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Apr 23, 2016 1:09 PM

Sorry I'm so late in getting back on. My iPad charger and myself had a disagreement apparently. I did get an answer from the urologist. Turns out my bladder was extremely irritated with the cystoscopy. Showed no cancer or anything else to that affect. But as you guys probably remember, I've been having what I could only describe as pelvic muscle spasms for about 2 weeks. Enough so that I had to go back to the PCP for a 2nd time, because I was getting woken up in the middle of the night with pain. She prescribed 50 mg of Ultram once daily as needed for pain and asked me to have an ultrasound. Well, went to urologist on the 20th and it turns out that I do indeed have interstitial cystitis. It would explain the 3 flare ups since last year(last July, January and now). I was a little down in the dumps when he told me that. But at this point, I'm really happy to know the pain isn't in my head. That it is real and that it has a name. Got taken off the Ditropan XL cause it wasn't really working. Meds got switched to Elmiron, but my drug company requires a prior authorization with that one, which can take 5-10 days. So currently being managed with diet and Ultram until we can get effective meds on board. And I did touch base with my PCP, told them what the urologist had said, and she said that there is NO need to do the ultrasound any longer, as we have a reason why. Thanking God for my urologist and my gyn. They have truly kept me more sane then normal these past couple of months. I do already have some trigger foods: red food dye, tomato sauce, orange juice, soda(yep, not happy with that one), and NutriSweet/Splenda. Also got limited to 2 8 ounce cups of coffee daily, but that doesn't phase me. Just wanted everyone to know that I'm back, but I'm having to use the desktop version for a bit. Blessings

Apr 23, 2016 3:05 PM

At least you found out what is what so far. Bless bless πŸ’ 🌞 🌈 πŸ™πŸ™πŸ™you got this!

Apr 23, 2016 3:44 PM

Kamel, it just feels AMAZING to not hear them say it's all in my head already. That again, it's real and it does have a name!!!!!!

Apr 23, 2016 10:04 PM

Amanda, I know what a relief it is to know what was causing the pain. And I'm very glad it wasn't cancer. Rest up and avoid passing by the soda isle in every store. I have to take alternate routes to avoid the donuts! Lol. Hugs & prayers for a peaceful night's sleep tonight, for everyone! πŸ™‚πŸ’•πŸ™πŸŒΌπŸ’€

Apr 23, 2016 10:35 PM

I'm glad you have answers if you need to talk or need any information on it feel free to ask me. I lived with for years. I lost my bladder to it. I still with an ostomy have extreme frequency. So as not to scare you to much, I was an extreme case. I went through every treatment there was. One thing I can tell you that might take a bit of pressure off is diet change does not help at all. For me they're now thinking my IC was caused by lupus, since I've just been diagnosed with it.

Apr 24, 2016 5:40 AM

Flappys and Gibber, I know this might sound crazy, but did you guys have any flare ups associated with your cycles?

Apr 24, 2016 9:06 AM

I didn't have anything except extreme cramping and excess bleeding while having cycles. When they took my uterus most of it stopped. Then my chronic issues began.

Apr 24, 2016 9:38 AM

I honestly can't remember but it's not crazy. Hormones can definitely affect it.

Apr 24, 2016 3:42 PM

Okay now I feel better about it. I had to send in a message to my gyns office again asking if we can change the timing of the Provera around. It seems like whenever I have a cycle, the IC acts up as well like big time. Literally have been in bed from about 10:45 until 3:30 or 4:00 with pain. Of course, my cycle started last night, so that should probably tell me something.

Apr 24, 2016 4:06 PM

Ugh not fun. I hope it eases up. Hormones can totally cause trouble. They're such a pain

Apr 25, 2016 6:24 AM

Glad you're back AmandaMiddleton equally glad that you have some answers. It's interesting how we all have so many of the same struggles. I share the bladder issues too. I am often glad to read these posts so I know I am not alone and it is NOT in my head either Amanda. I appreciate the sharing of treatments because it gives me ideas of what to suggest to my doctor. The sun is out this morning. It's not as enjoyable as it use to be because the sun burns my skin badly because of my medication. Wow does it burn! Have a blessed day! β˜€οΈ

Apr 25, 2016 6:37 AM

MSK, NO it is not in your head and don't let anybody tell you that. Keep trying and NEVER, EVER give up. Keep pushing!!!!!!I don't remember if you are on Ditropan or not, but if it doesn't work, please don't hesitate to go back to the doc who prescribed it and tell them it's not working. I actually had to advocate for myself last Wednesday. I was not leaving that office until I got an answer as to what this was. There was NO way this was overactive bladder especially not with the amount of pain that I've been having here recently. Usually, IC is a diagnosis of exclusion. In my case it was, I kept having symptoms of UTIs but always had negative urine cultures. But still I would have symptoms so something wasn't adding up for me.

Apr 25, 2016 4:11 PM

Got the prior authorization for the Elmiron FINALLY. Hopefully this works better then the Ditropan did. Will have to pick it up tomorrow. Just took a pain pill in order for it to settle down. Not going out anywhere else tonight. Hoping that tomorrow will be a better day and that my gyn will either schedule me for an office visit or just give me the authorization over the phone to tweek the Provera. I think my cycle brought on that last little flare, but boy that was NOT fun!!!!!

