Vulvodynia Support
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» Hope to all my suffering ladies
Help please don't know what to do now?  EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Help please don't know what to do now?  EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Help please don't know what to do now?  EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Help please don't know what to do now?  EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Help please don't know what to do now?  EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Help please don't know what to do now?  EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Help please don't know what to do now?  EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Help please don't know what to do now?  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!
Help please don't know what to do now?  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


Help please don't know what to do now?

4 posters

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Help please don't know what to do now?  Empty Help please don't know what to do now?

Post  Jo44 Mon Dec 14, 2015 7:18 pm

My problems started in Nov 2014, with a UTI, then it felt like it was still there even though samples came back negative. After about 3 weeks of feeling like I still had it and courses of antibiotics etc I then developed burning and soreness on my vulva.

I got put on Amitriptyline initially by the GP but by Feb of this year and increasing to 60mgs she decided to refer me to a Gynaecologist. I saw him that month and by then the burning had subsided but I had pelvic discomfort, urethral discomfort and soreness in the vulva. He wanted me to reduce the Amitriptyline and start Lyrica/Pregabalin at 150mgs a day. By April I was still having urethral discomfort and a feeling in my urethra like I still needed to pee even after going. He decided to take me into hospital and do a biopsy of the vulval tissue and a urethral rigid Cystocopy and dilatation. This did help so maybe it needed stretching a bit!

However, I have had many weeks/almost months in between where I have had no V pain at all and it's been amazing and then for no reason it starts up again, which is depressing! I'm in a flare again right now! My Gyni now isn't sure it's Vulvodynia anymore as I told him I'd been suffering bad fatigue etc & I'd had multiple blood tests done to rule anything else out, I mentioned I was concerned it might be CFS & he immediately said oh well women can get vulval pain with that, and went into say that he thought it was part of something bigger/else! He did get me an appointment for an internal scan as I'd had a flare up after having sex with my husband on top & used to get deep discomfort before V in that position too.

I'm feeling very lost and will be ringing my GP tomorrow to discuss it! I'm still on Amitriptyline and Lyrica, although I did try and reduce the Lyrica as if gone upto 225mgs for about 6 weeks before getting bad fatigue, foggy head, headaches, back tension etc! We thought it might've been the Lyrica and although those things got better my soreness is bad again! Oh what to do!

Please can anyone help or offer advice?

Jo44

Posts : 35
Join date : 2015-02-10

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Post  PainBlogger Mon Dec 14, 2015 8:37 pm

Did you have any symptoms of fatigue before the UTI triggered the vulvodynia? Your doctor is right that vulvodynia can associated with CFS and broader chronic pain conditions like fibromyalgia. It can be difficult to ascertain what is an 'original symptom' and what is a result of medication. As you'll know, both amitriptyline and pregabalin can cause tiredness. Just being in pain can also bring about fatigue, especially if sleep if disturbed.

For the vulval pain there are other things you may be able to try such as topical lidocaine gel or other (generally less sedating) drugs such as duloxetine. Acupuncture can be helpful as can physio, osteopathy and psychological treatments to reduce stress. It can be difficult if not impossible to get those non-drug treatments on the NHS though (I'm assuming as you've mentioned a "GP" that you're in the UK, but correct me if I'm wrong.)

My vulvodynia also started after a UTI (and thrush at the same time) last year. I've been through pregabalin and amitriptyline without much success. Lidocaine 2% gel at night for eight weeks did help somewhat to reduce the surface burning. I'm now on duloxetine and it's working the best of all the drugs I've tried.

PainBlogger

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Join date : 2015-07-27

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Post  Jo44 Mon Dec 14, 2015 9:53 pm

Hi Painblogger

Thanks for your reply. No I didn't have fatigue before V, but the fatigue only happened 6 weeks after increasing ,y dose of Lyrica to 225mgs a day, and literally happened over night. I didn't have any V pain whilst I had the other things going on though.

