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2nd Update

Posted , 6 users are following.

shirley84100
shirley84100

Hi all, Not too bad a week all in all. Happy to report the UTI hasn't returned and its almost 2 weeks since I finished my week long course of antibiotics.

Monday was good. I was out at a coffee shop with my friend. No discomfort.

By Tuesday pm I was getting a bit of discomfort. But it had eased by Wednesday morning.

Wednesday lunchtime I was applying more Hydromol and must have slightly scratched myself without realising because I had some soreness for a few hours after. It eventually died down though and ive been OK since. Just had slight feelings of wanting to wee all the time but nothing bad like I've known in the last year.

I am still taking this all a day at a time. I was in a lot of pain with "AV" for a long time and a lot of discomfort with wanting to wee all the time too. And the recent UTI wasn't good either.

But it does seem to have calmed down a bit. I know I am taking it one day at a time but I am living in hope too.

1 like, 142 replies

142 Replies

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  • jools72842
    jools72842 shirley84100

    Posted

    HI Ladies , I'm not having a particularly good day ,still getting a lot of stinging so I'm wondering if my weeks worth of antibiotics have worked or it's just VA , I have ordered some urine testers which are the same as the doctor uses , they might be able to provide me with a first line of defence , to check myself and then report any findings to the gp.

    I am having stinging the vulva , which I noticed you spoke of Lee? .

    really fed up of this , did try Hydromol as suggested on here , do I too shall await the findings of Chris.

    I shall be in touch when I ( hopefully) glean the findings of my urine test , and I too , Shirley, have an appointment with my doctor on Thursday, Who would have thought I would look forward to a doctors appointment so much eh?? 

    Take care ladies xxx

    • shirley84100
      shirley84100 jools72842

      Posted

      Hi Jools, Sorry you didn't have a good day. Any stinging is awful isn't it. When do your antibiotics run out? Have you been taking 4 every day like I did? Hopefully your stinging will have Settled a bit by now. I'm not as bad as I was yesterday and feel that the soreness has eased up during the day. The Urine testers are a good idea. Hopefully they will help sort out what the problem is and as you say, you can take any findings to your doctor can't you. Yes I'm really fed up with it too. Suffered on and off since July last year. I feel the Hydromol had helped me Jools, even though I've only used it on the outside so to speak. It will be interesting to hear what Chris finds out won't it. Hope all goes well with your Docs appointment on Thursday. I will report back here when I get home from my Docs appointment.
    • lee12629
      lee12629 jools72842

      Posted

      Yes i do believe the uretha and vulva can both hurt like heck from the atrophy.I dont want to feel like this forever.Husband and I have apt with gyno soon to discuss HRT.
  • jools72842
    jools72842 shirley84100

    Posted

    I too drink loads , at least 4 pints a day , which does mean I'm up and down to the toilet a lot . The doctor told me that drinking so much could camouflage any untoward urine symptoms , essentially watering them down  slightly when taking a test, which was an interesting thought. 

    I also have a pint of lemon barley water in the morning,my mother swears it's good for the urinary tract 

    • lee12629
      lee12629 jools72842

      Posted

      I think drinking more water should cut down on infections as it flushes the bacteria out.
    • shirley84100
      shirley84100 jools72842

      Posted

      I know I need to drink a lot more than I am doing Jools. You do well to drink so much though I had not thought of it as camouflaging any unpleasant urine symptoms either. Somebody mentioned barley water to me too. Perhaps the barley in it neutralises any acid in the Urine? I don't know. That's just a guess. Like Lee says, I would think drinking more water would help cut down on infections.
  • jools72842
    jools72842 shirley84100

    Posted

    Morning ladies, hi Shirley, I have also switched to de-caff tea, as I drink a lot of it , and actually it doesn't taste any different. I find that I'm being careful what I drink atm , haven't had alcohol for a while , as I like a glass or so of wine but I guess it's quite acidic? .

