How did your IC progress?

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I believe I have IC, and I found this website and started the diet. It has helped me a lot. I have gone from having severe vaginal pain and pelvic floor dysfunction to having very little of the same pain. But it seems like now, I am experiencing a little more pain and discomfort in my bladder.

I am wondering how this disease progressed for you. I don't really know what to expect. Will it get worse even though it seems to be getting better in some ways thanks to the diet.

I live down South and don't really have the money to come to California right now. I'm due to see a new urogynocologist on Friday, but I'm very leery about having the cystoscopy and laproscopy, even though I suspect I may also have endometriosis.

I guess I am just desperate at this point to try to take the right path and hoped some of you could tell me a little about your experience with IC. I really hope to someday be able to come and see Dr. Brizman, but I don't think it's a possibility right now.

I'm torn, because the diet has given me hope.

Any input you can give me about whether or not I am healing or not right now would be great. I don't have the herbs, but wish I knew what to take to heal.

Christine222's picture
Christine222

Well all I can say is you won't heal on the diet alone. It can make you feel better in the beginning because you are taking out so many things that can irritate your bladder. As for the herbs they are what truly makes you heal but everyone is different so we all take a different combination of herbs and those combinations change as we go through the process of healing. I know it's a big thing to get on a plane and see Dr. B in person but it's the only way. I flew out of Atlanta, GA and spent one night in LA. It was truly worth the cost to me. If I were you I would save up for a trip out to see her, you won't get better on the diet alone, you need her guidance in this.

deir's picture
deir

I really don't know how it progresses. It is so different for everyone and I have only been outwardly sick for 9 months. I think some people can absolutely get to a mangaeble level on diet alone. I have heard of someone who got almost completely better by doing another diet which is actually similiar to Dr B's. I was going to try that diet before I found Dr B. The tenets of that diet are also about balancing the body which is Dr B's focus. I don't want to just get to a manageble level- I want to HEAL. The great thing for me about seeing Dr B and following her protocol is that the second guessing and experimenting are done with and you kind of let go of so much of that. it isn't easy and it is very scary still for me but mentally I am better because I am not thinking I should try the next thing or the next herb or ddrug or treatment. She is guiding this and for me- I needed that. I have always been my own healer and it has worked in the past. IC is way too huge for me.
 
In the meantime, if youcan't get to LA, keep up with the diet. My sister has IC too and she has been just doing the diet until she can afford to go to LA. SHe is 75 to 90% better. The diet actually does facilitate a lot of healing because it is geting rid of yeast and helping the body balance itself.
 
Remember- our bodies always want to reach homeostasis.
 
Best wishes-Sorry you're suffering.

me's picture
me

I guess I'm just scared that it may get worse. I read that if it doesn't progress after 18 months or so, it probably won't. But mine has progressed some in the past six months. Once I started the diet on here, it seemed to get better in some ways - pain wise - but I am still dealing with other symptoms now.
It drives me crazy that I do not understand what is happening to my body. I have bought numerous books on this topic, read them, and I'm currently reading a book about Leaky Gut Syndrome and stomach care, and have one to read about The Yeast Connection.
Does anyone have any idea of what started yours?
I have several things that I play back in my mind and think may have sparked it, but I'm just not sure. I have also been under a tremendous amount of stress, which may have contributed to it, but I'm not sure that's the sole reason.
I want to be one of the people who is healed from this, I just feel so lost as to which path I should take to try to remedy it.
I am supposed to see a doctor Friday, but I am not sure about the medical procedures - cystoscopy/laprascopy.
Did any of  you have either? I feel like I may need the laprascopy to see if endometriosis is a factor, but I've read scary things about the cystoscopy.

Christine222's picture
Christine222

Some of the main "causes" are a mix of a few things but usually include the pill, antibiotics, artifical sweeteners, heavy use of supplements, poor diet, stress, alcohol, medications. I declined all tests because I didn't feel I needed a cystoscopy just to tell me if I had or did not have IC because I knew I did have it, what else could it be. I also heard having any kind of abdominal surgery could make your symptoms worse thats why I didn't have that either. My gyno wanted to do a lap to check for endometriosis even though I had no symtoms of it my whole life. My periods were always normal, not overly heavy and my cramps were normal. I had never been on the pill either. It is scary but going the non alternative route only hopes to keep your symptoms at bay, they do not try to heal anything.

fahlmank's picture
fahlmank

Hi Me, The intelligent women on this thread have given lots of good advice:)
I have had IC for 11 years. I was 19 at my onset and have tried many different methods of healing/managing my IC. In retrospect, I am lucky because I had no other IC symptoms besides bladder discomfort, urgency for ten years. It was only in June that I began to have other IC symptoms. I began working with Dr.B on Aug 2nd, but began her diet in May. 
If I had to live my IC journey again there is only one change that I would make and that would have been to not have the diagnostic cystoscopy. Not only is it an incredibly painful and possibly damaging procedure, but it is not a definitive diagnosis... and, if your ultimate plan is to work with Dr. B, it is not necessary to have one.
Each of us needs to choose this treatment freely, because it is not easy, BUT it is an INCREDIBLE alternative for those who truly want to heal and not just manage. I bought Dr.Brizman's dissertation and scoured this website before I made the decision to go an see her. Read her dissertation.... it will answer many of your questions and help you be an able partner in your healing journey with her.
Sending good thoughts your way,
Katie