About 5 weeks ago I started Juice Plus, which is a whole food supplement and I've found my other symptoms have improved greatly. The upper backache was helped with massages. She said I had a lot of tension in my back in that area. Mind you I was also reducing my Lyrica by 25mgs per week. From 225mgs back to 150mgs. I don't get disturbed by my pain at night, only during the day when I have it. It's only when I wake up and get washed and dressed that it becomes apparent for that day. I never wash with soap only water down there. Only shampoo & condition my hair leaning forwards etc etc.

I haven't tried Lidocaine yet, and my gyni has mentioned it previously, but never got round to prescribing it. I'm sure the other GP I spoke to said only the gyni could precirbe it, I don't know if that is right or not?

I'm currently seeing an Osteopath, tomorrow is my third session with him. So I'm hoping for great things! Lol my lower back pain in much better but the V has been bad the last few days.

I tried Accupuncture back at the beginning of the year when I was seeing her for anxiety and anti depressant withdrawal. Sadly it didn't help!

Jo44

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Post  PainBlogger Mon Dec 14, 2015 10:15 pm

GPs can prescribe lidocaine, but it's quite possible the average GP may not wish to start prescribing it unless a gynaecologist or pain specialist has asked them to or has written the first prescription.

Good luck with the osteopathy Smile

PainBlogger

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Post  sgw11 Tue Dec 15, 2015 7:26 am

Hey Jo44,

depending on where you are from I suppose, you can get lidocaine over the counter. I'm in Australia and don't need a prescription for it. Might be worth giving it a go!

sgw11

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Post  Jo44 Tue Dec 15, 2015 5:56 pm

Hi

I spoke with the GP today & she basically said the reason I'm in pain is cause I'm on a once a day dose & nit twice a day as its licences for!

So my options are:

1) match the doses eve & am


2) switch to gabapentin

3) come off all together???

She left me to think about it. She said the Gyni would sign me off as he's done all he can do!!

However I did manage to get her to refer me to a psysiotherapist for pelvic pain! She did query it at first but when I said i read about it helping others on a forum due to tight pelvic muscles then she said ok I'll refer you! Well that's a start I guess. I'm going to see how things go at the one dose and add in a morning dose if I need to. I'd been on one dose since Feb and still had periods of good and bad so I don't know!

Didn't get to ask about lidocaine but I am in the UK so can't buy it over the counter here sadly.


Thanks ladies xx


Jo44

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Post  PainBlogger Tue Dec 15, 2015 9:30 pm

Yes, Lyrica is usually taken in divided doses - twice or three times a day. I'd have thought though that after several weeks on it, the base rate in the body would be fairly stable - i.e. a whole dose isn't going to be metabolised in just twelve hours leaving you without any in your system, it takes a while to pass through.

Re: lidocaine. Vagisil cream is available without prescription in the UK, but, unlike the prescription lidocaine, it contains fragrance and various other excipients that can irritate some people. There's also Lanacaine cream (3% benzocaine) available, but that too has fragrance and various potentially irritating excipients. Instillagel 2% gel is available from pharmacies (it wouldn't be out on the shelves though as it's a P medication) - however, I doubt the pharmacist would want to sell it other than for its intended use (installing catheters) plus it's about £30 a box.

I hope you get some luck with the physio.

PainBlogger

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Post  WaahwaahUK Tue Dec 15, 2015 10:26 pm

Jo44, I've just thought after I've replied to your message this evening. Can't remember if I said but if you find your gynae symptoms flare after osteo session or physio, don't be alarmed but mention it to them. It's happened to me, and in November I had a particularly nasty flare and I noted down all my symptoms including back and knees etc, and shows it to my osteopath. He's now adjusting what he's doing which I've found a lot easier. I do think when you have treatment like this from my experience it is possible to flare up in the days afterwards and they need to know so that they either slow down or adjust their process for you. My osteopath said to me that my pain threshold is high because of being in constant pain so I'm probably allowing him to do too much too soon at times and then suffering more later.

WaahwaahUK

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