     

    • chris00938
      chris00938 jools72842

      Posted

      I drink the green and black tea blend - tastes just like black tea but you need to leave the tea bag in for longer because it tends to be weaker.  Re this acid thing - it's got me thinking back to acidity in the vagina.  I read somewhere (NO idea where it was but time googling would probably find it again) that a lot of infections and thrush etc. was caused by the acidity of the vagina not, IF I remember rightly, being high enough.  Has anyone actually tried testing acidity of the vagina?  It would have to be tested without any products in, I guess, or they might affect the result.
    • lee12629
      lee12629 jools72842

      Posted

      I think the key is when u drink wine drink lots of water.If I dont my uretha seems to get irritated.
    • shirley84100
      shirley84100 chris00938

      Posted

      Hi Chris, You can get the PH testing strips from the same people who make the D Mannose. It's worth testing the acidity of the Vagina isn't it. Or I wonder if you can get them in Boots? I'm not sure about that.

      Having an OK day with the VA today. Hope you are having an OK day too. :-)

    • chris00938
      chris00938 shirley84100

      Posted

      I'm glad it's good for you Shirley.  It is for me too.  I went back to using the coconut oil and it's working SO well.  The prolapse pessary seems to have 'bedded in' more too and it's all really good!  I keep thinking about your doctor's appointment and hoping you get somewhere!  Yes, I reckon the PH testing strips are possibly available from any pharmacy.
    • shirley84100
      shirley84100 chris00938

      Posted

      Glad you are having a good day. Oh yes the coconut oil. That sounds like another great product . Glad to hear the prolapse pessary is working so well too. Docs appt is on Thursday pm. I will come back here as soon as I get home. Must ask about the PH testing strips in Boots next time I'm in town. Such a relief to be virtually symptom free for a day isn't it? :-)
    • chris00938
      chris00938 shirley84100

      Posted

      Yep, I'd remembered your appointment was Thursday LOL!  I'm so glad you're symptom free today.  All my days are good now, for which I'm VERY grateful.  I don't take that for granted after reading this site!

      Hope you get on really well Thursday:-)

    • shirley84100
      shirley84100 chris00938

      Posted

      Thanks Chris. Marvellous to know you are symptom free all the time now. Perhaps I will be one day. I can live in hope. :-)
    • chris00938
      chris00938 shirley84100

      Posted

      Shirley, I sincerely hope you will be too, and hopefully, soon!  I hate to think of you and the other ladies who are having such awful problems, suffering as you are.   But I'm hoping you'll have something that will be encouraging to tell us after your appointment on Thursday.
    • Sus28
      Sus28 chris00938

      Posted

      Morning shirley

      I order ph vaginal cotton swabs on line and test myself from time to time. They are Ecocare Comfort.

    • shirley84100
      shirley84100 chris00938

      Posted

      Thanks Chris. I'm going to write down a list of questions for the doc before I go tomorrow. I don't like to think of all the other women on here having these problems either. It's been really tough for sure.
    • shirley84100
      shirley84100 Sus28

      Posted

      Morning Sus, Thanks for the info. I will look for those on Google. :-)
    • shirley84100
      shirley84100 chris00938

      Posted

      12 noon Wednesday. Here I am on another rough day! Feeling like I want to wee all the time again!! A definite pressure feeling low down behind my Vaginal area. Would sit and cry if my daughter wasn't home to see me upset. :-(
    • chris00938
      chris00938 shirley84100

      Posted

      Shirley, look on the bright side - better this happens the day BEFORE you go to the doctor than the day after!:-)  I'm going to be awfully disappointed if you're not referred somewhere or they actually KNOW what the problem is and stop fumbling through hoping for the best!
    • beverly52803
      beverly52803 Sus28

      Posted

      sus, if you find that is too high or low, what do you do to counteract it?

      Or are you just tracking if symptoms appear when the numbers are off?

