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 …
I'm tired of trying medications that make me want to commit suicide. Lyrica - hello!
I'm tired of being in so much pain that I can't sleep at night. I'm tired of not being able to sit up straight. I have to recline on a couch all of the time.
I'm ANGRY that I cannot have sex.
I had to go on antibiotics for a tooth infection a month ago. I flared so badly that I literally shook each time it was time for me to take another pill. My doctor didn't even believe me when I said it caused a flare. Looking back, when I think about that time, it is almost like PTSD, except I am thankful that I have never had to serve in the military. (But am thankful for all active and veteran military - they make our country safe. And my dad is a veteran.)
I used to read all of the time. I loved books. But I don't read anymore. I boxed up all of the clothes I can't wear anymore because of this awful disease. I must have eight or nine boxes of clothes that I used to be able to wear that I am now donating to charity. I have about three boxes of clothes that I am holding back, just in case. But I know just in case is a lost cause. I'll never be able to wear them again. All I can wear are shapeless garments that i don't even like. I used to be attractive and fit. Now, I can't even exercise anymore because it hurts.. My vulvodynia doctor said to find a saltwater pool or build one. Well, there isn't one in my community and since I cannot work, how can I afford to build one? I have lost my femininity, and I think, a large part of myself.
Instead of buying my mom a mother's day card, I wrote her a letter telling her all of the things I was thankful about her doing (except, of course, actually looking up this disease to understand it - whatever).
Part of me wonders if by stopping reading books, giving away clothing, and writing a note to my mom, that maybe I am following the steps leading up to suicide. Maybe I am.
FFS, when I type in vulvodynia on this website, I get a spell check on it. No one cares about this disease, not even enough to have it on the list of words that are correctly spelled. Truly, no offense to this website, but honestly, shouldn't it be a word that doesn't prompt a spell check?
For two plus years, I have tried to stay positive, but I don't know if I can do it anymore.
I have seen a vulvodynia specialist. He said that aside from gabapentin, lyrica, and cymbalta, he can do nothing else for me. He wants me to see a nerve block doctor (not sure what they are called), a rheumatologist, an allergy doctor, an orthopedist, and a neurologist.
Have already seen an orthopedist, and the minute I mentioned vulvodynia, he acted like I had thrown acid on his face and crotch. First do no harm, my ass.
So frustrated. But mainly, so sad. Just so sad every day. Two years ago, my life was perfect. I'm not rich and I had my share of problems just like everybody else. I simply don't know what I did to deserve this.
- Posts : 27
Join date : 2016-08-02
Location : Huntsville, AL
I am in pain. I have been told by doctors that there is nothing more they can do for me. But to make matters worse, my youngest cat is sick. His older brother has already suffered the loss of a younger sibling. I made an appointment later today so my husband can help me carry my baby cat in for care. He technically is not a baby, but he is my baby as he is the youngest.
I feel like my body has malfunctioned. I fell like I am broken. I would give anything, ANYTHING, to go back to two and a half years ago when I had my life back. It wasn't perfect, but I loved it, my life. I just wish I weren't so sad all of the time. I wonder why I am being punished. Maybe I was too happy? Is it ever possible to not feel this sad all of the time? Is it ever possible to not be afraid of the next flare all of the time?
But most important, I hope my kitten is well soon.
- Posts : 27
Join date : 2016-08-02
Location : Huntsville, AL
I read your story and am so sorry for what you are going through. My wife is in the same boat as you and is on the edge. What you have described is the same thing she talks about. I wish I could help all of you but I myself am unsure. I have come on here to try and get some answers for things that can help my wife.
I know it's easy coming from me as I'm a man and probably don't understand your issues but I want you to know that I think all of you ladies that are going through this are amazing. If people know what you went through day to day there would be more help and i'm sure there will be one day.
I hope your cat is okay and you feel better.
- Posts : 1
Join date : 2018-05-26
Lidocaine (topical and injection)
Gabapentin – oral and topical
Prescription and OTC Painkillers
Biopsy and skin testing
Antidepressents: Cymbalta, Prozac, Zoloft, Effexor, Lamictal, Wellbutrin
Clobetasol Proponiate steroid
Hydrocortisone Valerate steroid
Hymenectomy, vestibular widening surgery
Dilators (1 year of daily use)
Amitriptyline - topical
Gluten-free and low oxalate diet
Kegels, pelvic floor exercises
Home remedies (cotton underwear, mild soaps, icing, baths, water-based lubricants, etc)
I finally found my cure after 13 years. I went to Dr. Margesson in Manchester, NH. She didn't dismiss my symptoms, knew what vulvodynia was (unlike my primary gyno), and referred me to Dr. Adrienne Bonham at Strong Memorial Hospital in Rochester, NY. After one visit with her, she easily diagnosed me with vulvodynia and I had a full vestibulectomy. 3 years later I am in NO pain at all. It completely solved my issue. I'm not sure if you've given thought to this route, but I just wanted to share that I was once in your shoes and I am now free of the physical and mental anguish caused by this horrible condition. If you want more info, I'd be glad to share!
- Posts : 2
Join date : 2015-04-05
What I can say about this disease is that many of us do improve eventually. It will probably be the hardest fight of your life but I know you can dig deep and hang in there. It is painful, frustrating, difficult, and it steals everything you are away from you. I felt very similar to you. I couldn't have sex with my boyfriend, wear the clothes I wanted, or go walking for any extended period of time. I got horrible grades in my undergraduate degree and lost a lot of friends. For years I didn't know who I was because vulvodynia had taken everything from me, but I can tell you that I came out the other side and I am going to live a good life. I know a lot of us end up suicidal to some degree but if you look around people are getting better and leaving this site.
The doctors won't always do the right thing or know the right thing. I know you are in pain but you have to be your own self-advocate, explore all of your options, and push for what you need. Read scientific articles and call different specialists to see if they can offer you anything. There are a lot of options for you and eventually, you will figure out what is triggering your symptoms and you will be ok again. There are naturopaths, valvular specialists, allergists, women's health PT's and so many other clinicians that could be the key to finding your solution.
Lastly, try to remember that you were not always like this and you will not always be like this. When I developed vulvodynia it was a result of nerve damage which takes a long time to heal. Even after my infections stopped I had another 10 months of nerve damage to push through. You can speed this up by seeking help from a women's health physical therapist (I'm currently trying to get into PT school to do this). What I'm trying to say is this is a really difficult and lengthy process but you will come out the other side. Try to hold on to any joy that you can. If looking at your old clothes hurts too much then get rid of them but if having them around and knowing you will be able to wear them and be you again is helpful then keep them. I'm rooting for you! We all are.
- Posts : 14
Join date : 2017-07-19
- Posts : 8
Join date : 2012-11-19
- Posts : 69
Join date : 2014-02-17