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

» Please tell me this can get better
Questions regarding symptoms EmptySat Jul 18, 2020 7:38 pm by sammykramer

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

» How I cured my Vulvodynia!
Questions regarding symptoms EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Questions regarding symptoms EmptyWed Aug 14, 2019 2:38 am by agtoronto

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

» IMPORTANT FOR UK SUFFERERS
Questions regarding symptoms EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Questions regarding symptoms 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!
Questions regarding symptoms 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


Questions regarding symptoms

3 posters

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Questions regarding symptoms Empty Questions regarding symptoms

Post  Delilah1 Sun May 05, 2013 3:45 am

Before the pain and burning of vulvodynia started I noticed very defined reddish purple lines on the inside of my labia minora from the urethral opening down to the bartholins glands. On the days when the pain is at its worst they are more visible and seem to fade when the pain is more tolerable. Does anyone else have these lines?

Delilah1

Posts : 55
Join date : 2013-04-24

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Post  Sarah001 Sun May 05, 2013 11:01 am

Yes! I have the exact same thing! A GP thought it was lichen planus in linear formation (it wasn't) but my current physio says it's where the pelvic floor meets the bones which makes more sense as I have very tight pelvic floor muscles. On good days they are barely visible but like you on bad days they are very dark red and obvious. I've never come across anyone else who described theirs as lines before, have you had your pelvic floor checked?
Sarah001
Sarah001

Posts : 1164
Join date : 2010-06-11
Age : 50
Location : UK

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Post  Delilah1 Sun May 05, 2013 2:40 pm

Thank you for responding! Just knowing someone else has noticed the same thing is so comforting. I don't want to bombard you with too much information but I really want to know if we have anything else in common.
This all started last September. I noticed a fishy smell when washing with soap. While waiting to see my Dr. had sex with my husband one night. When he entered it felt like i was being cut with razor blades near the urethra. Never had that before!! I had been very active for the previous 3 years. Exercising, lifting weights, and then bike riding...(wonder if that had anything to do with it?) Started having burning and swelling in the vagina and vulva. When it was at its worst i felt a throbbing inside on my cervix. Then the whole vulva turned red. I have red spots at 5 and 7 oclock. I have never had a yeast infection and this was the first time I have ever been diagnosed with bacterial vaginosis. All STD tests were negative for me. Dr. gave me vaginal metrogel. I took one dose and had a reaction. Lump in my throat and numbness/tingling in my hands and feet. Felt like I was being poked in the feet at times. Stopped using it and did 5 days of peroxide douche. The BV went away but the burning never did. Sometimes I have shooting pains in my clitoris and now bladder discomfort at times. I do have a history of IBS and headaches. Now here is the strangest part--- Days after sex with my husband he started having burning/pain when he urinated. He went to the doctor. They found no bacteria in his urine. STD tests negativ. Gave him doxycycline just to see if it would help. It never helped. The pain spread to his bladder and then prostate. They gave him Cipro. That didn't help. He went to a urologist. Said he had nonbacterial chronic prostatits. He has been miserable. He read the book "Headache in the Pelvis" and got his doctor to send him to Physical Therapy. I have been doing the stretches/exercises from the books "Ending Female Pain" and "Heal Pelvic Pain" We have told all of the doctors about our symptoms starting at the same time. They have no answers. Just did STD tests. Is this just a coincidence or is there some kind of virus causing this???
My pain is better than it was 5 months ago. The burning is still there but gets worse at times. I can't wear pants because they really irritate me. I don't have discharge. If anything I am more dry. I am 45 years old.
Dr. gave me estrace cream but it doesn't seem to help. My periods are still normal. I've never taken birth control. Thank you for listening!! Can you tell me about yourself?

Delilah1

Posts : 55
Join date : 2013-04-24

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Post  Kathye10 Sun May 05, 2013 10:10 pm

Hi Delilah,

I don't mean to butt in but I read that you and your hubby both had issues around the same time. I wonder if you guys have some sort of infection (bacterial) that wasn't picked up through testing. I bring this up because it happened to me. I'm still trying to figure out what caused this for me, but there are really only two possibilities, bacteria or pelvic floor dysfunction or a combo of both. On some cultures I would show up negative for both yeast and bacteria (I've been to several Dr's in the past 5 months) and others I would show positive for bacteria. One of the Dr's did a DNA probe test to rule out bacteria's that don't show on normal cultures. They found one that doesn't normally show called, Mycoplasma hominis. I'm being retested for it now to see if it's still there. There is also one called Ureaplasma that can cause bladder related issues in both men and women. Both need to be treated for awhile....from what I've heard anywhere from 1 month to 6 months on antibiotics. Mycoplasma reacts to doxy long term, and I think Ureaplasma reacts to Z-pack long term. Sometimes us women (men as well) can be carrier's and not have it actually infect us, but maybe the BV that you had (unbalance in PH) brought one of these to surface. I obviously don't know your entire situation but you and the hubby might want to have your Dr look into it. Another member here had Ureplasma and once she did a long cycle of antibiotics her V went away. This is why I'm retesting, because if that's all it is, I will gladly take the antibiotics. Good luck! Very Happy
Kathye10
Kathye10

Posts : 82
Join date : 2013-02-18
Location : Los Angeles

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Post  Sarah001 Mon May 06, 2013 1:04 pm

Hi again, the lines of red skin seem to be almost where our similarities end! Me and my partner of the time were using condoms as contraception so there was never any question of him getting anything, I tested negative for all stds and BV too and I didn't have any BV symptoms either. Mine is definitely due to my pelvis being severely unstable and my pelvic floor being very very tight and it happened after a few months of seeing a physio who stupidly thought using more pelvic floor activity might stabilise my pelvis and it just brought on vulvar pain and didn't stabilise me either. I do lack discharge like you however and find I'm very dry (I'm nearly 40) but I think for me the lack of blood flow to the area and the muscles being clenched all the time are behind that. It does seem odd you both got symptoms so close to each other and I think Kathy is right it is worth checking for the more unusual bacterias but it could just be either coincidence or, don't be offended, your husband may be bringing his symptoms on phsycosomatically which is easy to do if someone around you has symptoms. I'm not suggesting he's lying but you know how it is when someone close has for example a vomiting bug and you convince yourself you feel sick and then don't get it so you know you're bringing it on yourself? I hope you're not offended by that it is only a suggestion.
Sarah001
Sarah001

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Join date : 2010-06-11
Age : 50
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Post  Delilah1 Mon May 06, 2013 2:49 pm

Thank you Kathy and Sarah for replying. I appreciate your input and opinions. I will definitely make an appointment with another doctor and discuss the mycoplasma and ureaplasma connection. I will also ask my doctor for a PT referral and give that a try. This whole mess is a nightmare. I just want to be normal again. Just like everyone else on this forum. I wish you good luck!

Delilah1

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Join date : 2013-04-24

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