How do I get anyone to understand how hard this condition is making my life?

Posted , 6 users are following.

I'm really frustrated. I have been struggling with AV since last August. And it has changed my life. I had my best friend tell me how much worse I could have it. But then she doesn't have to figure out how to stop crying, or how to even sit in a chair. How much serious burning pain this is. They act like I have a yeast infection. At 62 my sex life with my husband of 40 years is just over? I seriously am ready to scream. I got home from the store, picked up my prescription for yuvafem and when I took it out of the bag all the pills had already been ejected out of the applicators. I cried for ten minutes. Looks like they were that way from the factory because the package is not damaged. I so don't want to be this way and have tried everything to get better except the Mona lisa which I can't afford right now. How do you all handle friends and family? Do you just suffer in silence? The only one that seems to understand I'm hurting are my two dogs. 

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18 Replies

  • Posted

    Donna

    I have posted on here before, like you. It's no consolation to you that I am in exactly the same position; have been struggling with VA since August and it has changed my life. I have tried everything too. I am still struggling.

    The only reassurance I can tell you (and myself) is that I have got as far as being advised, by a 'menopause specialit' here in the UK to use vagifem 5 times a week which I have been doing since mid Jan and I think it's helping. I still have bladder pressure which is my main symptom and sometimes stinging but I think it's slowly improving though ot gone.I have just started using Sylx too, on the outside though only for the last couple of days so a bit early to tell.

    I had a bladder procedure a couple of weeks ago to rule out any other issues and am left with VA as nothing else was diagnosed.

    It's really hard and my emotional/psychological health is suffering and I have had to stop working but I think I can see light at the end of the tunnel. I was told twice a week vagifem isn't enough for some of us and that twice a week is a low dose. Try asking about that?!

    I have also been told that it could take some time longer before this settles or I get it under control. I understand how hard it is, hope that helps a little bit.

    Take care

     

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    • Posted

      I am so sorry you are going through this too. I think it makes it worse that no one can understand this just stops your life. I don't want it to and I'm struggling to be as normal as possible but I am turning down all custom orders I just don't want to deal with customers right now. I just have to have no deadlines or stress. And I've never done that, I've always been a work a holic, goal driven but not now. Unfortunately I have some customers that seem to have trouble understanding the word no. And I'm actually afraid my pain will transfer to my painting. Although my finished work looks the same lol. I know I am going to go completely crazy.

      My doctor increased my yuvafem to 3 times a week. Haven't noticed any improvement at all. I have a follow up appt but not until April. 

      I just want my life back and finding it difficult not to panic.

      I don't know what I would have done if I had not found you guys. Thank you so much

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    • Posted

      Donna,

      It's awful, I have worked full time all my life, until this so I understand. I am only just starting to feel better after a month on five vagifem and six months of pain!

      I truly believed I would never get better and even now I am so scared. However, I have come to realise that every woman who has this finds a different, but similar, route out. Yours will be there but just not worked out yet. Then I think we have to pick up the pieces of our lives. That's what I am starting to do. Only just tonight, after 6 months, my 22 year old son who is still at home said " I forgot you were ill this week mum, you seem so much better". That's just this week Donna so keep on. I am starting to think that with enough vagifem it does work eventually.

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  • Posted

    Donna I so understand where you're coming from and I know Catherine does too (she and I lean on each other a lot; a really nice outcome of this forum).

    Catherine's advice is spot-on, re upping the Yuvafem/Vagifem dose. There are very helpful discussion forums on menopause matters dot co dot uk that discuss VA and I have personally learned a lot there. Forgive me for not remembering, but are you also on systemic HRT? For many women 2 vagifem a week is not enough, as Catherine says, and for many others, Vagifem (or vaginal estrogen cream) alone is not enough and they also need full systemic HRT as well (gel or patch) together with the vagifem. I think I remember you used Estrace ? Are you continuing with it for the outside?

