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Hi everyone,
I know it's only been two weeks but I am struggling with my expectations - I really have no idea what to expect, what will happen, etc.. I feel lost, especially on the days when the bladder pain is bad.I think I can see some improvements but when the flare arrives, I wonder if I am imagining it all. Can anyone please enlighten me a to what to expect in the first few weeks? How did you keep the hope alive? How did you actually get through it? What did you think????
Two weeks is such a shot time
Two weeks is such a short time to notice any change. I think most people find some relief starting the diet, but as for herbs, I think the relief takes much longer. I would guess on average 3 - 6 months. I know for me it took about 3 months to start feeling better, but I know just starting the diet before I went to LA was a huge help. I am now in my 8th month and feeling sooo much better. Most days are a 0 - 1.5 in discomfort. Hang in there, it will happen and it is slow. You will be fine.
In the beginning
Hi Vin 43,
I truly feel that we've all found an answer to our health problems. I saw too many strange things happen when I first started the program - not to believe in it. For me, crap and gunk flowing out of my body made a believer of me very quickly. The time that I felt my right side, under my rib cage, heat up and this tremendous warmth work its way through me, was awe inspiring. (I know, I sound deranged) I have seen so much improve - urethra pain is now rare,private parts rarely hot and dry, frequency almost non existent- my abnormal pap smears are normal again, my ears aren't closed up on the inside, my clitoris is no longer swollen, sex is pleasurable, I have toes for the first time in what I think is a life time. Ok, they aren't really pretty toes - but they're no longer these swollen sausage toes. These improvements are what I hung onto along the way. I know it's hard to be incredulous and feel wonder when you're in pain. So, for the moment, it's probably about putting one foot in front of the other. Please, please remember, that you are on a path to a destination. Once the pain gets under control, and I believe it will, you'll find the spirit to appreciate the journey a bit more.
Take Care
Thanks everyone - I understand
the 'journey' mentally but am struggling with the reality of daily living, especially because the kids all want their mum back! So tough. each day is a grind right now and I really seem to have no resources of how to start controlling this thing. I really appreciate all your tips.Thank you.
i totally get it.
i totally get it. i have a two year old and often i feel like i can't be the mom i want to be. whenever i see my friends taking their kids to disneyland, i feel that sophia is missing out because she has a mom like me. i get frusterated, but i will remember what one of my friend's friend told me. in fact, she and i were introduced because she has ic, too. she's taking the western route. she's on elmiron, had surgeries and has pelvic floor rehab to manage her pain and she seems like she's doing good. she wanted to speak with me because she knew how much i was suffering. we spoke and i was crying that i can not provide and do the activities with my little sophia and she told me this. she said her mother has ms and she had to do a lot of things on her own as a child. this helped her to be independent and made her the woman that she is now. when i spoke with her, she was such a POSITIVE person...she definitely has a good head on her shoulders! she did admit that she was upset when her mom couldn't come out to the dance on the dance floor when they were at a family bar mitzva party (15 yrs ago) and all the other activities, but she told me this and i will keep it this in my heart. she told me that since her mom couldn't go out and do physical activities, her mom provided her with lots of love at home by hugging her, reading to her, watching movie with her, and listening to her. she told me her mom is her BEST friend....and remember this vin43, it's only temporary because we will heal from this!
((HUGS))
you'll get there.
hi vin43,
my bladder pain was the same for the first two weeks. i've noticed other positive changes though such as my eye sight (everything seems clearer), weight loss, and felt less tired. i know how you feel..."when is this s*** going to end!" i have to say what got me through was reading the success stories whenever i felt like i couldn't deal with it. i was estimating when they were feeling less pain and it seemed starting 3 or 4 months from treatment....although everyone is different i still had to have an average time when things would get better to keep me going. end of this month would be my 3rd month into this treatment and i have to say it was about a week ago when my pain seemed a bit less than last time...my usual pain is always 6 - 7 every 20 min. until i pee then it is 3 or 4 and a bit worse during my cycle time, usually around 7 or 8 and surprisingly and not surprisingly at the same time, i was one day late and on a mid sunday i started my period...and my pain level was 4 and that's a huge change. that same weekend, the wine popping pressure during my initial pee has disappeared, so physically i feel that i'm getting better.
pay close attention to all parts of your body, i wished i had, but now i'm more aware so when i talk to dr. b. i know what to tell her and ultimately, a true evidence that i am getting better. some threads are scary, but when you physically feel and notice a difference other threads won't scare you as much...although it's quite normal to feel a bit scared of the future. Yes, i do enjoy all the positive changes, but i wished my vaginal pain was gone first....i know it will eventually,
HANG IN THERE...if i can do it, so can YOU!!
Feeling Lost
Just take one day at a time and don't think long term. I know it is hard, but everything takes time. We didn't all get sick over night, and it will take time to put things right again.
Hi Vin, I completely
Hi Vin, I completely understand! The day to day is tough... especially when I have so much I would like to do with my girls. After five months of treatment and a decade of IC, I have developed to pace myself and just work through the pain as well as you can using coping mechanisms. Clueless has great advice to take one day at a time...something I have found very challenging to do. The reality is that the pain just needs to be managed and find something to do to keep your mind and body busy so you can manage it. I often get on this website and read the success stories, I take long walks, I vent to my husband and family, I create artwork...whatever I can to just get through this flare. I will worry about the next when and if it comes. It is almost a matter of retraining your mind to not fear (and not raise those cortisol levels;)
Hope this helps;)
Katie