Jessica, I completely sympathize with what you are going through. At the one year mark, ( and at the two) I still questioned treatment quite a bit and felt as though I had made very little progress. I truly did not begin to have significant stretches of stability into 2.5- 3 years in and even now, I still have flares but am MUCH improved. Take heart, it will come and you are on the right path;)
Katie

Hi Jessica,

I'm sorry you are feeling so down. I have been in treatment almost 11 months and have had bladder and/or urethra and/or vv pain throughout. It's a slow process and what I realize is that many OTHER positive things have changed for me: I eat healthily (I'm still on List 1), I'm on no stimulants, my anxiety has massively lessened, I'm only getting up once a night and otherwise sleeping well, I have respites of way LESS bladder pain, I'm not constipated, my bladder pain has lessened overall as I'm not walking around "clenched" all the time, I don't crave sugar anymore, I don't feel the need for a glass of wine, I'm more grounded and centred (as I've gone underground to get better). I don't get headaches. My frequency and urgency has gone away. So, even though I still experience pain, I believe I am in a WAY better place now than I was a year ago. Doing this type of analysis helps me to stay positive.

Just over a month ago, I was down as you describe above and then, amazingly, my pain went way way down and for 3 weeks my pain level was a 1-2. Then last week, the pain came back again (got my period after a 4 month absence). Returning to a high level of pain was hard and I certainly sympathize with you. Remarkably, today however, I feel a ton better. So a big leap forward and then a few steps back again. I have accepted this is how the treatment goes and that has helped me stay positive.

Some things I did that helped bring down the constant pain (or high level of pain):
Changed up the way I eat. On list one, there was a time I was eating a whole stalk (sometimes more) of celery a day. Once I started switching it out with zucchini and broccoli things improved. I took out spelt bread. I stopped eating potato chips. I varied my proteins more (sometimes I would have red meat three times a day now I have it once a day). I tested a bunch of waters to see if one was better than the rest (I drink Fiji water). I use butter to cook with rather than oil. I vary my starch. Originally, I would make a pot of rice and eat it with each meal until it was gone. Now I eat rice at one meal and potato at the next.

Changed my hygiene products - I use Green Beaver toothpaste (I believe this change really helped me) and natural deodorant. I don't take any baths (this was a hard one for me as I LOVE baths) but now I"m used to showering. (My vagina would burn after a bath). I use mineral makeup. I use Bomamed shampoo - I realized the smell of my beloved shampoo was bothering me. I use Lunapads during my period. I use the Bomamed sunscreen. In November I forgot to bring it on holiday and one morning I used the regular screen and my bladder got more sore.

For pain, I use one of those ice packs that one wraps around their head. I have a few in the freezer and I put it between my legs at night if the pain is too much. I also have a big heating pad that I lie my back on. And, I have learned to surrender to the pain sometimes. For the first 8 months, I was fighting it. I would try to continue on with my busy life even though I was in screaming pain. Now, rather than worry about a messy house, I will have a lie down with the ice and heating pad.

I believe after this 3 weeks of feeling awesome that I am turning the corner. Had someone said to me a month and a half ago that in a couple of weeks I would be feeling like my old pre IC self (over 14 years ago) I would have said NO WAY JOSE! I really could not have perceived that I would be feeling so great. And yet I did feel great for those 3 weeks. So this is a loooong message to say HANG IN THERE! I understand where you are right now as I have been there also. What really helps me is to take stock of the positive things that have changed. As we know IC was a long time coming so it can take a long time going.

Hi again Jessica,

One thing I forgot to mention is that I have learned to be clear in my communication with Boaz about my level of pain. He has adjusted my protocol in efforts to alleviate it. In the beginning, I don't think I did a good job of explaining how much pain I was in. (Minimizing IC pain is something I did for years) Also, discussing what each pill is for helped give me a game plan to follow. Finally, while I know everyone is on their own journey that involves a protocol specific to their needs, I thought I would mention in case it helps you, that I believe things started to really improve for me when I started taking SF722. Again I only mention this on the off chance you are starting to take it and thus it can give you some hope.

Jessica, after one year I had improved some but was still really waiting to turn a corner, so to speak. Can I ask what your protocol is currently? The healing goes in phases. IT was not until I was ready to tollerate strong anti-fungals that my bladder responded. But my bladder could not tollerate the herbs until I got stronger in the first year in other ways. It goes in layers and hopefully we eventually have some longer windows of relief. That is how it has been for me. Mostly now my discomfort is urge/frequency for a day around ovulation and maybe an afternoon here and there and a day or two before my period. I have had a bunch of pretty good months and realized that last month I did not contact Dr. Brizman for 3 weeks! (I am 2 + years in treatment). Recently my bladder is wobbling but this is because I changed my diet dramatically to manage my persisitent bloating (I cut grains and potatoes AND fruit and nuts-I was on list 3) and this is causing some bacterial die off that is affecting my bladder but dr. B is helping and my bloating is SO much better so I am encouraged I am uncovering another layer. Let me know if you are having any digestive symptoms. It sounds like you are not having constipation, which is good, let me know if there is anything else. Sometimes we can offer a bit of dietary advice to eachother that might resonate. I hope you can keep going and look for signs of improvement!

Haha I just read EJH's last post which starts out like mine! (SF722 being necessary for some of us to see a shift, but not being ready for SF 722 in the first year). This is why I asked about your protocol, so let us know!

