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

Posted , 3 users are following.

pam47462
pam47462

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.

0 likes, 43 replies

43 Replies

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  • shirley_an59859
    shirley_an59859 pam47462

    Posted

    Hi again Pam,

    I don’t think you can get Valium and amitriptyline in a cream ...  I have tried amitriptyline but it didn’t work for me - just weight gain and a fuzzy head! It seems to be the drug of choice for vulvodynia but I don’t think it’s a good one.  Something like pregabin (lyrica) or gabapentin would be a better bet as it also improves mood.  Make sure you only use water when washing that area, and plain cotton underwear.  The vagifem night improve the burning in time - it’s very distressing and you need a kind gynaecologist to guide you.  You probably have a tight pelvic floor, in which case a pelvic physiotherapist who treats vulvodynia might be a good option.  (It helped me with the burning) and the other thing is to try a low Oxalate diet (my gynae suggested it) which is really a ‘stricter’ version of the IC Diet and quite challenging to stick to.  Sadly IC and vulvodynia seem to good friends! Do they have pain clinics where you are? They’re very good at helping people that deal with chronic pain.  Get as much info from trusted forums on vulvodynia issues.  I don’t have it as bad as you but I really sympathise - mine is more like vaginal cramps which are agonising but I’ve not had them so often since the diet and physio.  I also get a feeling like there’s ‘paper cuts’ down there which are so sore but nothing to be seen or felt.  Again, it’s a nerve thing, wrong signals being sent to the brain which is why I mentioned pregabalin and gabapentin as they work on nerve pain.  I hate amitriptyline- I’ve tried it for lots of things and it’s never worked but we are are different - it might be the answer for you! (Just saying don’t be surprised if it isn’t!) have you tried cold packs? Not directly on the skin or you’ll get frostbite but it helps numb the pain - you could also try an anaesthetic type cream like Emla.  But I often feel best when I leave it well

     alone as far as creams go! Best thing I’ve found? Extra virgin organic coconut oil.  No

    nasties to upset the skin

    (Unless you’re allergic to coconuts of course!) it’s really good and I find It brilliant on dry or sore skin.  Also the vulva.  My gynae said it’s absolutely fine to use and probably better than creams full or perfumes and chemicals.  Hope this helps a bit. 

    • pam47462
      pam47462 shirley_an59859

      Posted

      Thanks for your reply, your right I went to the dr and he said the same thing as you.  I take gabapenton excuse the misspell.  I am picking up some coconut soap this weekend for just certain parts of my body, not that part for sure anymore.    Your such a help thought I would let you know I now have months supply of vagifem. so I don't have to worry about that anymore.   I am going to stop using fabric softeners and chemicals on my things.  I read up on the diet but I would miss nuts to badly;.  I would like to try the cream you mentioned does it contain lanolin I am so allergic?   I do wash with a damp paper towel after the bathroom so  to get rid of urine,  I find that helps next time I go shopping I will be sure to see that its perfume free. 

  • shirley_an59859
    shirley_an59859 pam47462

    Posted

    Hi Pam - I have replied by it’s waiting to be moderated.  Hopefully you’ll get it soon! 
  • shirley_an59859
    shirley_an59859 pam47462

    Posted

    Hi Pam, I’m glad your doctor agrees with me - always reassuring haha! The emla cream contains lidocaine and prilocaine which are topical anaesthetics.  I don’t think it contains lanolin but best ask at the drug store to be sure. There is an anaesthetic pessaries you can get from the gynae called optilube active, which you can insert - I have some but as they warned me it could burn for a while after insertion I haven’t been brave enough to try it yet! I used sudocreme on doctors advice but it burned like hell so I’m very wary! Also if you ever get thrush, ask for the oral tablet instead of the vaginal pessaries as they burnt me too - I couldn’t sit down for 3 days!! The raw virgin coconut oil usually comes in a glass jar and contains nothing else but the oil.  It’s solid but turns to liquid quickly in the hand and I use that ‘down there’ as it’s brilliant for dry sore skin and no side effects.  I’m very reluctant like you, to put anything there - I even take my own white soft toilet tissue out with me - don’t use coloured toilet tissue either. Lots to learn eh? But it’ll be worth it - I think you start to feel better when you take control! 
    • pam47462
      pam47462 shirley_an59859

      Posted

      Your right I have to learn to take control, Ive been suffering now for six months and nothing has changed really except mornings are not as bad anymore regarding pain.  I see the dr again next Tues and requesting pain management.  They did try marawana oil  but that did not help and put my out 500.00 for two month supply of garbage.  I really think the diet helps IC and I have pure coconut oil I may give that a try and get some raw pure next week or so.  I am grateful they took coloured toilet paper of the market here way back when.  I still have to figure out what to wash my clothes in instead of laundry soap.  If you have any ideas that would be great.
    • shirley_an59859
      shirley_an59859 pam47462

      Posted

      Hi Pam, that’s a lot of money to fork out - even worse when it turns out to be a waste of time! As far as laundry detergent goes I just use one for sensitive skin as I use panty liner pads but I think anything unperfumed that’s designed for babies should be ok.  Either that or your gynaecologist might know - depends how clued up they are! You can buy natural cotton panty liners with no nasties - that would keep any residue detergent away from sensitive areas! 
  • shirley_an59859
    shirley_an59859 pam47462

    Posted

    Sorry, also make sure all your clothes have an extra rinse at the end of the programme.  That helps a lot.  Dry underwear indoors or pollen can get into the fabric.  Tumble drier ok but don’t use any fabric conditioner sheets - actually they say more allergies are due to fabric conditioner rather than the washing detergent.
    • pam47462
      pam47462 shirley_an59859

      Posted

      Sorry for all the questions having a bad pain day, so how long did it take for you to feel good all day, ir you have?  Also I drink 8,8 oz glasses of water a day, does that seem like a bit much? I hate having the feeling of having to go all the time.  I am hoping for a better day tomorrow I have a dentist appointment for a back tooth extraction I'm not sure if I will even handle lying there.

