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
HK73037 liz84514
Posted
Hi Liz - I'm sorry to be bothering you again. I'm at a loss yet again as the chiropractor sessions do not seem to be helping me at all (I've had 10 sessions over 3 weeks now). Did your sessions ever go up in time or was it always about a 10 minute quick manipulation of the lower spine? I'm at a loss and debating taking the amitryptiline - did you have any symptoms when you took this med (besides the heart issues) and did you have any withrdrawal issues when you stopped? Did you symptoms return immediately after you stopped taking the medicine? Thank you so much for your answers, I appreciate your time greately and hope you're feeling well at this time.
liz84514 HK73037
Posted
Hi
Sorry you are still suffering. My sessions lasted a lot longer and were not only focused on my back. I started off having them every week and now only every 8 weeks. Have you tried doing some gentle cores strength exercises. Even just standing on one leg for a minute every day will support your back more fully. 10 sessions in three weeks sounds kinda tough going to me. Surely the whole point is that muscles around the pelvis are in spasm and just need gentle encouragement to relax?
With the amytriptyline it did work. I found it gave me a welcome break and temporarily gave me my life back. The main problem was that I had to keep increasing the dose as it would stop being effective. In the end I was taking 80mg which is a stupidly high dose. Stopping it was not a problem. Maybe you could give it a go and when you are on it, start off doing some yoga/Pilates exercises to strengthen your core. Maybe then when you come off it you'll be fine?
I wish I could offer you more help 😞
HK73037 liz84514
Posted
Liz, thank you so much for taking the time to respond to me again. Your input is extremely valuable to me. I went to see another chiropractor the other day and although he does not do "body stress relief" he told me this issue can potentially be due to the muscles in and around my pelvis being too tight/spasming so he has given me some exercises to strenghten those muscles and in that way give relief to my pelvic muscles. So I think (pray) I'm on the right track. It does not look like there is anyone in my area that does body stress relief - can you give me an idea what the typical session is like? Is it an all over body massage or exercises or stretching? How long is each session? Thank you again.
liz84514 HK73037
Posted
Just Google body stress release
HK73037 liz84514
Posted
liz84514 HK73037
Posted
Keep looking for the answer. Some day you will look back and remember what a nightmare this all was. There's just no way you'll have to live with this forever. Keep doing all the things like eating well, gentle exercise, don't let soaps and shampoo get down there, forget fabric conditioner and keep working on your back. You WILL get better xxx
Let me know when you do
HK73037 liz84514
Posted
nikem2015 HK73037
Posted
Hi, have you tried a woman's physiotherapist? I've been seeing one since April and I have had improvement - it's been slow and as she does lots of internal pysio, it's not been the most comfortable experience but it's definitely helping me. Also try reading healing pelvic pain by Amy Stein, it really does all add up that a lot of the time it's nerve and muscle damage xx
HK73037 nikem2015
Posted
Hi - yes I've been to a pelvic floor therapist. So far I've had 9 sessions, with no improvement. I guess this will take much longer to fix. How often do you go? How long after your symptoms started did you start the treatment and when did you begin seeing results? Thanks for your input
nikem2015 HK73037
Posted
Hi, mine all started in July 2015 with what felt like cystitis, after 4 months of antibiotics I figured out it probably wasn't cystitis so started to investigate. I saw a pain consultant in January who is convinced it's nerve damage so I'm on pregablin to help with this and I started pysio in April. I went weekly for around 14/16 weeks and I now go every 4 weeks. My scars from child birth are very sore when pysio works on them so we are slowly trying to break scar tissue down and stretch sensitive tight muscles - also in my back etc. It's a long slow process and I think 3 factors contribute for me - nerves, muscles and hormones. The soreness is worse when I'm due on my period so hormones definitely and this all started 3 months after I changed my contraceptive pill xx
MiniMule liz84514
Posted
Hi Liz. Thank u so much for starting this board. I was up all night reading your symptoms and mine are identical. I thought it was yeast for a while ( so did dr ). Ive been to pelvic physical therapy, gyno, pelvic specialist and got mri. THe MRI did show some minor stress reaction and some cartilege tears but ive always had bad hips that im not sure thats part of it. I also found some relief from amitritiline temporarily and desonide ( anti inflammatory cream ).. Honestly doing down their looks bad its just majorly sensitive ( inner thighs sometimes, vagina, anus and in between and crazy sensitive like almost ticklish ). Anyway, this low back thing had be intrigued. Did it completely cure your symptoms when u saw someone who worked on your back? WHen i look up the pudental nerve, i feel like all my irritation is where it goes however its not pain. Please let me know if u have any recommendations the the body stress release thing.
liz84514 MiniMule
Posted
HI yes, I never really had pain as such, just a constant irritation and awareness. Sometimes it would be a bit like a cheese grater in my knickers others just a sensation of crawling.
Sorting my back and strengthening my core with exercise has taken nearly a year but I'd say yes, I'm 99% vulvodynia free. Occasionally if I sit stupidly on the sofa and don't take care of my posture i can notice it. Nothing much though. My advice would be to combine gentle physio with daily core strength exercises and be patient x
leo79 liz84514
Posted
I'm using witch hazel which causes releif from itching.
leo79
Posted
jane_26809 liz84514
Posted
Well thank God you shared your problem....I've too been back and forth with similar symptoms and it's getting me down. I have a name to give to my doctor so they can either confirm or rule it out. My only problem us I can't take amitriptyline...but I'm sure there is an away of meds that will work just as well. Cheer's lliz84514