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Hello all,
as I am still quite unsure if I could be helped, I would like to ask a question regarding the thing which probably holds me back the most... And that is that I probably have a little bit different symptoms than you guys have.
I was never officially diagnosed with IC (although I knew well that nothing really fits me more). I spend 6 humiliating months with the western doctors and then just stopped seeing them. It has been almost a year now since I stopped.
The thing is, that I have this strange symptom with which it all started and I am not quite sure what is the cause... sometimes I even think if I went mad or whatever they suggested. The symptom is sharp pain in the external part of urethra after I pee, but not right after I pee - it more like I finish, get my pants on, leave the toilet, sit down etc and THEN it starts. It is like if small knives attacked the external part of my urethra. Ugh. This started it all (and the burning discharge, which came a bit later), I have much more symptoms now such as painful bladder, urgency, fatique etc. etc., but it all started JUST in my urethra and it just won´t go away. I´ve been wondering all the time - is that neurological? Is that bacteria? Am I totally crazy or what? What I have never felt like UTI, it is so strange.
To be honest, it feels like if I peed out some bacteria which then bite my external parts. :D Sound crazy, I know. But, as nasturtium (an anti-bacterial herb) seems to help with this a little, I tend to believe my crazy theory. Sometimes it also occurs after a hot shower or if I sweat. It is very, very sharp, intense and frustrating. After a while, it just goes away, but makes me panicky every time.
Anyone who can relate to this?? I would be really grateful. Since it is such a strange symptom I am so scared even Matia can not help me with this crap... Thanks!!!
There is no limit to
There is no limit to 'weird' symptoms many of us have. Along with other IC symptoms, I had urethral burning. Unable to find yeast outside vagina and the walls, some 'creative' doctor took urethral swab for yeast. It came back negative, of cause. The pain started while on the gyno chair and almost didn't leave for long time. I don't remember if it happened right after I peed, but I remember it would come at random times and it was painful. I also had a case of vulvodynia. The itching was enough to declare myself insane (if it only helped). Sitting was making things worse; while at work, I had severe panic attacks brought by anxiety over this frustrating situation. I could not think of anything but THAT. I also had stinging and pocking pain feeling like a certain nerve got out of sync and was causing shooting pain coming from urethra downward direction.
My vulvodynia (itching) was gone soon after I started diet. I still have mild pocking around my period. This post made me realize that urethral pain has been gone for many months.
Blondy- it sounds like you
Blondy- it sounds like you have made some improvements! That's positive even if you have a ways to go, right?
Strange Symptoms
Could it be that pudendal nerve thing? Look that up and see what you think.
This sounds like something
This sounds like something many people have described. Sounds awful. (((hug)))
you´re right, there probably is no limit...
Blondy: Oh, thanks. Ok, probably I just have to calm down and accept that I am not so different, in spite of having something "strange". I can soo relate to "declaring myself insane". And panic attacks. And thinking only about that crazy painful stuff. And vulvodynia (well, I did not even know that something like that existed before I found this website. I just connected all the weird stuff to my bladder/urethra, and thought that the discharge, strange pain and burning in that part of anatomy was caused by my bladder or urethra somehow. Oh, how little I know). I had a lot of urethral swabs and it only worsened the discomfort/pain temporarily. Sorry to read what have it done to you. And so glad that you are better! May I ask you how long have you been in treatment? And, maybe (you don´t have to answer if you don´t want to) which from your symptoms still remain?
Clueless: Yes, that could be it. Thanks!! Anyway I am diagnosed with Lyme (well, antibodies and antibiotics only made everything worse), strep B (both urethra/vagina), chlamydia pneumo/tracho (antibodies), candida... Could be anything of that and nothing, of course. Lyme is well known for attacking the nerves, but who knows... But I was thinking about neurological problems because of it. That´s why I am so anxious - and probably all IC sufferers are - why a healthy person gets so sick out of the blue. Having the bugs diagnosed without any possibility of treatment makes me even more out of my mind.
Deir: Oh, how I like your nick :), and your warm reactions. Thanks a lot. Guess that the worst thing is to accept that this really is happening. I have read it in one of your posts recently. You´re so right. That´s problably the hardest part - don´t know why, how to handle the pain and if it ever ends. And that I am not the same person anymore and I do not have a life, no matter how much I want to.
So, I guess that even if it was the nerve thing, Matia can do something about it..? As I am becoming to be more and more familiar with this website, I have a strong feeling that I should get to L.A. as soon as possible, otherwise I really turn insane or something.:) Ar least I really need some guidance, a chance to let go.
Tinkerbell
Tinkerbell, oh thanks!! Well I do have a bladder and urethra pain ant it actually gets worse when the bladder is full. But after I pee the bladder gets a bit better - and my urethra does the strange thing. That pain just freezes me for a long time, takes my breath away... And makes me feel I am crazy. Anyway, I also felt like I do not belong here and my so-called IC was something else... Thanks again, a huge stone just fell away from my heart.
Strange Symptoms
Aya,
Matia should be able to help all those things wrong with you that have been diagnosed. Don't be discouraged. Hang in there.
Aya, I experience ups and
Aya, I experience ups and downs in the treatment. We were able to reduce or eliminate some symptoms( vulvodynia) and improve my skin. As to bladder symptoms, they don't stay consistent. Bladder pain followed by fatigue/muscle pain and then back again. I understand now that it will time to heal.
I encourage you to figure out your diet. Diet change was helpful for me.