I'm here again, please give a girl some encouragement

[jcarramu ICN Member Find all posts View Profile Close jcarramu]

I posted here earlier this year and got some great support. Thanks to everyone. I am back on this site because I am having the worst flare yet. I started feeling pain back in the middle of August and just kind of ignored it thinking okay here we go again. Started to watch my diet more closely again and started taking pain killers. After about two weeks I was having some pretty severe pain and pressure in my pelvic area(never had that before). As well as the usuall burning pain in my bladder and the shooting pains down my leg and my right foot always seems to hurt. The burning and pain got increasingly worse so finally went to the doc. I had a bladder infection, bad one too it, it was affecting my kidneys as well. I have had IC for almost ten years now and this is only the 4th infection. So I suffered through another two weeks hoping the antibiotics would work. No such luck. The infection has cleared up but there is still blood in my urine and no change in my symptoms. I went to doing weekly uracyst installs again and here I am 3 weeks after starting them weekly and still no change.

I have been suffering now for almost 7 weeks with nothing working. I have lost my 4th job in the last 7 years last week because of this condition and my mental state is at the breaking point. I have gone to the emerg a couple times, waited for hours in excruciating pain to be told sorry there is nothing we can do for you because "you have a syndrome, not an actuall ailment we can treat". What is that supposed to mean? I'm not actually in pain because the doc doesn't understand the disease? I feel like a hypochondriac on a good day, this did nothing for my physical or mental well being.

I have a great family doc and she does as much as she can for me but it takes weeks to get into my uro ( I live in Canada ). So I have to suffer until then. Then when I finally get to him I don't know what or how long until something will happen. Last year I was told if the symptoms got any worse or more consistent that the next step was bladder removal. That is not an avenue I even want to think about right now.

This are the symptoms I've had over the past ten years:
-Frequent urination- sometimes up to 25 times during the day and5-6 times during the night
-Burning in lower right abdomen that radiates down inside of leg
-The bottom of my feet sometimes feel like there are little electric currents going through them
- bladder spasms that feel like my ureatha is being pulled inside my bladder
- incontinence - there have been many I times I just stand up and boom I have to pee right then no warning nothing. ( not so much fun in public)
- nausea- i mean severe nausea- especially in the morning
- now I have severe lower back ache and shooting pain
- and this new pain and pressure in my pelvic region
I read some where about so of you having painful arousal for no reason, I think that must be what is starting now. I can even wear under wear or jeans anymore because of the pain and pressure in my pelvic area and some weird arousal thing happening.

Treatments I have tried
- elmiron - 6 months- liver did not like it
- DMSO installs weekly then monthly- had allergic reaction after 3
- Lyrica- seems to help when things are out of control
- reactine and allergy shots- I have severe allergies to lots of things and when they are bad the IC gets worse. Just staring the shots
- painkillers from tylenol to demerol
- I have had 3 hydrodistentions and cystoscopies
- acupuncture - nothing dramatic for results but man was it relaxing

So now I have talked your ear off you know my story. If you have any suggestions on what I can do to get through the next few weeks to help so I don't have to even think about having my bladder removed it would be greatly appreciated.

Thanks for your care and understanding

Jacquie

[IrishInLondon ICN Member Find all posts View Profile Close IrishInLondon]

Hello Jacquie...

I'm new here so probably won't be able to offer you as much advice as some of the others on the forum.

But one of the best things to help yourself is definitely coming on here and venting - there are times when I can actually forget about my symptoms when I'm on here typing. And since my symptoms started I've been thinking how terrible it would if this forum wasn't here!!

Also, i know its easy to say, but try to relax in whatever way you want. I've found my symptoms get much worse when i'm anxious. I know it seems a bit simplistic - but maybe watching a movie or going for a short walk might help...it certainly helps my mental state.

Its great that you have an understanding GP....that's something I haven't found yet here in the UK! There are so many options in medicine, that they will be able to offer you something to help. I've watched Jill's videos - and she makes lots of great points - including not getting hung up on the name of the condition you have but rather your symptoms. So when you go to the doctors or the urologist...they have no excuse in saying "its a syndrome, we can't help". You can reply - i am in huge amounts of pain, and you have to help. There are a huge number of treatments for people with chronic pain.

Keep up hope!! And when things get bad, I always think we could have many things worse than IC.

Take care
Conor

[earthlady ICN Member Find all posts View Profile Close earthlady]

I was wondering if you have the option of being referred to a pelvic pain clinic like we have here? Sometimes uros only focus on the effects that the bladder has on you when pelvic pain clinics may look at other possibilities in the pelvic area also for treatment.

