How I manage my pesky bladder symptoms

This post should also be entitled "How I escaped the living hell that is feeling like you have a constant UTI."

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A UTI, urinary tract infection, for those not in the know, is most commonly caused by a bacteria called Escherichia coli (E. coli) which usually resides in the digestive system and bowel. When this bacteria invades the urethra and subsequently, bladder, it can result in lots of really fun symptoms including:
-frequency (feeling like you need to pee more often than you usually do)
-urgency (feeling like you need to pee really badly, even when you try and end up only peeing a few drops or nothing at all)
-burning pain sensation when urinating a.k.a fires of hell descending on your nether regions
-pain above the pubic bone

If a UTI progresses to the kidneys (through the tubes that connect your bladder and kidneys, called ureters) you can get flank pain and fever. Kidney infections can be fatal which is why doctors tend to prescribe antibiotics quite readily.

I had every single symptom above (apart from fever), plus dysuria (pain at the end of peeing). I would get up multiple times a night to pee, and on my worst nights I would spend hours on the toilet, in pain, not peeing, but feeling like I needed to. I even had a few attacks where the symptoms magnified themselves so much that I ended up with horrible flank pain that had me sobbing and screaming in pain and I was convinced I had a kidney infection (just no fever). I would drink the maximum amount of Ural allowed and drink cranberry juice and take cranberry tablets and it wouldn't make a difference. The pain was so bad it was making me depressed, as I wasn't sleeping properly and was constantly uncomfortable. I would get up to go to the toilet more than once an hour at work and it was difficult to concentrate. I often sneakily hid a heat pack on my crotch at my work desk for relief, and at home I would put an ice pack on my crotch when it got really bad.

Thing is, what I was having was not a UTI. Every time I went to the doctor and peed in a cup, the results would come back saying that I had red blood cells and white blood cells in my urine, but no bacteria consistent with an infection. The doctors still gave me antibiotics but I stopped taking them after the first few attacks because they wreaked havoc with my body (i.e. I ended up with UTI-like symptoms AND thrush. FUN!) I also thankfully have a dad who is a doctor, so even though he lives in another state, I could call up and clarify whether I was making a medically stupid decision in deciding not to take the antibiotics.

So, what did end up I doing about it?

Firstly, I went to my gyne, because I thought that endometriosis on my bladder might be the cause. He told me that if he had to get up in the middle of the night to pee, I could put up with it too. I decided that he was ridiculous and should probably go and get his prostate checked, and got a new gyne. (It took over a year to find a new one, mind you.)

In the meantime, I stopped having caffeine intake of any kind, bar a few squares of dark chocolate occasionally. I had already stopped drinking coffee a few years ago after having terrible reactions to it, but now I cut out all black tea and green tea and only drank herbal teas like rooibus, peppermint, rose or chamomile. This was not fun for me as I was (and still am) a tea nut. I. love. my. tea. However, the UTI-like symptoms were actually driving me crazy with lack of sleep and pain, so I took drastic measures. I also limited my alcohol intake as I found my symptoms were worse when I drank. I even stopped doing my beloved Bikram yoga as I found it was irritating my bladder too much to have to drink that much water to make up for what you sweat.

Next, my new gyne prescribed me amitriptyline (Endep) for neuropathic pain. I had been in pain for such a long time from endometriosis that my entire pelvis and genitalia had become hypersensitive, with my neural pathways sending an expression to my brain that was much greater than the stimulus that was coming in. Think of it as your brain receiving a message that you have just been cut with a samurai sword when you've just had a small scratch.

She put me on 25 mg a day, starting at 5 mg a day and going up 5mg a day in my dosage every week (i.e., week 1=5mg/day, week 2=10mg/day, week 3=15mg/day, etc). This took a few weeks to start working but is AMAZING. Side effects that it gave me were headaches occasionally in the first two weeks of use, incredible drowsiness after taking the tablet (like you have to go to sleep then and there) and slightly dry eyes occasionally. I have now been taking this medication for 6 months have found that I no longer get so drowsy when I take the pill but do have struggles waking up in the morning if I don't take it early enough the night before. I usually take it around 8pm if possible, and if I have to get up really early the next day I'll take it at 6pm. It also makes you very sensitive to alcohol, but that has been good for me as alcohol worsens my endo symptoms anyway so it gives me extra motivation to limit my intake. Another option if amitriptyline does not work for you is Lyrica.

Finally, I started seeing a pelvic floor physiotherapist. I didn't realise it, but I had pelvic floor dysfunction and this was contributing to my urinary symptoms. Pelvic floor dysfunction is when the muscles in the pelvic floor and surrounds spend so much time in spasm due to pain (think of how you grit your teeth when you have a toothache, or clench your fist when you hurt your arm), that that becomes their default position. These muscles become very tight and this can cause even more pain than the original cause over time. Pelvic floor physiotherapy uses exercises, relaxation and massage techniques to try and retrain these muscles to act as they should.

I found an amazing physiotherapist in Ali Burnett at the Pelvic Pain Clinic in SA (when I visit my gynecologist), and Maureen Bailey in Canberra. Canberra also has a pelvic floor physiotherapist in the public health system that you can visit free of charge, but this was not available when I started my treatment. I went weekly and that, coupled with using a relaxation CD and dilators, helped improve my bladder symptoms and also other pelvic pain. I also did regular yoga for stretching and relaxation. Maureen Bailey also does remedial massage on my back which helps with the flank pain.

If you are a woman with endometriosis, notice whether you are clenching your pelvic floor right now. I often notice that I clench my pelvic floor in everyday situations, like sitting on a chair or talking to friends, and need to consistently remind myself to relax it. It's even more important in winter, when the cold makes you tense up.

After taking all of these measures, I still had some vulval sensitivity, and so my gyne prescribed me an amitriptyline topical cream that I apply to the area twice a day. I am more consistent in applying this when I have flare ups, but I find that even just applying it 4 times a week keeps the number and severity of my flare ups of bladder symptoms down.

I hope that this helps any women out there with endometriosis who are experiencing similar symptoms and want an option other than antibiotics. Please be patient with these treatments, as none of them work overnight, but if you persist, hopefully you will have similar results to what I have had. If you have any questions feel free to email me at vintagelib@gmail.com. (However, I am not a doctor or other medical professional so please consult with your doctor if you think any of these treatments might work for you.)