    • lee12629
      lee12629 shirley84100

      Posted

      I get a pressure achy feeling some days,wondering if its from dryness or just the irritation of atrophy.Thats why im thinking i might have to get some form of HRT. I have days also where i feel i have to go from the pressure. .i dont believe i have a uti though.Drink lots of water,even with the pressure feeling..will help with any bacteria causing irritation. I hope u feel better friend.
    • chris00938
      chris00938 beverly52803

      Posted

      I did read somewhere about rinsing with I THINK (you'd hav to check that!) half vinegar and half water to increase acidity plus other things that would also do it.
    • shirley84100
      shirley84100 chris00938

      Posted

      Yes that's a good point Chris. It's a good job it happened today. Another issue with the wanting to wee all the time is that when I go to the bathroom , I only ever urinate a thimble full! However I seem to be "Back to normal at the moment" . So that's a relief after today. Back tomorrow.
    • shirley84100
      shirley84100 lee12629

      Posted

      Yes, I am thinking I will end up on HRT too if I'm honest. But not before I spoken in detail about it with my Doc. I am meant to be using Ovestin Cream twice a week but am scared of the side effects. So maybe I could use it once a week to see how I get on and lessen any risk. I know I've not got a UTI so that's a plus. But yes I am trying to drink more water. Hope you soon feel better too, and everyone else on here.
    • lee12629
      lee12629 shirley84100

      Posted

      Ask for the mildest dose to begin with..at least thats what im thinking i will do.
    • chris00938
      chris00938 shirley84100

      Posted

      You haven't got a prolapse, have you Shirley?  I guess they'd have picked that up though.  Anyway, lots and lots of luck for tomorrow!
    • shirley84100
      shirley84100 lee12629

      Posted

      Well thing is I have already got a tube of Ovestin. Probably twice a weeks use is the lowest dose but I want it even lower if it ends up with me using it. So I will see if I can use it once a week. It certainly can't make the side effects worse can it? Anyway we'll see.
    • shirley84100
      shirley84100 chris00938

      Posted

      No no prolapse Chris. Thanks. I hope to come away with some better news tomorrow. :-)
    • lee12629
      lee12629 shirley84100

      Posted

      Good luck.I wish we could get drs apts long enough so we could actually get our problems solved.Instead it takes many to figure anything out.Not like the old days.
    • beverly52803
      beverly52803 shirley84100

      Posted

      The doctor may want you to take the dose proven in studies to be effective. Definitely ask.

      I had that happen with Fosomax for bone loss. A scan proved it had brought my density way up so I stopped taking it as often. (Had read of problems with continued use). When my doctor found out she as very annoyed and said I may as well not take it at all as there were no studies that proved that dose would work...so I stopped. In that case it worked out fine, but I have very limited experience with hormone cream. Go with a list of questions if you can. My doctor said I was to take it and come back twice for exams, but I decided against it last year. If I had serious AV issues I would try it though.

    • beverly52803
      beverly52803 chris00938

      Posted

      I think that would be too acidic. Was given something called Acid Gel by a doctor years ago. Didn't work. He did say susceptability to problems could be caused by acid/alkali imbalance.
    • Sus28
      Sus28 beverly52803

      Posted

      Yes if it's too high I use balance activ for BV.

      its never been low.  If it was low, ie the other way then not sure what that would mean?

    • chris00938
      chris00938 beverly52803

      Posted

      A couple of links that might be useful regarding acid/alkali balance BUT, having said that, remember that anyone can write anything on the internet so if in doubt about anything, check it out first.  But just googling 'balance of acid/alkali in the vagina' brought up so much information, so there might be something useful for someone having serious problems because of a lack of balance there.

      Lee and Shirley, good luck for today!

