Itchy, raw, vulva, nothing seems to
Posted , 79 users are following.
I suffered with vulva problems for 7 months. I promised myself that if I got to the bottom of the problem, I would share the answer with the fellow sufferers on the internet, since I myself spent hours reading in the hope I would find an answer. I hope this helps someone.
My story; 7 months ago I got the itch down there. At first I thought it was the skinny jeans I was wearing, but it didn't go away. So off I went to the chemist to buy canesten cream for thrush along with the pessary. 3 days later and no improvement. By this time I was getting really sore. I thought perhaps it hadn't worked so I used another treatment. Still no joy. So I figured I would see the doc. At my appointment she did not examine me, just took it on trust that I knew I had thrush.....she gave me 14days worth of pessaries!
By day 9 of using them I was raw! So back I went and I was examined. Swabs taken. I was really sore and cracked down there but was prescribed a mild topical steroid. Swabs came back clear. But still I was raw after the cream. In total the GP ended up prescribing 3 different steroid creams none worked. Eventually I paid £200 to see a specialist since the GP felt I had 'a skin problem' down there.
He told me I had eczema and for months I believed him and treated it with steroids, emmolient, avoiding shampoos etc.
but it just wouldn't go away. My symptoms were strange. I'd have days where it was really bad and days where I barely noticed it. I would feel raw when I walked, couldn't wear anything tight, sometimes I could barely where underwear. When I layed down it was fine but the minute I got up in the morning the ache/burn/itch would start.if I got sweaty from stress it would be terrible and I felt so depressed. There was just no explaining it. I spent so much money changing shampoo, underwear etc.
after nearly giving up I decided to go back to the doctor and thank heaven I did. 5 doctors later and a great doctor to whom I'm eternally grateful diagnosed me immediately. I had vulvodynia! I was doubtful at first since I had seen so many doctors with no clue, but she prescribed amitryptiline . Now a month later I'm getting back into leggings and jeans!
dont give up. There are good stories out there, keep going back to the doctor.
4 likes, 231 replies
Jamesbabe liz84514
Posted
XO, Anna
jade2896 Jamesbabe
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Mum2girls liz84514
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Also have you had any back problems or prolapse type issues ? X
stephanie90224 liz84514
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samantha16669 liz84514
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I've had the itch since I was 14 and I'm now 35!
I have seen a grand total of 7 doctors and two of those were at the Women's College Hospital in Toronto (a first class teaching hospital). I have seen several OBGYN's, skin specialists, etc and NONE have been able to diagnose me!
I've heard of Vulvadynia before but I wasn't convinced that I had it until I read your post and researched the drug you've been prescribed.
Needless to say I'm going to see my GP ASAP to see about this drug therapy. I was on topical steroids for over a decade!!!
Thank you for posting this. It's the first time I've ever come across this problem online as my internet searches usually came back with nothing comparable to my symptoms. If this drug therapy works then I may literally owe you my life! I have actually done damage to myself from scratching for so many years and I'll need surgery to repair but that doesn't sound so terrible now I have hope that I can maybe actually begin to heal.
Really, I cannot thank you enough for posting this tonight. It's 4:30 in the morning and I've been up since 3:00am in so much pain from scratching the last few days. Again, THANK YOU!!!
stephanie90224 samantha16669
Posted
Hi there
Im so glad my post helped you. Im a bit further down the path to recovery now a d have some more info to share....
Amitryptiline is a very common way to treat pain in England where I live. It works by deadening the nerve endings that transmit the pain. You can stay on it for life if needs be as its not harmful. 10mg is a very low dose. I think you can go as high as 70mg before it starts working as an anti depressant. It takes up to 8 weeks for you to feel the full benefit so be patient!
Also Im sur you know this but the nurse at my doctors surgery told me when applying cream "down there" you put a pea sized amount on your fingertips and smudge it across the tips to make a line then do a quick wipe ONCE from front to back and thats it. One last thing Im not sure if it has a different name in Canada but applying the oil from evening primrose oil capsules has helped me. Its the closest thing Ive found to being soothed. I dont know how or why it works more than all the creams Ive had from the docs. I dont question it! Im just glad for the relief. Let me know how you get on. Good luck.
Soph3377 liz84514
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Hi Liz,
I know that this is a very old post, but I have read it multiple times over the past 2 years, and thought about responding, but haven't. I hope you do not mind me replying now.
The symptoms you describe are exactly what I am going through everyday. It's so upsetting and distressing. I'm 25 and it's almost ruining my life.
The sore/raw/itching sensation is overwhelming at times. I too am seeing a dermatologist, had a biopsy which showed nothing out of the ordinary. I've tried all the steroid creams (and persevered) to no avail. Some even made the soreness worse! Its terrible at times.
Have taken so many fluconazole tablets (sometimes being prescribed up to 6 months at a time) as thrush has been mentioned multiple times, but it has never helped at all.
