Well this IC has got me shopping and looking up stuff all over the place.

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pam47462
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Again I have to say what a horrid disease IC is its painful, debilitating you name it.  Its also costing me a fortune.  Again I am going to the doctor he was nice enough to give me vaginal hormone inserts one week I know I will need more anyone using them for the burning vulva, if so how long will I be need the pill inserts. 

Also I picked up some really expensive yogurt like 20.00 for six tiny bottles.  They advertise that each bottle has 50 billion good bacteria.  Since I have been on antibiotics so much in the year I hope this helps or it another bad spend.  I still need hormone replacement therapy going back again to the dr and have some tests done. 

Any ideas about this problem I am all eyes.

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  • Posted

    Hi Pam, it is indeed a nasty condition and very depressing.  It’s a good idea to take probiotics if you’ve been on anti biotics.  They’re expensive but essential for good gut health - you don’t want diarrhoea on top of everything else!  A very good make of probiotic for bowel and bladder health is ‘megaflora’ but I’m not sure if you can get that where you are.  If not, You could always check on line the actual bacteria in that and look for something else that contains the same.  I did a lot of research to make sure I got the right one - it’s all very time consuming at a time when you don’t feel like doing anything other than bang you head against a wall! The vaginal pessaries I am assuming are vagi fem? An estrogen pill you insert every night for 2 weeks and then twice a week indefinitely.  The estrogen is absorbed locally and improved vaginal and bladder health.  It’s very safe as the estrogen isn’t absorbed into your system - I have been using them for years and they do make a difference.  I’m not sure you’d know after one week though - it was a couple of months before I got the benefit of them.  Sometimes they’re not enough and you need systemic HRT too but it’s a good start!  Hope you get some relief soon.  

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    • Posted

      Hi yes the dr gave me vagi fem but only for three weeks, and he said I did not need the systemic hrt meds that would be enough.   So hard for men to understand this problem with hormones and IC.   Thanks for the info though going to go screen a new dr and get myself a gynocologyst.  You have been a load of help and so have the other on this site.  I also had the dr up my spasm med from 25 mg to 50 hope that will also do some good.  If you can think of any tips to get the meds or them  to listen or ohter helpful hint I am all ears.
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    • Posted

      Hi Pam.  If the antispasmodic meds you are on are called mirabegron (aka betmiga) then the increased dosage to 50mg should make a difference.  I’m certain my flares would be much worse without it.  I should imagine (hope) your doctor wanted to see if the vagifem made a difference before putting you on it long term.  Short term use is no good as as soon as you stop, the problem returns - it doesn’t cure it - it just relieves the symptoms by making all the skin tissue healthier and less prone to inflammation and/or infection. Any gynaecologist worth their salt would know that.  It shouldn’t be so hard to find a good, knowledgeable and sympathetic health care provider but it does seem to be! A good one is worth their weight in gold - when I found one I wanted him to come and live with me haha! Just to hear him say ‘I get it.  I understand. It’s awful and you’re not exaggerating or imagining it - and you are not alone.’  It was such a relief! But then he said he spent a large amount of his time writing to doctors to explain that when women present with severe bladder probs and no significant infection, they should be offered some form of HRT and a referral to a uro-gynaecologist.   My problems all returned when my doctor made me take a lower dose HRT and I ended up in hospital with the pain.  He was furious that a doctor had done that and caused me so much pain!  I was put back on the HRT and things got bette quite quickly.  I had an early menopause and had to have an ovary removed in my early 30s so I’m probably an extreme case as far as needing that much HRT - a lot of women do find the vagifem is enough.  I’m trying to see if I can be brave enough to try just the vagifem (I wasn’t using them when I initially had the HRT - they’re a fairly recent addition ) I think if  I could use it daily it might be enough - my gynaecologist is thinking about it! They used to be 25mcg per Pessary but now they only do them in 10mcg which is annoying! Do you have any other conditions known to be linked to IC such as fibromyalgia? Irritable bowel syndrome, migraines, vulvodynia? I have all these things and apparently they are all related - what joy!!! As far as getting help goes see if you can get some print outs from up to date, well respected medical sources to take with you - especially with regard to the hormone involvement.  Sadly doctors don’t always have the time to keep band up to date - but be tactful! They don’t like to be told their job ha! Or tell them you’ve spoken to other women and what helped them.  Sorry your suffering - hope you get somewhere fast! 
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    • Posted

