Vulvodynia Support
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» Hope to all my suffering ladies
New Here -- this is my story EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
New Here -- this is my story EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
New Here -- this is my story EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
New Here -- this is my story EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
New Here -- this is my story EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
New Here -- this is my story EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
New Here -- this is my story EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
New Here -- this is my story 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!
New Here -- this is my story EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

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


New Here -- this is my story

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Post  calidreaming999 Mon Apr 04, 2016 10:45 pm

Hi everyone,

I am 28 years old and have been suffering from what I think is vulvodynia for 7 years now. It's been a very challenging 7 years Sad Especially listening to all my friends have normal, fun and adventurous sex lives whereas I am too afraid to even have sex for the pain it will cause and all the emotional blocks I have up now. But let me start from the beginning.

When I was 21 years old, my second sexual partner took off his condom during intercourse. A few days later, I had horrible stinging and burning and an incredibly red vulva. I was convinced I had herpes and I was terrified. I went to a clinic where I was diagnosed with a yeast infection. I took the medication prescribed, and all seemed ok.

Except, this yeast infection seemed to set off a chain reaction and my vagina has literally never been the same since. I feel frequent burning and nerve pain throughout the pelvic region -- vagina and buttocks. Through all my research online I was CONVINCED I must have herpes, though I never actually had any sores or outbreaks. In Canada, I couldn't get a blood test but I begged and begged at one clinic where they finally allowed gave me paperwork for a blood test which I took. I had been SO convinced I had herpes and would have to live with it for the rest of my life, but to my surprise the test came back negative for both strains. I don't want herpes, but at least I would have had a diagnosis.

Over the last seven years I have been tested for STis NUMEROUS times. Everything comes back negative, including yeast (although I did just get a positive yeast swab in February which I treated with diflucan). I get very itchy around the pubic/mons pubis area and often break out in what looks like a rash there. Every GP has told me that my vagina looks completely normal and sends me out the door with steroid cream. But none of that helps and none of that addresses the daily burning sensation I feel. For a long time, I stopped going to the doctor and stopped trying to get answers. I was convinced that I was never going to get relief, and that I was never going to find an answer for what I had. I gave up and I was closed off.

Just this year, I ended up meeting a really great guy who was different than any other I had met before. He valued me for who I was as a person, and didn't pressure me for sex immediately the way men in the past have. So of course, I really wanted to have sex with him. But I still had this lingering fear in the back of my mind that I had herpes -- what else could it be, right? So I went back to a new, young female GP. I got another herpes blood test - negative. And another swab. All negative.

Now I am really trying to figure this out and understand what is happening to my body so I can have some type of normal dating or relationship in my life. I forgot how nice it is to have someone in your life romantically, as I just shut down from the idea before. I am currently seeing a naturopath and I'm on a candida diet which has helped to a degree but I'm not sure if it's correlated to the symptoms or if I'm just having less of a flare up at the moment. I've switched to all sensitive skin detergents, only cotton underwear, looser pants, etc. I am taking daily probiotics and using a vaginal probiotic cream that I put on 2x a day topically. I do feel some relief of symptoms, but nothing is completely gone. I'm also trying to get allergy and food sensitivity tested -- the only time I remember having relief of these symptoms was about two years ago when I was on a really big fitness kick. I had cut a lot of things out of my diet and was exercising all the time and lost quite a bit of weight. I lost my period as a result, but I also remember not having any of these symptoms and pains and feeling like I may finally be free. Leads me to wonder if there may be a hormonal tie-in or dietary tie-in, although I have yet to see complete relief from my current diet which is much more restricted than I ever was before.

I am also demanding my GP refer me to a specialist, a gynaecologist, and a dermatologist. She prescribed me antidepressants to help with the nerve pain but I'm too afraid to try them. I have an active social life and like to go out and enjoy drinks with friends (not presently as part of the diet) and I am scared as to how they make impact my moods or personality. I also don't want to gain weight or become drowsy and tired -- I've already given up caffeine to help and I am missing my coffees so desperately.

I just cannot accept that there is no way to get relief and to heal from this dreadful affliction. I also cannot believe a yeast infection could have triggered something like this for so many years now. I try to be a very grateful person but I cannot help but think why me? How did this happen to me? I am very lucky in many ways but this has robbed me of so many years that should have been carefree and enjoyable and I have felt like a broken, damaged woman who cannot offer herself to a partner fully. I know part of the problem is in the way I'm thinking about it, but I can't help but feel that way. It's completely debilitating. I'm also afraid to get too hopeful or excited that something will help because I don't know how I would deal with the disappointment when symptoms came back. It seems like it's too good to be true, to hope that I could one day feel normal again. I feel no pain during sex either -- only nerve pain, burning and itching that is unpredictable as far as I can tell, so for a long time I didn't even know if I truly did have vulvodynia.

Anyway, I had to rant and get that all out. I am really glad to have found an active forum, and I look forward to learning more about everyone's successes and individual situations. If anyone is from Canada, specifically the GTA and has any doctor recommendations or success stories, it would be greatly appreciated.

