Page 2 | Does anyone suffer from vulval pain?

Ouchbloodyouch · 2015-01-07T21:45:49+00:00

I've had it for 21 years. Maybe for 20 of those it was Once a year or two years. Now its maybe a week out of every 4 where I am pain free. I am in despair. I am under have a consultant appointment soon and have just started amytryptiline (sp ) I've posted this in relationships as this is my regular home. Can anyone say if this will get better?

SitOnYourDressJoyce · 08/01/2015 13:22

Coco... I don't know if this fits with the LS profile but internally there's no dryness as such. It's externally and what used to be fine is now so dry and awful. This has happened in a matter of months.

SitOnYourDressJoyce · 08/01/2015 13:23

I spent a fortune on organic tampons/liners etc- no difference.

minipie · 08/01/2015 14:13

Bolshy that's interesting about the Pill. I've been mostly pain free for about 3 years now and that does coincide with when I've been off the pill - I hadn't made the connection. I've always worn cotton pants and used non bio liquid and avoided toiletries in the area so coming off the Pill is actually the biggest change. Had planned to go back on the pill after current pregnancy but maybe not!

box yours sounds different to mine - I've never had pain inside the vagina, or pain when sitting down, it's all been the labial skin and at the very entrance to the vagina. Hmm.

shouldnthavesaid · 08/01/2015 15:22

I have vulval/vaginal pain - have had a good amount of skin removed (labiaplasty and reduction of clitoral hood) which helped a lot, but still have pain internally all the time. Don't know what to about it, so am trying to ignore it. 24 this summer and have never had sex though.

shouldnthavesaid · 08/01/2015 15:23

I also have sebaceous cysts - six or seven that are all around the clitoral area. No one has ever been able to provide an answer for them short of trying to ignore them :(

Bolshybookworm · 08/01/2015 15:44

I don't find Natracare vastly more expensive than normal Saton (bearing in mind it's a long time since I've bought normal and I always bought branded rather than own-brand). The pads in particular did make a difference for me though- I think because Always are quite plasticky, they made me a bit sweaty which made things worse. I had to give up using tampons completely at one stage but have been ok with the Natracare ones.
By the same token, I can't wear knickers that have elastane in them- even the 5% ones make me feel thrushy iykwim. Think I have very sensitive vulval skin!

I get the feeling there are lots of causes of vulval pain which is partly why treating it can be so tough (and because no-one bothers researching it because it's "woman's problems"). You have to try everything and hope that something works. It's incredibly frustrating.

SitOnYourDressJoyce · 08/01/2015 17:13

Bolshy interesting about Always because DH bought me some last summer and they were perfumed -gross- and I had a huge flare up since then. Isn't it rubbish!

SitOnYourDressJoyce · 08/01/2015 17:16

Mini pie my symptoms sounds Very similar to yours. The entrance to the vagina then a bit of the perineum is the most sore. It stings so much after I urinate :-( ditto folds etc. is there itching too? I find itching/dry/stinging/burning. No sensitive skin anywhere else. Odd.

GettingFiggyWithIt · 08/01/2015 17:20

Vulval pain when menstruating yes.
Feels like all of me is throbbing. And not in a good way.
Wishing you decent pain relief OP and knowledge that you are not alone.

minipie · 08/01/2015 17:44

Yup, I get itching too, and no sensitive skin anywhere else.

Original poster

Ouchbloodyouch · 08/01/2015 20:23

Its been lovely to read your replies I have no one to talk to in real life its not something you bring up.. my best friend despite me EXPLAINING all the procedures and negative STI tests said 'are you sure its not thrush or an STI?'

OP posts:

SelfLoathing · 08/01/2015 22:22

I'd never heard of Lichen sclerosus before reading this thread but googled it and found this link below. I thought I'd post it because it sounds like it's a condition that could do with being made more common knowledge amongst women.

www.allthingsvagina.com/lichen-sclerosus-et-atrophicus-lsea-vaginal-plaques/

Whilst googling lichen sclerosus I found this which may be of use to you Ouchbloodyouch
www.tldp.com/issue/166/166vulvo.htm

FuckOffGerbil · 08/01/2015 22:27

I've had pain (but only when pregnant) but it's the actual vulva not skin. Sorry you're going through this ouchy

GothMummy · 14/01/2015 01:15

I have had pain for years and been given lidocaine by the GP but was today diagnosed with advanced lichen sclerosus and vaginal atrophy. Im 37. It was a shock as I thought it was something that post menopausal women had. I must have had it for years apparently :(

GothMummy · 14/01/2015 01:18

I have had pain for years and been given lidocaine by the GP but was today diagnosed with advanced lichen sclerosus and vaginal atrophy. Im 37. It was a shock as I thought it was something that post menopausal women had. I must have had it for years apparently :(

GothMummy · 14/01/2015 01:19

I have had pain for years and been given lidocaine by the GP but was today diagnosed with advanced lichen sclerosus and vaginal atrophy. Im 37. It was a shock as I thought it was something that post menopausal women had. I must have had it for years apparently :(

Bue · 20/01/2015 11:57

I have provoked vestibulodynia. It has vastly improved but it used to cut like knives when I tried to have sex (now only painful if not sufficiently, ahem, prepared down there ) and I used to get terrible vulval and rectal itching. I still get that burning, stinging feeling of cystitis on urination at times. Vulval pain is an awful, lonely problem to have.

Amytriptyline and Gabapentin did nothing for me. I think what helped was a combo of Lidocaine, self-directed pelvic floor therapy and massage and spontaneous improvement of the condition. Also possibly coming off the Pill. I never use any scented products of any kind.

One top suggestion I have for those who are able to tolerate sex is Yes lubricant. They make both an oil and a water based one. Especially when used together they can make sex MUCH less uncomfortable and much more enjoyable - finding this product was a real turning point for me.

Chuf · 01/03/2015 23:25

Hi I have this, mine started after childbirth and six months down the line my life is unbearable pain and debilitation. I have tried a good going dose of amitriptyline and the side effects did not bother me as it has had a dulling effect on the pain. Pelvic floor relaxation and trigger point therapy done by a good women's physio helped also and I am due to start this again after a break. My situation was triggered by trauma and is the unprovoked kind. I now also have anal/rectal pain, and more internal pains as it seems larger pelvic nerves are involved. I am due to have a nerve block of the pudendal nerve to see if that helps. I am living in hope that I can get back to the person I once was and start being a mum as so far I have not been my sons main carer due to the effects of my condition. I also have urinary frequency, mild incontinence and a crap pelvic floor. I had a relatively straightforward childbirth but it was v quick and I had several tears. It's likely this trauma triggered some nerve irritation that caused my condition. Anyway hope any of this helps. If you are near London get your gp to refer you to professor Reid at the royal london. Means you avoid any docs that don't have experience in this condition. Prof Reid will look at the potential multiple causes for your condition and point you in the right direction. Vulval pain society also useful for info xx