Vulvodynia Support
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» Hope to all my suffering ladies
some relief EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
some relief EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
some relief EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
some relief EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
some relief EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
some relief EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
some relief EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
some relief 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!
some relief 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


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Post  jules Sun May 09, 2010 3:25 pm

Hello,

I am going to again recommend pain clinics as a help to women w/ Vulvodynia. I visited numerous gynecologists. Gynecologists are not known for treating pain. I am feeling much more hopeful now that I have a connection with a pain clinic. I have had two spinal blocks. For me, neither helped. I take 3000 mg of gabepentin a day. That helped someone but, the pain was still there. The nurse practitioner at the pain clinic added Lyrica to what I am already taking. Lyrica seems to have taken the edge off of the pain. I still have some pain. But, when I look back, I have less pain. It is not as severe. I was taking 50 mgs of Lyrica. I will start taking 75 mgs of Lyrica today and I will continue to take Gabepentin. Lyrica is used for patients with nerve pain. My doctor also gave me a prescription for Vicodin. Vicodin for me, helps take the edge off of the pain. This has helped a lot. Also, I am being referred to physical therapy at a clinic that specifically helps women with vulvar pain. I also continue to use a foam donut to sit on. I can tell a huge difference when I sit in a chair without it. I am definitely not pain free. However, I have less pain. Will keep you posted. Feel free to ask questions...I want to help others who suffer with this complicated disorder.

Julie

jules

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Post  Sebby (Admin) Thu May 13, 2010 6:41 pm

Hi Julie

I have thought about asking to be refered to a pain clinic.

I wasnt sure though as I am being refered to a vulval clinic within the next six weeks and Im wondering if I should wait to see them first?

I could ask my GP as I am seeing her in a couple of weeks (trying to get a smear done! and Im terrified!) so I could ask her to refer me.

I just wondered if it would complicate things seeing two consultants for the same disorder??

Sebby
xxx
Sebby (Admin)
Sebby (Admin)
Admin

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https://vulvodyniasupport.forumotion.net

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some relief Empty response-don't wait around in pain

Post  jules Thu May 13, 2010 7:36 pm

are you seeing a gynecologist who specializes in Vulvodynia? My experience with every single doctor I have had (at least Cool is that they may be able to diagnose the disorder but, they do not usually know how to treat the pain. I went to a vulvar clinic to get the diagnosis (Mayo Hospital). the doctor i saw told me to increase my neurontin. but, when i called a couple of weeks later in horrible pain, she told me she didn't know what else she could do for me. I finally saw this so called specialist (one of 6 docs who treats the disorder in Minnesota). In that appt. I was the one who asked to have a spinal block referral. she didn't really seem to know how she would treat the pain. The pain clinics specifically address the pain. The doc and nurses at the pain clinic knew what Vulvodynia. they continue to add meds to try to help me. I would speak w/ your general practitioner to see what he/she thinks. I would not wait around for 6 weeks to deal w/ horrible pain. But..still keep the appt. at the vulvar clinic. that's my advice. let me know how it goes and what you decided. good luck w/ your pap smear. that is never fun, especially when you have pain.

jules

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Post  Sebby (Admin) Sun May 16, 2010 9:45 pm

Yeah I will have a word with my GP when I go for the dreaded smear!!!

It does seem odd that a gynea who can diagnose Vulvodynia cant actually treat the pain!

I will keep you updated

sebby
xxx
Sebby (Admin)
Sebby (Admin)
Admin

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Location : London UK

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Post  hopeful Sun Jun 05, 2011 6:25 pm

Hi Julie,

Apologies if you have already mentioned this somewhere else on the forum but I was wondering if you could let me know where you got your donut cushion. I was thinking of getting one as I read somewhere that it could help and I work in an office so need to sit all day.

Thanks!
Christine

hopeful

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Post  jules Sun Jun 05, 2011 7:38 pm

here's the site i ordered from. i have four now. i'm collecting Sad hope it helps.

http://www.allegromedical.com/pain-management-c6489/molded-foam-donut-pillow-w-cover-p213745.html

jules

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Post  hopeful Sun Jun 05, 2011 7:58 pm

Great thanks!

hopeful

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Post  noni Mon Jun 06, 2011 12:02 am

Hey Jules

I have always identified with your posts. I was diagnosed with neuropathic vulvar pain back in March, although I had suffered for months with intense burning and aching. Jules, you are spot on with Gynecologists. They have absolutly no idea how to treat vulvar pain ...they just are completely clueless about vulvodynia. If you arent pregnant, have some STD, or need diflucan they are not interested in helping you!

