Vulvodynia Support
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» Hope to all my suffering ladies
Those With An Autoimmune Disease EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Those With An Autoimmune Disease EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Those With An Autoimmune Disease EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Those With An Autoimmune Disease EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Those With An Autoimmune Disease EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Those With An Autoimmune Disease EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Those With An Autoimmune Disease EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Those With An Autoimmune Disease 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!
Those With An Autoimmune Disease 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- …

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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


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Post  BpCookie Wed May 01, 2013 4:54 pm

Hi peeps, Once again I am searching for the answer to my Lichen Simplex Chronicus. So today I was brain storming, Googling multi health issues that may be related to each other and I came up with one health issue that can cause all my misery and that is an Autoimmune disease. Ive noticed that I have have a high leukocyte count, been losing my hair by the hand fulls, bruising easily, Hypothyroid, Lichen Simplex Chronicus (related to the psoriasis family) and it all points to an Autoimmune disease. Have any of you been diagnosed with an Autoimmune disease? If I could find one answer to all my problems I would do back flips.
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Post  Alana3 Wed May 01, 2013 5:38 pm

Not to sound any alarms, but a lot of what we have goes hand in hand with an autoimmune disease. So you can have one thing and still have the other. I know that IC is considered an autoimmune disease, and lots of people who have IC also have vulvodynia. It also goes hand in hand with IBS (fun shit literally lol), lupus, migraines and TMJ. So you can "cure" or treat one thing and still have the other. I doubt that just one thing is causing your problem, but I guess you never know. I've had hypothyrodism diagnosed (I refused to take any drugs tho, those are crazy potent!), TMJ, migraines, had IC thrown at me (no proof there...yet ugh). My advice is to STOP googling, I know we are all guilty of it. I was convinced I had AIDS because I had frequent yeast infections, was tired all the time, blah blah blah. Truth be told, you're going to give yourself an ulcer thinking you have all these things, when in fact, you probably just have LSC (not just but you get what I mean). Unless you have actually been diagnosed with an autoimmune disease, I would say concentrate on getting the hooha better. And then if something else pops up, then worry about it. But don't borrow trouble! Smile

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Post  Sarah001 Wed May 01, 2013 8:13 pm

They can do blood tests to see if you have autoimmune markers, I'd say to put your mind at rest ask your doctor to perform those along with testing your thyroid etc too then you'll know either way. I've had them done because of my joint problem and it really is one blood test to say yes or no. I'm with Alana on this one and think it's likely you have a few things going on instead of just one that covers all your symptoms, but still it won't hurt to have a simple blood test done to say either way.
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Post  BpCookie Thu May 02, 2013 3:27 pm

Alana and Sarah huns, I guess its just wishful thinking. Im always hoping to find one thing that is causing my multi health issues. My gyno had said something about an autoimmune disease because none of the treaments she tried worked.

Although Google can be a complete nightmare, I have found that it has also helped me on ocassions. The worst thing I ever did was look up VLSC photos. OMG, I freaked out. On a good note, I was having some health problems and the Dr. s couldnt find an answer, so I googled my symptoms, Hashimoto Disease. Which is what I ended up having and looking into that they also found the thyroid issue. I was put on meds and I now feel so much better.

Alana, I found a vlsc specialist but he wants to try his miracle treatments on me. LMAO. uuuggghhh another specialist. I also have an apt with another Dr. to talk about surgery options. Hubby doesnt want me to have any surgeries done until Ive exhausted all treatments. Oh goody, that will be another year of my life wasted.

hugs to both of you

Cookie aka The Burning Bush
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Post  Alana3 Thu May 02, 2013 3:32 pm

At the end of the day its YOUR vagina, not your husbands. Do what you think is good for your body, not what he thinks. If that's the option you're at now- go ahead and do it. But don't say anther year wasted. Usually they won't continue a treatment if you haven't got relief within 6 months anyway. But nothing you try is a waste. But if YOU want surgery do it. Did you call my doctor?

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Post  BpCookie Thu May 02, 2013 8:43 pm

Alana Sweet heart, Haven't gotten around to it.....yet. Ive been having some other pain issues and have been resting in bed, using my Ipad to reply to this board. This morning I got a call from my step mother, she was diagnosed with cancer about 18 months ago and things have gotten worse. So now I am a nervous wreck, crying all the time, having anxiety attacks, I can't sleep and all of this is just making my pain issues worse.

Hopefully when all this mess passes over, I can get back to being myself and will be able to make some phone calls. hugs hun
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Post  Alana3 Thu May 02, 2013 9:16 pm

Be we'll!! I just hate men lol sorry

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Post  cupcake25 Sun Jul 14, 2013 1:53 am

I have celiac disease, which is a digestive autoimmune disease (gluten free diet is the only way to manage it). I often wonder if my body's inability to fight whatever is causing the vulvodynia is related to my celiac. Celiac makes it very difficult to absorb vitamins and nutrients from food, and I still struggle with stomach issues. Perhaps there's another underlying food issue that Ive missed. The only other particularly strange thing that's come up repeatedly in my blood work (which is otherwise spotless) is a lower than normal white blood cell count. Who knows! It's such a tangled mess, so many possibilities.
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Post  BpCookie Sun Jul 14, 2013 6:34 pm

Cup cake hun, Thats very interesting, I have a low white blood cell count as well. Also prescribes a vitamin d boost for my cause mine is always low. I always thought that my vulvadynia was caused by some under lying health issue that the Dr.s havent found yet.

hugs to you
Cookie
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Post  cupcake25 Tue Jul 16, 2013 8:29 pm

Cookie,
I find it very interesting that you have low vitamin d as well! My blood work showed my vitamins were all normal except d, which was on the low side. I haven't started a vitamin d supplement but I've heard it helps.

I'm not as educated on white blood cell count as I'd like to be. I really have no idea what it could mean. My primary doctor doesn't have any answers and referred me to a specialist but I never went. I always assumed it was because of the Depo provera shot, which I believe was the trigger for all of my issues (it does lower the immune system).
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Post  cupcake25 Tue Jul 16, 2013 8:37 pm

Also... like Alana3 said, google can be a baaaad idea lol. I was too convinced I had HIV for a whole miserable month (even though deep down I knew that wasn't possible) because of the muscle pain, weight loss, yeast, fatigue. It's just so frustrating to feel like you're an inch away from discovering the true underlying issue. I've been trying to research with a grain of salt. Easier said than done though.


<3 cupcake
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