Fri Oct 10, 2014 8:51 am by LeonieFlower
I am 26 and have been suffering with this hell of a disease for 8 years (diagnosed 2006) and it has only gotten worse year after year... I am on pain meds and tricyclic antidepressant (amitriptyline) which isnt helping. I get erratic when taking the meds. I have tried antibiotic creams, lions mane (supplement), zinc oxide, cold packs, …
Sun Aug 02, 2015 3:17 am 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 …
Sun Dec 04, 2011 5:19 am by ria
I am now pain free no medication. Please look up Dr Robert Morse on youtube he has helped me with my constant pain he is a Naturopathic doctor in America. I did not go and see him I had a telephone consultation, but please feel free to call the clinic advice is there for free can you beleive it
If you need any advice please contact me I …
Mon Oct 05, 2015 7:14 am by lils.panda
I'm 25 years old and I have suffered from vulvodynia for as long as I can remember. I spent most of my teen years being told I had some sort of eczema/skin problems down there - I tried all the creams out there which would never work and doctors would never believe me that I hadn't tried to use them as I still felt pain down there after. I felt really embarrased and hurt by this so …
Tue Sep 29, 2015 9:10 am by Lil
Please help if you can.
I have been suffering with bumps on the vaginal area and it does seem as if I can get rid of them. I have not been sexually active due to these occurrences The doctors do not know what is causing this reaction but I am guessing it is the medication that I have been taking for high blood pressure (I am trying to wean myself off of because my …
Sat Aug 15, 2015 12:06 pm by SoHelpless
Mon Aug 02, 2010 3:36 am by Sebby (Admin)
Sat Aug 01, 2015 6:42 am by WaahwaahUK
Also, I've just been prescribed Nortryptiline 10mg. Scared to try it but going to give it a shot... I apparently have pudendal nerve inflammation along with incredibly sensitive nerve endings in my vulva and labia …
Tue Jul 14, 2015 10:18 am by Funchik93
I'm 21, 16 days ago I had my full vestibulectomy surgery. I'm supposed to have my period soon and I really wanted to hear from women who are past this process - what should I expect? Does it hurt? Do you have any advice on hygiene and stuff like that?
Through this all recovery process I've learned that the most difficult thing for me is dealing with all the …
I am a new member, and would like to share some info. with everyone. I have been suffering on and off for 30 years with Vulvodynia. I was treated in my early twenties, after having many UTI's and infections from constant use of antibiotics. A Gyn. froze the painful areas with liquid nitrogen, and the pain went away completely for many years. The doctor is not practicing anymore and I cannot find anyone who will do this procedure. The freezing procedure worked for over twenty five years with only minor bouts of burning.
I am now in my early fifties and about four years ago, the horrible pain came back. I am peri-menapausal, and cannot relieve myself from this constant burning, even using Estrace cream. I have been to many specialists and have tried many treatments. I just found this website today and am very happy I did.
If anyone has tried Evening Primrose oil and it has relieved the burning, please let me know. I am desperate, like all of you suffering constantly, to rid myself of this burning pain. Thank you so much, Minny.
- Posts: 1
Join date: 2013-11-06
Location: Boston, MA, USA
I heard years ago when I was on a different forum about a lady who used vinegar and water, she put a folded face cloth in the mixture and then doused her self with it. Funny enough my Mum used to do this to my head when I used to get migraines, they used this for pain in the old days. The vinegar draws out the heat.... I don't suffer from burning down there so I have never tried it, but I couldn't see any problem with giving it ago. I feel you should look into going to a vulva pain specialist if you can. All the best
- Posts: 182
Join date: 2013-08-11
- Posts: 95
Join date: 2012-12-18
Hi ladies, I wanted to tell you what has helped my 22 year old daughter. My daughter has been battling vulvodynia, chronic UTI's, yeast infections, BV, and even strep B vaginal infections for almost 3 years now. She's been on the neverending revolving doOr of antibiotics, vaginal creams, lidocaine, hydrogen peroxide douches, etc., etc. FINALLY I SAID ENOUGH IS ENOUGH AND TOOK OVER!! There's nothing worst than seeing your child in so much pain and agony, and it was so heartbreaking watching this "animal" take my daughter's womanhood away from her. SUPER SAD!!
Here's what I did and, shockingly, it has helped her tremendously. Even to the point where she and her fiance' are actually having sexual intercourse with very little to no pain.