I am on the Ami at 50mg dose. It helps. I had a relapse a few days ago...maybe it was something I ate or my anxiety in general these days. But how could I not be anxious? I am scared the pain will return. It has a mind of its own. So, basically, the burning made a comeback but has now disappeared into the vulva wilderness.

I think this is just something I will need to manage for the rest of my life. Just take it a day at a time. Continue with meds. I know meds arent for everyone, but pain is pain...and I am happy that some relief can be found.

Jules: Have you tried physio yet? I want to but my work health insurance does not cover this. And it aint cheap to treat pelvic pain. Geez, I couldnt have asked for a more expensive condition..






noni
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Post  jules Mon Jun 06, 2011 3:25 am

hey noni, glad to hear you have some relief here and there. i don't have anxiety, just depression that is pretty much gone because of my Cymbalta. Currently, i am on Gabepentin 3600, Lyrica 150 mgs, Cymbalta 90 and Percocet..as needed. I do have a P.T. I have met w/ her a handful of times. interestingly enough, i really do not have pelvic floor issues. i do have pain from sex when it is from behind...the walls hurt. but, my walls are pretty good. I have generalized V. so, i can insert tampons and penis' (LOL)..but, it hurts all over the vulva and is often times on fire. My P.T is referring me to a acupuncturist. I will call this week. So far, i haven't had much relief from my P.T. and my meds are not working too well. I am looking at having surgery for a neurostimulator. the surgery will probably be in july. in the meantime, i'm hoping the Cymbalta helps. otherwise, Ami is next. years ago when i tried it, i did not like it. i tried it to get for migraine headaches. i'm still working w/ the pain clinic. they keep on pulling ideas out of a hat. as long as they do..i will be there to see what kind of magic they have for me. Surprised do you see a physio? Hope you continue to do well. i did have relief awhile back for a good few months...you always feel like it's too good to be true. Enjoy!!!!

jules

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Post  noni Tue Jun 07, 2011 11:01 am

Hey Jules

I havent done physio yet...its expensive and work insurance doesnt cover it. Besides, I am pretty sure my muscles are not to blame for this hell. I have generalised V...meaning pain on the outside and all over. Not a specific area of pain.

I havent tried any other meds for V ... other than amitriptyline. Which I get bad days and good days with. Its a mixed bag really. The pain is so random and its hard to tell what brings it on.

I think alot of the younger gals on here in my age group have vulvar vestibulitis which can be treated with lidocaine and meds. This is where I get confused, since I have generalized unprovoked V pain...I am wondering why my specialist told me to try lidocaine...I havent received it yet because I had to put ina special order in the pharmacy. I am willing to try anything. I ofcourse have a gel pack in the freezer just in case...

noni
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Post  Sarah001 Tue Jun 07, 2011 12:04 pm

I've got constant unprovoked generalised pain too and I was given lidocaine to try. It doesn't mean physio won't work either, last November I thought I was heading into provoked pain only with biofeedback only to find it flared back up again but it shows it can help. There seems to be some confusion about physio only being for VVS and it's not, it's for any type of V.
Sarah001
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Post  jules Wed Jun 08, 2011 2:43 am

I will second Sarah's comment. P.T. is for all types of Vulvodynia. The pelvic walls generally are not the cause of the pain on the outside (could be for some). The pain in the walls for me are secondary to my pain on my vulva. When you have burning pain on the vulva or inside the vagina, without realizing it, you tighten up your pelvic walls. as a result they get tight and for some people, they spasm. For me, they aren't too bad, but i do feel them and they hurt when i have sex in certain positions. If you can calm the walls on the inside, it's possible it won't be as bad on the outside???? It would be worth at least having them checked out by a P.T. who specializes in pelvic pain disorders. as for the lidocaine, it can burn the skin...but, not all women. i can now use it w/out the burning. it generally burns for a couple of mins. it only numbs me for a very short time. But, like you said...try it all! good luck!

jules

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Post  noni Wed Jun 08, 2011 9:42 am

Thanks ladies.

I really appreciate your comments.

Where would I be without this forum ?? Surprised
noni
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Post  jules Thu Jun 09, 2011 10:32 pm

it's so nice to be able to speak freely about pain and treatment options. This forum and our facebook page has been a huge help for me. i stopped checking this forum because i was so busy talking on the facebook site for women w/ vulvodynia. you can write a lot more here and for those who want to remain anonymous, this is a good spot. Noni, are you in our facebook group? it's private. If you're interested, you can let sebby know. she'll add you. otherwise, this is fine too. where are you from? I'm from the US. hope your feeling ok today.

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