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The worst flare I could never have imagined. Help me!

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  • The worst flare I could never have imagined. Help me!

    So i have been managing my IC for the past couple years with diet, prosed ds and tylenol. I have had some bad flares but usually not too bad more than a few days and often months of feeling really good. Well last Wednesday and Thursday I had sex with a new partner who i had just started dating recently. He is rather large and I think it ws too much. No problems after the first day. jus the usual little post sex flare that I took care of with prosed and tylenol. And actually felt fine on Thursday too. I figured Friday i would flare a bit the next day like i always do. But Friday morning I woke at 430 am to pee as usual and felt like any other pee until after. I burned so bad i was crying. I though oh no a uti!! This was not a typical ic symptom for me. I drank a ton and some marshmellow tea the burning stopped but my bladder was killing me. I went to the doc and they found white blood cells anda little blood in the urine. They of course said oh uti, but sent it off for culture too. Knowing my experience with this and that I usually have white cells and no infection and never any nitirites I though i wil self treat with d-mannose and ltos of water. So I did this for the next 2 days while waiting the culture results which were to be in on Tuesday. Then Sat I got my period. So nasty cramps on top of this. i could not tell what was waht. But by Sunday afternoon was feeling sooo much better. I actually only got up once to pee that night and thought i was all set. I went to work and had some of and on discomfort but it was managable. Mind you it still didnt' feel like my usual flares. So i went home and started feeling worse. I thought I should start the macrobid just in case. I did this and felt sooo much worse that night I was up all night feeling horrible burning in my bladder. The next day I went to acupuncture which helped and stayed home from work . Still no culture. I thought this ahs to be a uti because I usually get cramping and frequency first and then rentention and some pain. This was different and worse. So Tuesday I had my acupncture and felt better and slept kind of ok. Woke every 2 hours. I usually wake once or none and in a flare like 3 x. So I am very tired and anxious at this point do to poor sleep. Wednesday feeling a bit better and get the call that they found no bacteria. I was shocked. So I stopped the macrobid which felt like it was flaring me up worse. Then that night out of nowhere I started to get uretheral burning and urgency feeling. I never have that except with uti. I drank some BS and felt better and went to sleep but woke a lot to pee. I n the morning the frequency was out of control and I would have burning after peeing and bladder spasms and burinig deep within almost in the bladder neck. This was nto a symptom I have ever had. None of this feels like my flares. I don't knwo what to do. IT is getting worse. I took pyridium with a benydryl because it will make me itch if i don't. It worked the second dose . But this morning not at all. My prosed is doing nothing either. As I am writing I am laying in my bed with horrible pressure and urgency feeling that got way worse each time I pee. I am terrified to go to the bathroom. I am also starting to get burning when i pee which has never happened except for uti. My uro did nothing and said i had to wait till next week. The longer i go without peeing the better i feel and then the bladder fills and I have to go and the horror starts again. I usually get relief fom peeing. This is horrible. Please I cant' imagine how i will sleep tonight.

    Do you guys think there is infection being missed?? I did a home strip 2 days ago that showed nothing. Though I had been on antibioric for 2 days. I am desperate and have no more tricks in my book to help myself right now.

  • #2
    Since it's been a few days since they started the culture, it could very well be a "new" infection --- a UTI can develop within hours. I think it could be a good idea to be checked again.

    Stay safe

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    • #3
      I thought that may be the case too Donna. Like perhaps when they tested me the bacteria was barely there or something. But I have bought test strips for home and have tested twice. Nothing. This morning not even white cells and never nitrites. I am beside myself. My parents are coming up to help me as I am so sleep deprived and riddled with anxiety that I am barely functioning.


      • #4
        So yesterday was way better and I slept decent and then this morning wam again. I was having lots of anxiety about things going on in my life and abotu this and it just got worse again. I don't know which comes first. As soon as teh ic calms so does my anxiety. But if the bladder is calm and something else starts the anxiety so does the bladder. I keep having a couple hours feeling better and then i go pee farely normally. Feels like a lot comes out easily and then a few minutes after my bladder starts to hurt and spasm. This is not that typical of my sypmtoms though it happened once before but not this bad. I am getting scared to go to the bathroom and dreading it. I never felt that way before. My anxiety is through the roof. My doc called me in a low dose of Xanax but i am worried about taking a drug like that. I am sooo low.


