Possible to have IC without pelvic pain?

Posted , 3 users are following.

When I was dx'd 10 years ago I had really bad pelvic pain like menstrual cramps. Ugh!

Now, following a nasty UTI a few months ago I seem to have some similar symptoms but no pelvic pain at all.

THanks.

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21 Replies

  • Posted

    Hi! Not all IC patients have pelvic pain, some of us have strictly urinary issues (like me). It could be residual inflammation from your UTI, it's back, or it never completely cleared in the first place.

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    • Posted

      Hi Amanda,

      I am in a similar issue in regards to having had two bad UTIs, three bacterial vaginosis infections and now left with urethral inflammation. It doesn't hurt to pee - just pressure to pee/frequency and soreness/burning in urethra area. I am taking Marshmellow root with some success and thinking about adding Aloe. What have you used to help?

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    • Posted

      Hello! I was on a six month course of macrobid to clear the infection and the urethral pain disappeared after about a week. I finished the course in December and (fingers crossed!) no infection since then. Of course taking antibiotics for so long created gastrointestinal and vaginal issues but....it worked. Probiotics and diet modification helped GI issues and I haven't had a yeast infection since March so hopefully that's over now (still on different probiotics for that). For IC, I follow the diet (mostly) and take Elmiron. Part of my urinary issues are due to pelvic floor disorder, a hip problem and scar tissue from a childhood injury (that I'd completely forgotten about) and pelvic physical therapy helped so much. My urogynecologist recommended it and I'm so grateful to her and the therapist.

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    • Posted

      Amanda,

      Thank you for your reply and hope. I also have a script for pelvic floor therapy and after next weeks test results come back..if im all clear...that is where i am headed next. Good luck to you and I hope to someday be feeling better soon.

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    • Posted

      Jen -do you ever take any baking soda in a big glass of water to quell that burning and lower the acid level of your urine?

      I've been doing PH testing and mine is almost always in the low 5's - very acidic. Maybe too much stress or gluten or??

      I'm trying to raise it to high 6 or 7. Nice and alkaline - should have no burning then.

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    • Posted

      Hi,

      I am a vegetarian and the last two urine tests my ph has been 7.5 and 8.0. My doctor actually wants me to be more acidic to discourage infection. 😦

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    • Posted

      i am leaning towards the burning caused by antibiotics and multiple bacterial vaginosis issues. i have found others who are struggling the same. i just ordered DH aloe vera capsules aa the marshmallow root capsules help some...but i would like to feel better

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    • Posted

      Antibiotics are a real mixed blessing.

      So great to get rid of the horrid UTI but its a real beeyatch to deal with the aftermath.

      To me it means really nasty tissue dryness and that leads to burning, inflammation, redness and often urinary urgency.

      Even worse when we don't have any estrogen. I always feel that it was the two rounds of antibiotics I took in January that got me into the fix I'm in today.

      I once saw an article by a university urologist who said that if you can get on that uti before it takes hold - you can knock it out just with baking soda.

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    • Posted

      can any of you help me.

      last year after taking anti depressants and valium i started to develop utis. i had never suffered these in my life before, now being over 60. tested for e coli and given amoxicillin which did not keep it at bay for long. then given trimethroprim, same outcome. then given nitrofirentoin for a few days, slightly better but not normal. throughout there has been no blood, no incontinence, no cystitis just low pelvic ache and frequency. saw urologist who suggested rigid cystoscopy and bladder instillations. i was very afraid so as symptoms had slightly abated i have 'managed' over last months with diet and careful management but a few weeks ago after they attempted to give me a different anti depressant it all started again. ditched the anti depressant which was probably not the instigator and now have the low pelvic pain again, and frequency. lab grew e coli so dr gave amoxicillin but not much help. few days later pain bad during night and had to get emergency appt so now on nitrofurentoin 100mg twice daily for three days. i need painkillers to sleep but when up it seems to feel better a bit. still frequency though. it looks like i will need to see urologist again and as i have anxiety disorder i am petrified f what may happen. he wants ro anaesthetise me for rigid cystoscopy. as i say, any experiences would help.

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    • Posted

      Hi Anne,

      I have been having a similar situation with constant UTI ecoli and similar side effects. I have some questions and advice.

      Have you had a clean catch urine sample where a doctor uses a catheter?

