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Help with AV pain please!

Posted , 13 users are following.

caroline_59370
caroline_59370

hi, I have been diagnosed with AV this week after weeks of pain and treatments for thrush cystitis and UTI. I have been prescribed vagifem which I have been taking for 3 days but the burning and discomfort is terrible! Especially when sitting.  I wondered if there was an external topical cream I could use that others have found helpful?! I have seen lots of suggestions on here but they don't look like they are available in the UK! Anyone help please?! smile 

2 likes, 86 replies

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  • tracy12090
    tracy12090 caroline_59370

    Posted

    Hi it's a long journey unfortunately that takes time to control. The Vagifem do take at least a month I'd say in my case to make a noticeable difference. If you get some vitamin E capsules just the ones at health food shop. You can insert one overnight in the capsule to melt or decant in the day and rub it in. I found Cartons vitamin E pessaries easier to use at night you can cut them in half too.

    Quite a few people use ice to cool down there wrapped I believe to avoid burn. I also used Vagisil which is used outside the Vaginally on the lips and in the inner lips slightly to numb but not up inside to make sitting more comfortable. It's very difficult to avoid though I know, but wearing loose clothing will help preferably a skirt will bring a bit of relief. As the more irritation the less time it has to heal.

    I hope you feel better soon :-)

    • tracy12090
      tracy12090

      Posted

      Carsons pessaries that should read
  • KKay
    KKay caroline_59370

    Posted

    Caroline, I had to read this twice and check your name just to make sure I hadn't posted this myself.

    I've also been struggling with a UTI, then thrush and now finally diagnosed as VA. I'm on day 4 of vagifem but just like you, the burning is bad and also like you, particularly awful with sitting.

    I'm going to try to get through the 14 days, hope I can.

    I've also read that a Vit A capsule inserted vaginally can be soothing.

    If you come accross anything that helps, PLEASE share it on this thread...

    Good luck

  • wendy62425
    wendy62425 caroline_59370

    Posted

    Hello

    I too have been there.  My GYN gave me estrogen cream internally (prescription) for two weeks before starting the Vagifem 2 times a week......it was a help as it does take the Vagifem time to help you feel normal again...several weeks.  You might want to ask your doctor about the estrogen cream for 14 days.

    Hang in there.......you will feel normal again.  I might have to be on  Vagifem..forever unfortunately....however if it keeps me feeling normal...it's worth it!

    Take good care.......keep us posted.

    wendy

    • KKay
      KKay wendy62425

      Posted

      Hello Wendy, thanks for this. Can you tell was what the Estrogen cream was called?
    • wendy62425
      wendy62425 KKay

      Posted

      Hello KKay

      Yes.....PREMARIN VAGINAL CR/APP.   30gm. apply One half inch to affected area at bedtime for 14 days. Internally. applicator included.

      i hope this helps for you....it's the best way to start before Vagifem.

      Wendy

    • KKay
      KKay wendy62425

      Posted

      A question Wendy re the Premarin - by one half inch do you mean half an inch of cream or one and half inch ? My applicator has grams marked on it: 0.5, 1.0, 1.5 and 2.0

      Thanks

    • wendy62425
      wendy62425 KKay

      Posted

      Hello KKay

      my script says one half inch at bedtime.  1/2 inch. I have  I will be more careful!doctors appointment this morning as it appears I have another UTI ugh.

        I was late by a couple of days taking the Vagifem this past week and felt the discomfort coming back....which shows that I will be staying on meds forever......it took over night for me to feel normal again.  Needless to say I will be more careful with taking meds on time!

      I had to be on an Antibiotic for sinus infection a couple weeks ago and was hoping I would not get a yeast infection as I hear some ladies do. Unfortunately I get UTI's too often....just pray I won't ever get immune to the meds.

      Have a nice day

      Wendy

  • cool4cats
    cool4cats caroline_59370

    Posted

    Hi Caroline,

    I have the terrible burning too but it's inside my vagina, it irritates 24/7 and it's been driving me mad.

    My doctor also prescribed Vagifem but I won't use it as there's a history of breast cancer in the family so I'm not taking any risks.

    I've tried using vitamin e capsules as a pessary but it didn't do much for me at all. Then a friend who has suffered with problems down below suggested I try Salcura Topida spray, it's made of natural ingredients which suited me, so I ordered a bottle.

