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Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

Comments: 6

Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

Comments: 4

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 4

Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

Comments: 2

6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

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Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 5

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

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Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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Anyone else feel like this?

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Anyone else feel like this?

Post  bluekangeroo on Mon Nov 25, 2013 11:46 am

Hi Ladies, been a long time since I've posted on here, I've had my head down trying almost everything I can think of to fix my pain, but have still come up with nothing.

Here's what I have discovered in the past year, am plonking it all down here in case it sounds familiar to anyone?

1) my pain is better when I lie down flat and worse for sitting for prolonged periods (especially on hard chairs) and when working or standing for a long time.

2) my pain seems to be related to my back too, which also gets really painful if standing for too long, walking for more than 10 mins or sitting for long periods.

3) my pelivis was hugely mis-aligned and seems it has been for about 10 years - have been working with a Physio now for a year and apparently it is straight now - but I still have the v pain.

4) my pain appears to be a little bit cyclical. Always easing off just before my period and for the first few days of period and then flaring up badly towards end of period and just after. The rest of the month seems quite random, but am mostly in pain about 25 days to 5 in a month.

5) My Women's physio found lots of trigger points last year but they have now mostly gone, without any internal PT - just from the work I have been doing to straighten out my pelvis. So tight muscles are no longer part of the problem

6) Sex or wearing tampons makes the pain worse. Although when I am in pain I can touch most areas of the vulva without feeling exactly where the pain is coming from, its just sore all over.

7) My Physio can find many sore trigger points externally around my lower back and piriformis - top of the legs, I sometimes get sciatic pain down the backs of my thighs too that make it even more uncomfortable to sit.

Cool my Physio did something odd with acupuncture needles on my bladder meridian on my ankles that made the pain go away completely but I had this horrible pressure pain around my lower abdomen, and felt like I needed a wee all the time. Then the pain would reverse back to no pressure pain and lots of v pain, but rarely both together, I still sometimes get days when I feel this pressure pain and feel like I need to wee all the time, but have less or no v pain... very weird... it's like the pain moves and presents itself somewhere else, and no it's not a bladder infection - have checked!

9) Pain clinic say the problem is just super sensitive nerves from years of being squashed. And it won't ever get better, I just need to learn to deal with it.

10) I am also a coeliac - auto immune condition that occurred about the same time as the v pain, maybe a few years before.

11) I was on the pill for 10 years before having my first child 8 years ago, went back on the pill between children but then had to come off it about 4 years ago due to migraines, oddly my pain has become more frequent and more intense in last 3 years. Co-incidence?

12) I'm also hypermobile - apparently. Not sure if that is relevant or not?

13) I was told I had a skin condition a few years ago but my current gyne Wendy Reid thinks I don't - my skin is just a bit irritated from all the pain.


Things I have tried:

Amatryptaline - made me feel awful
Pregabalin - made me feel dizzy and tired
Physio
Women's Physio
Chiropractor
Acupuncture
Yoga
Pilates
Lidocaine
Steroid Creams
Meditation
Relaxation
CBT
IFT

Things am gonna try this month:

Going back on the pill - progesterone only (gyne's cunning plan)

Trying Chinese Herbs and more Acupuncture

Am just plonking all this down here in case it strikes a chord with anyone else. And together we might have a Eureka moment!?

Am close to just giving up and trying to learn to live with it, although it's a pretty depressing concept. Feel like am living only half a life at the moment, and whilst I would never contemplate suicide I don't think I would seek treatment if I got a terminal disease. I'm really starting to think that my family would be better off without me so they can move on and find someone new who can have sex with my hubby and run around being lively with the children instead of mum forever having to have to go lie down... and fighting with my partner often over lack of sex. Hate this thing so much...

Sending lots of love and best wishes to you all...

Ax

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Re: Anyone else feel like this?

Post  Alana3 on Mon Nov 25, 2013 12:48 pm

Yours seems muscular not nerve unless something is pushing on a nerve? Literally the nerves in my vagina all had to be removed but it was more skin related if that makes sense....

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Re: Anyone else feel like this?

