Interstitial Cystitis

[livingwith]

So I am 25 and was diagnosed with IC in March I have had these symptoms for three years my gyno thought for the last three years that it was my cervix hanging low because I had three children. Well that was not the case, I had the surgery in March to determine whether or not I did in fact have IC and low and behold I did.
I have gone through the rollercoaster of emotions, at first when I found out what the hell it was I was extremely depressed, Then I tried to take a head on and try to control ...Read the full article

[yribarren68]

Hello my name is Marisol I too have I.C please don't give up...I was diagnosed in2005 and it has been a rollercoaster for me...Its hard when you have children..I have 3 kids and i too have difficulting doing things with them...I have been on elmiron for about a good year and it didn't help so my doctor took me off it...I was then put on paxil for 2 years and that didn't help all it did was make me not care to much about life...Thank god i got off of paxil because my memory was getting bad....
My doctor then started giving me dmso medicine directly into my bladder..I would have to go in and through a catheder he would put the medicine in and i had to hold it for 30 minutes.....I would get this medicine every 2 to 3 months....80% of the time it worked but ofcource my flairups would come back...It is very hard to deal with this because i have been a stay at home mom and now i need to work...Finding work might be hard but i need to...I told my doctor that im getting tired and the other thing he can do is surgery to expand my bladder filling it up with warm water but i have to be put under and pain will come after i wake up that scares me...STRESS ,Caffine and acid foods triggger flairups...A heating bag helps me alot and taking warm baths or drinking tention tea by celestial seasonings can help....Exercise also helps i love to talk to my god and pray it keeps me calm for the day....I DO KNOW WHAT YOU ARE GOING THROUGH your kids are your purpose to continue...

[ce36]

Hi,
I just responded to another post for helpful comments for me. It's the one called 4 years of IC pain.
I'm 41 y.o. and have one son. At 19 y.o. I was dx w/endometriosis and surgery and bye. As of 2 weeks ago after hell this year, I went to a specialist that i researched and he found growths, adhesions and you name it. the pain was unbelievable. He removed everything and all benign.

However, now that I'm 2 weeks postopt, the bladder problems started again, the pain, the urinated every hour w/urgency...It's so hard. I was started on the Elmiron and the dye and for one night I only went 1x in the middle of the night and was so happy. However, today is a new day and same old thing. My specialist for the endo. said he's almost positive that it's IC. The specialist he referred me to is out of town 3 weeks. I can't wait that long so, once again, I'm on to researching whose the best w/the newest innovative treatments.

I know it's hard but plz do NOT give up. You are young. Who the hell knows what break through they'll make. The women w/4 years of pain seemed to find a cocktail that works for her.

I totally understand what you are going through b/c since 19 the endo was hell w/pain and this IC is over the top. I have a high threshold for pain too but this is a differnt beast but let's beat it and not let it get us.

Let me know how you are doing.

I can't remember from your site, did you undergo surgery? how was it? and did they biopsy and/or look for ulcers?

Take care,
CJE

[Littleangel0499L]

I did go in for the surgery, he wanted to make sure that it was not bladder cancer, and maker sure nothing else was going on. My doctor told my husband that my bladder looked like a face with measels it is just what every girl wants to hear. He told me that he has had a couple cases that had actually improved after the surgery lucky me I was not one of them. I was in alot of pain after the surgery and it took about a month the first time around after being on the meds for me to see any signs of improvement, but now almost 7 months later I am back to square one. I do understand what all of you are saying and I try I really do not to give up, but some days it is just to damn hard, I will wake up in the morning and things will be going great and then BOOM out of the clear blue I am knocked down, and can barely move, I had one incident that was so bad my 5 year old daughter had to help me to my bed because I had the hardest time walking, see I have the problem that when I do get flareups it goes in my back through my stomach and down my right leg why my leg I have no idea. but my doctor said that is not uncommon. I think the reason why it is so hard for me is because the fact I didn't have a good childhood and I always thought growing up that things are going to get better and I will be able to give my kids everything that I never had growing and be able to do things with them, and then this happens and it seems unfair you know, Some days I feel like I am being punished for something I never did. Like I said before if I didn't have my kids or the wonderful husband I have I really would have given up. but it really is hard to go on everyday when 95% of the time I spend with my family I am on perks because that is the only way I could funtion.
I would read some of these stories and would feel bad for some of the people on here and would thank god I did not have it as bad as them, but again I think what I had was the calm before the storm and now I am right there with them. I don't know I appreciate the comments and I do promise not to give up yet and try to keep faith that something good will come my way but in all honesty the way that I look at it is if they can't even find a cure for cancer yet the chances of them finding one for this just don't look good I mean crap they don't even know what the hell it is. well anyways thanxs again I hope things get better for you and everyone else. =_

