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So mad and fed up!

Posted , 14 users are following.

shirley84100
shirley84100

Just had a lovely morning walking round town. No Vaginal discomfort, felt great.

Now this afternoon its a different story! Sore sore sore!! Don't want to do anything or go anywhere.

I've had this Vaginal Atrophy for over a year now. Yes I get some good days in between. But I don't know if that's not worse than having it bad all the time - because on good days I am hoping and praying that the problem is resolved, then it comes back again!

I saw the Doc recently as neither the GINEST or Vagifem worked for me. She told me there was nothing else to help!

So then I went to the chemist and she said I should see Doctor again, even though i'd just told her the doctor said there was nothing more they could do for me!!

I've got lubricants to use but they don't stop the problem coming as there is no hormones in them is there. Also they don't stop the wanting to wee all the time either.

So sick of this. I get up in a morning wondering if I am in for a good day or bad day. Was going to the Supermarket this afternoon but the VA completely put me off.

Thanks for listening

Shirley

2 likes, 346 replies

346 Replies

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  • nancyo
    nancyo shirley84100

    Posted

    Shirley:  I am living your life.  Have had pain for over 5 years, urinary tract infections to the point that antibiotics don't work.  I have one now and am on my third antibiotic.  It took me years to be diagnosed.  Docs thought it was intersistial cystitis, not.  Pain hits whenever, on holiday, out of nowhere and it debilitates me.  I am having an MRI to rule out that there is not diverticulosis on the urethea and after that who knows.  There is a new laser treatment called MonaLisa Tough, not covered by insurance in the U.S. but if it works will pay out of pocket.  Mona Lisa was developed in Italy.  Three laser treatments 6 weeks apart and then once a year.  Was on Premarin cream and it worked for 4 months then pain came back.

    and UTI... 

  • nancyo
    nancyo shirley84100

    Posted

    Exactly know what you are saying.  I have to wear a pad because I don't know if I can make it when I am out.  On probiotics all the time, take d-mannose caps too, nothing works.  One antibiotics again for UTI but all stems from Vaginal Atrophy.  Took me  years to get a diagnosis.  Check out Mona Lisa Laser, that will probably be my next step...not covered bt insurance, $3000 for 3 treatments then once a year for $500.  will do anthing but first want to know it works.  Lets keep in touch.  does help to talk about it.

    ​

    • pat24235
      pat24235 nancyo

      Posted

      Hi Nancyo...we are feeling the same discomforts. I am also wondering about the Mona Lisa process. Still have not had any feedback about that unless I have somehow missed it. The urinary discomfort is just terrible for me today. I took a bath, which I never do, didn't use any soap or anything ... But I am wondering if the water aggravated my condition. There is so much chlorine in the water here. D-mannose seems to help a bit so I am taking extra today in the hope that I get relief. My best to you...glad to see your post.
    • nancyo
      nancyo pat24235

      Posted

      Hi pat. Feels. Good to talk to someone who knows what I am going through… I feel your pain.no matter what I do or don't do the pain just comes on at random. I talked to my doctor about the Mona Lisa treatment and she is on board with that. She feels it is good science and with the trials so far it has been successful. She does not have the machine though I would have to go to another doctor… Hope you feel better soon
    • nancyo
      nancyo pat24235

      Posted

      Hi Pat:  How are you today...do you also suffer from UTI's... I am battling one now, third antibiotic... this is the first place with feedback from people like you that are suffering from this.  I am 70 years old and have had this condition for 5 years... I have been on the Premarinand it worked for awhile. what are we to do, it effects our lives.. noticed on this board they said walking irritates it, I was walking about 3 miles a day, but stopped once the pain started again
    • pat24235
      pat24235 nancyo

      Posted

      Hi Nancyo . Just got back to the site. I just saw my dr again 3 days ago. I was in terrible shape...could feel my bladder protruding into the vaginal area. I also walk 3 to 5 miles every day. Trying to stay strong and healthy but I had to stop. The discomfort and pain were too great. I'm slowly walking again...just not as far as I was. The urinary discomfort had been quite bad for me. All I want to do is lay down but I work full time so that isn't possible until I get home at night. I take d-mannose capsules every day to try to prevent uti's. I can't tell anymore if it is a uti or va. And every time I go to the dr it costs me $85 plus lab fees. I don't go anymore unless I have a fever.
  • carmarie
    carmarie shirley84100

    Posted

    Hello All. It seems we are all suffering from this one way or another. Someone mentioned dreading their holidays due to heat etc and the plane journey. I had this worry also but was ok on a 12 hour flight by applying hydromol on the external area, wore a skirt and big comfy pants. I was in the water a lot while away. And just used hydromol every time and kept up the Vagifem twice a week. I would not advise baths even without adding anything, and I often wonder if it is worth missing a day of a shower as awful as this sounds sometimes you can over clean the area and wash away the good bacteria. We have awful water where I live which really dries the skin. I do find sex however, very uncomfortable to say the least and cannot get full penetration. I use YES lubricant which helps and go on top so have control and my hubby is understanding. If any ladies have any other ideas regarding intercourse I will embrace them as I am only 49 and not ready to give up my love life yet but feel my vagina has shrunk, probably because I avoid sex this does not help me either
  • nancyo
    nancyo shirley84100

    Posted

    Will look for the hydromol and try it.  Can't plan anything lately as don't know when the pain strikes...  Am trying also to get into a clinical study at Stanford.  This is so debilitating
    • carmarie
      carmarie nancyo

      Posted

      I got the Hydromol from my docs on prescription. A big tub lasts me ages and you can use it in the shower too as it creates a lather like soap without the additives.
    • nancyo
      nancyo carmarie

      Posted

      Are you in the UK?  I will ask my doctor but not sure available here.  My daughter lives in London perhaps she could get it for me....
    • carmarie
      carmarie nancyo

      Posted

      Yes I live n North east of UK. My dermatologist recommended I use it so the doctor had to prescribe it.
    • nancyo
      nancyo carmarie

      Posted

      Thanks, will see if she can get a prescription from her doctor for me... or perhaps Amazon has it.  good luck
  • shirley84100
    shirley84100

    Posted

    Hi everyone, Thanks for all your comments. I would have been back a lot sooner but we have no Internet here at the moment and my mobile phone signal has been down all week too.

    I don't know if I dare say this or not because I am probably asking for trouble, but my Vaginal Atrophy hasn't been just as bad these last couple of weeks.

    I went to my doctor and asked her if I could try a different medication. So after having no luck with either GYNEST or Vagifem, the Doc prescribed me with Ovestin Cream to use twice a week. I also asked if I could see a Urologist and she told me to use the Ovestin for a month first. If things were no better after a month, she would give me a gynae examination first, then refer me to a Urologist.

    But its now a week Thursday since I saw Doc. I've not used the Ovestin yet - the side effects scared me. But I have felt a bit better anyway.

    God knows how long this can last. I know its been a nightmare since July last year and I have even sat crying with it. But there has been improvement since I was at the Docs. All I can do is live in hope.

    • nancyo
      nancyo shirley84100

      Posted

      The Ovestin I believe is the same as Premarin which I was prescribed in the U.S.  It worked great for 4 months, then wham UTI back with a vengenance.  Pain was so bad but has subsided... Have lower left backache and generally feel worn out aftr a pain bout.  Good luck Shirley ... don't give up, I see a urogynecologist and she is sympathetic and trying whatever is available
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