual choice of Milkybar. Unsurprisingly, Milkybar has more added crap). After tasting the first square, I fell into what can only be described as chocolate ecstasy. I had zero self-control and consumed the whole bar in 0.05 seconds. Perhaps it was the sugar rush, the caffeine or my body not knowing what the fuck just happened but I had an almighty headache almost straight away. I went to bed to sleep it off, woke up the next day and my bladder was…the same. No extra pain. No elephant doing a dance on my nether regions and it continued like that. After weeks of avoiding the chocolate aisle for fear of throwing a toddler tantrum at not getting what I wanted, a miracle has happened! I’m going to try to resist turning into the chocolate monster I once was but it’ll be a struggle!
I also tasted the sugar high of alcohol. I know, I know, just thinking about the acid in a glass has me wincing in pain but hear me out. My usual tipple is vodka and Diet Coke but I wanted to stay away from caffeine so I chose vodka, soda and blackcurrant. It’s not a taste sensation but it did the job. I washed this down with plenty of water to try to dilute my urine. The pain kicked in almost straight away. I managed four or five drinks and my slight drunkenness helped numbed the pain. The next couple of days were painful but not as bad as I had expected. I could hear my bladder shouting “Fuck you” several times a day and I can’t blame her. It’s a pretty cruel thing to do and I’ve apologised unreservedly. I will definitely save drinking alcohol only for special occasions as it’s just not worth going through that on a regular basis. I would rather be the sober one than the one with a potty mouthed, screaming bladder.
I’m writing this with one eye open and feeling like I haven’t slept in a few days so please excuse any spelling or grammatical errors. Dr E prescribed an antihistamine called Hydroxyzine and I took my first one just before bed last night. I had a great sleep but trying to get up this morning was like trying to drag a suitcase through thick sand. I still feel really drowsy and out of it. I am hoping after a few days, the tiredness will go as my body becomes accustomed to the new blue pill. I am going to delay taking anymore until after my exam next week as I just can’t afford to sit here in a daze when I have so much revision to do.
Dr E wants me to continue with bladder instillations once a month. We discussed other medication (Amitriptyline) but both decided to hold off for now because of possible side effects. He wants to discuss me at a complex case meeting next month to see what other Urologists suggest. My symptoms aren’t always typical of IC but he is pretty confident that’s what I have. Isn’t it great being diagnosed with a condition that no one can be 100% sure you actually have! I am being seen by a Gynaecologist next month to rule anything out there. My periods have become very painful and I get pelvic pain not from my bladder so there could be something else at play.
Dr E said IC is really hard to treat but to stay positive that things can get better. I’m all about positivity, it’s the only thing that will get me through this nightmare!
Emma x
Broken Bladder 
I’m on Hydroxyzine as well, and while it does help me sleep, I have never had trouble waking up. I can still function like normal while taking it. Although I have been on it for awhile, I don’t remember feeling extremely tired when I started out either. So I found it interesting to see you reacted differently to the same medication. I am also on Amitriptyline for my Fibromyalgia (and also my IC in a way), and it does make me tired. Again though, I still don’t have an “I’m drugged” feeling when waking up. Besides the Amitriptyline making me tired after I take it, I don’t feel any other negative side effects from it. Also, if I stay up for an hour or so, the tiredness goes away. I was wondering if you tried Botox injections into your bladder/pelvic floor? Thats how I am treating my IC, and it works wonderfully. (P.S. I have only read this post of yours so far.) Warning though, some urologists don’t like doing the Botox procedure because you have to do it every 3-6 months.
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I haven’t taken the Hydroxyzine again yet as the drugged feeling has really put me off! I’ve read about a lot of people being out of it for a couple of weeks and then their body adjusts. I will try it again but trying to plan it around my shifts at work!
Medication doesn’t agree with me very well. If I take too much co-codomol, I feel the exact same.
My Urologist hasn’t mentioned Botox to me. What symptom(s) has it helped with?
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With my IC, I experience extreme urgency. I have no problem emptying my bladder, but I continuously feel like I still need to urinate. I’ll be stuck in the bathroom for hours with this feeling of “I need to urinate. I can’t get up.” I also have sever spasms–as in off the charts. The Botox injections stop the spasms, or at least make them so minuscule that I don’t notice them. It also completely removes the urgency feeling. You can have this procedure done in the office or in outpatient surgery. The only difference is that you are under anesthesia in outpatient surgery.
