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
katie42541 liz84514
Posted
Soph3377 liz84514
Posted
I know that this post is very old, but I would very much appreciate a reply
I’m tearing my hair out with this.
I am 26, and was diagnosed with vulvodynia 3 years ago after suffering exactly as you describe; a raw, tender feeling down there, which largely goes when I lay or sit down, and a crazy vulvodynia itch. The itching for me is the worst. After trying various steroid creams and tricyclic antidepressants prescribed by my dermatologist and gynaecologist with no success, I ended up having a partial vestibulectomy on the nhs, after being recommended for it by my gynaecologist at the time. It’s probably the biggest regret of my life, as it has left me looking very different (messy really) down there, and 2 years on from the op, it’s even redder and itchier down there than ever. I am also now seemingly prone to thrush, so have been on a long term course of fluconazole for this. This situation upsets me daily, and makes life difficult. I have a very supportive boyfriend, however I feel guilty as often this makes me very down. The only thing that the op has improved for me is I don’t really experience painful sex now, which I did beforehand. However I am extreamly sore afterwards due to the red, raw and itchy labia skin.
Having read your story above with great interest, what you describe is EXACTLY the symptoms I continue to suffer. It’s not really pain, it’s scratchy, sore and raw, with for me, intense itching. I have not had thrush now for months (confirmed by swabs by my dermatologist) but the itching is similar to this. I have had a full sti screening, which is clear (I have been with the same partner so was not worried, but all this itching makes me very anxious) and have had 2 vulval biopsies now, neither of which have showed anything sinister other than mild eczema. The itching comes and goes throughout the day, and feels a lot better at work when I’m sat down for long periods, but flares after I move around. It’s like a tingling, and I just have to itch it, which probably only worsens the skins condition. It’s very hard to live with.
Please may you answer a few questions I have? I would appreciated it so much!!!
- Have you been told that itching can be a symptom of vulvodynia, as I had previously believed that it is not.
- I am currently taking 10mg noratrytiline (a low dose) however have not noticed any improvement. What dose of amytriptine are/were you on, and for how long before you noticed a reduction in symptoms?
- Have you found that any topical creams help. So far everything I have been described seems to excaccebate the itching.
- I too struggle with tight clothing such as jeans, can you now wear them again without my trouble?
- did you make any adjustments to your diet?
- Can you offer any other hints/tips for me please?
Any advice from anyone else on this site would be fantastic and greatly appreciated. I am feeling very desperate, and do not want vulvodynia/itching to consume any more years of my life.
Thank you,
Sophie
becky1211 Soph3377
Posted
Hi, I may not have a solution for you but wanted to mention a few things I learned. I have been doing better lately much in part to using an estrogen cream called estrace combined with periodically using boric acid capsules.
I also used steroid creams and they initially gave me some relief but what happens then is that it thins out your tissue in that area. So in the short term it seems to be helping, but in the long term it makes the problem worse because with the thinner tissue it brings the nerves closer to the surface so any sort of irritation that normally would not be noted is now immediately at your nerve endings.
Estrogen will plump up the tissue so that is why I started that. I NEVER use steroid creams there anymore.
I am not sure if I had a bacterial thing going at a low level also but always noted sort of a smell on my undies that seemed like I was leaking urine or something but I wasn't. I had no discharge so I never suspected that. Well in desperation I have probably tried everything, so one time I tried using boric acid capsules which I got from amazon. You put the capsule inside at night and it dissolves and will take care of any kind of yeast or bacterial issues. It tends to give me a watery discharge but what comes out is so soothing, and the interesting thing I noted is that the smell is gone for the first time in years. They recommend using the capsules morning and night for a period of time but I use them at night once or twice a week. If I notices the itching coming back I pop one in that night. I think when you have been going through this chronically for so long it takes a long time to heal.
