Discouraged

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I am so discouraged and tired of being in pain. Here's my story...I suffered with urinary retention in April 2011 during the 2nd trimester being pregnant with my 3rd child. By the time the OB sent me to the ER to get catheterized my bladder had 3 times the normal amount. I am fearful this caused damage.  I also had antibiotics at this time to ward off infection from the catheter.  Then, in July 2011 I started having severe vaginal pain and thought I had an infection. The different medicines prescribed set me on fire and did no good. Then, 10 days postpartum in October 2011 I suffered urinary retention again requiring another catheter and another round of preventative antibiotics. In December 2011 I had mastitis and had to be put on a 3rd antibiotic.  I have had a biopsy for the vulvodynia which came back negative for lichen sclerosis but the super swab came back positive for yeast. I have taken Diflucan numerous times in the past 6 months.  I am seeking alternative treatment because I am scared of the urodynamics test and cystoscope. Also, I have spent so much money on this condition in the past year and don't have the funds to spend thousands more on tests and meds.  I am currently doing physical therapy which at first seemed to help, but after 10+ treatments my pt thinks I might need to explore other options because I am still in a great deal of pain.  I did 3 weeks of acupuncture which seemed to help the bladder (not the vaginal discomfort) but at $500 for the 3 weeks, I can't continue that.  I read so many conflicting things.  The diet doesn't seem to help me. I just read that a bacteria can cause vaginitis and live in the bladders of IC patients. The treatment for this is long term antibiotics. Is this true? Could these long term antibiotics aggravate what might be systemic yeast? Argh! Sometimes I just want to scream. I want to finally feel better so I can take care of my 3 little children.  There are so many avenues I could pursue but like I said, I've spent so much already. Any advice, encouragement, hope, direction would be greatly appreciated! Thank you so very much!!!

deir's picture
deir

Welcome to the forum. I don't have a  whole lot of time but I wanted to respond. First off- I think many if not all of us can understand teh level of fear and frustration you are experiencing. There is so much information out there it can be truly overwhelming.   I contemplated the antibitic therapy but it seemed so wrong to me knowing what I knkow about how damaging antibiotics could be. I really didn't consider much of the main stream treatments although I looked into them and went to the "best" urologist in Philadelphia. I just knew from the start that they didn't get it. I thought about trying all kinds of natural things and I did also go to acupuncture and Naet which cost me over 2000.. But this is  the place where all the loose ends get tied up for me. I knew when I came to this site that I had found my path because so much of what was said resonated with me. That being said- it is HARD! But really- IC is hard and once I accepted that- yes, I have this terrible illness- then I could get down to the business of getting well. I don't regret my decision for one minute.
 
I have a 2 yr old, 6 yr old and 9 yr old. It is tough to be a mom and struggle with daily pain. (((((((((hug)))))))))))
 
ps- I was also tested (negative)for Lichens scelrosis.

Claire's picture
Claire

I'm sorry to hear you're in so much pain and confusion.  It sounds like you have a lot going on and it must be quite overwhelming, especially when you're feeling at a loss of what to do next.  From what you write, it sounds like your body needs to get back into balance.   This is something Dr. Brizman knows about and can help with, but it is not a quick fix.
 
I was first diagnosed with IC at 16.  Half a lifetime later, I've learned a bit about it (I think!)  First, I personally see no reason to do a cystoscopy.  Why put yourself through pain for a test to learn that you have something that western medicine knows little about how to treat or to hear that you don't have classic IC signs but you still have the symptoms?
 
Second:  I found that the philosophy of bringing one's body into balance made sense to me rather than treating the symptom of bladder/vaginal/pelvic pain.  It makes sense to me that this is a systemic imbalance.  I've held this point of view for some time, so when I found Dr. Brizman, it seemed like a natural fit for me. I've been in treatment  with her for a little over a year now, and it becomes clearer all the time to me that this is an overall body problem, not just a bladder problem. 
 
Third: Choosing treatment with Dr. Brizman provides really positive and supportive community of other patients who struggle with bladder/pelvic pain AND are getting better.  For years I read other IC sites that just felt so hopeless, and this is not the case with this treatment.  This is not to say I don't have doubts and fears, but I believe in the underlying philosophy and end goal, and feel supported in the process by people who are going through it or have been through it as well.  It makes it much less lonely! 
 
Forth: Even if the diet doesn't seem to make your symptoms better in the immediate, it may still help your bladder heal to eat whole foods that are easy on the digestive system and to not consume a lot of sugars.  Sometimes sugar can feel like it's soothing the bladder when it's actually feeding all the little nasties (yeast, bacteria, etc) in your system and then you'll feel worse later! 
 
Before working with Dr. Brizman, I worked with a naturopath, who was very helpful but not very knowledgable about IC.  Dr. Brizman knows so much, and it's a relief to find a Dr. who understands what's going on where others have shrugged their shoulders and wished me luck.
 
Just a little encouragement- I still have a ways to go to be fully healed, but my life is quite normal at this point and I am pain free much of the time now.  Good luck in deciding what course of action is right for you! 
 
 

MommaMiracles3's picture
MommaMiracles3

Thank you all for your support and encouraging words. I am hoping I can find someone to help me here in Georgia. I am the Mom to an 8 yr. old, a 5 yr. old and a 9 Mos. old and it is SOOO difficult being in pain everyday. I'm so worried about the financial aspects of this/these diseases as well. I get so depressed. It is encouraging to hear the success stories. I just hope and pray and I can find someone here who can help me and who I can afford. I will keep you all in my prayers and please keep me in yours!