Despite treating my LS since January I still experience pain in the form of burning, stinging and tension/tightness in the vulva. And basically a heightened state of awareness/hypersensitivity of the area. I went on Dr Goldstein's website and read that 79% reported chronic vulva pain. Chronic I'm assuming that they have persistent pain despite treatment with steroids?
I spent almost 7 years on an antidepressant for generalized anxiety only to fear I'll have to take something again to manage this ongoing pain which I fear will never stop. I've read women can develop secondary vulvodynia from LS. Sorry if I sound a little down but it can get tiresome. Appreciate this forum as I've gained lots of valuable information and able to vent my frustrations. But does it ever get better?
I think it does get better. It did for me. I am older whether that has some bearing.
Kathleen,
Do you mind me asking how old you were when symptoms started and how old you are now. My symptoms started at around 40 and now I'm 44. Seems like it's going to be never ending.
Thanks
I am 70 now. At least 20 years. Diagnosed via biopsy.
I have the same symptoms as you, I was first diagnosed with early signs of LS, but no matter what treatment I was given, steroids etc, I had no improvement. On my 3rd visit to my consultant she said it may be vulvodynia and that is much more difficult to treat. I am taking 10 mg amitriptyline and use pure coconut oil. I'm coping just. Still have raw feeling and discomfort when sitting for long periods. Waiting for appointment for scan of pelvis and dermatologist. Feels never ending.
Thanks Kathleen, hope so!
Did the skin improve at all with the steroids? I seem to have or had (not sure if my skin has got worse recently since seeing my doctor) some improvement visually, that's what my doctor said last time. The white areas/spots still present though.
But yes the discomfort persists. I hear vulvodynia is difficult to treat. Did you find the amitryptiline helps at all?
I'm booked in to see a dermatologist in October as I've been seen by 2 gynecologists since January. But yes otherwise it feels never ending.
I have very little white areas and no spots. Burning, stinging,raw with pains on upper thighs and buttocks. Found no benefit with ointments. Amitryptiline takes the edge off, tried 20mg but made my head too sore next day( I suffer with headaches too). I might try again to increase to see if things improve. So fed up having to think of my vagina!!
Dani, Have you tried altering your Diet? Many women find going Gluten free helps, and in some cases Dairy too. Sugar is also terrible for LS.
For some women diet is the key to pain free and symptom free LS, and for others it has no effect, and so if you have not already done so it is definitely worth giving it a shot.
I totally agree with diet, not only gluten free (which recommended me Dr. Goldstein by the way).. But I believe there is a strong link with oxalates as well, so I was on Washington for a week and stayed on the house of my mothers friend, since I started avoiding sugar and gluten we were eating salads and green shakes filled with spinach like crazy, and also I was all day carrying a bag of almonds eating every day like crazy as well.. By the end of the week I could not even sit down because of the generalized inflamation of the vg, and the only thing I did differently was eating those very high oxalate food, now I started a low oxalate diet plus the gluten free and feel amazing. By the way I have LS, vulvodynia and pelvic floor dysfunction, Dr.Goldstein explained the inflamation that the tighten muscles can cause makes everything worst, so maybe you need to check that out as well I have no idea I had that, but is very common to develop it from having pain down there, I have to use some valium suppositories and dilators like crazy to strech the muscles
Highly suggest you change your diet, take care 
It deos get you down. I suffer with burming thighs and my Gynacologist said she didn't think it was connected to LS, but I'm sure it is. It seems worse when I use the steroid cream so perhaps, somehow, it gets on my legs. I now put aloe vera on my thighs followed by a coat of Vaseline every time I use the steoid cream on my other bits. It does seem to help,
Hi Dani,
Would you be able to describe your pelvis discomfort to me? I have been having difficulties with sitting as well and have tried all kinds of pillows to give some relief and/or support. (At present I'm sitting on a pillow that is filled with buckweat hulls and that starts to give some relief. The thing is that you also need to give support to the rest of your spinal cord to avoid a sore back.)
I just googled the title of this discussion and found an NCBI study that said: "Provoked vestibulodynia, the most common form of vulvodynia (unexplained pain of the vulva), is a prevalent, idiopathic pain disorder associated with a history of recurrent candidiasis (yeast infections). It is characterized by vulvar allodynia (painful hypersensitivity to touch) and hyperinnervation."
I believe that most of us who've had LS for many years have also had many yeast infections. Mine were always associated with a combination of the friction of sex, emotional stress, and too much sugar. Maybe the only reason I don't suffer from chronic pain is that at age 63 I've spent nearly half of my adult life celibate, divided over various periods. I also think LS and yeast kind of feed each other.
I don't know whether 'chronic' means forever or just until you can break the cycle.
I'm also fed up thinking about my vulva. This time a year ago I wasn't aware of my undercarriage. How things can change so quickly!
Guppy thanks for your msg. Haven't tried altering my diet very much, although I'm gluten free these days.
Hanny, my pelvic discomfort has settled down, although I get the odd cramping which I put it down to hormones/time of the month. The only pain I get is in my vulva. Sometimes it shoots to the buttocks though. The other night I went to see a movie and was pretty uncomfortable sitting for almost 2 hours.
My doctor diagnosed me with pelvic floor myalgia. I'm seeing a physio at the end of the month. She said the burning/soreness is actually nerve and muscular from the spasms in the vulva and not from the LS. Who knows. I'm willing to try anything though.
The buckwheat pillow sounds interesting. If it helps maybe I should give it a try?
This is really interesting. I also just looked it up and found a good explanation on Derm Net NZ called Dyaesthetic Vulvodynia. I haven't had issues with recurrent yeast infections however I believe my LS has been around for quite a few years and frequent sex hasn't helped. I wasn't uncomfortable having sex until very recently so I didn't think anything was wrong.
These days I think celibacy is a great option lol. Feel sorry for my partner. He's patient and understanding but still..
With me too, sitting for long periods of time can be very trying. I have gone to a couple of sessions with a masseuse and that helped a bit. And the buckweat pillow has helped as well, also because it supports in such a way that I don't get lower back pain.
I may look into the buckwheat pillow. I also get lower back pain, I think that has a lot to do with posture and sitting incorrectly.
Oh massages are always great. Any pain I have seems to almost disappear during the session.
Thanks for the msg Carolina. I have read a lot about the low oxalates diet. Is it difficult to follow? And do you know where I can find an accurate list of foods that are allowed and to be avoided?
My doctor diagnosed me with pelvic floor dysfunction too. I'm seeing a physio at the end of the month. Do you find dilating helps?
I haven't read Dr Goldstein mention that but that's really interesting. Did he say that during the presentation or was it on a separate article. I must've missed it.