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» 7 months since the diagnosis
Looking for suggestions or encouragement  EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Looking for suggestions or encouragement  EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Looking for suggestions or encouragement  EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Looking for suggestions or encouragement  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!
Looking for suggestions or encouragement  EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

» Vestibulectomy next week in London!! - questions!!
Looking for suggestions or encouragement  EmptyWed Apr 24, 2019 8:32 pm by HedvigB

» Dating with Vulvodynia and Vaginismus advice
Looking for suggestions or encouragement  EmptyFri Apr 19, 2019 10:25 pm by Tartufo

» Research Participants Needed!
Looking for suggestions or encouragement  EmptyThu Apr 11, 2019 2:09 pm by PelvicPainProject

» Does anyone else have Endometriosis?
Looking for suggestions or encouragement  EmptyMon Apr 08, 2019 7:54 am by Jo44

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


Looking for suggestions or encouragement

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Looking for suggestions or encouragement  Empty Looking for suggestions or encouragement

Post  ryn207 on Sat Jan 13, 2018 12:10 am

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the medicine the itching got a little better for a couple days, but then continued. At this point I was told to look into things I could be allergic to. I changed my detergent to Dreft, switched my soap, but it didn't change anything. When I was retested again it showed that I no longer had any type of infection, yet I was still itchy both vaginally and near my anus. I also started feeling a lot of pain if I walked longer than 10 minutes. It felt like needles and my nerves were super sensitive. Intercourse was also of course very painful.

I started seeing a dermatologist in September of 2016. I was put on Clobetasol Propionate and told to use Aquaphor over it to avoid drying out the skin. I later received a Kenalog injection into my lower back muscle as well. The injection did nothing except cause a lot of facial swelling that lasted over 6 months. We later added Gabapentin, Tacrolimus, Amitriptyline, weekly Diflucan, and Kenalog injections directly in my vulva and near my anus. The Amitriptyline, Clobetasol Propionate, and Tacrolimus helped a bit, but I was still in some pain and had lots of itchiness.

My dermatologist then sent me to a Physical Therapist in May of 2017. I worked with 3 Physical Therapists and went twice a week where we did stretches, internal PT, dry needling, and used essential oils. The pain when I would walk stopped, but I still had itching. I got another yeast infection in June which I treated with yogurt and Diflucan. At that point I stopped the Clobetasol Propionate (which can cause yeast infections ironically), and Tacrolimus. After a few weeks I went back on the Clobetasol Propionate and Tacrolimus and for some reason it actually started working. For 5 weeks I had almost no itching. Intercourse was still a little uncomfortable, but not painful. At the beginning of August I started feeling like I was getting a yeast infection. I treated it again with Diflucan and yogurt and took a couple days off of the Clobetasol Propionate and Tacrolimus. Since then some of the itchiness has gone away, but not 100%.

I no longer go to PT since I hit a plateau and they felt that PT was no longer making progress. I started going to therapy about 6 months ago, but I truly feel that I would be fine if only this pain/itching would just go away, I continue to see my dermatologist and she feels like I just need time. I am also seeing a gynecologist who specializes in vulva disorders. She currently has me using CBD Oil every day. So far I haven't noticed much of a change.

While this has been an extremely draining and expensive process, I am lucky to have supportive family and friends and a very understanding boyfriend. I know giving up isn't an option, but I just don't know what to do anymore. Nothing has been able to take all the pain and itchiness away and I'm just looking for any advice at this point.

ryn207

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Post  Mintaherb on Sat Jan 13, 2018 3:35 am

Hi, I'm really sorry to hear about everything you've been through! I'm by no means a doctor, but here are some general thoughts:

You mention at the start of your story that you were treated for a bacterial infection. Were you retested to check that the infection had been cured?

At the time of the first yeast infection, can you think of anything that might have triggered it? For example, had you recently started hormonal birth control (this is known to cause yeast infections and vulvadynia)? If so, stopping the hormones may help things improve. Or had you recently taken antibiotics, which can disrupt your gut microbiome, leading to a disrupted vaginal microbiome (and therefore a yeast infection)? If so, then probiotics may help. Also, if you and your boyfriend don't use condoms then he could have caught the yeast infection from you and you could therefore be passing it back and forth. It could be an idea for him to get tested and treated too.

You sound like you've been on a lot of drugs, in a fairly broad/scattered approach, rather than your doctors actually trying to discover the root cause of this and therefore giving you the correct treatment. You could try seeing a naturopath or functional medicine practitioner, who would approach things from this perspective. If you're in America, I've heard about the Centers for Vulvovaginal Disorders, and especially about its director Dr Andrew Goldstein. One final thing - if you found that the immunosuppressant treatments seemed to help, and itching does suggest an allergy/immune involvement/inflammation, Dr Goldstein suggests taking Montelukast/Singulair. It might be worth a try. Good luck and don't give up!