Apr 26, 2016 8:40 AM

Gibber, I just spoke to my gyns triage nurse. The response was that yes, I can change the Provera around to 3 months on, 1 week off. But, he said he has never heard of IC causing increased pain with cycles. My first thought was WTF. I guess I'll just have to further address that with my urologist at the end of June with my next appointment. I don't think I'm going crazy yet.

Apr 26, 2016 8:47 AM

Not going crazy Amanda.

Apr 28, 2016 9:15 AM

Nope not going crazy at all. Just because he hasn't heard of it doesn't mean it's not true. People may not always make the connection. Also he doesn't have IC nor does he have cycles.. Lol.

Apr 28, 2016 5:13 PM

Gibber, that didn't even come to mind until I saw your post this afternoon late. It ashame we can't transplant IC bladders into people so they can understand it.
I hate having to go to Walmart and having to drop everything in the middle of the store to make a mad dash for the bathroom, and try to run anybody over in the process.

Apr 28, 2016 5:48 PM

Yeah if only they could understand! I know where every washroom in every store, and restaurant in all surrounding towns and our city are. I know which ones are less busy or have private handicapped options. I now don't have a bladder so when my ostomy pouch fills, It can't wait. It fills crazy ofen. Sometimes every couple of mins. Perocette that I take for lupus pain is actually the first thing that has ever slowed it down. I have to remember to tell the internist that the next time I see him. He plans to ween me off. It's given me back a piece of my life. I don't want it taken again. Lupus has robbed enough already.

Apr 28, 2016 6:05 PM

Cranberry juice is good for IC, it kills harmful bacteria in the bladder which cause bladder infections, I too have IC & have cured myself of bladder infections this way; it does nothing for the constant pain in the bladder however.

Apr 28, 2016 8:26 PM

Are you meaning me? I don't have a bladder.

Apr 29, 2016 6:06 AM

Gibber, NO, I meant me. I wish I could just give him mine and see how much he likes it. Tidley, I can't have cranberry juice. My urologist has already told me NO, no fresh acidic juices(orange or cranberry). Too much acid sends me into a flare up BIG time.

Apr 29, 2016 8:40 AM

Have you been told if your bladder is ulcerated or not?

Apr 29, 2016 10:33 AM

Gibber, he didn't say anything to that effect, but I don't know if a hydrodistention was done or not. He just my bladder was incredibly inflammed and irritated, but he didn't say anything else about it. Will check again in June.

Apr 29, 2016 11:04 AM

It might be a good thing to know and or watch for.

Apr 29, 2016 11:08 AM

There was something going on at one point, enough to produce blood in the urine, but everytime I give a urine specimen, there's always blood or traces of blood, so I don't really know if that is related to the IC or not. It also shows protein which they haven't figured out either. Now that I have a diagnosis, I've kind of chalked it up to that. Cause I have no kidney issues. Just bladder.
Gibber, before you had your bladder removed, did you have pretty frequent cystoscopys? Just wondering at this point, what is down the road after that first initial diagnosis? Or did you have them only for progress checks?

Apr 29, 2016 11:23 AM

Did you want to PM on my FB page? I'm happy to answer any questions. I'm Carrie Go on FB. Or I can give you my email.

Apr 29, 2016 12:43 PM

At this point, I think I'm okay. If I need to chat, I'll find you.

Apr 29, 2016 2:26 PM

Ok. I think I had them every 6 months both to check on things and to try and expand my bladder. Protein in your urine suggests kidney involvement. You could have blood in your urine if your bladder is ulcerated. How are they treating things right now?

Apr 29, 2016 2:44 PM

As far as drinking cranberry juice for bladder prob. I can't drink it, my ob/gyn suggested cranberry pills. That is what I use.

Apr 29, 2016 2:46 PM

Silvrrry it won't help with IC because it's not an infection.

Apr 29, 2016 5:57 PM

Gibber, at this point, only doing Elmiron. Occassionally, I WILL use the Pyridium if I absolutely need it, but haven't needed it since first week of March I think. Occassionaly, if the pain gets intolerable, I do have Tramadol handy, but I tend to use it ONLY in emergencies. I think we might be discussing further treatment options in June depending on progress. He did say something in passing about possibly doing bladder instillation but that is not something that I want to do at this point, given that I'm high risk because of MRSA. I just don't know.

May 01, 2016 1:41 PM

I hope it helps. Bladder installation helped me but it makes a person Smell awful after. It comes out of your pores so I didn't want to go anywhere after anyway. It's also invasive.

May 02, 2016 6:02 PM

Sorry about the cystitis Amanda. I heard that can be very painful. I hope you are getting some relief now. I wasn't sure if you would be getting relief very soon or would it take time. Best wishes to you. ✌️

May 02, 2016 9:43 PM

Profiler, I'm what they call med sensitive so for me, it's been a blessing. I'm actually beginning to feel much better, between really watching my diet and medication.

May 04, 2016 6:56 AM

And who would have thought that something as simple as 3 little cherry tomatoes could make me hurt? I guess I learned a lesson this morning of NO more tomatoes at all!!!!!!!! Feels like a fire burning if you guys with IC catch my drift!

May 04, 2016 4:54 PM

I do, and so sorry! πŸ™‚πŸ’•πŸ™πŸŒΌ

May 04, 2016 4:57 PM

Flappys, I guess I just needed to learn that lesson the hard way. It just sucks!!!!!!!

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