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[Nico]

I've had pain and redness at entrance to vagina for 9 months, VA diagnosis, been on nightly topical oestrogen inside and out for around that long but it's not getting better. In fact it's got worse in the last few days - I think the culprit might be some white cotton pants I bought and wore without washing them first. But that was just a few hours and now 4 days later with no pants on at all it's still raging so who knows. Pain is there all the time i.e. unprovoked.

Been seeing a private gynae for a couple of months. The skin keeps splitting (despite no sex for 7 months, topical oestro and moisturising) and she says there's a loss of elasticity there and scar tissue. She's referred me for pelvic physio as my pelvic floor is tight, my first session is this week. I think the plan is that physio will try to release pelvic floor and massage the scar tissue or get things to a point where I can massage it, then the skin gets elasticity back. Not sure. I think this might be some sort of allergy/dermatitis as well as the VA. Or it might just be VA. No one seems to know.

I was offered amitriptyline for the pain and was initially reluctant because it's only potentially solving half the problem - she said it won't help with the redness and splitting. I've been on it previously for sleep and it did nothing for my migraines so am not sure plus it made me horribly constipated. But I think I am now at the point where I will try anything to reduce the pain as it's really affecting my mental health and quality of life - I can't work, can't have sex, reluctant to go out much and have to be careful what I wear, wondering about my diet and am constantly thinking about it. I was feeling suicidal a few nights ago.

Has anyone tried pelvic floor physio and/or amitriptyline (or some other pain meds) for these symptoms? I'm trying to get a GP appointment to discuss pain relief options but may have to fork out for a phone call with the gynae. I don't really have much faith in either GP or gynae though.

[Flossieteacake]

Hello Nico and welcome to the forum. I am so sorry your VA is so bad. Which topical oestrogen are you using and do you use it daily? I use Ovestin daily and some days I need to use it twice a day. I really sympathise as I can relate to feeling VA is ruining your life.

A few tips I have picked up is to only shower, not have baths. I apply emollient to the vulva before my shower, wash it off in the shower and then reapply some more after to act as a barrier. I actually wash my whole body in emollient cream now. I take seabuckthorn capsules to help with the dryness. I buy these from Holland & Barrat and take two a day. I had to totally give up caffeine as it was making me need to wee more.

Have you had your skin checked for Lichen sclerosis? I also get eczema inside and outside the vulva so I understand what it is like to have more things going on.

The pelvic floor physio is well worth trying but from what I have read on here it is best to go private for this if you can afford to.

[Joaniepat]

What Flossie says. Plus, have you seen a vulva dermatologist, and has your gynaecologist considered lichen sclerosis or other vulval conditions? These need to be ruled in or out by a specialist.
For unprovoked vulvodynia I am finding a PF physio very helpful. I was offered amitriptyline but declined, decing to try physio first. However, if you have splitting skin, you need to get to the root cause of that.
JP x

[Nico]

Hello flossieteacake and joaniepat

I am on Vagifem inside and Blissel outside daily. The gynae switched me to Blissel about a month ago, prior to that I was on Ovestin. I had wondered whether I was sensitive to something in the Ovestin which was the reason for the switch but I am not doing any better with Blissel (plus I think it's a bit weaker).

I am also on Evorel 50 patches and may ask for them to be increased as I'm not convinced they are doing much. I am very tired but I know pain can be really debilitating.

I asked the gynae about lichen sclerosus as one of the GPs I saw thought it might be, but she thinks not because I am not itchy. I am in a very helpful LS facebook group and I know it's notoriously difficult to get a diagnosis though.

Yes, am with you re showers vs baths. I wash my whole body with Epaderm, and wash my face at the basin when I'm dressed. I did have some urinary problems a while ago and stopped caffeine and beer and any sugary drinks and started a probiotic. I did have a flare up a few days ago but I think it was because I was extremely upset about the pain and it seems to have quietened down now.

The weird thing is, I'm not dry inside. I was, but after about 5 months on the vagifem I noticed it all seemed quite normal inside. It's the outside that's dry and cracking in spite of various moisturisers, currently just using Epaderm.

[Nico]

I am hopeful about the physio - I am definitely tight and I think I am clenching too so if I can learn to relax it, it might lessen the pain a bit.

It does sound like I need to try and find a vulva dermatologist. I am waiting on an NHS referral to gynae and hoped to get to see one via that route but they can't see me until at least June (was referred in Nov).

[Flossieteacake]

It is very positive you no longer feel dry inside. I would say that shows the treatment is working. I am glad you have been checked out for LS. I do not think it always presents as itchy skin but luckily you are in a group who know all about it.

Bissel is milder then Ovesin but if either one works for you then it does not matter which one you use. Are you using any vaginal moisturiser too? Yes and Sylk are nice and gentle. I mix a little Ovestin with some vaginal moisturiser and then apply it to the outer area rather then just putting the Ovestin on.

Are you on Evorel 50 along with progesterone?

So sorry you had a bad flare. I still get them too and they really do ruin the whole day.

[Nico]

I have been using Yes VM on the outside but I stopped a few days ago in case it's causing the irritation - it's difficult to know as everything seems to sting and has done throughout. I am just using Epaderm at the moment. I have tried Yes OB, Sylk, Hyalofemme and coconut oil in the past (not all at once) and they all sting and don't seem to help. I am wondering whether to try Olive & Bee as sod's law the most expensive thing will be the one that works.

Yes am on 2 x desogestrel alongside the Evorel 50.

