I have Vulvadynia, please help

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Hi I am new to this forum, and have recently been diagnosed with Vulvadynia and feeling so depressed and worried it will never ever go, I feel like my life is just on hold.  It started on 22 November and has been constant pain since then.  Amy advice would be appreciated

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  • Posted

    Hi Linda,

    What kind of pain are you experiencing?

    You might want to look into pelvic floor therapy. It's not commonly known but it basically is physical therapy for you pelvis, pelvic floor muscles (inside) and surrounding areas like inner thigh, abs and buttocks. I am doing it now and it is helping. I have pain in my tailbone and tight pelvic floor muscles which can cause intercourse to not be fun. Let me know what you think

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    • Posted

      Hi Morgan

      i am trying pelvic floor exercises not sure I am doing them right, just holding everything in for count of 10 then relaxing for 10, doing it 4 times a day, but only just started it 2 days ago.  The pain is a bit like cystitis but it's not that. It's a stinging pain around all areas below, including anus area.  I saw a private gynaecologist last week as the wait on NHS was 2 months and I am getting so depressed with it.  She diagnosed Vulvadynia and said its a hard ailment to get rid of, they don't even know what causes it,but the usual treatment is a course of anti depressants, which I started 4 days ago, and also local HRT, Vagifem and also YES lubricants daily, as well as lots of water to drink, and no soaps in bath or shower, cotton underwear.  I just want it to go, it's impacting on my whole life at the moment as its painful to sit for long, I have bought a donut cushion, with hole in the middle, and also painful to walk very far. 😢

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  • Posted

    dear Linda.... It is a long road to finding what will work for you. You can try using a bidet right away to keep vulva clear of any irritants.  Or use a glass of warm water and keep rinsing continually after you wee.  Do NOT bathe in any bubble bath, any type of soap except Cetaphil, Basis or Aveeno. No bubbles! Keep the area clean and dry.  I bring extra underwear with me every day and I change about halfway through the day,. Do not wear pantyhose if you can help it. It does not allow air flow at all.  I just bought boy shorts which are so much more comfortable! They also allow much better air flow.  You can try coconut oil after every wee.  It keeps the skin soft so it doesnt burn as much. I'm allergic to it, so try it on your inner leg first!  Do not use anything inside the vagina.  It can promote infections.  No douches, etc.   If you use regular clothes detergent switch to a non toxic one immediately.  I use Dreft Stage 1.  If you enter vulvodynia in the search box at top of page, another page will come up of lots of info about vulvodynia. It's very helpful!  Take care.  If I think of anymore info I'll post it here. Take care. 

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    • Posted

      Thanks Debi, yes I am washing after using the loo every time.  No bubble baths etc.  Thanks for the link to Vagikool too, they sound really good, will think of ordering that, as it may help cooling it all down.  Are you fully recovered now?
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    • Posted

      Hi Debi, sorry to hear you still suffer.  My job entails sitting at a computer all day, but at the moment I can't face going into an office all day so am able to work from home.  I have a cushion with a hole in the middle, sit on that for about half hour max, then lay down for half hour, that's all I can manage at the moment work wise.  I have just started doing the yoga positions that Suki recommended, happy baby pose and knees to chest pose, and will do them every day.  Are you able to get out and about, to work, shopping etc?  I feel I can only get out for the odd hour when having a good day, otherwise I am confined to the house most days, haven't driven car since November.  I also like to read, which helps in taking my mind off the pain sometimes, but I lay out on sofa to read.  

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    • Posted

      Hi Linda.. I'm somewhat better since i saw my pelvic PT.  If I didn't keep getting infections I would be so much better!  Yes I too read on the sofa lying flat.  I do volunteer work twice a week which sometimes aggravates it.  But I don't want to give up everything!  I do have a cushion... but there is no hole in the middle.. Its just a cushion.  It helps some.  I'm grateful its not something worse, but who wants to have pain? especially down there!  But I keep trudging on.    Thanks for responding.  let me know how you are.  smile

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  • Posted

    HI Linda... It's me again.  I've had vulvodynia now for 4 years. I've had pelvic PT and it has helped greatly. Here is a website that might help you; https://patient.info/doctor/vulvodynia-pro

    And yes I too feel depressed and worried. It's no fun having pain down there. My life is partly on hold as somedays I'm having pain.  I use a couple different things to help me when Im at home.  Ice packs and Vagikool.  The Vagikool is smaller ice packs that fit into your underwear. No one can see them.   Also try warm baths, relaxing music, meditation, whatever helps you relax.  The more nervous we get, the worse the pain is.  Do you have any pain killers?  Hope something here helps you. 

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    • Posted

      Hi Debi, gosh 4 years is a very long time, I hope I don't have it that long, even a year scares me. It's reassuring that some people have managed to get over it completely though.  I do have warm baths which seem to help a bit.  Meditation and yoga are also helpful.  I agree it does seem to increase when anxious or nervous, suppose it then inflames the nerves more too.  I was taking Zapain painkillers fora couple of weeks at the very beginning, then on to Anadin as dont want to rely on strong painkillers for too long.  I now only take some when it's very bad.  I am seeing an acupuncturist tomorrow for a 15 free consultation and will book something for the following week.  I am hoping this will help.  Have you seen an acupuncturist at all?  Is yours getting easier over the 4 years you have had it?

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