[giapooh]

Don't give up, girlfriend! I was the "worse case" they ever saw" after they did the testing. Your bladder looks like that because it's thin and the nerves aren't doing their job. You did nothing wrong to deserve this, it was meant to happen to us. It's the capillaries that looks red on your bladder. I used to lay on the couch in the fetal position, crying! No one really knows where it comes from but I have suspicions although men get it to, but only 10%. I was going to the bathroom every 2 minutes because I was so full with urine I was leaking. I had to catherer every single time I pee'd. Now I had the test surgery in July, and the implant went in in August. Best think I could have ever done for myself. Get some info. to help you relieve yourself. Get some books, there are a lot in print. They are very helpful. You have to follow the diet and tell your doctor you want help, NOW! If he doesn't, then you find another doctor who will. I got lucky and scored right away. Antibiotics make it worse. Some vitamins are not helpful. You should be on Elmiron and Prelief. I am no longer on pain meds. I remember lying in my hospital bed before surgery begging for some pain relief from the anesthesiologist because I was in so much pain. Please, go on the INTERSTITIAL CYSTITIS ASSOCIATION WEBSITE, I promise you will find a huge source of information Re: diet, docs in your area, books to order, etc....Promise you'll do it. Tell your doctor you want to discuss the INTERSTIM IMPLANT with him. If he blows you off, he's not your doctor anymore. The website on ICA will direct you to a doctor in your area who specializes. Also i found that ice packs help if I put them on my bladder, eat small portions of food everyday, not one huge one. Advocate for yourself. You deserve it. I wouldn't wish this on my worse enemy. Now, please go do what you have to do and let me know how it works out for you!! feel better..giapooh PS DON"T GIVE UP!!!!

[giapooh]

This doesn't have anything to do with Endo. It's something totally different that 10% of men get also. I suggest that you go on the web on the Interstital cystitis site and gather all the info you can. It's all there for you. It's hard to live with it, believe me. I take my elmiron, 1 tsp. baking soda, an SSRI, and 2 supplements that are only available through the website, ICA, called CystoProtek and Desert Harvest Aloe, they are NOT available anywhere but on this site. They have helped me a lot. It's basically glucosomine and chondrointin. The Aloe is dried a certain way so don't take regular aloe pills, they will hurt you. Copy and post the diet in your kitchen and keep it in your kitchen and take a copy with you. The Vicodin didn't help. I was referred to a pain clinic but once I got the Interstim Implant, after a few weeks, I had less pain and flares. Sex stirs up some pain but not to the degree where I had to abstain for a while. There are even certain positions that are recomended..women on top, use lubricant and pee right after. Use a cold pack. I read in almost every book, if your doc. isn't listening, cast him away, you don't need the aggrivation. The web x the Intercystail Cystitis offers books, the IC diet, which I suggest you start following ASAP, find a doc. in your area who specializes, which is also on the site...go onto medtronics and look up the Interstim Implant and find a doc. who does it. The site will send you a free DVD and pamphlet. The best thing I did was get the implant. I cannot tell you the difference in my life it has made! I still have to take my meds and follow the diet for eating and directions for intimacy, bcause this is a chronic illness and we have to deal with it as it is right now. I have read about 6 books and joined the web and they sent me more. You don't have to join the ICA to reap the benefits of the site. You can still buy books, find a doc, etc...
Lots of blessings coming your way,
Giapooh

[ce36]

Dear littleangel,

thanks for answering my questions since I"m just beginning the process of getting tx for IC. Most of my docs are all away and I have flare ups like you mention. I've been reading and getting excellent advice from this site. For those w/extreme flare ups such as yours, I've heard the "Implant" is the way to go..I do agree w/the responses to your site re: how important it is to get an excellent doctor and discuss the implants and other adjunctive treatments.

I am supposed to get the surgery to dx and r/o bladder cancer. I may not be ready for the implant since I'm still out in 3 weeks of post opt surgery for endo wich is independent of the IC symptoms.
So I plan to try medications and see if I can repair the lining of my bladder w/diet, meds and some lifestyle changes. Right now, I'm on pain meds and even w/those, I get flare ups that leave me crying too as well as vomiting and diarrhea. I am going to fight this and I am sending lots of warm healing thoughts your way. I hope you look into the implant option as you sound as though your IC is very very severe. Also, I want you to know that you sound like an excellent mom and there is no way that this is a punishment.

Please keep in touch and if there is anything that I can do, please let me know,
Best,
Caroline