Just had a call from the GP and they're giving me 10mg amitriptyline as they think that's the best option and she said they'd had a lot of success with it for vulval pain. They didn't want to see me - the last time I saw a GP in November they pretty much said they'd run out of ideas. I still think it's fixing the wrong problem but if it stops my pain it's a start.

[Haydo]

Hello Nico

I had pain and redness at the entrance to my vagina for 18 months or so, despite using vagifem and various moisturisers, all of which I seemed to react to.  The only one which helped was Olive & Bee and then I started reacting to that.  I was then diagnosed with lichen sclerosus as well as having VA and a prolapse. 

I was told to continue using vagifem internally and to use ovestin externally every day.  I also use a steroid ointment (a half pea sized amount every other day).  Another thing which has helped is to use organic castor oil as a moisturiser externally.  It is a bit sticky but I do not wear underwear and wear crotchless tights so it doesn’t really matter.   Since I have been using it 2 or 3 times a day, and the ovestin externally, the redness around the vagina has all but disappeared, other than when I have a flare up.    I went to see a pelvic floor physio privately and she was worth every penny.  I still get the pain sometimes but it is nowhere near as bad as it was.  It is manageable.  I would also say that the lichen sclerosus was not itchy for me, and only a year previously I had been assured I did not have it.  I would try to see a vulval dermatologist, as that was who diagnosed it for me.

[Nico]

Thanks Haydo. Did you have a biopsy to diagnose the LS?
Also what tights do you wear?

[Pandabear]

Hi Nico,

Firstly I am so sorry for the pain and discomfort you are in, I have also been there. I was using vagifem internally and Ovestin cream outside. I worked out after a while the Ovestin on the outside was making things much worse so just stuck to vagifem internally every day for months then every other day and now I use as much as needed.

I also have found sea buckthorn from Holland and Barrett brilliant, I am sure it helped loads, first two weeks I think you take four a day and thereafter two per day. Expensive but now wouldn’t be without it.

Use a barrier ointment on the sore outside skin as suggested by others.  I also accepted amitriptyline and used paracetamol and naproxen. I also saw a vulva dermatologist privately and did not find her any help. Unless you have lichen sclerosis she didn’t seem to have a clue.

I am much better now, you just need to work out the best regime for you which can take time.

Good luck

[Dierdre]

I use the same as Haydo, vagifem, ovestin externally and Dermovate (steroid cream) if i have a flare up. I was told a few years ago i had traces of Lichens sclerosus by a vulva specialist, although didnt have a biopsy.  The Dermovate works very quickly to clear up the awful soreness and raw skin. Could you ask for this while you wait?

[Nico]

Thanks both.

The GP who thought it might be LS prescribed Betnovate RD in November which seemed to soothe it a bit. I did try it again a couple of nights ago but it didn't soothe and seemed to irritate more so I didn't carry on with it, maybe I should have. They made it clear then that they won't give me anything stronger and I don't think they will give me any more of the betnovate when it runs out. The gynae gave Eumovate but there was a national shortage of the ointment so I reluctantly accepted cream and it didn't help so she told me to stop.

I've messaged the gynae for advice. I am in despair  - I'm not even sure I can go to physio in a couple of days as it hurts so much. I really don't feel my life is worth living unless someone gets to the bottom of this but I have completely lost hope.

[Haydo]

Hi Nico

I did not have a biopsy as the dermatologist could see the signs of it.

Tights - have a look at tightstightstights.co.uk.  I wear the Pamela Mann opaque ones during the colder weather and the Pretty Polly pretty cool ones when it warms up a bit.   As with everything, it was a case of trial and error until I found ones which were comfortable for me. 

I also take sea buckthorn which really helped with the VA, but you said you no longer feel dry inside so may not benefit from it. 

It will take time to find a regime but you will get there.  We are all so different, what suits one may not suit another.   I find that not wearing underwear really helps me, and I only occasionally wear harem type trousers now.

I’ve just seen your last post.  There are many of us who have been where you are, but you will get there in the end.  At one stage I could hardly walk with it all and felt like you do now.  You feel as if you are going round and round in circles.    Please try to get to the physio if you can.  Take care.

[Minusminnie]

Just had a call from the GP and they're giving me 10mg amitriptyline as they think that's the best option and she said they'd had a lot of success with it for vulval pain.

Some pain maybe but i found amitriptyline didn't do anything for vulva pain. You do have to be careful of it getting you constipated as you then strain on the pelvic floor.

Also what tights do you wear?

Sorry ? to Haydo but Pretty Polly pretty cool crotchless is one make that i have worn bought online.  John Lewis do a cotton gusset winter thickness tight not crotchless but breathable.  I often wear long socks from Next looks like you are wearing thicker tights with a skirt anyway.

Tena light so a zero fragrance panty liner which gives consistency in case your underwear is irritating in some way.

I really don't feel my life is worth living unless someone gets to the bottom of this but I have completely lost hope.

Just read this as i went to post....I ended up in a pain clinic at one point and had some counselling through them.  You may find it helpful to ask for that as i often refer back to the coping strategies given to me.  Distraction is a big help for me but i've grandchildren that help a lot with that !! Take care.

[Haydo]

Just to clarify re the physio, as I’m sure the idea of being examined at present is beyond you.  If she is a good physio she will examine you externally and also will be able to give you some breathing exercises and exercises which may help you release the pelvic floor and help with the pain.  This is what happened with me, and it was a long time before I was examined internally.