1. Get off all HORMONAL birth control.
2. Get on a daily regiment of:
Garlic pill - 1
Vitamin C (500mg) - 1
Femdophilus - 1
Cranberry pill - 1
Biotin - (she takes this because her hair has been thinning)
* Barlean's, The Essential Woman Supplement, Swirl, Chocolate Mint - 1 TBSP
* Flaxseed Oil - 1 .... once the Barlean's, The Essential Woman Supplement, Swirl, Chocolate Mint drink is gone. The two main ingredient's in this drink is Flaxseed Oil and Primrose Oil.
Folic Acid - 1
Jarrow IBS 299V Probiotic - 1
Femdophilus - 1
Cranberry pill - 1
Biotin - (again, she takes this because her hair has been thinning)
* Primrose Oil - 1 .... once the Barlean's, The Essential Woman Supplement, Swirl, Chocolate Mint drink is gone. The two main ingredient's in this drink is *Flaxseed Oil and *Primrose Oil.
She also uses a spray bottle to spray that area with a mixture of vinegar and water while taking her daily shower.
About 2 weeks after starting this regiment, I'm telling you, it's been like night and day for her. She is so happy right now. Almost makes me want to cry. And btw, she had a copper IUD with NO HORMONES inserted for birth control.
Also, we will be adding Zinc (and copper ... needed with zinc supplementals) to her daily regiment. I found some very interesting articles that say that low zinc levels are often found in people who have acne and hair loss/thinning due to their hormones being out of whack, "PARTICULARLY IN LOW PROGESTERONE LEVELS," which, voila', is often noted in women with vulvodynia.
Anyway, I just wanted share what has dramatically helped my daughter with this awful, AWFUL thing. I don't know if her daily regiment will help all, but even if it helps 1 or 2 people, that's a couple less women that have to live with this evil problem.
GOOD LUCK TO YOU ALL!!
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Join date: 2013-11-24
- Posts: 182
Join date: 2013-08-11
Alana3 wrote:Im glad shes.feeling better but please dont tell people to get off bcps you have absolutely no idea why someone is on something. And telling someone to get off drugs could.potentially hurt them. I'm on it for endometriosis my growths would grow out of hand without the help of bcps. None of this would work for me as mine was nerve pain. Mine was handled thru surgery and removal of my skin and nerves. That for me was never an option and sorta seems like yeast or an infection. But I appreciate what you're saying and helping other women but try not saying to get off of something.
Alana3, I'm sorry. The only reason I said to get off hormonal BC is because it's strongly suggested (and do I dare say, universally KNOWN) by many that vulvodynia is actual caused by or strongly contributed by hormonal BC use. Obviously if you have other illnesses where hormonal BC is needed, then you may need to find differing ways/regiments to help with the vulvodynia. Like I said, my daughter's daily regiment isn't for everyone and may not help everyone, but if it helps just a few women, it's worth sharing.
Also, my daughter did have yeast and other chronic infections, but she was diagnosed with vulvodynia about 2 months ago. The doctor even admitted that she had probably been misdiagnosed with "infections" for a couple years. They even discussed having surgery to remove the nerves, and also the possibility of trying local injections. Even though she was in unbearable pain, my daughter was super leery and scared about having injections or surgery down there, so she opted to give her daily regiment of probiotics, vitamins, and sprays a chance. She actually started feeling a bit better after 2 weeks and, thankfully, stuck with the regiment. She'll be the first to tell you that she had her doubts about "the regiment" but, I know, now after 1 1/2 months of sticking with it and feeling 98% "normal" again, she would encourage everyone to find a daily regiment THAT'S GOOD FOR YOU and STICK WITH IT. Give it a chance to work. Also, I want to add, she didn't get her IUD until about 1 week ago, about 3 weeks after she was feeling some improvement in her vulvodynia.
- Posts: 3
Join date: 2013-11-24
My gyne has just suggested I go back on BC progesterone only after I have been off it for about 5 years.
I used to use combined BC pills for about 10 years, my v pain began probably about 3/4 years after I started taking the pill, but it was manageable you know like 5 days outta 30 I would have some pain. (It all started after a run of infections and yeast down there) But since coming off the BC pills the pain has gotten so much worse like 25 days out of 30 I'm in terrible burning sore pain.
There are bound to be several other factors at play here, but it seems to me that going back on the pill is worth a try. Especially as my pain is always better at the start of my period and worse towards the end of my period and just after. Seems there is something cyclical going on.
It certainly hasn't helped me much coming off.
And like Alana - my pain is nerve related so I can't imagine how or why the BC pill will make a difference but lets see.
I'm always confused at all the conflicting advice, for example, my pain is said to be just my nerves playing up, but nobody will recommend surgery or even a nerve block to give me some relief.
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Join date: 2012-05-18
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Join date: 2013-11-22