      Emis Moderator comment: I have removed the link(s) directing to site(s) unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

      http://patient.uservoice.com/knowledgebase/articles/398316-adding-links-to-posts

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

    • shirley84100
      shirley84100 chris00938

      Posted

      Thank you Chris. I am now back from the docs. I asked her if my V A could be bacterial vaginosis but she thought it was most unlikely. I also mentioned the possibility that it may be an enflamed urethra. She agreed it could be and said she would test my water tomorrow afternoon - i am going to see another Doc with daughter tomorrow pm and can give sample to reception. They can pass it on to my Doc for testing and I will get my result Whilst I'm still at the surgery. Thing is, if blood shows up in my sample, it would indicate an enflamed urethra and she would refer me to Urologist. Also spoke about Ovestin HRT and me being scared of strokes listed in the side effects coz of mum having recently died from a severe stroke. She said the chances are minimal and are much greater if you take any HRT orally. I suggested only using the HRT cream once a week instead of twice and that would lessen the chances of side effects too. She said that was fine. So now I'm waiting to see tomorrow afternoon if I get referred or not. Could have done test today but I had only just been to bathroom before I went to Docs and so there was very little chance of me producing a sample when I got there.
    • chris00938
      chris00938 shirley84100

      Posted

      Shirley, what's her plan if there isn't any blood?  Did she think the HRT cream would actually do anything using once a week?  Interesting that today there was something on the news saying that women should be able to make informed decisions on the pros and cons of HRT and be told the risks, or something like that.  My suggestion would be to look up the website of Ovestin and weigh up the risks yourself and then at least you've made an informed decision.  I do hope you get somewhere tomorrow after they've done the test.
    • jools72842
      jools72842 shirley84100

      Posted

      Hi Ladies; Shirley thanks for sharing your news , I too have returned from the doctors , she has recommended Estriol cream, as my urethra has been quite traumatised and this will repair it. It means I ditch the vagifem , which was working but not reaching the areas that needed it , I have read good things about Estriol for helping the vulva and uretha , so I am glad to use it , as the pain and discomfort has at times been unbearable.

      I hope you get sorted too 

      take care ladies xxxx

    • shirley84100
      shirley84100 chris00938

      Posted

      Hi Chris, Yes I've looked on the website a while ago, and also on the leaflet that comes with the Ovestin. The fact that strokes and breast cancer are listed in side effects scares me but Doc insists the chances are minimal, even less if I only use it once a week instead of twice. I think the bottom line is that if there is no blood in my urine (And I doubt there will be somehow) there is no magic cure for the Vaginal Atrophy. When all said and done, when I was on GYNEST (Cream) and Vagifem (Vaginal tablet) neither of them helped the soreness or the wanting to wee all the time though I am inclined to think they did stop UTI'S. If anything they made the soreness worse. It may be the same with Ovestin too. I don't think there is any clear cut answer to this and I think the Doc knows that and thinks that I might as well try the Ovestin once a week. That and use the Replens as well. I'm facing the facts that this is a permanent condition and that I will just have to make the best of any good days. If its not better in 18 months, it never will be. Back tomorrow afternoon with my result.
    • shirley84100
      shirley84100 jools72842

      Posted

      Hi Jools, Great to hear your good news. How does the Doc know your Urethra has been traumatised? I'm really pleased that you have got something to repair it. That's brilliant isn't it. I have heard of estriol before. Great to know it will ease the pain and discomfort for you. :-)
    • jools72842
      jools72842 shirley84100

      Posted

      Thanks Shirley , she did an internal exam, which brought tears to my eyes , I am pleased to have some  relief , sad that this condition is permanent , but hey ho ! .im hoping this works pretty quickly. She wants me back in a fortnight to review .

      xxxx

    • chris00938
      chris00938 shirley84100

      Posted

      I hope it goes well for you Shirley.  Hope you get something useful tomorrow too.  Your doctor didn't suggest referring you then?
    • shirley84100
      shirley84100 jools72842

      Posted

      Oh an internal exam. I bet it would have brought tears to my eyes too. Really glad that you have got some relief but really sorry to hear that the condition is permanent. Yes fingers crossed the Estriol works quickly. I feel sad that my condition is very likely permanent too. Will see what the doc says tomorrow when she has tested my water.
    • shirley84100
      shirley84100 chris00938

      Posted

      Thanks Chris. I hope I get something useful too. Doc only suggested referring me depending on the result of my water test.
    • lee12629
      lee12629 shirley84100

