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» 7 months since the diagnosis
Lichen Sclerosus EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Lichen Sclerosus EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Lichen Sclerosus EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Lichen Sclerosus EmptySat Jun 15, 2019 5:07 pm by mary jane

» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
Lichen Sclerosus EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

» Vestibulectomy next week in London!! - questions!!
Lichen Sclerosus EmptyWed Apr 24, 2019 8:32 pm by HedvigB

» Dating with Vulvodynia and Vaginismus advice
Lichen Sclerosus EmptyFri Apr 19, 2019 10:25 pm by Tartufo

» Research Participants Needed!
Lichen Sclerosus EmptyThu Apr 11, 2019 2:09 pm by PelvicPainProject

» Does anyone else have Endometriosis?
Lichen Sclerosus EmptyMon Apr 08, 2019 7:54 am by Jo44

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 2

Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?

Sat Aug 01, 2015 4:17 pm by Fielder

Hi everyone,

I'm a newbie.  I live in the UK.  

I'm trying to work out the best cushion to get for my vulvodynia.  I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.

I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …

Comments: 11

An absolute success story- please read!

Fri Mar 08, 2019 10:57 pm by Persevere1990

Dear All,

I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.

I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …

Comments: 0

I'm sorry im rambling

Thu Feb 21, 2019 5:49 am by Jet227

hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

Comments: 1

New member need advice please

Thu Feb 28, 2019 11:33 pm by PANDORA123

Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.

Thanks

Comments: 5

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 3

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 4

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 6

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 3


Lichen Sclerosus

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Lichen Sclerosus Empty Lichen Sclerosus

Post  ryn207 on Thu Feb 01, 2018 3:30 am

Hi there,

Were any of you also diagnosed with Lichen Sclerosus? That's what my Dermatologist originally said that I have. At this point I can't get a clear answer on if it's Lichen Sclerosus, Vulvodynia, or both. Just looking to see if anyone has/had that and what they've tried. I'm willing to try anything at this point to get my life back.


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Lichen Sclerosus Empty Re: Lichen Sclerosus

Post  Athena on Wed Feb 14, 2018 3:55 am

Hi ryn207,

I was also diagnosed with Lichen Sclerosus and was treated for it for a bit. I have since moved towards a different diagnosis for the itching.

How did you get your diagnosis and what is your treatment? Have you had a google about it yet? I am happy to chat about it if you want to share your experience Smile

Athena

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Lichen Sclerosus Empty Re: Lichen Sclerosus

Post  ryn207 on Fri Feb 16, 2018 2:47 am

Hi Athena,

This is going to be a long post so I apologize in advance! I was diagnosed by a dermatologist through an examination (not a biopsy) back in September of 2016. I was put on Clobetasol Propionate and told to use Aquaphor over it to avoid drying out the skin. I later received a Kenalog injection into my lower back muscle as well. The injection did nothing except cause a lot of facial swelling that lasted over 6 months. We later added Gabapentin, Tacrolimus, Amitriptyline, weekly Diflucan, and Kenalog injections directly in my vulva and near my anus. We also added Estrogen ointment, but that didn’t help either. The Amitriptyline, Clobetasol Propionate, and Tacrolimus helped a bit, but I was still in some pain and had lots of itchiness.

My dermatologist then sent me to a Physical Therapist in May of 2017. I worked with 3 Physical Therapists and went twice a week where we did stretches, internal PT, dry needling, and used essential oils. The pain when I would walk stopped, but I still had itching. I stopped taking the Clobetasol Propionate and Tacrolimus for a few days because I got a yeast infection, but when I went back on it they started to work. For 5 weeks I had almost no itching. Intercourse was still a little uncomfortable, but not painful. At the beginning of August I started feeling like I was getting a yeast infection. I treated it again with Diflucan and yogurt and took a couple days off of the Clobetasol Propionate and Tacrolimus. Since then some of the itchiness has gone away, but not 100%.

I no longer go to PT since I hit a plateau and they felt that PT was no longer making progress. I am also seeing a gynecologist who specializes in vulva disorders. She currently has me using CBD Oil every day. So far I haven't noticed much of a change.

Did you find anything that took the symptoms away completely? Also, what diagnosis are you leaning towards now?



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Lichen Sclerosus Empty Re: Lichen Sclerosus

Post  aspaceodyssey on Wed Mar 28, 2018 2:38 pm

I was also diagnosed with LS (without a biopsy, just based on symptoms and my response to treatment). in my case, clobetasol, topical estradiol, and nortriptyline ended up doing the trick. I'm not 100% pain free but can have pretty normal sex now for the first time in my life. I now do a lower dose steroid and the estradiol about once a week or once every other week for maintenance. I find if I go too long without using them, my pain definitely starts to worsen again. I am 99% sure I also have a chronic yeast problem or sensitivity which sometimes causes soreness, itchiness, and pain, so I use a ton of raw coconut oil topically and internally which is very soothing and helps fight candida. I've been more careful about trying to eliminate all excess sugar from my diet and I feel that's made a noticeable difference in my pain level. I highly recommend raw coconut oil and if you need a little extra soothing from itchiness, you can add in a few drops of tea tree oil.

I'm sorry you've been going through this too and haven't seen the results you want from everything you've been trying. keep fighting! sometimes it just takes time for the body to heal or there may be one or two last pieces of the recovery puzzle you just haven't discovered yet. I recommend keeping up with any PT stretches and relaxation exercises you were doing if you can do them at home on your own...I've found that sticking with them proved very helpful for relaxing the muscles and improving circulation over time. dilators are also really great to practice with. are you still using an estrogen ointment and was/is the estrogen a compounded formula or a prepackaged one like premarin? because I would definitely go with estradiol compounded in aquaphor if you have a lab near you that will do that...it's a higher quality estrogen that's more bioavailable and has fewer additives that can irritate you. for me estrogen was key to rebuilding my fragile skin and tissue and from what I've read that's pretty typical of LS, especially to counteract the steroids which can thin skin out over time, so not sure how long you were using it for but you may want to stick with it for a longer term if you haven't tried that already. I've read that topical testosterone can be helpful for LS too but never tried it myself.

hope some of this advice may prove useful to you. hang in there and best wishes for your recovery! you will get there. feel free to message me if you have any questions or would like to talk more Smile

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