You will find that there may be many ups and downs with this treatment, you may find you have a few goods days and then back to bad ones again, the good days will get more and more and the bad days less. I am 2 years in treatment and barely feel my bladder, frequency is my main symptom now and that has improved greatly. Improvement can be so gradual it can sometimes be hard to see, I would always look back and think how bad I was when I went into treatment and then could see the improvements even though they may have been small at the time.
Things will get better, I know DR M said once that frequency can sometimes be the last thing to improve, but for others the pain may be the last thing to improve, we are all so different. Hang in there and stick to the diet and use only approved products and things will get better.

Mimi that SF722 is powerful stuff, she took me off the Oil of oregano when my lips started swelling and and put me on SF722 that is when my die off from hell started with the horrible rash , and I was only on 3 drops. So she had to stop it, I guess it did its job as 4 weeks later still itching but it's getting better. It certainly cleared out something. She said not to throw it away as may go back on it down the road.

Cathy yes, dont throw it a way. LOL. I have been on it 4 times (sorry, but true!) and this last time for 8 months. Ugh. It busts up biofilms and apparently I have a LOT. I have had candida for 25 years, so no joke this is slow going (before anyone gets surprised by that number, don't be surprised if you have also had candida most of your adult life-not all of us, but many, and many in the general population, just not as symptomatic as us!) Hoping to not be on it for long. I had weird bumps on my face when I started this more recent round of SF, and she used oil of oregano directly on the bumps and they resolved? Crazy, but I dont tollerate a ton of oil of oregano either. All of this stuff is strong. Amazing the general population can pop it like candy!

For me, I have had to stop focusing on the minutia of the diet. Not saying that everyone should do this. Some people do better when they focus on every little thing but for me, it was literally driving me mad. I never cheat but I have started to try to add things and not be as hyper vigilant. I take Dr B's advice. If she says I can handle sourdough spelt bread, I eat it. I eat cashews again and blueberries because they are delicious and since I don't notice an immediate bladder effect, she says that is fine. It is hard not to be in control of everything however, micro managing every bite led me nowhere but stress.

I was worse at 1 year then I've had ups and downs. I was doing pretty well there and now seem to be back to bad. Thjs is tough and there are no easy answers. Some people are luckier than others. I will tell you this though- you won't always feel this bad! Every day is a new day. I remind myself of that when I am feeling down.
I have developed all kinds of wonderful and soul expanding coping skills including faith, presence, compassion for my self and setting limits.

Jessica, You have received some excellent advice here so I am not sure what I can add. However, I will answer your questions at the beginning of the thread. I have actually had IC for close to 14 years, became pain- free for a number of years and then relapsed after my second child in a big way. I am now 25 weeks pregnant with my third;) I began the icama diet, developed an autonomic heart condition and then began officially seeing Dr B. That was August 8 of 2011. Although I have improved greatly, it has not been consistent or fast. I am not a patient that this has come to easily- I realize that after reading posts after 18 mos - 2 years some rarely feel their bladder. I still feel mine- almost constantly, but I am much improved. My heart condition is much improved along with numerous other things that I had previously perceived as "quirky". Frequency, urgency, pressure/pain have been the hallmarks of my IC. I do not have a history of digestive issues ( some with my pregnancy, but I don't count that as typical of me) .
Regarding depression and anxiety- it is real and the only way I have been able to survive, is to slow down and take each day one at a time. Projecting any thoughts into the future when you are in pain does not result in a helpful outcome. Time also has a strange way of erasing the memory of pain for me so if I can get through "this moment" I have been able to not look back to the last- and drag that energy with me. Reiki and massage has been excellent tools for me, as well.
These lovely ladies are absolutely correct that this comes in layers. My bladder has improved, my heart has improved, but I am currently having a year- yes, a year- in which my muscles are burning during "normal" daily activities. My point is that while there are no guarantees that healing will progress as we desire, I have searched for medical help all over the country and this treatment is the only one which has offered relief. Develop those strong coping mechanisms- research has always helped me.
Keep reaching out,
Katie

Hi Jessica, I don't have much to add, but just wanted to say I get your frustration with all this! It isn't easy getting through a day with constant pain! Just had my appointment with Matka today and we were just talking about this and how I don't want to continue to live with pain the rest of my life. She said it is so hard when we have so many things going on we want to tackle everything all at once and see these huge changes, but unfortunately we can't and our bodies wouldn't tolerate it anyway. :( I too just got put on SF and ZGL for my protocol.
Let's hope for even those tiny changes in pain levels with this. Sending you many happy thoughts! The years will fly by can't believe I'm coming up to my 4 year mark. A new fresh start is on my horizons so maybe I will start thinking of this as the beginning of year 1 not 4!

Jessica -one of  the best gifts you can give yourself is FORGET the time factor - it doesn't matter. It will only stress you out and you'll be chasing some ideal that doesn't exist. Just know that you are doing the best thing for you, your body and your overall healing - mind, body, soul! Be kind to yourself, be proud of what you have accomnplished and stay the course :)
 

Hi Jessica,

   I was fortunate that when I was diagnosed at 19 and the urologist suggested removal of my bladder, my parents took me to a holistic Dr who has left the Cleveland Clinic and began his own Preventive Medicine group. So, I never tried any medications or installations. I began making the connections between food and health pretty early.

As for pregnancies- I love being pregnant. I generally feel the same pregnant as I do while not pregnant in regards to my IC symtoms. I had severe IC with my first daughter, almost no bladder pain but other symptoms with my second and mild/moderate symptoms with this baby. 

Thank you for the compliment in regards to my strength. I made a decision at the age of 20 that I was not going to let IC decide my fate or keep me from my life. If I had to stop and pee every 20 minutes on my way to graduate school, I would do it. I have pretty much stuck to that promise my entire 14 years with this disease- it is how I have made it through somewhat;) sane.

How are you feeling today?

Katie

I guess we are all in the SF/ZGL club this week!