        • #5
          maybe some azo will help a little? I would also see my doc asap.
          <a href=";current=Picture005.jpg" target="_blank"><img src="" border="0" alt="Photobucket" ></a>


          • #6
            I hope as I'm writing this you are feeling better. Just wanted to let you know that I am one of those rare people who have VERY LOW bacterial count ( almost non-existant actually) when I have a UTI. I have a good relationship with my urologist and he is very understanding to the fact that this has happened to me. For me it is still a UTI regardless of what the AZO strips show or what the urine culture produces. I am given an antibiotic regardless. I am not suggesting "self-diagnosis", but I know my body and at times the symptoms of UTI & flares intersect for me. As I said before, this is rare, as most people culture out bacteria. It is possible that there is a UTI. Perhaps you can discuss this with your urologist. Just letting you know how different the IC is for everyone. I hope your issue gets resolved very soon. Liz


            • #7
              Thanks for the suggestion. I am allergic to azo /pyridium. I take prosed-ds daily which keeps me feeling good most of the time but not working this time. I thought about the possible infection with low bacteria count. I wodnered about that too so did d- mannose non stop for 3 days and tehn 2 days antibiotics. I was doing better until i started the antibiotics which seemed to mess me up big time. I am getting better the last couple days now - hope it keeps going tht way. Mystress is much lower because my parents came to stay with me for the week because i was so distraught. I have been going to acupuncture and my network chiro a lot. I am thinking if there was infection i would be getting worse and worse if untreated. Things got out of control when i started those. Anyway I am doing tylenol and prosed as always, chiro and acupuncture. I also added Georges aloe 100 percent aloe juice which my be working too as well as my aloe pills whichi think have helped me be back into remission for a long time until this flare. I think the issues with the sex I had was that this partner is not only large but curved to one side. It can hurt if we don't do the right way. Also i did it way longer than usual. Then the stress of thinking i had a uti and being so afraid of my symptoms started causing me to have constant anxiety and even a couple panic attacks. Really bad for the bladder! I did notice that i could calm the bladder a lot with deep breathing. Stress is my worst enemy. A few years ago ironically when i was beyond stressed it didn't bother my bladder at al but caused my lichen sclerosis to flare badly. Yup I got it all! Anyway I really think stress is big for me, though it is not initially what caused the flare.


              • #8
                How did you get the diagnosis of lichen sclerosis? I was just recently sent to my gyn for what I thought was a uti when it fact it was something else in the vaginal area. My labs are not back, but they suggest it is possibly Lichen Sclerosis. Great on top of IC and STRESS now this???


                • #9
                  I agree with Briza, some relaxation techniques really might help you. To me, it sounds like you sent yourself into a flare from the sexual intercourse with your new partner. The Pelvic floor being too tense can definitely cause a lot of your symptoms. And in turn if the Pelvic floor isnt dealt with, it will cause your bladder some damage. It can be an endless cycle sometimes. Ive learned many exercises from physical therapy on how to help the pelvic floor muscles relax. If your symptoms continue and your doing all you can to calm the IC flare with foods and what not. I would try physical therapy. Everybody is different in their own way down there. So your exercises would be different than mine.
                  Hope you can find relief soon!
                  I love my life with my wonderful husband, no matter how much "in sickness" rather than "in health" we go through.
                  I had a cystoscopy with hydrodistention done on Feb. 26th to see if it would get me out of my horrible 8 month flare.
                  Doing great so far! hoping i can stay this good with everything i'm doing!

                  Things I've Tried: -Physical Therapy - Oxybutynin - Pyridium - LOTS of muscles relaxers/tranquilizers - Chiropractor - Rescue Instillations
                  - Lyrica
                  What I'm doing now:
                  -Elmiron 200mg 2X a day - Uribel 2-3x a day - Baclofen 10mg @ night - Atarax 10mg @ night- Lidocaine patches when needed - Generess Fe
                  -Formula 303 2-3X a day (homeopathic muscle relaxer recommended by my Urologist for muscle problems after antibiotic)
                  -Aloe Vera juice
                  -P.P.T. tea with Buchu leaf
                  -IC diet
                  -Stress relief yoga
                  -Kitty snuggles & watching my reef tank


                  • #10
                    You've already gotten some very good suggestions, so don't have too much to add.

                    I might stop the aloe juice however, most aloe vera products are too acidic for us. The Desert Harvest aloe is processed in a way that is not acidic, so if you really want to take aloe, I'd look at that brand. Also, Macrobid works to kill bacteria by creating an acid environment in the bladder, so that may have worsened or lengthened your flare. If I take Macrobid or Macrodantin for a week, I can count on a 2-3 week full-blown flare and then another 1-2 weeks of bladder sensitivity afterwards. Since you've just taken that, you might want to eat the plainest, most IC-bland diet you can for a little bit.

                    Other than those two things, just really try to take it easy and do as much as you can for muscle relaxation - stress management, physical therapy, maybe a prescription for Flexeril after intimacy?

                    I hope you feel better soon!

                    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                    New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
                    Source - Pinterest

                    Current treatments:
                    -IC diet
                    -Elavil 50mg at night
                    -Continuous use birth control pills (4-5 periods/year)
                    -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
                    -Pyridium if needed,
                    -Pain medicine at bedtime daily, as needed during the day several times per week
                    -Antibiotic when doing an instillation to prevent UTI
                    -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
                    -Dye Free Benadryl 50 mg at bedtime
                    -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
                    -Managing stress= VERY important!
                    -Fur therapy: Hugging the cat!