I saw a gynaecologist, who told me I have vulvodynia (as sex always hurt too). He convinced me to have a partial vestibulectomy, which I regret, because although sex can now be comfortable, the itching/soreness/redness remains. It effects my everyday life, and the way I am with my boyfriend too. As you say, wearing jeans is a nightmare! I'm so glad you managed to beat this; you just be so pleased!
I have been tested for everything under the sun, and everything always comes back negative (good news I suppose, but then I don't know that's wrong with me?!) it all began when I was 23, and has not gone away. I was completely fine before that.
Was the turning point for you really when you started taking amytripiline? I have previously been on 30mg a night, but didn't notice any changes. Do you have any other advice at all? I'd really appreciate it. I'm struggling so much.
Thank you
stephanie90224 Soph3377
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To cut it very short Ive had the burning/raw pain for about 4 months. Im on 25mg of Amitryptiline which is really helping. I even have 100% pain free days.
Have you tried a topical gel called saginil? Its expensive about 22 pounds on amazon but its specially for vulvodynia symtoms. It really did help me. It didnt cure me completely and took 10 days for me to notice anything but it could be worth a try if you can afford it. Its for external use only. I also found washing with an aqueous cream helped a bit too as did doing simple yoga stretches. I do childs pose, cat-cow, downward facing dog, bent over toe touch, warrior pose and tree pose. I havent got rid of this awful condition completely but Im a lot better than I was at the start of the year. Good luck. I really feel for you as Ive been through something similar and its just horrible.
Nancy53 Soph3377
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Your story sounds identical to mine, but I'm 53 years old. I've been having this horrible burning since I took augmentin five months ago. I didn't realize I had a yeast infection for about six weeks after because I had no discharge, just burning. I was treated but the burning never left. In fact it travelled to my back end as well. All tests are negative, biopsies are negative.So frustrating. I've seen five gynies and a dermotologist and no diagnosis. I keep asking if it's vulvodynia, but they can't seem to answer me. I've been going commando for five months and walking around in lose sweatpants. I have no quality of life right now. Arghhhh!
linda44059 Nancy53
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Nancy53 linda44059
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Hi! I have had two biopsies one for LS and one for LP. Vaginal atrophy wasnt mentioned. I am 53 and on an estrodial patch. I have what looks like a rash on the inside opening of my V. Asked the gynecologist if he thought I had AV and he said no, I was still "moist." I have been prescribed estrogen cream, but it makes me more red . I do have constant burning in both areas. It makes it very difficult to sit or walk for long. My anal pain is definitely not muscular.
gab53715 Soph3377
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Hi Sophie,
I joined this forum just so I could reply to you because your story sounds exactly the same as mine. I'm also 25 and have had chronic itching, burning, soreness for two years now. It all started with the worst bought of cistitus I've ever experienced - I was peeing pure blood and was rushed to A&E but although I was given four sets of antibiotics over the course of nearly two months it was never correctly tested for antibiotic sensitivity (until the final doctor tested it and prescribed me with nitrofuintoin - I suggest everyone ask for this as a first line treatment, id still have my healthy vagina if i had been given it) anyway following on from that I suffered horrific thrush which I assumed had to be herpes because I couldn't walk, I now know it's because I had taken so many antibiotics (I'd been on really strong ones for a month before the bladder infection for an operation) anyway, I saw various doctors and they gave me enough anti fungal medication to open up my own shop, I also spent hours, days even researching ways to get rid of chronic thrush as by this point I had convinced myself it would never go. I ate a pot of natural yoghurt a day, used countless probiotics, took anti fungal supplements ect ect. Anything that gets rid of thrush - you name it I did it. After a few months I couldn't understand how it hadn't gone but somewhere along the line my tests started coming back negative. No thrush no stds nothing, yet I still Had the horrible raw, sore, itchyness. I could not understand what was happening, so I carried on using the thrush treatments because some doctors told me that sometimes it doesn't show up on tests so to just keep taking the oral ones anyway. By this point I was crying nearly every day, I could only wear skirts I was so so uncomfortable walking anywhere for long periods was out of the question I couldn't wear pants. After trawling forums (I've honestly read every single one on the internet) I came across (and I am forever greatful) someone who's situation sounded EXACTLY like mine. Basically it's a condition called Cytolytic Vaginosis. It's quite rare - doctors and even gps won't have heard of it so you need to make sure you go to a specialist asap. Even when I fully knew what I had and went in to see people and explained that this sounded like what I had they always dismissed me and some told me that there was no such thing. I was lucky enough to find a CV specialist on another forum- went to see him and was diagnosed with one of the worst cases he had ever seen. Prior to this I had been told I had vulvodynia - the woman gave me the antidepressants there and then along with a numbing cream and just told me she was so sorry for the diagnosis. Do not assume it's vulvodynia until you have had this checked - I knew in my heart it wasn't and I was right. In sure you'll google it but in short CV is when there is an overgrowth of lactobacillus which is deemed to be the good normal healthy bacteria that make up your vaginal flora. But when you consume antifungals