      Thanks again for the info.  So how long  before you noticed a change in your condition?  As for me I have pretty much the same as you.
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    • Posted

      Hi Pam.  That’s not easy to answer as it was a few years ago now! It took ages before anyone mentioned IC - they said I had something called ‘urethral symdrome’ and I had two urethral dilitations which made it feel more comfortable but didn’t ease the bladder symptoms.  I used to see my gynaecologist every 3 months and I do remember that I saw him at one of those appointments and was at the end of my tether and that’s when he put me on HRT and by the time I saw him at my next appointment things were so much better, so I’d say a couple of months.  With the vagifem it probably took a couple of weeks.  I still get flares if I don’t look after the other aspects of IC care like diet and keeping well hydrated, but it’s the HRT that’s been the lifesaver for me.  The flares are really horrible but shorter lived and don’t have me rolling around in agony like they used to ten years ago.  Hopefully you’re using the vagifem daily? 
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    • Posted

      So you have been going through this for a long time.  Me itse been 7 months of torture. I am doing my best to remember the diet, my meds and now the vagifem it may be difficult to get more with the dr I have now.  But I am on my way to a new dr having my blood work done this morning and he will let me know if I can have the hrt.  Things may be looking up.  also I noticed pain in the morning is nothing compaired to the pain I have during the day..
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    • pam47462
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      Posted

      Well back from the dr got my blood work done they are so good at it.   Also was having more pain again bladder of course.  The hospital did an mri and it shows my bladder is slightly lower than normal and may have some element of a prolapsed bladder.  I just would love to get some good news that this all can be fixed.  I still have to wait and see a new urologist that could take months of pain.   
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    • Posted

      Hi Pam, In my experience it seems to take a long time to find the right doctor, and get the right treatment.   I spent a few years suffering agonising bladder pains until I had an appointment with someone who’d heard of, and knew about, IC.  Hopefully you’re on that track now.  I’ve had it for about 12 years.  BUT I have to give you hope and say that doesn’t mean I’ve been in pain or even discomfort for that long!  I’ve had months of normality inbetween, thankfully, although it was constant for the first few years until I started getting the right treatment.  Incidentally I also have what they said is ‘a mild anterior prolapse of the bladder’ but when I expressed alarm and asked if this was causing the pain, he said no, it was quite normal as we get older...  As I have had ‘normal’ pain free times since they discovered that, I think he must be correct.  Don’t worry - you’ll get there! When looking for a new doctor/specialist remember to ask it they have experience in treating IC - sadly most doctors don’t and even some urologists I’ve met haven’t - one even suggested I drink lots of cranberry juice which is an absolute no-no for an inflamed bladder!  Once you’re on the right track things will improve - honestly! 
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  • Posted

    Hi Pam, I don’t think so - they all have their favourites! So long as they give you estrogen it won’t matter.  I’m taking kliofem

    Systemically, but not sure if you have the same one there.  I use the vagifem two or three times a week in addition.  The type of HRT given will depend on whether you still have a uterus and whether you’re pre or post menopause.  So long as you get some extra estrogen into your system that’s all that matters! 

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    • Posted

      Did you have burning vulva during this mine burns so bad for 3 months I am worried the vagifem is making it worse its only been 3 days on them and they are so tiny the pills.  So I should wait two months to see improvement or should I stop the vagifem if its making the burning worse? Sorry for all the questions I having a hard time with all this.
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    • Posted