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Sounds like it’s really helped you! Frequency and urgency aren’t too bad for me, my main symptom is pain. I’ll definitely look into it though, willing to try anything x
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If the pain is from spasms, then I think it could help you. If you have an Urodynamic test done, it will tell you how severe your spasms are.
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I’ve always been too scared to have urodynamics incase it flares me! My pain feels like spasms sometimes but not very often.
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Just finding time to get into my emails. When life is tough I sometimes find it hard to connect . I’m also taking Hydroxine . Been on it for years . On and off if bladder behaving I don’t take it regularly. If I’m having a bad flare up I can take up to 4 a day. Also take 10mg of Amtripyline at night with 2 high strength co-codamal. Sends me off to sleep nicely. I’m a light sleeper and still wake up 3-4,times a night for a pee. In a flare up it can be upto10 times and I just want to shoot myself or my husband if he starts snoring just as I’m dropping off to sleep. Has Elmiron been suggested by your urologist . I’ve been taking that for years and think it helps..it has to be prescribed by your urologist and supplied by hospital . I’ve also started using a magnesium spray which my urology nurse suggested. Haven’t had a bad flar up in last few weeks. Will monitor the effect. I know what you mean about the alcohol . A gin and fever tree tonic is just so good. Like you my bladder starts swearing. Odd times I get away with it. I’m everybodies friend on a night out as I’m the driver ..
I can’t stand the diet .its so boring. Drink coffee which surprisingly doesn’t do too much damage. Need the caffeine high😜. MSG is a big nasty for me. No Chinese food as its full of it. Also in some prepared foods. Spicy food not great but I eat it occasionally. I’m through the menopause etc but when I was having periods I suffered terrible pelvic pain which was investigated and nothing was found . Strange one as my daughter is now going through similar symptoms and investigations.
But hey ho I’m counting my blessings . I can still run and sing. Was my gospel choir concert today . Was brilliant . Lots of laughs singing and carry on… Santa is coming and I’ve cleared out my front room ready to get decorations up. Only 4 more rooms to clear out!! Best of all it looks like the post office is going on strike so I don’t need to bother writing Christmas cards to people I haven’t seen in years. Woo hoo..😂😂xxx
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Elmiron hasn’t been suggested. Do you experience side effects with it? That’s what puts me off using it. I am having more bladder instillations starting next month so will see how they go!
I hate being the designated driver but on the plus side, it’s saving me money. I think I’ll try a cheeky drink over the festive period and hope for the best.
I have tried bananas and I am fine eating them. I missed them so much! Going to try pears and avocados next. The diet is boring me to death so I need to keep trying new things.
That’s great you got out to the concert. It’s so nice when you can get out to enjoy doing the things you love. Great news about the Post Office strike…that will definitely be my excuse! 😂 x
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I’m having the bladder installations. They consist of Heparin, Sodium Bicarbonate, Lidocaine, Solucortef, and another numbing medicine that starts with Bu?. I self cath at home as I live three hours away from my urologist. I’m usually sick the day after, but I have had five installations (one a week), and I can tell a difference. After the sixth one I will do them on an as needed basis. I still have pain, but not as bad and not constant. It took me 10 years to be diagnosed. For awhile I thought I was going crazy and my family didn’t really know what to think. My husband is very supportive, he has spent many nights at the ER with me in terrible pain, only to be told it was in my head, they could find nothing wrong with me. I was treated as a drug seeker and as a RN that was very difficult. I’m out of work, and am probably putting in for disability. I hate to do this as I love what I do, but you can never tell when you are going to have a flare, and it is difficult to work a schedule around that. Sorry this is so long, but it’s close to 5am and nights are the worse for me. I needed somewhere to vent!😱😱
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You can always come here to vent! I continually read about sufferers being told it’s all in their head, it makes me so angry. Why would you spend ten years pretending you are in so much pain!? IC is so poorly understood and poorly dealt with. So many doctors are not educated and are dismissive. I am lucky that my Urologist is understanding, he said some of his colleagues would not treat me the same way which is truly awful. I’m so pleased you have found success with the instillations and hope it continues. I have just been approved to have six more, once a month, starting next week. I can only imagine how difficult it is not being able to work. As much as everyone moans about having to get up and go, when that choice is taken away from you, it must be tough. I hope you’ll be able to reach a healthier place in the future and can get back to doing what you love ❤️
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I was on the instillations for years and they helped me. Nowhere near perfect but made life possible. I just had to take the day of treatment really easy, got the kids picked up from school for me, slept if I needed to, painkillers etc. I moved to France and the instillation the consultant used there did nothing for me so was then put on Elm iron. No side effects, no needing a whole day to cope with treatment and similar level of relief. Not perfect but been struggling a bit of late with more pain and less control. I think my urologist is beginning to get to realise that I am special, that I am quite a severe case needing a bit more care so fingers crossed…
I an getting very good at nursing a very small glass of red wine with a meal so I get the taste bit minimal bladder effect. But miss good white wine. Even a small glass of that feels like peeing razor blades. As for chocolate I stick to really posh, expensive small amounts and savour it. White choc never really did it for me. I have always liked the bitter stuff. Maybe if I was stricter with the diet things would be better
I steer clear of the big no nos but I am a nutritionist with such a love of food there is a limit to what I can cut out. I miss tomatoes and coffee and citrus and spicy food, can’t go further than that.😉
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The diet is hard to stick with, especially this time of year! Every week I am reintroducing new foods and crossing my fingers. I’ve always been a fan of white chocolate, so that’s a help. I really miss Thai & Indian food, been craving it for days now!
