Vulvodynia Support
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» Hope to all my suffering ladies
Bad day, bad week... EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Bad day, bad week... EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Bad day, bad week... EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Bad day, bad week... EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Bad day, bad week... EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Bad day, bad week... EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Bad day, bad week... EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Bad day, bad week... 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!
Bad day, bad week... 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 …

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Post  WaahwaahUK Fri Jul 29, 2016 5:40 pm

I feel like I'm hitting a place now of real uncertainty. My osteopath now thinks I've probably had the right treatment for my pelvis and back problems and that the vulva and labia pain I still have could be residual, neurological pain. Makes sense as my back apart from a few blips in recent months is improving. My vulvodynia pain has improved greatly in the last say 12 months (before then I could barely walk with it and it felt like something was slicing my skin). So now I'm at a point where I've started women's health physio and am now doing some internal sweeping. This is sooooooo hard! I feel like it flares my pain, so I'm going gently, and persevering. I've ordered some dilators which I will start using too soon. I don't understand how the dilators may help with the vulva pain? Do they ultimately help? I'm having a day where I feel anxious about the future with this. Am I as healed as I ever will be? I hope not. It's so hard when I can see my progress, and yet on days like today I worry that this is it. I was never conscious of my vulva until all this happened to this degree! It feels so highly sensitive I wonder if it will ever go away! I really hope after a few weeks of internal work I can come back and tel you ladies something more positive. Tonight I just feel fragile, alone in this, and fed up with the pain - even though I've been in far worse pain than this previously with it. Positives - I can wear jeans again with only some discomfort most days. I can walk my dog most days with discomfort rather than slicing pain. I can consider going places a little more easily other than just to and from work. I know these are evidence of progress, just having a bad day...

WaahwaahUK

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Post  emalita Fri Jul 29, 2016 6:05 pm

I'm sorry to hear that you're discouraged, but just know you are not alone in your feelings. I know exactly where you're coming from, and even though there is progress, sometimes it seems too slow to be truly excited about it. I've also found that even though my pain, like yours, used to be so much worse, I am now so hypersensitive to every single feeling down there that it seems as if anything other than 100% fixed just isn't good enough.

I've also been there where the very treatments that are supposed to help us get better provide the greatest discomfort. I haven't started my dialator therapy yet, but I have read from other women on here that it can take a really long time to see lasting benefit. I think the main focus is to retrain the nerves that not all touch is bad touch...essentially trying to desensitize them, I guess.

I hope you're able to stick with your therapy and you continue to see lasting progress. I saw a quote once that said, "positivity is not a cure for chronic illness - reality and honesty about symptoms is not negativity." I believe this is very true; so just know it's okay to have bad days Smile

emalita

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Location : USA

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Post  PainBlogger Fri Jul 29, 2016 6:50 pm

Sorry to hear that, WaahWaah. It can be such a long road to recovery and it's perfectly natural to get frustrated and feel discouraged.

Dilators - I think it's partly desensitization and partly relaxation of the PFMs that provide the benefits in terms of reducing vulval pain. I spent so long taking one step forward and one back with them but then about seven months ago now that became two steps forward and one back and then I was just proceeding forwards. They've definitely fixed my internal pain about 95%. As to my external vulval pain - that had started to improve before I started to make progress with the dilators. So I can't tell for sure how much the dilators contributed to the reduction in that. But everything is so close together down there that I figure that anything that help lengthen/relax muscles and hence reduces tension that may set off nerve pain has to be a good thing.

It's easy to say focus on the positives but, in my experience, it does help to look back to the beginning when having a bad day and remember how much progress one has made from the absolute worst times. And I know hearing that other people have got better from this can just invoke that feeling of 'what am I doing wrong?/'how have they managed to get better?'/'they're just luckier than me' and so on. But, the fact that other people have got better means it's quite possible that you can too Smile

There are some good books on mindfulness that you may find helpful. I was very sceptical about mindfulness but there are huge amounts of evidence that it is helpful for chronic pain patients and I'm sure being more mindful has helped me with the anxiety and depression associated with my chronic pain.

I hope you see some more progress very soon.

PainBlogger

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Post  PainBlogger Fri Jul 29, 2016 6:54 pm

https://www.amazon.co.uk/Mindfulness-Health-practical-relieving-restoring/dp/074995924X/ref=sr_1_1?ie=UTF8&qid=1469818375&sr=8-1&keywords=mindfulness+for+health - this is an eight week programme. If you don't want to pay out a tenner, there's always the public library.

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Post  WaahwaahUK Fri Jul 29, 2016 8:22 pm

Thank you both, so much... I think I spend so much of my life reassuring other people about their feelings and worries and some days I just feel so, so drained from this. The psychological damage is so vast. I'm a trained counsellor myself and I totally recognise in myself the chronic anxiety that has come from this condition for me, and the daily fear. I really appreciate your positive words. I know in the early part of last year I could barely walk without my teeth permanently gritted. Those days are far, far fewer now. I will persevere as I know I'm really only in the early days of actual physio in that area and dilators etc. I so desperately want my life back. I'll definitely look into mindfulness more, thanks. Thank you for listening. I just had to have a human moment today. I'm so exhausted from putting on a front. Thanks ladies.


Last edited by WaahwaahUK on Fri Jul 29, 2016 8:23 pm; edited 1 time in total (Reason for editing : Spelling error)

WaahwaahUK

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Post  WaahwaahUK Fri Jul 29, 2016 8:25 pm

Painblogger it does help to know that others have had times of one step forward two steps back. I feel like that's where I am now, but it encourages me to know others have experienced that early on in treatment x

WaahwaahUK

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Post  PainBlogger Tue Aug 16, 2016 1:43 pm

How are you doing now, Waahwaah? Any better?

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Post  WaahwaahUK Tue Aug 16, 2016 3:35 pm

Hi PainBlogger. Bit better again thanks! I am slowly using the smallest dilator daily now for a few minutes with less discomfort. My back is more stable again now too. The vulvodynia pain seems to have settled back to bearable again too. I am unfortunately on antibiotics for a tooth infection so hoping desperately that doesn't upset things down below... I have my next physio on Thursday so plan to post an update then. Thank you so much for asking. Hope you are continuing to improve!

WaahwaahUK

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Post  PainBlogger Tue Aug 16, 2016 4:33 pm

Good to hear, Waahwaah. Hope physio goes well on Thursday. I'm generally doing well, thanks. A few not-so-good days here and there, but nothing horrendous Smile

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