vulvodynia and ls

Hi catts

so sorry to hear that you're suffering. I understood that LS was a sub-category of Vulvodynia in that VOD means vulval pain .... LS is certainly painful and relates to the vulva but I understood its a distinctly indentified condition. Amitriptyline is an anti-depressant but has it been prescribed as a way of the doctor saying s/he doesn't know what to do with you?

Well clearly you must be looking for some relief and perhaps some sympathy? So I'd like to extend a hand and say that there are lots of lovely women on here who will probably be able to add more but I wondered whether some manuka honey would help in the first instance? And perhaps some cooled cold pressed olive oil from a jar in the fridge to alternate with it? Thinking of you x

Hi 2cats,

So sorry to hear how you are suffering, it really is a trial I truly sympathise. I too have recently been diagnosed with vulvodynia and I was in agony a couple of months ago. I have had LS since an accident when I was 7 and I'm 65 now, although we didn't know what it was until 17 years ago. I am on my 4th Doctor to date, they just find vulvodynia very difficult to understand.

I was prescribed Gabapentin 2 months ago, currently I take 200mg, it does seem to help with the agonising aching I get, although I still have to take co codamol and amytriptiline as well. I understand Lyrica or Pregabalin is a more modern prescription. But my Vulva dermatologist who has been very proactive treating LS and vulvodynia for many years, setting up a vulva clinic in my area feels that Gabapentin is a better treatment for vulvodynia. So perhaps you might mention that to your Doctor. I do hope you get some relief soon, sending a huge hug to you.

Hi Catts,

My understanding is that vulvodynia is a diagnosis for vulvar pain when there is no reason. Lichen sclerosis is a specific diagnosis and is an autoimmune condition. I have been diagnosed with lichen Planus which is similar to lichen sclerosus except it also affects the vagina as well as the vulvaand vault and can also affect the anus, mouth, scalp too.one of the symptoms that distinguishes it from lichen sclerosus is that along with extreme itching there are painful lesions and rashly bumps. 

I had no idea what was going on when I had my first major flare up last February am my family doctor could not come up with a diagnosis. The pain and itching was unbearable. I got a referral to a gynecologist who specializes in women's diseases and he was able to give me a diagnosis. 

He prescribed clobetasol ointment. I also went to my dermatologist since this is a skin condition and I felt the itching starting in my scalp. He prescribed clobetasol lotion for my scalp and tacrolimus ointment to use as an alternate in rotation with the clobetasol ointment. 

I used the ointments in rotation for three weeks then scaled back to one time midweek and once on weekends. In between I have used coconut oil as an ointment. Unless you have an allergy to coconut oil you can use as much as you want. The nurse at my gyn's office recommended the coconut oil. And then I found an organic salve made with hemp oil and other natural ingredients. This has also been very helpful and soothing.

I took pain medication at the beginning just so I could get some relief and some sleep. Sleep is very important to physical recovery. I also took an antihistamine medication as often as recommended, every four hours. Check with your doctor about that. Mine recommended that to help with the itching.

Also for the first two months I took two or three baths a day with Epsom salts. That was a big help with relief from itching and recovery. I highly recommend doing this. I still take at least one bath a day with Epsom salt.

One of the the ladies in a lichen forum on Patients said to stop eating almonds because they could trigger a flare up. I had been eating almonds. I stopped eating all nuts. 

Since Lichen is considered an autoimmune condition, a friend recommended I check out the Paleo Autoimmune Protocol diet. I started using the principles of AIP and that has really helped put me into remission.

 

I do not have vulvodynia so have no help with that. I do have LS though. I think because you have two conditions you need specific help to manage both. It is very important you find a specialist who understands both conditions well to guide you.

Try the hospitals as I attend a clinic at a women's hospital in Melbourne.

I would not advise any hit and miss attempts to treat the two conditions. I am guessing that LS would be affected by the other condition.

I really hope you can find a place to treat these conditions as you need medical help. 

We can support you but are in no way a replacement for a specialist looking at the actual condition of your vulva.

All the best!

 

Hi,

im using Lidocaine ointment for the vulvodynia. It's been a big help to me. I also reduced my dairy intake too.

good luck!

Here are some things which have helped me:

- Epsom salt baths

- antihistamine taken as often as the directions allow during an itchy flare up

- coconut oil and hemp salve

- prescription pain medication to help sleep at night

- change in diet, I am following the principals of the Paleo Autoimmune Approach diet.

Me again catts123,

There is a book called, 'Vulvodynia Survival Guide' by Howard I Glazer, Ph.D. And Gae Rodke,M.D.,FACOG. Isbn :-  1-57224-291-4. Published:- New Harbinger Publications, Inc. Dr Glazer is a pioneer in the treatment of vulvodynia. I found it very helpful, and not too difficult to read. 

I've too been at that moment of despair, where you think, "Is there no-one out there who can help throw light on this dreadful thing." I found that the other ladies on this forum really understanding and helpful!

When the pain was so excruciating a couple of months ago I ended up at A&E at 10:30 pm. in desperation. I was lucky that night as a lovely gynaecologist gave me morphine (which actually ONLY took the edge off the pain!), and after examining me explained that she thought it was Vulvodynia and explained what that was. I saw my Consultant Dermatologist the next afternoon and she confirmed that diagnosis and prescribed the Gabapentin and Amytriptiline. And Oramorph when needed. I take at least one bath a day and use Dermovate for the LS, along with Vaseline. I don't agree with your first reply person, that Amytriptiline is prescribed when Dr's don't know what to do with you. Amytriptiline does help some people if the dosage is right, although I'm rapidly coming around to the idea that all these drugs only make the pain a little more manageable for some of us. At least we know we are not alone out there, that is some comfort. If you live in the U.K. I can pass on the name of my Consultant Dermatologist, a lady, who is just brilliant!

With much sympathy and biggest hugs,

 

Hi guys thanks so much for all your help and kind words.i went to my own doctor today and she has now prescribed me neurontin 300mg to be taken 3 times a day.ive found myself that when i took the amitriptyline i did get a bit of relief for about 2 wks and then it just stopped so my dose my upped a few times but unfortunately it didnt help.the same thing has happened with the lyrica and those tablets arent cheap either.im goin to see a gynea next wk as i had bleeding recently for a few days and i havent had a period in 18months.

i live in ireland and their are no vulva clinics here which is a discrace and tryin to find a specialist who can help is a nightmare.my doc said the next step is for me to be referred to a pain specialist if i dont get some relief.i will travel to the uk if i cant get the help here so yvonne i could be looking for the name of your dermatologist at some stage

Thanks a million to you all for all your advice it means a lot ye are a great bunch of women xxx

hi catts123,i`ve only recently joined this group so looking back at discussions,can amitriptyline help with LS cos i`ve been taking that for 16 years but only had symptoms of LS for 3 years,i thought amitriptyline was an antidepressant,i take it to relax my muscles at night as i have restless legs syndrome,sorry i can`t recomend anything for you x

 

hi catts123,i`ve been taking amitriptyline for my restless legs syndrome,which helps my legs to relax so that i can sleep,although they are actually anti depressants.i`ve been taking them for 16 years since i had a stroke 

Hi Catts...I've been desperately looking for help with this hell since it pounced on me body just over 5 weeks ago..it feels like 5 years. I've spent 950 euro already and gotten nowhere. I too live in Ireland and was hoping to talk to someone else here..I don't know much about these sites and took forever to register..I'm assuming it won't allow me to give my email address here but I will try..is there some way of doing that? I'd really love to speak to someone else that lives here invade we can help each other to find some relief.

lisa

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