Newly diagnosed...floundering at this point

[gailf]

I am new to this forum as well as this disorder but I'm glad my problem finally has a name. I am 63, have had chronic UTI's since I was 15 and tested over the years to no avail...then 2 weeks ago after 2 UtI's in 3 months my primary sent me to a urologist and this time the cultures all came back clean other than blood even though the symptoms were intense plus I have symptoms that are not UTI related. He also found a rectocele and he sent me to a new gynocologist and I am waiting for a call to be admitted and have it repaired. The uro will also be there to do a cystoscopy while I am asleep to check things out. At this point he has given me a diet and a bottle of Cysta-Q to try. I don't have intense symptoms at this point but I feel my bladder and urethra all the time so I know it's not too far away. I don't have extra weight on me so I don't need to lose but I've lost 4 pounds just from not eating much. It seems like when I think of getting myself something to eat it's something I can't have. I am thankful to have found this forum and hope to learn from all of you. I'm really not sure what to do next other than find stuff I can eat and wait.

[Gayle123]

Hi, I'm new here, too.

I also have a fairly substantial rectocele, as well as a small cystocele thrown in to complicate things. So, with all the things going on below my belly button, I'm not a happy camper! I've chosen not to do anything about the rectocele for now, unless it gets significantly worse. I'm just afraid of the pain and discomfort of going through the healing process after surgery I guess. My bladder is so painful, I don't want anything going on down there that I don't have to.

So anyway, I'm keeping my fingers crossed for all of us!

[gailf]

Hi Gayle; I had a hysterectomy when I was in my late 20's and also my cervix removed so gravity has taken over as well as all of this and basically I feel like my insides are falling out after I walk around a lot and since the bulge is pushing against my urethra opening she thinks that might also be causing irritation as well. I am really dreading it but I am trying to put it out of my mind and and just get it done. I have also had 7 back surgeries and now have a spinal cord stimulator implanted for pain management. I asked my gyn if this was going to feel like having another 8.10 pound baby with a 15 inch head and stitches from stem to stern and she said after 3 of those this will be a piece of cake for me and hopefully be only one overnight. I feel like if I can get this out of the way I can concentrate on getting my bladder healed before another attack hits me. This is all so new to me that right now I am grasping at straws I think.

[navemj]

Hi, Welcome to the site! You will find alot of useful information here. The struggle with IC can be a long journey, but the good news is, there are treatments out there! I do believe diet is the most important step. Have you looked under the diet section of this site? It will give you a list of things to eat and not to eat. Unfortunately I have had to learn to cook! I basicly eat meat and veggies. I am allergic to alot of things like milk and eggs! So my diet is very limited. I make turkey, pot roast, and pork chops with mashed potatoes, carrots, and other veggies. I pretty much have to stay away from all spicy foods. I have found at the beginning it is good to eat the same things for one week and keep a food journal and then introduce new foods into the diet. Everyone is different. You just have to find out the right diet for you.
Navemj

[ICNDonna]

I have had both rectocele repair and cystocele repair --- two separate surgeries several years apart. When I had the cystocele done, my abdominal organs were all dropping --- and they are now held up by a sling attached to bones. When I had the rectocele, I had constant constipation, which disappeared after the surgery.

Both surgeries were well worth the effort. Recovery was short and it actually helped my IC.

Donna

[gailf]

I have looked at the diet page and also have the little IC-Smart Diet Guid that came with Elmiron literature so am going by that. For over a week I have had not much of anything other than green salad with olive oil and either meat, fish or chicken and toast/butter or rice krispies in the morning. I am waterlogged and have been trying to think of something I can flavor my water a little for a change. Luckily I can drink milk but am wondering about ice cream. My doc said since I make my coffe fairly weak and use 2% milk I don't have to give up my one cup a day. I love chai tea latte and wondering if a cup a day would hurt or just give it up for now.

[gailf]

My bladder was done years ago and attached to bone as well but back then it was abdominal surgery and was pretty rough so since I have had so many heavy duty procedures I am telling myself this will be a piece of cake and will help the IC symptoms. I forgot to ask him what to do if it flares up and I can't void...suffer or make an appt. I am so used to popping a pyridium if it's a weekend and then flooding myself with water to get rid of it and then running in to leave a specimen and wait for the pharmacy. I guess I wouldn't go on an antibiotic anymore. This is so life altering and scarey.

[Sarojini]

I've never had a cystocele or rectocele -- yet. But, I just wanted to welcome you to our site :welcome: and tell you that we have a lot to offer a newbie. The patient handbook (link at top of page) is just awesome for info on all things IC -- and the veterans here can give you their advice about what worked for them. :)