[Kitty920 ICN Member Find all posts View Profile Close Kitty920]

Hi Earthlady:

That is excellent advice about seeking out a pelvic pain clinic.. I guess I am clueless because honestly I did not know one exists. I live in Massachusetts and I would love to know where the closest one is. I am trying to decide if I should go to a urogynecologist for my symptoms (burning and raw pain in urethra; it's so painful for me to sit down for any length of time). When I mentioned my symptoms and the probability of it being IC he looked at me and said; oh I hope you don't have IC -- that's terrible and there's no cure!. This comment in itself totally depressed me for the rest of the day. My urologist is good but not very proactive so far and it's impossible to see him.

I came on this forum to post a question and then started reading this post first. But I wanted to ask the knowledgable people here if anyone else struggles with my symptoms (I swear you start to believe that you alone are the only one in the world with the weird symptoms you have).

I have been in urethral pain since May. However, I have a long history of bladder-type symptoms). This urethral pain fluctuates throughout the day with morning being most comfortable to late in the day much more burning pain; every single day no matter what I eat or drink. So I don't seem to have the flare-ups and remissions that I read about on this site. My urologist put me on a long term antibiotic therapy to see if there is a low grade infection present, but since August, I have seen no improvement with that. Next step he says is cystoscopy with hydro. to have a peek.. I have been taking cystoprotek on my own since August or so and no difference...I guess my main question to anyone who might know is it common or not to have pain that just comes and goes during the day (pain rating from say a 1 in the morning to an 8 in the afternoon with no rhyme or reason. It hurts mostly when I am sitting; hurts least first thing in the morning when I get up. I only eat/drink from Column 1 of the safe diet list and have done that since May; with no improvement....if anything, I can say that overall my pain has increased since this all started 6 months ago...I'm sorry if I should have started a new post here with my sob story and i didn't really mean to go on and on like this it's just once my fingers started typing..it's just like all my thoughts these days...it's all about my urethra pain..can anyone offer some advice on something that might help...it literally feels like a burning raw open sore in my urethra..

Thanks so much...I think you are all such courageous and wonderful people..everyone is hurting in their own way yet you have so much thoughtful advice and support to share.

[earthlady ICN Member Find all posts View Profile Close earthlady]

My symptoms came and went during the day all the time. I also had the worst time with sitting for extended periods. My dr. tested me for pelvic floor function and found I was having pelvic floor muscle spasms. I treated the pelvic floor problem and the bladder problem at the same time. They go hand in hand a lot of the time and one can affect the other due to the nerves in the area. I wish drs. would refrain from the comments they give sometimes about how there is no cure and, gee I hope you don't have IC. We are already stressed out about this stuff to begin with and these words are not exactly comforting. I saw several drs. - uro, uro gyno, gyno, etc. I have been in remission for a good while now and I feel like going back to one of the drs. who told me I would be in pain the rest of my life and tell him how good I feel despite his dire prediction!

[Kitty920 ICN Member Find all posts View Profile Close Kitty920]

Hi Earthlady..thanks so much for your encouragement! Can I ask you what helped you most to get better? I am so glad to hear that it really is possible to come out from the darkness of living with chronic bladder pain everyday to a day when you actually can think about something other than bladder pain. Do you think IC is a progressive condition? I had a flareup last spring; it was horrible but it only lasted for 6 weeks or so. I took amitryptiline 10 mg/day and it eventually went away. This time I have been in pain since May; 6 months. I hope to God I don't have to live with this for the rest of my life. Thanks again...take care.

Nancy

[earthlady ICN Member Find all posts View Profile Close earthlady]

jcarramu- I was also wondering if your dr. has mentioned anything about possible pudendal nerve problems since you are having the arousal effect and shooting pains down the leg? I would ask about the possibility of this along with pelvic floor nerve problems.

kitty920- What helped me in the beginning was most probably a combination of things like everyone else. I had pelvic floor therapy for two months along with home exercises for relaxing and stretching the pelvic floor muscles, I took warm baths in epsom salts and baking soda, was on Benadryl and Surmontyl for a while, used ice packs, drank chamomile tea, added the supplements of Quercitin and Hyaluronic acid, used Prelief with acidy foods, and stopped coffee, tea, wine, and citrus. I do believe though that the Quercetin helped the most. I don't take any meds at the moment and only use the Quercetin and Prelief along with diet changes. I still have some minor frequency at night but I can live with this as there is no pain, and no frequency during the day anymore.