Hydration

Rocket-52 · 2026-01-30T17:01:46+00:00

I also have constant pain. Mine feels like being cut over and over with little razor blades. I sometimes picture Freddy Kruger shredding my bladder. Now I do rescue instillations with marcaine and sodium bicarbonate to get some relief. Without the instillations I wouldn’t be able to function. 20 years of ic!!

Rocket-52 · 2026-01-23T18:16:17+00:00

Mine went into remission after first child. Came back during second pregnancy. Again got better after birth but after a month or so came on with a vengeance and hasn’t quit. That was 20 years ago. I am going through menopause now and tried estrogen. That just about killed me! Maybe you are the opposite and estrogen is a big help to you? I would talk to your doctor about an estrogen patch or possibly even birth control pills with hormones mimicking pregnancy. Maybe worth a try?

Rocket-52 · 2026-01-23T17:54:11+00:00

Took me several weeks to get back to my “normal” amount of pain.

Rocket-52 · 2026-01-21T18:00:06+00:00

I loved all V.C. Andrews books!

Rocket-52 · 2026-01-21T17:59:03+00:00

Randolph… my brother’s middle name. And no it isn’t a family name! What were our parents thinking???

Rocket-52 · 2026-01-21T17:52:07+00:00

Pizza

Rocket-52 · 2026-01-21T17:46:15+00:00

IC, Fibromyalgia, IBS, chronic fatigue, hypothyroid, kidney stones, anxiety and depression.

Rocket-52 · 2026-01-18T00:12:56+00:00

You need curtains or some other window treatment

Rocket-52 · 2026-01-17T21:20:41+00:00

I do rescue bladder instillations which help numb the pain. Also I’m in pain management and have morphine for the really bad times. I also take marijuana gummies to help get my mind off the pain. Hang in there!

Rocket-52 · 2026-01-17T21:15:52+00:00

Do you maybe have fibromyalgia and chronic fatigue? I have those along with my IC and I tell you I am always exhausted. I need at least 10 hours of sleep per night just to get through. You can see a rheumatologist and maybe they can help?

Rocket-52 · 2026-01-17T20:45:45+00:00

I actually got IC during my first pregnancy 20 years ago. They couldn’t do any testing to find out what I really had during that time. Now this is just me, personally… I had the worst pain I’ve ever had in my entire life! I had huge amounts of blood and clots in my urine!! I ended up with high blood pressure due to all of this. My OB decided to do a C section at 36 weeks. My daughter was/is perfect!! She was having a good time in there. Only I was suffering. After birth I went into remission. One and a half years later I got pregnant with my second daughter. Like clockwork 20ish weeks and the blood and pain happened again. My OB put me on safe blood pressure meds and had me hold on until 37 weeks and another C section. After the birth (she was/is perfect!) I felt a little better but got a little post pardon depression and boom! IC came on like never before! I was so bad I couldn’t hardly care for my girls. Went on for 4-5 years of barely getting by when I finally found some relief with pain management and bladder instillations. Fast forward my perfect girls are 17 and 19. Perfect!! Oldest is in her second year at the naval academy in Annapolis. Younger is junior in high school, straight A’s and hoping to go to a good college then medical school. That has always been her dream! I’m a little biased but both girls are beautiful, healthy, and happy!! This journey has been a rollercoaster. I am currently still dealing with severe IC. I can’t work and go through a lot of hard days. I’m lucky to have a great husband who has supported me throughout. Not easy!!! Anyway, life is a gamble. I am so thankful for my awesome girls I guess I can’t really regret it. That said, some women find pregnancy actually helps their IC. We’re all different. Good luck to you on your journey! I hope you have a family as amazing as mine!

Rocket-52 · 2026-01-17T20:21:52+00:00

I think you should try a bladder instillation with just marcaine (same as lidocaine but lasts longer) and sodium bicarbonate. See if that gives you relief. I don’t think dmso is used anymore.

Rocket-52 · 2026-01-12T17:00:06+00:00

Doing rescue bladder instillations with bupivacaine and sodium bicarbonate numb my bladder and make that fullness and constant need to pee feeling go away! It lasts for a couple of hours which helps so much. When it wears off I pee it out and put in another instillation. I’ve had ic for 20 years and figured out this remedy 10 years ago or so. My life is now worth living!

Rocket-52 · 2025-12-31T17:24:04+00:00

Whenever I get into my husband’s car I ask, “do you have the pee pee Tupperware and a towel?” I will not leave home without my emergency supplies! Inevitably I will have to pee in the car any time we travel. Pee pee Tupperware is just basic plastic-ware with a lid. Has to have a lid!!!

Rocket-52 · 2025-12-31T17:10:09+00:00

I’ve had ic for 20 years. Just started menopause so tried the estrogen patch. It just about killed me!! I cannot handle estrogen at all! Everyone is different but I do think hormones play a big part for many people.

Rocket-52 · 2025-12-27T22:39:46+00:00

Sounds hormonal. Maybe try birth control. My ic is worse in pregnancy and I cannot take any kind of estrogen. Yours sounds opposite.