    My gynecologist also precsribed a antihistamine tablet for 14 days for the outside, saying the inflammation had become entrenched and would only subside with an antihistamine. He also told me to use two vagifem tablets together every other day until I felt better, for however long that took.

    The vagifem/yuvafem is such a tiny dose; twice a week for a year is equivalent to only 1 HRT oral tablet. So dont worry about increasing its use too much, until you are comfortable.

    Its maddening that on top of everything, the Yuvafem tablets were defective. I hope you can take them back.

    Hang in there

    Kkay

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    • Posted

      I'm not on any oral HRT.  Just the yuvafem now that my dr increased to three times a week. I have not noticed any improvement at all. I use the estrace on the outside still. 

      Is the antihistamine taken orally?

      I am going to take the defective yuvafem back to the pharmacy. They are still sealed so they better take them back. Ugh

      Thank you for all your good info, it helps so much

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    • Posted

      Hi there Donna, f you have not noticed any change at all you might consider upping the Yuvafem to five times a week like Catherine. There are women in Australia and the UK who use it daily and have for years. It is also helpful to use a vaginal moisturisers at the same time which keeps the pH at a healthy level.

      The anti-histamine prescribed for me was Zyrtec, one tablet orally twice a day for 14 days

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    • Posted

      Hi Donna,

      Some people swear by Replens. On menopause matters dot co dot uk several VA old timers report that use Multi Gyn Actigel, which also has excellent reviews online.

      I have also seen that some people prefer Yes and others Sylk. I think those are the four main ones I've seen people report using.

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    • Posted

      Kroger Pharmacy refused to exchange the defective yuvafem. They said I can pull them apart and reload the pill myself. But to discard them if I drop the pill. I've already dropped one ugh. I will be checking them from now on and refuse to accept them that way

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  • Posted

    I have to say I'm not suffering but have deepest sympathy for those who are in pain. I cant physically have sex or even a smear test- but as long as I keep my private s private I'm ok! I do get sore spots from the lack of pubic hair - sorry if this is tmi!

    my libido has disappeared- I suspect due to painful sex at menopause - and actually I don't desire my husband anymore so it's no big deal for me. Should we part it could become an issue.

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  • Posted

    Hi Donna!  I've been struggling with VA for a year and one month! Severe burning and lots of pain, can't sit, etc.  I've been on Vagifem for a couple of weeks now and have had one Mona Lisa Treatment.  I would say I am about 20% better which isn't much but I'll take any improvements.  I have been staying up late at night researching alternatives to estrogen replacement therapy as a replacement or in addition to the vagifem I take (which i intend to get off all together.  I'm not big on estrogen therapy even tho most think risk is low.)

    Instead of reading generic web sites with info I have decided to jump straight to the clinical trials where I can read actual research and results.  I have looked at Vitamin E trials, Replens trials, and Hyaluronic Acid trials.  Although Vitamin E suppositories placed inside the vagina and Vitamin E oil placed outside the vagina have had some really great results, it seems that the Hyaluronic Acid seems to work the best, very, very close to Estrogen replacement therapy.  One of the clinical trials used Hyalofemme  which is a  hyaluronic acid cream.  Hyaluronic acid, by the way, is all natural and produced by the human body naturally although it is created in a lab now to make creams.  This clinical study cited that it is almost equal to estrogen replaement therapy and in some instances even better in helping the urinary tract due to menopause.  I cannot provide links to these clinical trials here because this site will delete my post but you can google "Hyaluronic clinical trials for atrophic vaginosis" or something similar or can google "clinical trial Hyalofemme and you will probably find what I did.  The United States is not the only place that conducts clinical trials, you must look to other countries as well to read their studies. There are multiple hyaluronic acid trials.  Hyaluronic acid is an intense moisturizer and also heals the vaginal mucosa, lowers vaginal PH and increases the vaginal maturation index which is a fancy way of saying that it matures the cells in the vagina restoring health which is what estrogen does.

