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Dear all,
I have now been two months in treatment. My big problem is that my bladder symptoms are constant - I now realise that the IC I had before was very well controlled by me, and then it went into remisson. It came back recently worse than ever and I am having trouble controlling the symptoms. I have constant pressure in my bladder, and also, I think I have developed some vaginal burning. At the moment, I can't 'conceptualise' these pains/inflammation ever going. Previously, I knew that after a few hours, my symptoms would disspiate. Now, I can't imagine EVER having relief from the bladder inflammation. Did anyone else think like this at the start, ie, how is it EVER going to go, or could you see your way thorugh to the end and imagine it gone? Does this make sense?
Hi Vin, My IC came on when I
Hi Vin, My IC came on when I was 20, over the next few years it calmed down and became more manageable as I learned what not to eat and do. I was asymptomatic for a number of years before my IC reemerged this time. I first saw Dr.B in Aug and the pain was "reasonable" until October. Then the bladder pain and inflammation became worse in intensity. A few weeks later the discomfort became constant. It varied in intensity, but I never got a break from the discomfort. So, yes, I have been there. Then, I started to have some windows of lessened pain, then no discomfort, then on January 20th, I went through an entire day of very little discomfort. I thought it would just last for a day or two, but you know what? I am on day 18 (but who's counting?;)and the pain didn't come back. I am sure I will seesaw a bit for awhile, but the pain has been gone long enough that I can envision a life without this constant discomfort. So, yes, it takes awhile, but you will heal. It just may have to get a little worse before it gets better.
Katie
Katie, Woohoo! That's
Katie,
Woohoo! That's amazing. I am so happy for you, and can only dream of being in your shoes right now. We are very similar in that our IC re-emerged after a few years of remission. When your IC came back, did it come back worse than before or was it still at the same level? What has thrown me is that mine is worse than it was - very difficult to manage in my regular life. Was yours the same as before but you were just fed up with managing it? The reason I saw Matia is that I could not manage it any longer.
Thanks Vin, Good question..
Thanks Vin, Good question.. yes, mine did get worse the second time around, but only after beginning treatment. There are other factors I need to consider though... at 20 I was a college student who could take naps when I wanted and had no parenting responsibilities etc. I think part of the IC being more difficult to manage this time is that I have much more I need to accomplish at 30 with two kids, a husband and a career than at 20. So, I have learned to push through IC a little more.
I still have a very long way to go, but one decision I made a few months into treatment was to trust the protocol. I was using so much energy the first few months deciding and then redeciding if this is the right path for me....I just decided to let all that worry go. It wasn't helping me. It is either going to help or not and I won't know until I commit to healing. This treatment is a leap of faith, not just in the protocol itself, but in investing in your body's ability to heal. For most, it is successful and no one will know whether or not it will work for them until the "work" is done. But... we have an option to become asymptomatic from a disease labeled as "incurable". You and I have the gift of knowing that our bodies went into remission once before so.... why can't it do so again? The answer is it can!
Also... remember that many do not really see improvement until 8mos-1 year in treatment. Try to take things one day at a time and not think too much about the future... I know that sounds impossible, but it helped me to let go of the "what if" fear. Does that make sense. You are healing, Katie
Thanks for this katie!
Thanks for this katie!
Hi ladies, sorry for
Vin43, it is pretty common to get worser before getting better. Katie is right, a lot of people start seeing improvements passed six months mark. So, hang in there. I know it sounds like unreachable milestone, but it will be here before you know.
I do believe that medication is is not supposed to be painful, at least in theory(!). I would advise is to work closely with Matia and decrease or change medication AND give enought time to see the difference.There are things Matia can use to counter or remove troubling components.I wish I communicated to her how intense my pain was instead of trying to will it to end. As soon as she realized I was on one particular herb for too long and changed the protocol my pain level went down.
Here is an offtopic question that I am curious about.
When you say your IC went into remission, do you mean all symptoms were GONE? Did you eat all you wanted at that time or remission was controlled by diet?
My 'remission' was amazing -
I did not know at that stage that I had IC. I started showing IC symptoms in 1997, after a UTI which did not go away. I had this low level tingling for two years - had a cystoscopy (clear) during this time and realised that medics had nothing to offer. Tried some natural stuff but nothing much worked. After two years, I got pregnant and symptoms miraculously disappeared. Symptoms came back after birth but not as badly, but enough for me to seek help again. Gynae. did a lap. and decided that I had endo. (I knew that he was wrong but I was so desperate not to have IC that I latched onto the endo. theory). Since then, symptoms have been either manageable or gone completely. The past few years, I have been eating, drinking, etc. exactly what I want because I did not think I had IC. I thought I had endo., which had now disappeared (very naive, I know). I did not feel a single bladder symptom. I could have jumpd for the moon and been ok. It was amazing. Not a single symptom, even if I drank alcohol, ate anything, etc. etc.. This time round, symptoms started up again in last few weeks of pregnancy - may be related to pregnancy or perhaps related to hormones (am perimenopausal, I think), and not as manageable (not at all, in fact) this time as previously. So 'yes' - complete remission WAS complete remission, largely due to the fact that I did not think I had IC. It's been a shock to get 'diagnosed' with it this time round - horrendous.