Thu May 10, 2018 9:43 am by Rosie21
Sat Aug 01, 2015 4:17 pm by Fielder
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 …
Fri Mar 08, 2019 10:57 pm by Persevere1990
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- …
Thu Feb 21, 2019 5:49 am by Jet227
Thu Feb 28, 2019 11:33 pm by PANDORA123
Fri Feb 08, 2019 7:35 pm by rl2091
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 …
Tue Jan 08, 2019 3:55 pm by flissyg
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 …
Wed Dec 05, 2018 3:26 pm by Cin124
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 …
Wed Jan 09, 2019 9:09 pm by Jma990o
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 …
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.
- Posts : 22
Join date : 2018-01-11
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
- Posts : 5
Join date : 2018-02-14
Location : Australia
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?
- Posts : 22
Join date : 2018-01-11
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
- Posts : 30
Join date : 2013-12-09