Need Advice think I could have interstitial cystitis

Hi Amanda,

It does sound like ic, but your urologist has to make the diagnosis. Try to watch what you eat and drink. Get on the internet and get the list of food and drinks that are not good for people who have ic. Try and stay away from coffee, tea,juices . Anything that is acidic. Give this a try and see if you get some relief before you have your appt. If you do than I would lean to ic. There is alot involved with your dietary needs when you are diagnosed, but it is doable. Also don't wear tight pants, or lift heavy objects. Hang in there,I know you feel lousy but this to will pass. I was diagnosed April 2017. I thought I was dying, the pain was so severe. The only medication that is on the market for it is Elmiron. But they have other medications to help relieve some of your discomfort. Let's us know how your appointment goes. Be strong, and if you have any other questions please feel free to ask, we all can help you through this.

Hi Amanda, I really feel for you. My bad symptoms began a year before yours and the pains are very much as you’ve described. When I went to my gyn she also did the tests and ordered a urine sample. In it she saw some bacteria but not enough to warrant a full blown bladder infection. As she was examining me she kept saying the letters “IC.”and I’m like, “you see what?” So after the exam and even an ultrasound she talks to me about interstitial cystitis, hands me a pamphlet and instructs me to read it because she thinks this is what I have. She explained how the body needs to keep to an alkeline level and not acidic. She says even things like stress can  bring on a flare, as she called them. I suffered so much in the beginning and I likened them some time to cramping. She referred to IC as “endometriosis’ sibling.’ Tbh I never bothered to ask her why unless it's just the pain factor being similar. I did have endometriosis and I remember that it was terribly painful. So along with keeping to these foods to eat and not to eat....many of the things I love like wine, anything fermented, spicy...there’s so much you can’t have. Once I took myself off of them the bad pains did subside. Also note you have to stick with it. If I slip and have a glass of wine I can almost be guaranteed a flare. Will I give it up? Probably not, also, you need to drink tons of water...at least three liters a day. I don’t always make it but I try. You might think this would exacerbate the feeling of having to go all the time but it's supposed to be actually beneficial. Also, I’ve been reading how pelvic floor therapy works for many women as does, believe it or not, a tsp of baking soda in not so cold water. I haven’t tried it but do know that baking soda..without the aluminum..is supposed to be very alkeline for the body. Another supplement are freeze dried aloe Vera capsules. They help me sometimes. The last bit of info I can offer is that my doc informed me that antibiotics do not make an IC sufferer well. We already know how bad it is to take too many of them the way it is. Why should our bodies suffer at the hands of doctors who simply don’t know enough about IC and don’t know anyone doing any clinical trials. She also told me they don’t know how you get it and that there is no cure.  Urologists and gyns are fond of doing these procedures for IC called bladder installations. They snake a thingy inside of you till it reaches the bladder and drop a coating of a cocktail inside of you that is supposed to suddenly end a bad flare. The trouble with that is I’ve read where’s after you eliminate, after about 30 minutes, for some the pain comes back. My gyn actually told me I’d have to do the procedure for seven straight weeks for it to be truly affective. I’m like, “uh-uh.” Well that’s about everything I know about IC. I happen to like Pilates and can tell you whenever I’m not in horrible pain or just work through the pain, Pilates actually seems to help. Oh and one last thing! Between November of last year and mid January of this year my pain just went away. It was amazing. I thought it had gone away for good. But now it’s back and it’s been painful. It can actually go dormant or go into remission. I think with a really super clean alkeline diet the pains might disappear. It’s just putting it into practice. Well, sorry for the lengthy text. You don’t have any STDs. I’m not a doctor but it sounds like  what you have is IC. I wish you all the best!

Hi, Amanda: You have my sympathies and I'm so sorry for your suffering, especially without a firm diagnosis. I was diagnosed in September with IC but am lucky to have a PCP who's familiar with the disorder and set me on the right path straightaway. The urologist should be able to confirm if you have it, but you'll probably have more testing to go through first. A urogynecologist may be more helpful if the regular uro can't/won't treat IC. The intermittent pain you described is familiar, as are the urgency and frequency. I thought I had a UTI in the beginning too...even though it had been over a decade since the last one. I thought it was weird, too. I've seen improvement from diet changes (check out one of the IC diets online if you haven't already) and medication (Elmiron every day, AZO and hyophen as needed for urgency and pain). I've also started pelvic physical therapy and learned some techniques to fight the urgency/frequency. Even if it is IC, there is hope to feel normal again, we just need to be patient and listen to our bodies. I hope this helps and you find your answers soon!

Hi Amanda, I’m so sorry you’re having such a miserable time.  I can both sympathise and empathise with you.  It does sound very much like IC to me.  A clue is the pain you describe plus the negative urine test results.  You need to find a good urologist or urogynaecologist (easier said that fine I know) I had to see one privately, initially, to get a diagnosis and it was such a relief when I saw him and he really got what I was saying, understood the condition and was extremely kind and supportive - it goes a long way, even if you are in pain.  There is an app you can download with a list of IC friendly foods etc.  I found that diet was the single most effective ‘treatment’ caffeine and citrus a definite no-no! The app is helpful when you’re out and about (when you’re well enough) to check items.  I’m having a major flare at the moment but I do have relatively normal times too, so try not to despair - there are a few things to try - also I’m

having a form of accupunture at my hospital which seems to be helping.  The biggest problem we all have is finding a knowledgeable health care provider who doesn’t just fob you off with endless courses of anti-biotics, although certainly they need to ascertain whether you do have a recurring infection or not.  IC is often an exclusion diagnosis based on symptoms and lack of signs of any other similar condition.   I also have pelvic floor neuralgia and IBS and fibromyalgia all of which seem to be more prevalent in IC sufferers.  It’s a horrible condition and you will need a lot of support as stress is certainly a factor - my flares always happen after a stressful time, although how we avoid stress is the big question!  Keep yourself well informed and gather info before your urology appt - sometimes you have to almost be your own physician.  A lovely consultant urogynacologist once told me the if you have a chronic illness, you become your best doctor! He also said it would be a foolish doctor who didn’t listen to you! I hope you can get some useful info from this forum - it’s good to have someone who knows what it’s like to offload onto. I wish you well 🙂