      Posted

      I had a small amt of blood that could not be seen by the eye..doctor said was quite common and thought nothing of it from a urine sample.
    • shirley84100
      shirley84100 lee12629

      Posted

      It had crossed my mind Lee I admit, that blood in the Urine could point to anything or like you say, nothing. So it makes me wonder of Doc is just doing it so it looks like she is taking some action.
    • chris00938
      chris00938 shirley84100

      Posted

      Shirley, I wasn't going to say that but that's exactly what I thought with both of you.  Your situations have been going on for such a long time without an answer being found and I dread to think how frustrated you must both be, because I'M frustrated for you!  Personally I wouldn't accept that there was no answer to this until I'd been referred to a urogynie.  I was talking to my husband about it last night and he was saying that he'd be with me at the doctors and push for a referral and make sure we got one, but it's not my place to be pushing you to do this.  I just hope that somehow you both find an answer and I am sorry if I've come over as pushy.

      I did just find this http://www.nhs.uk/conditions/blood-in-urine/Pages/Introduction.aspx that says healthy urine should contain no detectable signs of blood, and hope that might help.

      Emis Moderator comment: there is also the patient leaflet from our site linked below.

      https://patient.info/health/blood-in-urine

    • shirley84100
      shirley84100 chris00938

      Posted

      Hi Chris, Thanks for your message. Yes it seems like the doc is just doing something to make it seem like she is trying to find an answer doesn't it. Thing is she is quite confident that I have got Vaginal Atrophy and the only answer to that is to take HRT and use lubricants etc. She thinks i might have an enflamed urethra but I don't. I think my symptoms would be worse if I had. Doc did examine my Vagina a while ago, even though she couldn't do the full examination, and she saw my Vagina walls were all red and sore looking and it was dry as well. That's when she diagnosed V A.

      Re my husband coming to appointments with me, he never has done, not even when I went to see the surgeon re my hip replacement!! You are right. He should be at appointments with me, pushing for answers and referrals etc. Admittedly he still works full time but there are appointments up to 6.30pm. I had an orthopaedics appointment a while ago and said I wanted him to come with me, he was home on holiday that day. But he wouldn't come. Yet when his mum is taken to hospital he drops everything!

      Not seen your links yet but I will have a look now. Thanks again. :-)

    • chris00938
      chris00938 shirley84100

      Posted

      I'm even more frustrated that your husband won't support you with this Shirley.  Do you have a close relative or friend who could go with you?  If I lived close enough I'D come with you!  I just hope that your doctor will either come up with something or admit they can't help and send you somewhere.  Just looking briefly it mentioned online endocrinologists, but I really don't know what department is best.
    • shirley84100
      shirley84100 chris00938

      Posted

      Hi Chris, Me and hubby have not been close in any way for quite a long time now. We "Get on" but only on the surface of life and are more like brother and sister instead of husband and wife. Not that that makes hubbys lack of support right. It doesn't. Sadly I'm just so used to doing things on my own. Thank you for saying you would come to Docs with me if you were close enough. That's a kind thought anyway. Got 3 friends in this town. One I see about twice a year, the other I see approx once every couple of months and the other I see perhaps once every month or 6 weeks. They are all tied up with their own families. Two of them have their mums living with them and the others life revolves around her grandsons. As for close relatives, none apart from twin son and daughter. Mum in Law lives nearby but I wouldn't want her coming. And mum was in town till she died 3 months ago. So I'm on my own with it really. So the doc tested my water. No blood in it. She admitted that the only treatment for V A is HRT and lubricants.. She did say that one dose of Ovestin should help but if not, to up it a bit. So no referal. Thank you for your help and support with this issue. I really appreciate it. :-)
    • chris00938
      chris00938 shirley84100

      Posted

      I'm so sad to read all of that Shirley.  I truly don't know what to suggest.  Oh I SO wish I did!  But thinking of you.  I just hope that someone on here will be able to offer some ideas for you to try. 