    I've used it three times and it's the first time in a very long time that I've had any kind of relief from the burning. I sprayed it internally (although it's a bit awkward to do) and also sprayed some externally, it feels so soothing. 

    I'm in the UK too and I found the cheapest price on Ebay, it's £9.60 a bottle but worth every penny.

    I'd recommend giving it a try yourself.

    Good luck.

     

    • wendy62425
      wendy62425 cool4cats

      Posted

      Good Morning

      i just wanted to mention that I too have breast cancer in my family....my sister.  My GYN doctor said the Vagifem is low dose and stays locally.  

      Not good to be on an estrogen cream for a long time.

        Vagifem has been a blessing....so wonderful to feel normal again.   I will continue to get yearly mammograms and may see a breast  specialist every 6 months just in case.

      i hope this helps.

      have a good day everyone!🌺

      Wendy

  • KKay
    KKay caroline_59370

    Posted

    Sorry I wrote vitamin A in my reply to you earlier, I meant to write vitamin E

    Hope you are feeling better

    • caroline_59370
      caroline_59370 KKay

      Posted

      Thank you ladies for all your suggestions! I swear this is getting worse every day.  I have ordered the salcura topida and I also went on Amazon looking for any kind of external cream.  I have ordered two to give them a try one is called regelle and the other is hyalofemme I will let you know if any of this helps! Keep coming at me with any new suggestions as I'm so desperate now! I'm not even managing to sleep for pain sad( xxx

    • donna18720
      donna18720 caroline_59370

      Posted

      Caroline and everyone else suffering here. I was in your shoes several months ago. The burning pain was so bad and never stopped . I was dx with VA with a vaginal tear finally after being treated for everything else UTI, yeast etc. It took three weeks on the estridiol cream to start seeing relief. My husband finally went to the doctor for his own appt and told them I HAD to have something for the pain. I had not slept in weeks, I couldn't work all I did was sit back in the recliner with an ice pack between my legs. Sitting was impossible. The nurse practioner finally prescribled the lowest dose of Norco. I am very sensitive to pain meds so I only used a fourth of a tablet. When I took the first one I really had no hope it would work. IT DID. For the first time in weeks my pain was reduced by about 75%. I know many people hesitate using pain meds because they can become addicting. BUt the goal with VA is to get the discomfort to a bearable level while waiting for the estridiol to repair the vagina damage. After three months, most days are okay. I've thought of switching to vagifem instead of the cream but just don't want to rock the boat.

      Anyway make your doctor prescribe you actual pain relief like Norco, it works. I had a stern discussion with my doctor at my follow up. I told her she treated the condition correctly but failed to understand that this is burning constant pain, it is not like a yeast infection or minor soreness It is FLAT OUT PAIN. I woke up every morning after very little sleep shaking from head to toe the pain was so bad. You need to make them understand. I stopped taking the Norco after about six weeks on the estriodiol. But if it flares I would not hesitate to take it again. I cried like a baby when I took the first one and it subsided the pain. Do not suffer, there is no reason to not even for one day . I tried everything vit E, coconut oil etc Norco gave me back my life. 

    • KKay
      KKay donna18720

      Posted

      Thank you Donna this is really helpful. Is Norco the trade name? I'm not familiar with it. And what is the strength of each tablet?

    • cool4cats
      cool4cats caroline_59370

      Posted

      Hi Caroline,

      I hope you get some relief with the items you've ordered. I tried a gel called 'Yes VM' too but it hasn't done much for me, the Topida spray has been the best so far.

      I asked my doctor if she could prescribe Hyalofemme for me as knew it is available on prescription, she agreed and so I'm going to try that too.

      Good luck xx

    • donna18720
      donna18720 KKay

      Posted

      Norco is the brand name it is hydrocodone-acetaminophen 5-325 tablet every six hours. The first one I took a whole tablet , put me out for hours. Over time I reduced it to 1/2 and then to 1/4th tablets with a pill cutter so I could work. It can be addicting, I took that low dose for six weeks but gradually stopped
    • KKay
      KKay donna18720

      Posted

      Thank you so much Donna, that is really helpful
    • caroline_59370
      caroline_59370 KKay

      Posted

      Hi guys, this is just getting worse! Have tried everything!! My vagina is so dry I can't even insert the prescribed medication! So uncomfortable and miserable sad((( xxxx

    • donna18720
      donna18720 caroline_59370

      Posted

      call your doctor because it is really important to deliver that estrogen on a regular schedule. If I miss a dose I can tell right away. 
    • KKay
      KKay donna18720

      Posted

      Donna, thank you for all your input here, it is really helpful.

