Guest guest Posted July 10, 2001 Report Share Posted July 10, 2001 Hi Dee Good to be in touch again. And you're quite right about my fireman - he is wonderful (and even caring too which i'm not used to given my usual taste in men!) > You said: " I started on the treatments of Aveeno soaks, baking soda douches and hydrocortisone 2.5% ointment and after about 4 weeks I really started to feel better. " > Is that it? is that all he told you to do? Yes, that's it. The problem with cytolytic vaginosis is that the low pH created by the lactobacilli basically burns away the flesh so the swabs show lots of free nuclei cells ( - feel free to jump in and explain this properly!). Turns out that lumpy discharge was pieces of dead flesh pouring out of me (sorry - hope no-one was eating!) So... the trick is to get the pH up again to get number of lactobacilli back to normal and to stop the progress of the tissue burning. Then the other treatment is to build the damaged flesh. So baking soda for the pH and aveeno/steroids to reduce inflammation and build flesh back. As I've had this 4years then the 2nd bit may take some time. Dr was talking about hormones to help the pH but we agreed that we would only interfere with my hormones if the baking soda didn't work. I know was treated in the same way by Dr for the same condition and is much improved too. I just find it annoying that I can have something for so long only to find that simple treatments would help. The problem is that the sypmtoms are almost identical to chronic yeast but all the antifungal treatments just allow the lactobacilli to grow further. Just goes to show that an accurate diagnosis is essential for these things. I'm now passing the paper I have on the condition around the specialists I have seen in the past in the UK (numerous over 4 years) and none of them have even heard of it. Hope that helps to explain some more love .xx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2001 Report Share Posted July 10, 2001 Hi Thanks for answering about what treatments Dr. did for you, I agree it's just a darn shame that after all those years such a simple treatment would be so beneficial and has been over looked for so long. *sigh*......Talk about the urge to kill eh?. I know we've discussed it at various times on the list and very very few physicians are aware of it. I'm just really so happy it's working for you and glad you've got a great guy in your life! You deserve it, and there isn't anything better that I've found yet! *wink *wink* Take care and continued success in 'all' areas. Hugs Dee~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2001 Report Share Posted July 10, 2001 Hi I'm new. Can you tell me where Dr. is located. Also, what are your symtoms like. Thanks for the info. --- claire.sharp@... wrote: > Hi everyone > > Sorry I haven't posted for a while but I have been > watching all the > posts. Apologies also that this might be quite long! > > Last time I posted I was about to fly to the US to > see Dr . He > was really good but all the procedures left me > really sore and > stitched (biopsies, cystoscopy, vinegar blistering, > internal > ultrasound etc). The flight home to London that > night didn't help > either. > > He diagnosed Cytolytic Vaginosis (mail me if you > want details) which > is an overgrowth of Lactobacilli and very low pH. I > started on the > treatments of Aveeno soaks, baking soda douches and > hydrocortisone > 2.5% ointment and after about 4 weeks I really > started to feel better. > > The urethral pain was almost gone and I only really > felt pain with > walking long distances or sitting for long periods > of time. I then > met a man (he's a fireman so how could I resist!) > and had sex for the > first time in ages. This was just a few days before > I was due to fly > out to Dr again. Sex wasn't too painful - > just a bit tender - > and it didn't burn when he ejaculated, but by the > time I got to the > US I was in agony again. > > Don't know whether it was the flight or sex that > caused the flare but > Dr said he was quite pleased with progress > anyway. The area of > exposed nerve endings has reduced by about one third > already. So came > home and stayed in bed/on the toilet for a week and > then gradually > started to improve again. > > I am now not too bad and haven't had a really bad > attack for almost > two weeks SO..... had sex again this morning and > guess I will know in > a couple of days if that is what affects me so badly > - I'll let you > know. > > If anyone has any questions about this please let me > know. I know > that one day we will all find what we need to be > pain free (even if > it does involve flying half way round the world!)- > just don't give up! > > love > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2001 Report Share Posted July 11, 2001 hi and everyone I just thought I should pop in here about this subject since it happened to me also. After about 8 years of having vestibulitis (only a few of those years finding out that that's what it was), I finally saw Dr. also as you did in December 2000 where he also diagnosed me with cytilitic vaginosis. FINALLY found the source of my vestibulitis. He also put me on the baking soda douches treatment and Aveeno soaks. The Aveeno soaks didn't relieve any pain for me so I quit those, but I continued with the baking soda douche and after seeing him every couple months since December, my last appointment in June was good news because he examined me and said the cytolitic vaginosis was gone now. The bad news is that I'm still in extreme pain because the skin is so damaged from having the condition for so long, so he is having me apply Estrace to the area now 3 times a day to strengthen the tissue and hopefully cure the vestibulitis also now that the main cause is cured. He wants to see me in 8 more weeks from then which would be August but I'm gonna give it till September instead. If he sees some improvement developing from the Estrace then I will continue with that treatment (he is having me continue right now with the baking soda douches as well), but if there is no sign of healing then he will move on to doing surgery. So far the Estrace is not giving any pain releif. I'm still hurting more than ever, but I'm really hoping that with time it will cure me because I really don't want to have to go through the surgery though I will if he decides it will be the best thing for me. I'm happy to know that the treatment for your cytilitic vaginosis worked so quickly for you . Fast healing to all, Update - back from Dr Hi everyoneSorry I haven't posted for a while but I have been watching all theposts. Apologies also that this might be quite long!Last time I posted I was about to fly to the US to see Dr . Hewas really good but all the procedures left me really sore andstitched (biopsies, cystoscopy, vinegar blistering, internalultrasound etc). The flight home to London that night didn't helpeither.He diagnosed Cytolytic Vaginosis (mail me if you want details) whichis an overgrowth of Lactobacilli and very low pH. I started on thetreatments of Aveeno soaks, baking soda douches and hydrocortisone2.5% ointment and after about 4 weeks I really started to feel better.The urethral pain was almost gone and I only really felt pain withwalking long distances or sitting for long periods of time. I thenmet a man (he's a fireman so how could I resist!) and had sex for thefirst time in ages. This was just a few days before I was due to flyout to Dr again. Sex wasn't too painful - just a bit tender -and it didn't burn when he ejaculated, but by the time I got to theUS I was in agony again.Don't know whether it was the flight or sex that caused the flare butDr said he was quite pleased with progress anyway. The area ofexposed nerve endings has reduced by about one third already. So camehome and stayed in bed/on the toilet for a week and then graduallystarted to improve again.I am now not too bad and haven't had a really bad attack for almosttwo weeks SO..... had sex again this morning and guess I will know ina couple of days if that is what affects me so badly - I'll let youknow.If anyone has any questions about this please let me know. I knowthat one day we will all find what we need to be pain free (even ifit does involve flying half way round the world!)- just don't give up!love *****END OF MESSAGE*****-------------------------------------------------To post message: VulvarDisorders To Subscribe: VulvarDisorders-subscribe Unsubscribe: VulvarDisorders-unsubscribe List owner: VulvarDisorders-owner ***** Quote Link to comment Share on other sites More sharing options...
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