Mintaherb

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Post  ryn207 on Sat Jan 13, 2018 7:45 pm

I was retested twice and both times came back clear for infections. I tried thinking of things that happened around the same time it started but I've been on the same birth control for about 3 years and I can't remember the last time I took antibiotics. The PT's I went to had more of a holistic approach and had me start taking probiotics that are good for vaginal health. I have been taking them every other day in hopes that they at least lower my chance of yeast infections. My dermatologist thought I had Lichen Sclerosus, but I would think over a year of treatment would've taken care of it by now.

When I first had the infections I did have my boyfriend go to the doctor to see if he had a yeast/bacterial infection. The doctor told him you can't test men the same so he just gave him cream in case he had one, but he's never had any symptoms during this whole process.

I haven't tried a naturopath or functional medicine practitioner so I will definitely look into that! I also bring up Montelukast/Singulair at my next appointment. Thanks for everything!

ryn207

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Post  Mintaherb on Sat Jan 13, 2018 9:23 pm

You're welcome:). Also, this is a totally random thought, but might there be any possibility that you have threadworms, as these can cause itching in the vulva and anus? If not, it might still be worth coming off hormonal birth control and giving things 3-6 months to see if they settle down. Sometimes birth control can seem to suit your body initially, but then issues can start happening a couple of months or years later.

Mintaherb

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Post  ryn207 on Tue Jan 16, 2018 1:19 am

I don't think it'a threadworms. I looked it up and the itching is the only symptom I have and mine doesn't necessarily itch more in the morning. I have my annual coming up so I'm going to bring up your birth control suggestion. Thank you again!!

ryn207

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Post  ryn207 on Thu Jan 03, 2019 1:28 am

Hello! Still here another year later. I did a third round of PT. It helped with my tight pelvic floor muscles and I now have less pain during examinations, but still painful intercourse.

I'm seeing a Chronic Pelvic Pain specialist who now has me trying Valium suppositories. The combination of that and the 25mg of Amitriptyline helped a lot. Most of the itching in my vulva went away so it was just some around my anus and then the pain during intercourse. I was getting extremely drowsy so we tried lowering my Amitriptyline to 10mg. Unfortunately that didn't help and the itching got worse. Now we increased the Amitriptyline again, but I'm not getting the same results. Now I actually think I have a slight yeast infection, but my doctor said they can't confirm it with a test right now since I'm currently on my period.

I try and keep my mind off this, but it's just so hard especially when my symptoms are bad. I'm trying to find a Sex Therapist in my area. I've heard some positive things. I'm hoping it would help with my feelings towards this diagnosis and how connected it is with intimacy. Unlike others, I'm lucky that my vulvodynia really doesn't affect my clitoris, but unfortunately I've never been able to orgasm. When I could have sex without pain before I had made peace with the fact that I may never be able to orgasm, but now it's like if I can't orgasm and sex is painful instead of pleasurable, what do I have? I'm 26 and hate that I feel so unappealing and just have zero want for intercourse/foreplay because what is the point? My boyfriend is understanding, but I just wish it were easier for us to be intimate and both feel pleasure. There's just a part of me that feels like I will always feel guilty that the girl he started dating is no longer the same person.

Sorry for the word vomit. Just needed to vent and see if there is anyone out there with advice.

ryn207

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Looking for suggestions or encouragement  Empty Progesterone may be the answer

Post  Gaby on Thu Jan 03, 2019 11:09 am

Hi ryn207,

My nightmare also started after several yeast infections.
I am now under treatment ( gabepantine cream with pregabaline).
In the beginning i did notice i got better, I even was able to have intercourse without pain!! but after 3 months my dream of getting better was over.

During this period i got pregnant (yes i really enjoyed the painless sex hehe), unfortunately I had a miscarriage due to other circumstances but what i did notice is that my symptoms were almost gone during the pregnancy ( my symptoms:a lot vulvar pain while remain sited for a long time and incredible painful intercourse).

I read that during pregnancy your progesterone levels are really high to help your uterus to develop in the right way for the baby.
After losing my baby ( at 9 weeks) I had to wait a few weeks before my menstruation got back to normal. When it finally did, i noticed that the first 14 days of my cycle I was in a lot of pain, and after ovulation, it got better (with ovulation you release progesterone).

Now i am pregnant again Smile (hopefully everything goes fine this time) and I have noticed the same! my symptoms are not gone but a lot better (now my body produces a lot of progesterone).

I am not sure if the root cause of my vulvodynia is hormonal, since i have never taken the pill or other contraceptive drugs, but i must say that i see a link with the progesterone. Maybe you should check your hormonal levels? I dont see on your previous posts if you did this already but it might be worth it.

We need to explore every possibility to get finally rid of this nightmare!.

Good luck and keep us post on your progress!

Regards,
Gaby.

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Post  ryn207 on Wed Jan 30, 2019 1:36 am

@Gaby

I'm so sorry to hear about everything you've gone through! I haven't noticed a difference with my symptoms during my cycle, but I have been on birth control this entire time. I'll try to start pay more attention to it.

Thank you and wishing you a happy and healthy pregnancy!

ryn207

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