My Urologist has mentioned Elmiron but he doesn’t seem to rate its success so think that will be a last resort.
I hope your Urologist manages to help you with your symptoms! So awful to be suffering x
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With curry I find if I make my own with cardamon, cumin seeds, garlic, ginger and garam masala I am ok. Can’t seem to cope with fenugreek or fennel seeds or chilli. I go easy on the spices and avoid prepared sauces and pastes. They taste nice especially the next day.
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Perhaps I should make my own then! I do need to get more creative in the kitchen 🙂
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It can be hard to feel motivated if you are tired and in pain. I enjoy cooking and find it relaxing but sometimes I can’t decide what to cook, just can’t quite get up and started. Once I have started chopping and cooking it is all good.
My blog lynnburnsnutrition.com is my main blog and has some recipes on there. Not all fit with the IC diet as it is a general food and nutrition blog but many of them could be tweaked. Maybe you can find some inspiration on my blog but there are some great food bloggers out there that make me look a complete amateur. I certainly don’t blog regularly enough.
I have done a post on the ic blog I started in 2012 thanks to seeing your site. I like the idea of trying to make light of some of the trials of living with IC, i wish i was more able to write comedy, sometimes you just have to laugh at stuff. Even if it is not funny at the time. Raising awareness too. Nobody has heard of it. I don’t want pity, i just want support and to be understood.
I love the idea of getting guest bloggers or writers like urologists or researchers in ic to get involved with evidence based comments if I can. I feel that, like any long term condition, we as sufferers are open to trying all sorts if things to help and some of these things have not been rigorously tested for safety and some diets are very extreme. A lot of sufferers share what they do and are convinced that what they are doing is the thing that is keeping their symptoms at bay. But really a number of things could be going on, one person trying a few things is not a tightly controlled trial with controls. But that is the science geek coming out in me.
Good luck with getting back to work. Have a great Xmas as much as you can even if it is burying your head under the duvet and resurfacing after new year. Pick the thing that is most important for Xmas, is it a mince pie or a bit of xmas pudding or a blob of trifle and just go for it. Enjoy every bite. Steer clear of the booze though. And have some top quality white choc at the ready. 😉
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I’ve followed your blog and I’ll have a proper look through. I’m always on the look out for recipes! Can be tough finding ones that are IC friendly so I find it’s often better to tweak things.
Guest bloggers is a great idea! I completely agree with you. I read so many stories of what people have done to ‘get better’ and it seems dangerous. The worst I’ve read time and again is about water fasting. I’m no expert but can’t see how it’s good for the body not to eat anything for days / weeks. Personally, no matter how much pain I was in, I couldn’t abstain from food, I love it too much!
I will definitely have the painkillers on standby over Christmas as it will be hard to eat completely IC. Christmas is only once a year after all! I hope you have a lovely holiday season and 2017 brings you better health and good luck! xx
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Your blog is so funny, thank you for making me chuckle while ‘flaring’ badly. Keep it up, you’re an inspiration (sorry if that sounds too much!)
Emma x
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Not at all! Thank you for your very lovely comment 😊 If I can make one person laugh and take their mind off a flare, I’m a happy woman! x
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