    Hyalofemme is not available in the US but I had no problems finding it on ebay from a pharmacist in the UK that sells products there.  I was unable to find it on Amazon. I ordered it about 7 days ago and it is arriving day after tomorrow from UK.

    If anyone is interested, in a private chat, I can provide links to the clinical trials I found regarding vitamin E, hyalofemme and hyaluronic acid.  I think you will be pleased when you read the results.  You can add this product or Vitamin E as an adjunct to your vagifem or try it solely.  

    Please do not get too upset.  I quit my job, and cried for one year straight because no doctor knew what was wrong with me. I too, am an artist, Now that I know I will fight, fight fight!  Remember, we are not the first nor the last generation to experience AV, some of us very severely like you and me.  But past generations did not have HRT, so what did they do? I am on a quest to find out!

     Many natural remedies do work such as Vit E and hyalauronic acid.  They too take about three months to fully kick in, but from what I read in scientific journals they work just as well as HRT.  I truly believe that you and I will find the solution.  Each woman is different, BUT YOU WILL BE OKAY!  You just have to find the combination that works for you and YOU WILL FIND IT! I understand your pain I became very depressed over this and sat and cried for months, and rocked in pain but now knowing what it is I am fightig back!

    Sorry for any typos, I don't have time to reread this.

    Blessings,

     

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    • Posted

      Thank you so much for all the information I will look up the trials. I have tried vit E didn't do anything I could tell. After about a month on estrace I started getting better and then it went backwards. The panic I feel that I will always hurt is what gets to me. And the eye rolling or even jokes made when someone finds out what I am going through. Even doctors don't seem to understand

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    • Posted

      Donna,  I have read on a couple of sites that for some women it take up to a year for local estrogens to work.  I understand the panic.  I feel it too many days.  Try to keep calm.  Another thing I am doing is trying to heal my adrenal glands.  After menopause the ovaries stop making estrogen and the adrenals take over, but the make little.  Under periods of high stress the adrenals stop producing estrogen.  I have been under severe stress for many years now.  Perhaps you have been under stress too? Then, this last year, not knowing what was wrong with me, I was extremely stressed out.  This made my symptoms even worse.

      I am now eating a whole food diet, I eliminated refined sugar, no alchohol, I am getting adequate sleep, moderate exercise and most importantly reducing my stress.  All these things are correcting behaviors that were very taxing on my adrenal glands.  I can't change my living situation and problems in my life but I can control how I respond to them, thus reducing my stress.  It takes 6 months to 18 months to heal adrenal glands and get them to produce adequate estrogen.  And so, I am attacking this problem from every angle. Being upset about AV only causes your adrenal glands to be more stressed so try as much as you can to remain calm.  Keep telling yourself that you will get better, because you will!

      The problem is, all of the treatments for AV take time to kick in.  Even up to a year.  This includes the natural remedies or estrogen replacement and healing adrenal glands. Remember, the women who post here are the ones who are struggling but many women who don't post here have eventually gotten relief from a certain method or combo of methods. And women that post here with severe AV get better but don't return to post that they are okay now.

       Believe me, I panic too!  But when I do I keep telling myself that I will be okay, that it is just going to take time..

      I am trying Mona Lisa Laser as well, but have only had one treatment so far which hasn't done much, but a couple of women on this site said it took all three treatments to get relief.  I am in Florida and have found a doctor who performs the three treatments, inside and outside the vagina for $1500 which is a great price!

      Hang in there!  You will be okay..Don't give up!  You will find what works for you...It just takes time and as my doctor said patience to feel better. But you will get better!

      I am going to add you to my prayer list and all the women here as well!  

      Blessings to you...

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    • Posted

      thank you so much for taking the time to write all that good info. It gives me hope.  And thank you for adding me to your prayer list.  The stress factor in my life has been very high for the last two years after losing my Mom and the broken family that came with that. It amazes me how fast this condition happened and became severe. 

      I am hanging in there and have had a better few days. But it goes back and forth. I keep hoping someday it will be all good days again

       

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