      Have you been tested for bacteria vaginosis? I have had BV which kept causing UTI and symptoms of frequency?

      Could be you are low in estrogen which is making you vulnerable to infection?

      Are your UTIs cultured to make sure you are taking the correct antibiotics?

      I also went to see a urogynocologist who helped give me a plan and tested thoroughly....i skipped the cytoscopy for now.

      I take D Mannose daily ( four times a day to prevent UTIs ). If i feel one coming on I increase to six times a day for five days.

      I was also left with inflammation after the UTIs and I take Aloe Vera capsules six a day. it has helped me tremendously.

      This is just some advice off the top of my head. I wish you good luck.

      Jen

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    • Posted

      Hi Ann, I feel bad for you. 'Been through so much of this myself and I'm over 70.

      Would you compare the low pelvic pain to menstrual cramps?

      If you would, you might consider checking out the Interstitial Cystitis Network. That kind of pain is indemic to IC.

      I know as I had/have it.

      How do you have frequency without urgency?

      I had a cystoscopy years ago ... no big deal but scary for me as I have general anxiety disorder (self diagnosed) all my life.

      It was a "regular" type scope test where he just put a bunch of water up into my bladder and saw the red areas which indicated IC and took some photos.

      Ro

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    • Posted

      these replies are all so relevant.

      RO - yes the pain is similar to menstrual cramps at times. its not crippling, just very agitating, like spiders crawling inside me. i have frequency but can hold on there is no incontinence. when i go often it is a teaspoonful though. the bladder irritation is mainly in night while lying down and worst when i wake. once up i can cope with it just. the antibiotics for the first specimen showing e coli have finished but the irritable bladder is still there. dr seems to think cystoscopy is only way round this to see whats going on. i think it could be interstitial cystitis and wonder if its so what did they do to alleviate your discomfort, it seems awful at my age to develop his when ive had troublefree bladder. sometimes it feels it could be coming from something in vagina or bowel constipation, im totally flummoxed but gp says as i had e coli it must be bladder. tried the vagifem pessaries, they seemed to make it feel worse. i am miserable with this and need help.

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    • Posted

      i have not been checked for bv, could it be that? As you know i am on warfarin which means many natural therapies are not able to be used. first test for e coli was treated with amoxicillin but irritation still there. i am finding it hard to find a urogynaecologist in my area but would like to go down that route.

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    • Posted

      Ann, go to the ICN as I suggested above.

      They have a q &a on the first page where questions can be asked about specific symptoms.

      The miserable IC pain is like a constant dull ache.

      I can't recall when it was at its worst.

      You have to follow the diet like a maniac and then cross your fingers that you can get all the pieces to the puzzle together at the same time,

      No baths, keep stress under control, no coffee, tea, sugar or alcohol etc etc etc.

      Let me know how you are.

      I can so relate to you. At our advanced age we sure didn't expect this.

      My IC (also known as Painful Bladder Syndrome) began when I was 65.

      Ro

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    • Posted

      yes, all you say is what is going on here. i have finished the nitrfurantoin but still have an ache low down. filling myself with painkillers. funnily enough this began around 66 i think. dr has scheduled me for cystoscopy and i'm petrified as i have a friend it went wrong and she ended up with her bladder removed and eventually died. why no baths. i dont use soap. stress is bad, i have anxiety disorder already and have been feeling very down since this started. i think the warfarin is also not helping either my mood or my bladder as i never had this till i was put on it.

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    • Posted

      When I had IC I used to curl up with a heating pad to assuage the constant ache.

      My Traditional Chinese Medicine MD used to brew up some Chinese herbal liquid for me and that took the bad pain away.

      Baths are usually not recommended for people with uti's or urinary tract problems as they can create environment for spreading bacteria.

      I love a hot bath but now I'm a shower girl except for when I'm really depressed and just have to have one.

      When is your cystoscopy scheduled? At least you will get some answers.

      No way you can talk him into a flexible one ??

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    • Posted

      thank you. yes i am going to try to ask for flexible one, i dont think he should be doing gen anaes straight away, not until find out whats going on. definitely had e coli culture last week but now i await to see if it comes back. i have another few weeks till i see urolog. and wil be asking more questions, i think these guys are too quick with their fancy equipment leaving us in pain

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