      Now - any reports from anyone else who's been using coconut oil  regularly?  Which reminds me, I read on one site today that they thought you shouldn't use it internally, but there we go - I've been using it for a while now.  I tried only using it overnight but the bit where the knob of my pessary comes down got a bit uncomfortable, so I'm using it a couple of times a day - morning and night now and I've noticed the tissues everywhere are feeling more 'bulked out' and smooth.  I can't understand how this has worked so well.  It seems to have done more than I expected.  I suppose no trials have ever been done because there are no profits for any drug companies, but if anyone else has tried it for a few weeks can you report on it to let us know how it's worked for you.

    • pat24235
      pat24235 chris00938

      Posted

      Hi ... I've been using Vagifem twice a week for 6-8 months although I've missed a dose now and then. I use coconut oil daily internally in the morning and in the evening. To my knowledge it is safe. I am definitely better. I was right with Shirley for quite a while but I have gotten better. I wish I didn't need the vagifem but when I tried stopping it I got much worse very quickly. It helps with the blood flow to the vaginal tissue which helps the muscles as well as the dryness. That slow strengthening of muscle has helped with the bladder issues of feeling like weeing all the time. I don't know what the future will bring but for now I am more comfortable and at ease. I would not worry about using the coconut oil. I cook with it. Use it ony skin. Use it for lots of things. I buy unfiltered virgin coconut oil.
    • chris00938
      chris00938 pat24235

      Posted

      Yes, I'm not too worried about using it Pat, and glad things are working for you.  Despite having a bad experience with Vagifem, I DO understand why people use it when it works for them.  At the end of the day we have to make informed decisions on lots of things in our lives and when the risk of a med is less than the problem we get if we don't use it, then that has to be taken into account.  Yes, I buy the jars of organic coconut and you can rake out a piece and mould it into pessary shape, so it's easy to get where you want it.
    • lee12629
      lee12629 chris00938

      Posted

      At the time mine was a very low count,next physical is soon and i will question it.
    • chris00938
      chris00938 beverly52803

      Posted

      None.  It just said don't use oils internally but just recommended estrogen or lubricants.  But seeing as some products use coconut oil, like key e pessaries, I wonder if that site had vested interests.
    • beverly52803
      beverly52803 chris00938

      Posted

      chris, I wouldn't put much faith in their advice if the included coconut oil. Doesn't it have anti-bacterial and/or anti-fungal properties? What harm could it do? I'm sure there are other oils that could cause problems.

      Who sponsors the site?

    • chris00938
      chris00938 beverly52803

      Posted

      I can't remember Beverly!  I looked at so many (I was actually googling in the hopes of coming up with something miraculous to help Shirley) but I'm really not anxious at all about using the coconut oil.  It's working REALLY well for me and the tissues feel stronger and plumper and good!  Just reading that article from the mail today, it enforces my thoughts on why they've not done studies on it - because it doesn't bring profits to phamaceutical companies!
    • lee12629
      lee12629 chris00938

      Posted

      Wonder if when uretha starts to atrophy if trace amts can happen,kidney stone,irritation,menopause symptom.mine was a trace amt over 2 years ago,no bladder infections etc.all i know is at the time i looked it up,even called his nurse.will see what he says..i havnt had an infection in years just get the urgency at times from the atrophy i think.
    • shirley84100
      shirley84100 chris00938

      Posted

      Thanks Chris. Thank you for thinking of me. Perhaps I should try the coconut oil in between my Ovestin doses?
    • shirley84100
      shirley84100 chris00938

      Posted

      Thanks again Chris for looking for something miraculous for me. I've not tried the coconut oil yet. Maybe that's my next step as well as the Ovestin?
    • shirley84100
      shirley84100 pat24235

      Posted

      Hi Pat, I used Vagifem for about 8 months but it did nothing for me. Neither did GYNEST. Perhaps the Ovestin will help me?
    • lee12629
      lee12629 jools72842

      Posted

      Does the wine ever make the symptoms worse..at times does with me.
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