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Hi Everyone,
I'm a 12 year sufferer of mostly urethral syndrome with occasional pelvic & bladder pain that began after my first of many UTIs at age 21. (note that my first UTI showed up 2 months after first taking BC pills and I have had much fewer off of BC pills) After getting an in office cystoscopy done with no pain meds (ouch) and going through most of the early years with no diagnosis and being told it was "in my head" or "hopefully I'd grow out of it," I gave up on the majority of doctors. I did eventually get diagnosed with U.S. about 2 years ago, but without any further invasive testing.
As a result of my doctor avoidance, I consider myself a bit of a "control" subject. The only treatments I've tried are:
- diet modification (helped a little, no soda, coffee, caffiene or bottled water other than alkaline ones- like Fiji & Evian, i drink filtered city water now, no reverse osmosis!)
- pelvic floor therapy (made it worse)
- drinking tons of non-acidic water (i mean tons, but only when flaring, otherwise i just drink normal amounts.
- microwavable heat packs
- de-stressing and distraction.
- avoiding back bend type stretching when in or near a flare
- always traveling with a supply of macrobid, the only med i'll take for an acute UTI
- going commado (without underwear) a lot
I've never taken a medication for it or even an herbal supplement or had any procedure done for relief. Yes, there are times I'm ready to jump out the window, but after 12 years of experience I try to remind myself that the flare will pass eventually and that there is no way to know how long it will last or how to make it go away. I just start drinking water and distracting myself.
I've found after all these years that my urethral syndrome appears to be highly connected to hormones. It flares like clockwork every month around ovulation and right before my period. It also tends to flare more in winter (i blame lower vitamin D levels affecting hormones) and after periods of stress. (i blame cortisol messing with my hormone mojo for that)
Now I've furtherned strengthened the hormone connection in my mind. I've just found out that I'm pregnant and have started a bad, lasting flare after about a year of moderate remission. This recent one started around my last ovulation when I concieved and has getting been progressively worse. Because of two previous miscarriages I had my hormone levels tested to see if everything is okay and I found out my progesterone level is a 40, which is pretty high for only 5 weeks along. So, projesterone is apparently a huge factor for me and it really explains my usual cycle flare points.
To provide some hope to those that don't have years of experience with this, I have had some years of true remission between about 25-30, but I think that stress and hormonal changes that came with turning 30 led me to a higher flare period (and also brought out IBS). With lower stress levels and only alkaline water and probably lots of other stuff beyond my control I got it to a very tolerable remission from 32-33 and but now with this pregnancy am back in the flare.
I know that we all know very well how much hormones can affect this awful disease and that this isn't news. But I wanted to share my experience because I think it may be helpful for some to know what has happened to someone who didn't treat the illness medically. The flares still come and go, I still have moments where I am completely out of my mind from the pain, but I try to just remind myself that it will pass. In the beginning it was much harder cause I didn't know from experience that it will not last forever and it is not necessary caused by something I did or ate, but it has gotten easier with time and easing up on trying to control it. Hormones are not something that is easily within our control and I think they contribute to the maddenly ups and downs that we so desperately try to figure out and manage. I've not considered hormone therapy yet, I'm still planning a family and I don't have much confidence that more hormones added to the cocktail won't just make it worse. But I'm not ruling it out for the future.
As for the mental coping aspect, I know the feeling of frustration from dealing with doctors and trying desperately to find someone or thing that will help and I just want everyone who is in that state to know that doing nothing doesn't mean it won't go fade on it's own when it is time. Once I accepted that this is just a fact of life and it will come and go, it was a lot easier to handle. It brought me out of the panic state that chronic pain often puts you in.
Anyway, I hope this helps. I've been lurking for many years and just wanted to share another perspective in case you are fed up with doctors (i call that going on a medical vacation
, scared to try treatments or not able to find or get into a doctor that can help you right now. Just relax, don't panic, the flare will hopefully pass eventually. And when you are in a period of remission, don't fear it coming back, it likely will and then it will pass again. It is an illness of peaks and valleys, so make sure you enjoy the peaks as much as you can. Trying to control this illness is like trying to steer a rollercoaster, someday someone will figure it out and we'll all get to get off the ride but until then just try to do your best dealing with it and try not to get too upset trying to figure out what started the flare. It is not always within your control.