      Ah bless you - I do understand.  And yes! I did have burning in the vulval area along with other weird sensations ‘down there’! Interestingly, I find that if I miss some doses of the vagifem it comes back.  Vagifem is just estrogen and as such it shouldn’t make the burning worse, in fact it’s prescribed for that problem among others.  Obviously we’re all different in our reactions but you might find that the act of inserting the pill is what’s making it feel bad - that was my experience until I’d been using them for a while - long enough for the skin tissues to ‘plump up’ and become more healthy.  I’d definitely continue with the vagifem as I’m sure it will help with the vulval symptoms as well as the bladder.  You get all sorts of problems when you’re low in estrogen.  My doctor told me that vagifem would put back that estrogen exactly where it’s needed and I certainly notice if I miss one or two! You may also have a condition called vulvodynia which my gynaecologist says I have which has burning as a symptom - look it up and see if you identify with it - it often goes alongside IC infortunately but help one and you’ll help the other!  No personal deodorants or soaps - just plain water and cotton underwear.  The IC diet will help with both conditions.  I’m having a rough patch at the moment but I think it’s more to do with my fibromyalgia as everything’s hurting! The hot weather doesn’t help either! Ask as much as you like - I know how desperate it is when you’re suffering so I totally get it and I’m happy to help in whichever way I can. 
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  • Posted

    Pam, just wanted to add that if you really do think the vagifem is making it worse, then systemic HRT will work just as well.  It’s just glad I’m glad I persevered as I know it wasn’t the vagifem - just the dryness objecting to being poked with a stick! I’m sure it will get easier.  
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    • Posted

      Hi I am going to stick it out for a bit more  my pharmasist said take the pills at night, not sure if that makes a difference, I cant wait to see the dr and get hrt and get things started.   I have done a lot of reading about this condition not much in the way of medications for pain,ect.    I am still doing DMSCO treatments once a month.  Have you tried any of the other drugs for IC or done any of the treatments, and if so with any luck?
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    • Posted

      Hi Pam, I think you’re right to keep going with the vagifem.  It’s really improved things for me - probably more than anything else has.   The only treatment I’ve had is PTNS a kind of accupuncture and I’m still having that and waiting to see if that helps.   It has good reviews so I’m hopeful!  For the IC I have tried amitriptyline which did nothing for me, Toviaz which made it difficult to pee! And now the Betmiga which seems to be helping by calming the bladder down.  My urologist told me that the diet was more effect than most other measures though, and I agree that has made a difference too. Also trying (not always succeeding!) to relax rather than tense up and try to fight off the pain.  I hope your new doctor can help you more. 
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    • Posted

      Well good morning, I used the vagifem last night and had no burning at all this morning so it cant be the vagifem.  I am doing another grocery shop today and  may add a new food this week to my diet I am craving sweets so may get some dates to chop up in my cerial .am trying to do what you say relaxation instead of tensing threw the pain.   As for my new dr he seems so much nicer, wants to help but I wont now for sure till he actually helps me out.. I doubt  my old dr will miss me a all.  I
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    • Posted

      Good morning Pam! You sound a bit brighter which is good - I’m certain the vagifem isn’t going to make the burning worse so I’m glad you’re sticking with it.  Dates are ok - better without preservatives but not so easy to get! Be careful

      With sweets as lots of artificial sweeteners are not very bladder friendly.  Ice cream is fine and lovely with maple syrup! And pancakes! With fruit, stick to berries and apples (not too many strawberries tho) I’m glad your new doctor is being nice to you - that in itself makes a difference! 

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    • Posted

      Because I also have really bad bowels and have to be careful of constipating foods I do have to skip some things like rice, bread, potatoes and now on the new diet for ICI I am starting off slow berries and apples sound nice but it may be a bit early for berries for me I will have to stick with pears.

      As for dates they are ten dollar for just a few hundred grams organic same with organic maple syrup.  Cant wait to eat everything again.  I may of sounded happier because I woke up pain free no burning I am so glad to have someone to talk to that got through this..  

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    • Posted

      Hi Pam, it certainly does help to be able to talk to someone who understands what you’re going through.  It’s not like a broken limb where the evidence is obvious.  People often say ‘oh yes, I get cystitis too sometimes it’s very annoying but if you take a few antibiotics it’ll get rid of it’ NO IT WON’T! The bowel thing is interesting and my urologist told me with bladder probs you must never get constipated! (My Ibs alternates between constipation and the opposite so very hard to get right!) he said if your bowels aren’t behaving neither will your bladder - they are very closely linked as far as the nerves supplying both go.  Pears are a good choice as is applesauce or juice, and most veggies are fine.  Dairy is fine too unless you are lactose intolerant. And don’t forget plenty of water - it keeps both bladder and vowels happy.  I must admit that I don’t find that easy so I must try harder! How has your bladder been today? 
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    • Posted