      I am on day 7 of Vagifem (nightly) and am also using Estrogel as well and waiting for something to start working.

      You said you are using estradiol cream and if I understood you correctly, you said you are thinking of switiching to vagifem, but are understnadlably afraid to rock the boat at this point, now that you are doing well. My question is, what kind of estradiol cream are you using ?

      Thanks smile

    • KKay
      KKay

      Posted

      I meant to type 'understandably' . Can't even spell !!

    • KKay
      KKay caroline_59370

      Posted

      Caroline, your body might need more than estrogen locally; you might want to consider a bio-identical estrogen (estradiol) that you take as a dermal patch or gel; it will work on your whole body. 

      You might also want to consider the Mona Lisa laser procedure on the vagina; many women with vaginal dryness are reporting good results with it in the US, the UK and in Europe

       

    • tracy12090
      tracy12090 caroline_59370

      Posted

      I feel for you it does wear you down. It seems like not much is happening but unfortunately it does take time to kick in. It maybe a case of you need something stronger as everyone is different. I was at my wits end before I demanded to see a Specialist and I'm near normal as can be with being careful as everything is so delicate. But if I miss a few doses it all goes pear shaped again very quickly. I would go back to the Dr and see if he will increase the dose temporarily till it starts kicking in. Hope you will see some results soon x

    • donna18720
      donna18720 caroline_59370

      Posted

      Caroline Have you asked for the Norco? You need to force the doctors to actually address the pain.
    • donna18720
      donna18720 KKay

      Posted

      I'm using Estrace USP0.01 1 gram twice a week. I lowered the dose with the ok from my doctor and I think it has helped. I've always been super sensitive to all medications. 

    • donna18720
      donna18720 caroline_59370

      Posted

      I cringe seeing your posts because I was right there not so long ago. I bought everything, my bathroom looked like a science lab. You just have to plod on with the hormones. It's so hard to believe they are doing anything but they are. And if you get some pain meds it allows you to be calmer while it slowly heals you. I think the patch might be a good idea too. 

    • KKay
      KKay donna18720

      Posted

      Thank you Donna, that is helpful.

      I'm slogging on with the Vagifem; I think I'm on day 10 or 11 of the initial two-week nightly dose. Its funny, I thought it was getting better (briefly) with a slight improvement , then the next day its suddenly as bad as ever.

      It's really hellish.

    • donna18720
      donna18720 KKay

      Posted

      I had that happen to me too. I would feel improvement and then it was back. Those flares are getting fewer for me . But I do hate the cream , wish I could get brave enough to swtich to vagifem. 
    • KKay
      KKay donna18720

      Posted

      It's really hellish.

      If it weren't for this patient forum I don't now what I would have done..... 

    • caroline_59370
      caroline_59370 KKay

      Posted

      I'm not sure I can get this on NHS in U.K.? sad I do feel I need something like this though if anyone has any suggestions?' Desperate! Xxx

    • KKay
      KKay caroline_59370

      Posted

      Caroline, do you mean can you get the Norco (painkiller) on the NHS or the Mona Lisa touch laser procedure ?

      Someone on another thread googled it and said it is available privately in the UK. 

    • wendy62425
      wendy62425 KKay

      Posted

      Hang in there ladies..........there is hope with Vagifem to feel normal again.....and you will.  You just need to get through 14 days of estrogen cream then start taking Vagifem 2 times a week......it takes a few weeks until you start to feel normal again and stop suffering from the horrible discomfort we have all felt.  For me it felt like a constant UTI.......it was such a relief when Vagifem started to work... Feeling normal is such a blessing!!

      take good care ladies!

      Wendy

    • KKay
      KKay wendy62425

      Posted

      Thank you Wendy; it is really helpful to have this kind of feedback. I initially expected that Vagifem would work quite fast as lots of sites said things like "Vagifem will sort it out, it works wonders," etc. Now I realise from this thread and others that it can take between a few weeks to a couple of months for some people.

      Like you, my main complaint is a constant UTI - like feeling; burning and a dragging feeling in the pelvic/ bladder area that sometimes flares up into spasms. Just awful. Some days are normal and then it flares up again

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