Need Advice think I could have interstitial cystitis

Posted , 5 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

Hope this isn't to long and someone will read all the way through to give me some advice I thank you in advance! Started in October 2017 I started feeling pain in the urethra/bladder. I have had UTIs before so I thought it could be one but deep down I knew it felt different. Went to my primary at the time and was checked for UTI which came back negative and was sent home being told it was probably period pains (as if at the age of 26 I don't know what period pains felt like). The pain got worse it hurt so bad when my bladder was full, some discomfort while going, and bad pain after going. Sometimes my bladder would feel hard as a rock. I also would feel like I had to go really bad and then only a little would come out sorry and would sometimes get shooting pains in my bladder and up my vagina sorry for TMI just want to give all the info.

I ended up in urgent care where that doctor told me I had PID even though I had no STD no history or STD ive been with the same partner for 5 years she said in rare cases you can get it from bacteria not STD related. So I was put on doxycycline and after finishing the meds I still didn't feel better went back to the doctor where she gave me something else for inflammation and pain. After a few weeks went by I started to feel better and went on with my life. It was end of November early December by this time.

Then in the beginning on March 2018 I started having the same symptoms starting with urethra/bladder pain and escalated to a full episode of all the symptoms I listed before not wanting to get out of bed only feeling some relief with a constant heating pad on my pelvic and urethra area. I went to my primary again negative UTI and he referred me to a gyno. My primary and gyno both said they dont think I had PID based on my history and symptoms and that urgent care doctor diagnoses PID alot even though its more rare. They both think it could be some thats reoccuring. The gyno did another urine test which looked perfect according to him and a pelvic exam that looked normal. He then said my blood work showed I had some inflammation so he again put me doxycycline and referred me to a urologist per my request. After about 5 weeks of this pain I am starting to feel somewhat better. I still feel like I have to go even after going and some urethra discomfort but better than when I couldn't get out of bed and leave my heating pad. My urologist appointment is in a couple weeks. After researching I am concerned it could be IC. Does anyone that has IC or been through a similar process have any advice?

1 like, 13 replies

Report

13 Replies

  • Posted

    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.

    Report
    • Posted

      Thank you for your reply! I will definitely look into an IC diet and give that a try. I am willing to do anything at this point. It is nice to not feel alone in this. I will update about my appointment hoping the urologist will have some answers for me as my gyno wasn't much help.

      Report
    • Posted

      You are differently not alone with this . There are more people out there that just don't know what it is or where to get help. I was in the dark when I got this,like you I thought it was uti. After two rounds of antibiotics my md said that I should see a urologist , best thing that I have ever done. So good luck stay strong

      Report
    • Posted

      Well just left the urologist who is almost certain it is IC as my test show no signs of anything else. He wants me to try an IC before trying any drugs. The good news is he was very understanding and seemed to know a lot about IC the bad news is I need to now figure out what food triggers my pain which can take some time. Staying positive and working towards a pain free life!  
      Report
  • Posted

    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!

    Report
    • Posted

      Thank you for your reply! I appreciate the detail. I have been trying an alkaline diet but it is difficult as i'm sure you know. I feel some relief and think the pain is over only for it come back the next day. I to have noticed feeling better while exercising. I am really hoping the urologist can give me more information as my gyno was no help. 

      Report
    • Posted

      Hi Amanda, 

      All of these responses hold good info...I hope things improve for you soon. The key is any doc you see should have decent knowledge of IC...many do not. I know many urologists do push the bladder installation but will be interested to see what yours says. Don’t forget the freeze dried aloe capsules and baking soda mixed in water. That, along with diet helps. Also, pelvic floor therapy. Best wishes!!

      Report
  • Posted

    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!

    Report
    • Posted

      Thank you for replying. It is nice to hear there is some hope to feeling better again. Did your doctor perform any test before diagnosing you with IC? I am curious as to how it is diagnosed since neither my gyno or primary have mentioned IC. I only came across the condition after getting little help from them and researching my symptoms. 
      Report
    • Posted

      Aside from multiple urine cultures, I had a pelvic ultrasound and a bladder ultrasound. They wanted to rule out out any other issues; IC is "a diagnosis of exclusion" meaning once everything else is ruled out, that's the only option. Sometimes a cystoscopy is performed (a flexible scope is inserted into the bladder) to check for damage to the bladder lining and wall. Not all IC patients have ulcers on their bladder walls, but some do. I didn't have this test as my urogyno didn't think it necessary considering my other symptoms. This test can be uncomfortable but most doctors will instill lidocaine and perhaps other medications into the bladder to ease discomfort. Bladder instillations are an option to oral medication or can be used in conjunction with them. Being catheterized for a bladder instillation doesn't sound great but it can provide relief very quickly. This can be done as a rescue instillation during a flare or every 1-2 weeks for 6-8 weeks as treatment instead of oral meds. I hope this info helps!😀

      Report
  • Posted

    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 🙂

    Report
    • Posted

      Thank you for your reply! You took the words right out of my mouth about finding a good doctor. Both times I have sought medical help for these symptoms I was put on antibiotics and looked at funny when I told the doctor they didn't help. I'm crossing my fingers this urologist i'm seeing in a week will give me some answers. If not I am considering looking for a private practice doctor.

      Report
    • Posted

      Hi Amanda, I too am seeing my urologist next week. Please let me know how you get on.  It can be a long painful road at the beginning but there is help out there and lots of things to try.  Finding a good and knowledgeable  doctor is probably the hardest part! Mine says he is constantly writing to GPs explaining that giving antibiotics to people with no infection is counter productive and giving them details of the symptoms of IC - it seems to be a rare beast that a GP might not encounter for years in general practice.  The first time I had my consultation with my urologist I came out in tears because FINALLY someone I turned to for help really understood!  He said I wasn’t alone and I wasn’t going mad or exaggerating and that he would speak to my GP and explain everything in great detail.  You will find someone like that in the end.  I had a urogynaecologist in Kent who was also very kind.  I’m on the Isle of Wight now and just hope the one I have now doesn’t retire anytime soon!  You could also try an antihistamine - I’ve been taking hydroxyzine 50mg and also ask about a form of acupuncture called PTNS - it’s a weekly 30min treatment for 12 weeks - doesn’t hurt and there are encouraging results.  I’m on week 4 and am cautiously optimistic!  Hope all goes well next week 
      Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up