      Your so right about the bowels, I have to eat plenty of fiber and drink at least 6 to 8 ,  8 oz of water a day to keep things moving.  I bladder felt great till after brek at  10 then the pressure some pain and burning starts to flair up.  I cant wait till this is over, how  are you doing?
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    • Posted

      Hi Pam, I’m doing ok thanks - could be worse - but could be a lot better!  What I keep telling myself is ‘it went away before so it will go away again!’ I think you should hold on to that thought too - you were ok until about 10 so you know your body can be ok - so it’s not a permanent thing.  How are you overnight? Can you get off to sleep ok? I well remember that stage though, when it all felt normal but for such a short time - so disappointing and it does seem to take a long time for the bladder to calm down once it’s upset.  One day at a time.  Keep a diary (boring I know!) it might help identify any culprits- My urologist said I’ll know within hours if I eat or do something to upset it.  That was useful because i didn’t know how long it would take for symptoms to show if I ate the wrong thing.  Remember every day is one day nearer to feeling better! And you will I promise! I’ve been in so much pain I wanted to die (no exaggeration) then a week later I was walking my dog on the beach - not 100% better but not in agony - it was such a relief and so I know you will get this sorted even though it seems to be going on forever at the moment.  I used to get quite panicky and think I just can’t take anymore and no-one cares! But I’m still here and things did improve - my flares are now fewer and further apart.  Knowing that they DO end, and not getting too wound up (stress makes it worse) and taking it easy! IC is a disability not just an inconvenience.  Be kind to yourself and also give family and friends some info to help them understand. 
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    • Posted

      You sound a lot like me I never thought I would want to kill myself but the pain was more than I could stand.   Ive had to put myself in the mental wart twice in 6 months so I would not hurt myself and stayed 6 weeks in total.   I sleep better now they gave me pills to sleep they help I am usually out all night and wake up about 6 or so. 

      the thing that makes me so angry is I hurt my foot and got an ulcer on it that gets more attention than the IC from nurses.  I am so glad your doing better life would really suck if I did not have something to look forward to.    I am to the point that it may be better to remove it I will be seeing my 3rd urologyst about this and if the hormones don't work and all else has failed that's what I will be asking the dr for removal.    Please keep me up to date on how your doing advice anything it really helps.

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    • Posted

      I’m sorry things are so tough for you Pam but don’t rush into removal - not until all other ideas have been well tried.  Keep me updated on how you go with the new doctor and the HRT and if I think of anything else I’ll be sure to let you know.  I’ll be thinking of you. Take care x
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    • Posted

      I am so willing to try anything and as far as I can tell the hrt are a great idea.  I live in Canada and only 52 having my bladder removed the dr scoff at but with all my infections and having to take pain med's that do little to nothing I am going to entertain, surgury here takes a while so I will have plenty of time I think to try the hrt when I get them.  Thanks for your concern and kind words I am so glad I bumped into you.  I will keep you up to date, you as well.

       

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    • Posted

      Hi Pam- I’m glad you can’t rush into removal as an answer - it’s such a big decision and one you can’t go back on but it’s certainly an option but only when all else has failed, so give the HRT a go a for at least 6 months from

      my experience.  You’ve many years ahead of you so I do hope you get this sorted this year so the you can enjoy them to the full.  I’ve been where you are and I’m evidence that things can get better - with the right help and support.  Doctors shouldn’t scoff at you - they should realise that if you’re talking bladder removal you must be in serious pain and they should be making huge efforts to control it.  Hope new doctor comes up with the answer.  Keep in touch x

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    • Posted

      Thanks again for your support my family does not know what to think of all this they actually think its in my head.  I go see the new dr in 3 days hopefully all goes well.   I also been looking at inserts for women that have proclapsed bladders something I can ask my gyno or urologyst when I get them.   Keep in touch to its really nice to talk to someone that's been there.

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    • Posted

      Hi again I pretty sure I also have vuluadynia have you ever tried valium cream or amitriptyline cream for your condition?  I am still going crazy with the burning pain inside my vulva.
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