    • pam47462
      pam47462 shirley_an59859

      Posted

      Hi I thought I would let you know that I started hrt therapy,  The gyno put me on premerin estrogen .635 mg and metotoxy 2.5 mg progesterone they are said to work together,  he said it was a low dose and I could always go down.  He also said I have to stop using the vagifem.  I am a bit upset about that because it was working,   as for the hormone replacement he said it should help stop all the bladder infections.  That's a huge bonus.

    • shirley_an59859
      shirley_an59859 pam47462

      Posted

      Hi Pam.  Thanks for the update. I’m glad your gynae has put you on HRT.  I’m sure you’ll find it a great help within a few weeks - not sure why they said you have to stop the vagifem though.  I’ve been on both for years with their approval.  But you might be one of the vast majority who can manage well with just one kind of HRT.  As they say, you can adjust the dose - I was on half the standard dose (kliovance) but it wasn’t enough for me so I’m now on the standard dose (kliofem) with added vagifem to target that area specifically.  I think you’ll do well though as if u had the choose, I’d go for the systemic HRT rather than the vagifem as that alone isn’t always enough which is a shame really as it’s far less likely to have side effects.  Hope you soon start to feel like a brand new woman! Keep me updated! 
  • pam47462
    pam47462

    Posted

    Thanks I will do that, so just curious how long did it take you before you started to feel pain free all day?  I also drink 8,8 glasses of water a day for some reason is that seem like too much?  Sorry for all the questions, I'm having a hard day to make it worse I have a back tooth that needs to be removed tomorrow.

    • shirley_an59859
      shirley_an59859 pam47462

      Posted

      Hi Pam, well they do say 8 8oz glassed of water a day is what we should all aim for - but I wouldn’t recommend going straight to that amount as you will want to wee all the time, maybe cut back just a little and work up to 8 glasses again over, say, a week or so.  I’m sorry you’re having a bad day. Could you explain this to the dentist and say that you might need to have a break during the treatment? I’ve certainly had to do that in the past! What pain meds are you on?  There might be others you can try like Elmiron.  My pain can last for days, weeks or months, (at first it was never less than 3 months) This timevits been over 3 months but not as severe as it has been.  I find it gradually eases up - it’s never an overnight thing.  One of those things you don’t notice until you you’ve had a few good days in a row - I’m finding it hard to be positive at the moment as it’s jist not letting up but I remind myself that I know it can and will go away at some point! I have fibromyalgia and it’s always bad when that’s bad.  I know how hard it is to cope with extra things on top, like visiting the dentist etc, but you’ll get there!  
    • pam47462
      pam47462 shirley_an59859

      Posted

      Hi I am on my second month of elmirion, nothing much happening with that but will keep taking it, it got a lot of good reviews.  I also take tramadol but its expensive 1.00k a pill and can only afford to take them 1 or twice a day.  They really help with the pain.  I also take benzopines sorry for the misspell the one i take is klonopin.  I also have the gabapenton I can have 3 times a day for nerve pain. 

      I had firomyalgia many, years ago and got rid of it with light stretching and mild excersise.  I may have to take a break during my dentist visit.  I actually had a few good hours during the day yesterday and hope to get many more.  I'm still waiting for my dr apt with the new urologst, glyno and eye dr, and pain management.   I hope to be in tip top shape when this all over.

    • shirley_an59859
      shirley_an59859 pam47462

      Posted

      Hi Pam, well I certainly hope you will be tip-top! It sounds like you’re doing all you can. The fact that you can have a few good hours bodes well for a better recovery.  You know your body CAN do it!  It will improve - I promise.  It just seems like forever when you’re waiting I know, but it will happen.  
    • pam47462
      pam47462 shirley_an59859

      Posted

      I got a bit ahead of myself and bought a 50.00 tens machine it's supposed to be here today, but don't know how to use it.  Like where to put the pads or what setting I should use.   Any info would be appreciated..  I cant believe what I have to do to stay sane with all this pain and money I am spending not just on stuff but getting to dr appointments, healthier foods, organic. med's etc..  I really hope the tens machine helps.

    • shirley_an59859
      shirley_an59859 pam47462

      Posted

      Hi Pam, I wish I lived where you are then I could come and show you! But don’t worry, the tens machine will come with full instructions.   As for the PTNS it was arranged by my gynaecologist and as we have the ‘free at the point of delivery’ NHS service I didn’t have to pay for the course.  Your medical insurance may cover it but I don’t know.  You need a trained therapist to do it - it’s not something you could easily do yourself although having had it, it’s probabky not that difficult but the equipment would cost a fortune I guess.
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