Possibly another issue.

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Hi everyone, Whilst I was told for 18 months that I have got vaginal Atrophy, then the gynaecologist said I had lichen sclerosus, I have been looking at my symptoms again on Google and actually they fit in with interstitial cystitis. Especially given that the HRT didn't work for me. But this IC is a lot about bladder discomfort and pain which I have a lot of, as well as wanting to wee all the time, which also affects me a lot. I presumed the vaginal soreness was nothing to do with it but on speaking to girls at an IC forum, they say they suffer with that too. So I'm seriously wondering if this could be my answer and not V A. Reading up about it on Google, it mentions not eating or drinking anything acidic. No tomatoes etc. So I don't know if it was just co-incidence or not but on Friday I had tomato soup for lunch - I knew nothing about the IC at this time. And I was really sore and uncomfortable on Friday afternoon. I will see if there is an IC forum here

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  • Posted

    Hi Shirley , nice to hear from you , I explored  the urology route too . I had a ultro sound scan and had  the option to have a cystoscope which I believe checks for such things ? ( worth a thought) 

    When i had a glass of grapefruit juice at Xmas I was in a lot of pain , so you're right in thinking the acidity is connected . 

    I know there is a IC forum and an organisation you can join too , as I went down the same route too ( but I think mine is only  VA)

    i hope you are ok and coping? 

    Xxxx 

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    • Posted

      Nice to hear from you too Jools. Oh you explored the urology route too. An ultra sound would be good but I'm not sure about the cystoscope. I know they put you to sleep or give you a local anaesthetic but I bet there will be discomfort afterwards. It's interesting though that you had some grapefruit juice at Xmas and ended up in a lot of pain. Not good though. I hope you soon got rid of the pain. I have joined an IC Facebook forum and so far all they say, ties in with my symptoms. Even my vaginal soreness. I said that whilst my bladder symptoms were much the same as they were talking about, my Vaginal Soreness must be something else. But then they came back and said most of them with IC had vaginal soreness too. Then I look at how the HRT never worked for me. Makes me wonder. I will have to see a Doc about it I think. But yes I am "Ok' thanks. A few days bad soreness last week. Was dreading having a bad experience with it on Wednesday as I had to drive 70 miles to Yorkshire to see mums solicitor. But luckily for me, it wasn't as bad that day. Hope you are OK and coping too. :-) x
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  • Posted

    Hi,i think acidic can caus irritation in general. Makes sense it could caus more burning etc. Especially with the soeness and burning. I bet more acidic urine causes more irritation inside and out.
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    • Posted

      Yes I agree completely Lee about anything acidic causing burning. The only difference is that I've never noticed any burning till I got this Interstitial Cystitis or whatever it is.
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  • Posted

    Try d mannose from Amazon I have irritated bladder sometimes pressure at the lower part of my stomach. Sometimes burning after weeing. It's all part of the menopause !!! Such joy. I used d mannose and it works no more burning give it a go.
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    • Posted

      Hi Liz, Yes I've tried D Mannose before when I had a UTI and it worked then. There is a scientific reason for it working too. And yes, if this is Vaginal Atrophy I am struggling with, it's definitely part of the menopause, or at least a result of the estrogen levels dropping after the menopause. But if it's Interstitial Cystitis I am struggling with, it's nothing to do with lsck of estrogen etc. D Mannose is expensive isn't it. £20 for a 50g tub! Anyway it might help with this too.. Have also wondered about female Urestomol as that's for bladder frequency/urgency etc isn't it.
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    • Posted

      Hi Shirley yes D Mannoose is expensive but the burning is worse. I take one at night and it seems to hold me. I also drink parsley tea which is vile but that also soothes the bladder. I was told vaginal atrophy then lichen sclerosis I reckon they are all to do with menopause and the doctors have a go at each one. I had a bladder cystoscopy nothing wrong with it so another fun afternoon. I ended up at a dermatologist who straight away said vulvadynia so at least I know what i have. I have that and ic as your bladder walls weaken as the oestrogen levels drop.I cant drink red wine anymore as that irritates the bladder but eat tomatoes very regularly with no problem. We are all so different so I guess its all trial and error. I think Urestomol is for urgency which I dont have not for soothing. Did you try any HRT?
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    • Posted

      Hi Liz, Yes the D Mannose helped with the UTI. It stopped the burning you get with it. It's quite awful isn't it. The burning I get now, without a UTI, starts a few seconds after urination has stopped. I also get burning and soreness inside my bladder though I don't think thats anything to do with a UTI. I could try D Mannose for it though, and see what happens. I wonder if there is anything else like Parsley tea but nicer?