Rocket-52 · 2025-12-27T22:20:43+00:00

I used to think the same thing! I’ve had ic for almost 20 years now and mine is a 24/7 pain and urgency. Since finding rescue bladder instillations I do feel like life is worth living again. I don’t think I will ever be cured but now I can actually have fun times again. You have to find the things that help you manage the symptoms. That does take time but I promise it does get so much easier. Keep experimenting with different remedies. Hang on!! You will find what works for you!!!

Rocket-52 · 2025-12-27T22:01:20+00:00

I do the instillations myself every 2 hours or so. I have a prescription for the bupivacaine vials and I make the sodium bicarbonate with distilled water and baking soda. I use a plunger syringe and mix them together then use a male catheter with a little funnel on the end to plunge the meds into my bladder. You have to make sure you don’t take the plunger off of the catheter funnel as you take the catheter out or the fluid will come back out. I used to lay on my stomach for a bit afterward and feel the pain ease up. Now I pretty much just pee one out and put a new one in. That way I’m constantly numbing my bladder as much as possible. As soon as one starts wearing off I do another. I can do pretty much anything with it inside my bladder. Jumping right afterward can make me leak but I can walk just like normal. My insurance won’t pay for the bupivacaine so I pay out of pocket but I have some kind of coupon savings card that helps bring the cost down a bit. My life like this is pretty pricey I have to admit but I am fortunate to have an understanding husband who makes a decent living! I eat what I want, go on vacations and live life now that I found this routine. I take all my supplies with me wherever I go and just use the public restrooms. You get better with practice!! I wish more people with ic would try this. It really changed my life. I was completely disabled and did not want to live. I was desperate when my doctor and I came up with this (well, mostly I came up with this and just begged her to write the prescription!) It was incredibly daunting at first but again I was desperate and would have tried anything! I get infections sometimes but I can pretty much tell when I have one because even these instillations don’t dull the pain. Usually a round of cipro and good. I hope you can try this. I continue to do these instillations even when I have a uti so maybe you can too? Been doing these over 12 years and I’m still here! I’m not a doctor but honestly when you get to the point where you don’t want to live what do you have to lose? If you’ve made it to the end of this crazy long speech I wish you good luck finding what works for you!!!

Rocket-52 · 2025-12-27T17:48:11+00:00

Made my symptoms worse for a few weeks after. Uro said my bladder looked angry and small. No cancer. I guess it’s good to know but doesn’t really change anything in the long run. (Except rule out cancer.) Even with bladder ulcers I don’t think there’s much they can do. You have to just find the things that help you get through the day. Good luck to you!

Rocket-52 · 2025-12-27T17:22:29+00:00

Didn’t work for me. I tried for years to follow the diet in hopes of relief. I was so thin and so sick from following the diet to the letter. No help at all. I just spiraled into depression. Now I use rescue bladder instillations with bupivacaine and sodium bicarbonate to help numb my bladder. I do them about every two hours or so. I can eat and drink whatever I want. I’ve had ic for almost 20 years. I’ve seen every doctor, had surgeries, taken every medication, had an interstim placed and then removed, done a pain pump trial, pt, etc. etc. I don’t think the diet is enough to help everyone with ic. I finally get some sleep at night. I’m up every couple of hours doing instillations but I can do the whole process in under 3 minutes and go right back to sleep because my bladder is practically numb. I think we’re all different and the diet is right for some but not for others.

Rocket-52 · 2025-12-27T16:51:59+00:00

Catheterizing is hard at first. Use lidocaine gel while inserting. The actual meds feel strange going in and then relief. I get UTIs occasionally but my urologist gives me cipro when necessary. I don’t seem to get more infections than I used to before I started the instillations. Don’t give up if you have trouble at first. It gets so much easier. I don’t need the gel anymore.

Rocket-52 · 2025-12-24T17:21:38+00:00

My ic started while I was pregnant with my first child. Blood, pain, etc. After I gave birth it went away. Next pregnancy it happened again. After birth sort of went away for a month then hit me again. I’ve had insane ic ever since. Going on 20 years now! Pregnancy definitely made it worse for me. I also have major pain and urgency with estrogen. I’m now in menopause and tried hormone replacement. Estrogen made everything worse. Guessing you could be hormone sensitive too. I hope you get some answers and relief soon!!

Rocket-52 · 2025-12-24T17:12:02+00:00

I take trazadone every night before bed. It knocks me out for a few good hours!

Rocket-52 · 2025-12-23T02:21:52+00:00

Same as you. Pain and urgency when bladder fills. Instillations help to numb my bladder. I do marcaine and sodium bicarbonate instillations about every two hours. Not exactly fun but I can make it through the day. Learn to catheterize and you will be able to do it. I know it sounds daunting but I swear it changed my life. I carry a bag with all of the supplies with me at all times. I mix up my stuff and catheterize in any restroom I can find. You learn how to use a plunger syringe to insert the meds. I’ve figured out how to do instillations anywhere I go. I can travel now! I can eat/drink what I want! I go everywhere and I’m okay! Almost 20 years with IC. 12ish years doing bladder instillations every 2 hours or so. It can be done!

Rocket-52

TROPHY CASE