for a really long time it can unbalance things and can cause an overgrowth - these bacteria produce lactic acid which quite literally burns the inside walls of your vagina (hence the painful sex) and causes it to come out in an acidic discharge which literally burns your skin. I used to only ever feel ok during my period - this is because blood is alkaline so it stops the lacto from overgrowing. I could be wrong and I know for me the main culprit was the fact that I took so many probiotics alongside the anti fungals but I read so many of these formus and I always think about how maybe if I wrote my story it could help someone, so today I decided to do it. The treatment for it is with bicarb douches (I use an alkaline live called preseed mixed with a bit of bicarb) although I have to say I've had very little success - it's been two years and while I did manage to get to a point where I was only having to treat it every three nights, I was given some antibiotics a few months ago to clear a sinus infection and sadly it threw my body into haywire all over again so now I've got the CV and really bad thrush. Lol life is honestly the worst. All I'm saying is you need to rule other things out. Think about your symptoms really carefully, I had excessive discharge too but never really even considered it to be anything until after I was diagnosed. Xxxx
louise53858 liz84514
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I am so so sorry we are all suffering from this disease. I have almost gone batty to figure out what works and what doesn't. I have been on 3 different steroid ointments ranging from moderatly strong to super strong. The super strong was prescribed by my dermatologist. She said the pain after appling lasted " just a second" . I only took it once and the pain has lasted days!! I am fairly close to UCLA in Westwood, CA. And finally found a dr. who specializes in Vulvadynia. Her first available is in August, 2017 which is in 3 months from now.
I have searched the internet for some answers for the last 9 months and so glad to find others reaching out.
This blog has given me hope
sherbet27321 liz84514
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Hi All. I've just registered with this site especially to share my own story. I too have been having problems with my vulva, and after a year my symptoms have started to calm down in the last couple of weeks and I wanted to share what I have found so that it might help someone else. My vulva has been really sore and raw and really really itchy and I also felt like a had ants crawling around down there! Tests didn't show anything not even thrush. I have seen my gp countless times also visited a gynaecologist and a dermatologist but still nothing. After using many types of cream including canisten, corticosteriod, two different strength steroids creams I was still no better off. I then tried ReplenseMD moisturiser and everything seems to be much happier down there!! My doctor prescribed it and I wasn't sure at first because I was reluctant to try it just in case it made my symptoms even worse but then I realised it was kill or cure really so I went for it and I am so glad I tried it. My bits feel 99% better than it all did and I can actually relax a bit. I always had the feeling that the problem was something to do with my own vaginal fluids had maybe changed and that was what was causing the problem. I inserted the ReplensMD and I started to feel a difference within a few days. If you are at your wits end then maybe it might be worth a try for you. I think you can buy it over the counter (I'm in England). I really hope this helps someone else.
cath38279 sherbet27321
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sherbet27321 cath38279
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Yes it was, it was itchy pretty much everywhere and very sore. The ReplensMD took the soreness and feeling of ants crawling away but I did have to use a little bit of steroid cream on a persistent itch or two that I had. The replensMD is a little messy because when you insert it it starts to come out like your own secretions but when that happens it helps the skin on your vulva. My skin feels a lot more normal down there now, it's not completely perfect but it's so much better.
cath38279 sherbet27321
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Thanks so much - I'm going to give this a go. Have had this issue for three years!
sherbet27321 cath38279
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I really hope it helps you. It's an awful thing to have to put up with. Just another note....when I got the replens I just put a little on my finger and wiped it around the area as I was reluctant to insert it at first just in case I couldn't tolerate it. After wiping on a small amount I realised that it wasn't causing me any grief and that's when I inserted it. I would advise wearing some underwear too as it can be a little messy! Good luck with trying! I'm not sure if replens do other products but the name of the one I have is ReplensMD Moisturiser.
sherbet27321 cath38279
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Hi Cath.
Have you tried the Replens? How have you got on if you have?
Hopefully you've had some improvement
Nancy53 sherbet27321
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Do you have any redness on the inside?
I think all the gynecologists and dermos I have seen think if I have a red type rash on the inside it can't be vulvodynia. They can't diagnose anything else though. Everything comes up negative.
Thanks.
sherbet27321 Nancy53
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Hi Nancy.
To my knowledge I didn't have a rash. I checked on and off and had a gp check it and a gynecologist and none of us could see a rash. My dermatologist said it was probably dermatitis as I get it on other parts of my body but I don't think it was dermatitis on my bits at all. In fact the creams he gave me did nothing whatsoever. The steroid creams prescribed by my gp worked nicely until I stopped using them and the itching, rawness and soreness started again! That's when my gp prescribed the replensmd and it has worked very well. I'm happy to help if you'd like to ask anything else
Sherbet x