The estrogen cream I got from my doctor and the directions say to use 2 grams with an applicator every other night or maybe its twice a week. I have tried that and to me 2 grams just results in a lot of it being expelled in the morning, so instead I use 1 gram every other night. The cream is called Estrace and I have been using it for awhile now regularly along with the boric acid and it's the first time in years that I feel like it's nearly under control. My tissue down there has plumped up visibly too. I am hopeful that in time I may not need to do this as frequently but for now I am keeping it up. Also for me I am post menopausal so I probably will not be able to completely stop the estrogen without everything thinning out down there.
The other thing that I have used on occasion which does seem to help some is lidocaine cream like aspercreme. I read someone either on this forum or another saying she used lidocaine cream at night and the estrace cream in the morning. She was just rubbing it on her vulva. I tried that but found that using the applicator for the estrogen cream would allow it to come out slowly where rubbing it on the vulva most of it was wiped away after the first time I went to the bathroom.
I think this started for me after some kind of weird viral thing where I ended up with a horrible rash there and everywhere else. My doctor thought it was yeast and treated me with diflucan oral pills and I guess that was not the answer because my body went on a full on allergic type thing with three different types of rashes all over my body. What finally resolved that was oral steroids for quite some time. Then I was using the hydrocortisone cream every so often as it would flare up. LIke I said that worked for awhile but years later I was in bad shape from it. I feel like with the boric acid caps and the estrace I am finally healing.
I am so sorry you are going through this so young. I am almost 60, so I am used to some discomfort but it's so horrible to be dealing with that at your age. I hope you find some relief and I am sorry that the surgery turned out to be a mistake for you. I wonder if the estrogen cream might plump things up in that area and maybe look more normal. I read about that surgery and I wondered how it would be after. I also understand being desperate to try anything. I had a hysterectomy at age 40 that left me with disabling anxiety so I understand living with regret. I had the surgery because of severe pelvic pain but I would rather have pelvic pain that anxiety. We all have something we deal with but I am hopeful yours can be resolved somewhat.
take care
Becky
Ay_vee liz84514
Posted
I have internal vaginal itching for 2 years. Been to every doctor under the sun. No diagnosis. Don’t use detergent. Do all recommendations. Feel suicidal. Can’t function. Who is your specialist
val36016 liz84514
Posted
I had the same symptoms. Also sore patches in my mouth & a rash on my hands. Each symptom was treated separately by the doctors. I saw specialists & even a Harley Street specialist. After a long time suffering & complaining a lady Iranian specialist saw me at hospital. She was marvellous. She told me all my symptoms were related.
I had Lichen Planus. It attacks the soft tissue. I was given steroid cream for my vulva & also for hands. For my mouth I was given Prednisone to rinse & hold in my mouth. That episode lasted nearly 6 months & that was 20 years ago. Recently I’ve got a flare up down below & have been given Eumovate so hope this will get rid of it. I also take amitriptolyn for my Fibromyalgia. Someone said they were given that to help. Good luck.
jeanine83276 liz84514
Posted
Hi Liz, I am in exactly the same situation. I have seen gynaecologist and had a biopsy of my vagina, all came back normal. I am now being referred to have dermatology tests bu t have to wait 21 weeks. Some days I feel like I could scream. I saw my lady doctor last week and because I was emotional with the frustration she wanted me to speak to a phsycologist as this my 'help' me. I have mentioned Vulvadynia to her, but she was non committing. I do already take Amitryptolin but my symptoms persist. I have a constant red inflamed skin in the vulva area and nothing takes the pain or burn away. I have tried prescribed Clobervate steroid cream, which does not work. I have read thar Evening Primrose oil applied works, I take one each day and use the oil to soothe the area, but so far no change after taking for one week. I am now being referred to another gynaecologist in Leeds which is 70 miles away and will probably have to wait another 5 months. I just wish someone could give me an answer!
djacks liz84514
Posted
jeanine83276 liz84514
Posted
regards
Jeanine