      I too was told Vaginal Atrophy, then Lichen Sclerosus. I've not got Vulvodynia. You mention a cystoscopy and nothing wrong with your bladder so your weakened bladder walls must not have shown up when they did the test. I'm pretty sure I have IC if I'm honest and I think it's more likely this than V A. Thing is, I tried HRT for V A. I had GYNEST for 6 months, Vagifem for 6 months and Ovestin but I only used that one night because the burning inside my Vagina was awful! I'm thinking that if I had got V A and it was an Estrogen problem, the HRT would have sorted it. 6 months on two different lots would have surely sorted it. But they made very little difference. Yes we are all different. I think that Tomatoes irritate me so I have kept off them lately. And I don't drink anyway. But I'm trying to cut out other avoid other acidic things to see how I get on. Yes I think Urestomol is for urgency and perhaps even frequency, both of which I suffer with, not every day but most days. So like the burning too, not every day but most days.

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  • Posted

    Hi Shirley I too tried estriol made no difference whatsover. Vagifem side effects terrified me so I wouldent take those. I get pain in the bladder as well but my bladder cystoscopy never said I had weakened bladder walls.  A Vogel google it sends stuff thro about menopausal and recently its been about bladder pain and what is happening apparantly the mucus in the vagina the healthy stuff also looks after the uretha so if the good mucus is depleted it causes the irritation, burning etc. They recommend stuff to try to increase the mucus in your vagina Sea Buckthorn does increase the mucus worth a try.IC is all about the right foods and drinks to eat there  is an app to download Ive got it on my phone. Yours could well be IC oh the joys of this stage in our lives.     
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    • Posted

      Hi Liz, Must admit if I had seen the side effects of Vagifem, I wouldn't have taken them either! But like Estriol and GYNEST, they made very little difference. Re your weakened bladder walls, you said you have IC and that 'Your bladder walls weaken as the Oestrogen levels drop". I hadn't realised that the bladder walls weakened because of a drop in Oestrogen levels. I see what you mean about the good mucus in the Vagina causing irritation if it is depleted. I had heard sea buckthorn was good for IC but I didn't know why so I might give it a try. Yes I see IC is all about the right foods and drinks. What is the app on your phone? I know it's likely I've got IC. I know, what joys at this stage in our lives! Was expecting none of this. sad
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    • Posted

      Hi,i quit being obsessed with ointments such as a and d and hydrocortisone, now just use vit e oil on outside and vaseline. Irritation on outside is much better so far. I know you are talking the bladder part,just saying for outside i think too much cream,ointment etc may make things worse.
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    • Posted

      Must say I just use Vit E Suppositories inside and outside I use Hydromol but when the Hydromol has run out I will get some Vaseline too I think. I agree. Probably too much cream and ointment etc will probably make things worse. Must go and get some sea buckthorn Capsules though I think and see how I get on.
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    • Posted

      Hi Shirley the app is called icn food list. I too use Vaseline it keeps everything well hydrated. Such fun as we get older!!! All this was very unexpected and unwelcome as it is to most of us. It's finding a coping mechanism and being able to exchange ideas and solutions with others that helps. Let me know how you get on. 😺

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    • Posted

      Hi Liz, Thanks for that. I will have to have a look at that. Yes Vaseline or Hydromol is great isn't it. As I sit here now, I've no bladder discomfort (That will be tomorrow instead!) but I'm getting soreness at the end of my urethra and I'm wanting to wee all the time. When I do go, there is only a tickle. Feel like I don't want to move, go anywhere or do anything with this soreness and burning. Usually the burning is up inside. I agree very unexpected and most unwelcome! I agree its about finding a coping mechanism. It's great bring able to exchange ideas and solutions on here. Do you go on Facebook? I'm on an IC forum there too. Hope you are having an OK day.
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    • Posted

      Hi Shirley yes it's lovely to exchange ideas and get support. So I needed my vaginal tissues plumping up which also helps the weeing parts. Yes I go on Facebook will look at ic forum on there. Aloe Vera capsules sound good do you swallow or insert them?
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    • Posted

      Hi Liz, I was just adding another comment to my last post. Having said I've been doing better since last weekend, I'm not great now so I spoke too soon. I'm not at my worst but I'm not at my best either. Don't want to move but I think I will go and get my Naproxen tablets and an hot water bottle. Glad your burning has gone. Im burning now. :-( I will have to look out for bio care instafresh I think. As for the Aloe Vera Capsules, I swallow them. You may see me on the IC forum on Facebook. Just when I thought things were improving, I've gone backwards this afternoon. :-(
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