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Dear all,
I thought I'd post here for some advice since I am getting very little elsewhere (notably family). I first had IC symptoms in 1997. Had a cystoscopy which showed nothing. Had a lap. which showed inflammation on the outside of the bladder and right ovarian fossa. Symptoms disappeared after acupuncture/childbirth and I lived completey symptom free. Symptoms came back during my most recent pregnancy. My problem is this - I am becoming increasingly convinced (call it intuition/inner sense) that I have something going on other than/as well as IC. During pregnancy, I went to bed happy/normal and woke up feeling that I had taken a major shift as a person (massive brain fog/cognitive shift). This feeling has remained with me ever since. I do have bladder inflammation BUT I also have other stuff going on too - dry eyes, mouth, difficulty swallowing, difficulty talking, muscle tenderness, MAJOR cognitive impairment, lung inflammation (so far indicative Sjorjen's?), no sense of smell or taste, pelvic inflammation outside of the bladder. Now I know that these symptoms all sound like IC - however, I just can't get rid of the feeling that I have something else going on too. Blood tests are normal so far. I need to get to the bottom of this but have no idea how given that as soon as docs. see normal blood tests, they lose interest. I am not sure where to go from here - do I fight for a diagnosis or not? I suspect I have a hefty case of something like Sjorjen's - has anyone else been diagnosed with it? If so, how were you diagnosed? It's usually mild, by all accounts, but what I am feeling is certainly not mild, and it's not goin. Bladder inflamamtion is subsiding slowly but everything else is staying with me. It's completely debilitating and actually quite scary, particularly the brain fog/cognitive impairment.
Matia
Have you spoken with Matia about this? Its quite common to have symptoms like this crop up before and during treatment. If you've had it throughly looked at by the western medical establishment, you should just focus on what you've chosen to do--which is this treatment.
I know its scary--but I think constantly scouring the internet might be detrimental!! Have you thought about putting some of those symptoms into the search on this site and seeing what shows up?
Just keep taking your protocol and communicate with Matia!
Hi Vin
I've read your posts with interest and sympathy - everything you describe is suffered by people on here to varying degrees. It's so difficult to get your head round what's going on and frightening too but you will get through this fear and confusion and will come to an acceptance which enables your anxiety to lessen and for you to continue on your road to recovery. I too have struggled with the concepts and theories as I find it very difficult to trust and to believe something just because someone says so. I've done a whole lot of research and tried to understand the science of the body but as the saying goes the more you learn the less you know & there is just so much information, It's impossible to become an expert on everything. The one thing I cannot argue with is results and that's what's kept me on the strict diet and lifestyle change but it's not been without a whole lot of wrangling within myself.
The cognitive changes and brain fog you talk about are common and somewhere on this site there are explanations into the science of why we have it. I simply do not have the brain power or intelligence I once did, it had been so bad that even a simple task like working out a bill or changing some wires on the computer exhausts me to even think of BUT since starting this regime, I've seen huge improvements. Patience is the name of this game. There are no quick fixes. It took a long time to get ourselves to this point so makes sense that it'll take a while to get well. As many have, I have had to change my beliefs and now I believe strongly in the holistic view - why would we not take account the health of the whole person and just focus on one aspect such as the urologists I've encountered do??! Conventional medicine seems archaic to me now and although it has it's place, I can trust that I'm better equipped at looking after myself with this new knowledge.
I might get shot down for offering information because of course I don't know you & am not a dr however it would seem to me that the reason you were symptom free for the years bringing up your children is due to the fact that the body is very good at putting this thing on the back burner whilst it deals with the importance of producing and raising new life. I too went into remission in pregnancy and if the information I've read is correct, this is down to the bacteria making its home further in the bladder walls so makes sense that going through this cleansing process the bacteria are becoming closer to the surface before being flushed out or overtaken by the good bacteria and this goes for the other areas of the body too. Through this process, the funtions of the immune system, hormones & digestion all begin to come back into balance and start working as they should. Everything is so interconnected, that we need one thing to make another thing work and so on..
One more thing I wanted to comment on that you've mentioned before, is the clouds and bits you see in your wee. I've had this for as long as I've had bladder problems (years)- it doesn't scare me anymore. Yes I'd like it to go but it's there and I'll wait patiently for it to improve as I do all of my symptoms.
The biggest corner I turned was getting over the anxiety that naturally occurs when discovering new & different information such as is contained in this site and this holistic way of thinking that can offer hope where we thought there was none, opposed to the conventional method of ignoring it, taking meds, having procedures and living with it. I continue to live in a bit of limbo, feeling like I'm waiting for my life to begin but I try to take one moment at a time and enjoy myself no matter what.
Hope this helps.