Thank you.

calidreaming999

Posts : 2
Join date : 2016-04-04

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Post  PainBlogger Tue Apr 05, 2016 8:08 am

Thanks for sharing your story. Vulvodynia has so many different presentations that I think it's really useful that sufferers can read as many different case histories as possible.

My symptoms have not gone on as long as yours but started with a UTI and thrush at the same time. Nearly two years later and I am a lot better. I saw a gynaecologist (who was not very helpful), a women's health/specialist pelvic pain physiotherapist, and a pain management consultant (anaesthetist who specialises in chronic pain and the one I saw has an interest in pelvic pain). The physio and pain management doc were very helpful. I used lidocaine gel at night for eight weeks and that did help somewhat but I was still getting a lot pain both provoked and unprovoked. After trying pregabalin and amitriptyline with little success, I've been on duloxetine for the last six months or so and my pain flares have reduced significantly.

I've also cut out all fragranced products that have any contact with my skin down there. So no perfumed bath products, sanitary products or toilet paper. No fragranced detergent on any clothes or towels that I use for the lower half of my body. I've changed my diet to cut out tea, coffee, carbonated drinks, artificial sweeteners (as much as possible), and citrus fruits/juice. I was getting a lot of bladder/urethral pain as well as vulval pain.

I know the prospect of trying antidepressant drugs can be scary, but you can always discontinue taking them if the side effects are too much to tolerate.

The other things that have helped me are acupuncture (expensive but worth trying as the only side effects are the occasional small bruise) and dilator exercises as instructed by the physiotherapist to reduce pelvic floor muscle tension.

Even six months ago I felt very hopeless and that I'd be stuck forever not able to enjoy life and have a full relationship again with my husband. But I truly believe now that I can get at least 90% better, so well enough to do everything I want even if I have some low level pain from time to time. People do get better from this, it just can be a long road to find the combination of treatment that works. But don't give up looking for that combination.

PainBlogger

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Join date : 2015-07-27

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Post  emalita Tue Apr 05, 2016 1:21 pm

I'm so sorry to hear that you have been in pain for 7 years. I've only had my pain for about 2 years now, even though looking back my lady bits were never 100% pain free. I can absolutely relate to the despair that comes with not being able to be intimate with a partner. I have been with my fiance for almost 12 years now, but I haven't been able to be truly intimate in about a year. Makes me feel like less of a woman Sad I've read articles about having to find new ways to be intimate when there is vulvar pain, but honestly just the thought of a sexual act causes discomfort because it only reminds me that I'm broken.

One of my OBGYNs prescribed me gabapentin in a compounded cream because she assumed the pain was nerve damage since nothing was ever showing up on a wet mount. I purchased the Rx but chose to never use it. I just know in my gut that this isn't a nerve issue for me. I won't write out my whole story here since I have it posted already, but I finally found a doctor who used a more advanced testing method to determine the health of my vaginal flora (he believes that vaginal secretions cause a great deal of vulvar pain). I am only on week three of my 4+ month treatment plan with him, but I'm trying to be hopeful.

If your pain is caused by damaged or overactive nerves, antidepressants and anticonvulsants seem to be the treatment of choice for most people. I had taken antidepressants as a kid for many years and hated that they made me feel numb emotionally. So I was extremely hesitant to use it, but if you decide to give it a try, see if you can get them compounded in a cream. That way it shouldn't have such a negative systemic impact.

emalita

Posts : 249
Join date : 2016-03-29
Location : USA

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Post  calidreaming999 Wed Apr 06, 2016 1:35 am

Thank you guys for the support! I didn't realize that you could get the gabapentin as a compounded cream. I will ask about that when I go back to the Doctor on Thursday. I have struggled with some depression and anxiety issues in my life and have always managed without any anti depressants and I am just too afraid for how it would impact my moods. Not to mention from reading other experiences, it just seems like it has so many negative possible side effects. I appreciate both of you sharing your experiences with me. Looking back, I realize that I also had an undiagnosed UTI that traveled up to my kidneys because it was undiagnosed. I've also suffered from irregular periods for a very long time, though they've since regulated. I had another UTI this January. I wonder if my pelvic region is just extremely sensitive and all of these issues are working together to make things tougher for me.

I hope that we all stop suffering soon Sad

calidreaming999

Posts : 2
Join date : 2016-04-04

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Post  emalita Wed Apr 06, 2016 2:53 am

UTIs are so horrible. Do some research on a supplement called D-Mannose. The pure form comes in a powder that you mix with water (tastes slightly sweet and bitter - super easy to take). I had found out about it when looking for natural UTI cures, and both the Functional Medicine Practitioner and Naturopath I met with recommended it. It only works on UTIs caused by E. coli bacteria, but that is the most common cause. There are actual studies done about its effectiveness on PubMed; so it's not just something only natural doctors use. I've read about people using it to cure UTIs as well as prevent them. Hopefully that can help keep you UTI free if that is still a concern of yours, and it would hopefully avoid the need for antibiotics, which I know got me into the situation I'm in now.

My Naturopath had recommended seed cycling to me to regulate my periods/hormones, which I've read some great success stories on. However, my cycles are super regular; so I didn't want to mess with the one normal thing I had in my life Smile

emalita

Posts : 249
Join date : 2016-03-29
Location : USA

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