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» Anyone have pain with urination?
Yesterday at 9:55 am by Gaby

» New member - just looking for feedback
Mon Oct 15, 2018 5:40 pm by mertzwl

» Will I ever be able to wear jeans?
Sun Oct 14, 2018 4:14 pm by Npage14

» Amitriptyline Success and new-found love
Thu Oct 11, 2018 8:29 pm by megaanx

» Diagnosed recently, looking for advice
Wed Oct 10, 2018 2:30 pm by wuhujen

» Dose HAVING VULVODYNIA MEANS YOU HAVE LUPUS?? HELP IM FREAKING OUT!
Wed Oct 10, 2018 2:01 pm by pussycat

» From a concerned husband
Wed Oct 10, 2018 1:46 pm by shope610

» Had this for 5 years, looking for people who understand
Wed Oct 10, 2018 1:55 am by Npage14

» 6 year sufferer but I’ve found some hope
Wed Oct 10, 2018 1:33 am by Npage14

Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

Comments: 6

Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

Comments: 4

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 4

Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

Comments: 2

6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

Comments: 0

Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 5

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 1

Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

Comments: 6


Lichen Sclerosus

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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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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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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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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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Re: Lichen Sclerosus

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