I'm a 12 year sufferer of mostly urethral syndrome with occasional pelvic & bladder pain that began after my first of many UTIs at age 21. (note that my first UTI showed up 2 months after first taking BC pills and I have had much fewer off of BC pills) After getting an in office cystoscopy done with no pain meds (ouch) and going through most of the early years with no diagnosis and being told it was "in my head" or "hopefully I'd grow out of it," I gave up on the majority of doctors. I did eventually get diagnosed with U.S. about 2 years ago, but without any further invasive testing.
As a result of my doctor avoidance, I consider myself a bit of a "control" subject. The only treatments I've tried are:
- diet modification (helped a little, no soda, coffee, caffiene or bottled water other than alkaline ones- like Fiji & Evian, i drink filtered city water now, no reverse osmosis!)
- pelvic floor therapy (made it worse)
- drinking tons of non-acidic water (i mean tons, but only when flaring, otherwise i just drink normal amounts.
- microwavable heat packs
- de-stressing and distraction.
- avoiding back bend type stretching when in or near a flare
- always traveling with a supply of macrobid, the only med i'll take for an acute UTI
- going commado (without underwear) a lot
I've never taken a medication for it or even an herbal supplement or had any procedure done for relief. Yes, there are times I'm ready to jump out the window, but after 12 years of experience I try to remind myself that the flare will pass eventually and that there is no way to know how long it will last or how to make it go away. I just start drinking water and distracting myself.
I've found after all these years that my urethral syndrome appears to be highly connected to hormones. It flares like clockwork every month around ovulation and right before my period. It also tends to flare more in winter (i blame lower vitamin D levels affecting hormones) and after periods of stress. (i blame cortisol messing with my hormone mojo for that)
Now I've furtherned strengthened the hormone connection in my mind. I've just found out that I'm pregnant and have started a bad, lasting flare after about a year of moderate remission. This recent one started around my last ovulation when I concieved and has getting been progressively worse. Because of two previous miscarriages I had my hormone levels tested to see if everything is okay and I found out my progesterone level is a 40, which is pretty high for only 5 weeks along. So, projesterone is apparently a huge factor for me and it really explains my usual cycle flare points.
To provide some hope to those that don't have years of experience with this, I have had some years of true remission between about 25-30, but I think that stress and hormonal changes that came with turning 30 led me to a higher flare period (and also brought out IBS). With lower stress levels and only alkaline water and probably lots of other stuff beyond my control I got it to a very tolerable remission from 32-33 and but now with this pregnancy am back in the flare.
I know that we all know very well how much hormones can affect this awful disease and that this isn't news. But I wanted to share my experience because I think it may be helpful for some to know what has happened to someone who didn't treat the illness medically. The flares still come and go, I still have moments where I am completely out of my mind from the pain, but I try to just remind myself that it will pass. In the beginning it was much harder cause I didn't know from experience that it will not last forever and it is not necessary caused by something I did or ate, but it has gotten easier with time and easing up on trying to control it. Hormones are not something that is easily within our control and I think they contribute to the maddenly ups and downs that we so desperately try to figure out and manage. I've not considered hormone therapy yet, I'm still planning a family and I don't have much confidence that more hormones added to the cocktail won't just make it worse. But I'm not ruling it out for the future.
As for the mental coping aspect, I know the feeling of frustration from dealing with doctors and trying desperately to find someone or thing that will help and I just want everyone who is in that state to know that doing nothing doesn't mean it won't go fade on it's own when it is time. Once I accepted that this is just a fact of life and it will come and go, it was a lot easier to handle. It brought me out of the panic state that chronic pain often puts you in.
Anyway, I hope this helps. I've been lurking for many years and just wanted to share another perspective in case you are fed up with doctors (i call that going on a medical vacation
, scared to try treatments or not able to find or get into a doctor that can help you right now. Just relax, don't panic, the flare will hopefully pass eventually. And when you are in a period of remission, don't fear it coming back, it likely will and then it will pass again. It is an illness of peaks and valleys, so make sure you enjoy the peaks as much as you can. Trying to control this illness is like trying to steer a rollercoaster, someday someone will figure it out and we'll all get to get off the ride but until then just try to do your best dealing with it and try not to get too upset trying to figure out what started the flare. It is not always within your control.
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