Post  bluekangeroo on Mon Nov 25, 2013 12:53 pm

Hi Alana,

Was your pain constant 24/7? Is that how you knew it was just nerve related?

Am not sure if muscular or nerve - seems most likely that something is squashing the nerve which is already pissed off with me from years of being squashed under a mis-alinged pelvis. But sometimes whether due to hormones or position, the pressure on the nerve must release a little to give me those precious few days of relief!?

I dunno - it's so baffling...

You'd think though that if the nerve was damaged beyond repair like the pain clinic suggest then I wouldn't get any good days at all?

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Re: Anyone else feel like this?

Post  Alana3 on Mon Nov 25, 2013 1:12 pm

No my pain was only when I tried to provoke it sex, tampons, sitting sometimes ick... like if you touched it it felt like acid was on my skin Sad that sounds different no less painful however where do you live?

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Re: Anyone else feel like this?

Post  bluekangeroo on Mon Nov 25, 2013 2:39 pm

Ah provoked pain, mine is definitely unprovoked.

I think.... I never say definitely!

I live down near London, between London and Cambridge.

A


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Re: Anyone else feel like this?

Post  Leslieg on Mon Nov 25, 2013 3:08 pm

Hello! I'm wondering....have you had an MRI to assess nerves?

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Re: Anyone else feel like this?

Post  Alana3 on Mon Nov 25, 2013 3:11 pm

I live in Florida haha... umm yeah yours sounds different than what mine was Sad

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Re: Anyone else feel like this?

Post  Kathy100 on Mon Nov 25, 2013 4:59 pm

So sorry to hear your story – no wonder you are so fed up. I’m not so far down the line as you but a lot of yours sounds familiar:
1.I get no V pain lying down. It gets worse sitting especially on hard chairs (I have to use donut cushion). Jeans irritate too. Standing is ok; although went through a phase where I got shooting pains in legs.
2.My pain started as V with burning and prickly pains and then the pain spread out to my lower back, tailbone hips and legs. My muscles got really tight so I couldn’t relax my legs at all.
3.My pelvis and tailbone were badly mis-aligned (physio thinks they have been like that for some time) – both are now re-aligned & this has eased the v pain.
4.I take the mini pill so no periods. I could come off it now but don’t want anymore upheaval body wise.
5. My physio found loads of trigger points / knots in the muscles in my back, stomach, hips and legs – they are gradually going – still more to go as my muscles still tight. I haven’t had any internal work but do sometimes feel an internal release when she releases other muscles e.g. inner thighs / lower back.
6. I’m single but I’m pretty sure sex would make the pain worse. Mine started as mild provoked & sex would cause pain during and after.
7. Ditto – don’t get the leg pains anymore though.
I haven’t had acupuncture. Physio said because my pelvis was out of whack all my internal organs had been squashed and pulled about. She did some work to loosen the bladder and get it back to it’s proper place – since then I haven’t needed to wee half as much which is really good. Physio thought that my nerves had been crushed due to all the mis-alignment.
I was on the pill for years with no problems but then changed to mini pill due to migraines. The provoked started when I was on the main pill - unprovoked while on mini pill. Dr did think because I was premenopausal it could be to do with that but I just don’t know.
Things I’ve tried:
Amitriptyline – couldn’t take side effects
Swopped to nortriptyline – really helped & since latest physio have got the dose down from 10mg daily to 5mg every other day. If I get stressed the V pain breaks through as if to remind me – yes I’m still here but I usually find deep breathing & stretching out eases it.
Steroid creams / lidocaine / thrush treatments – made me worse
Physio – eased a few trigger points but pain always came back
Myofascial release physio – this is helping
Yoga – aggravates hip and tailbone
Pilates – helps but have to be really careful what I do – I went to my first beginners class last week after 1:1s & it has just made me worse.
Pelvic floor stretches from Amy Stein book – these help.
Meditation / relaxation / CBT / deep breathing.
Today I feel really fed up because my tail bone hurts like hell & I’ve been at work sitting for most of the day. I’m clinging on to the fact that the myofascial release is helping me with the v & given time and more physio it will go. I really don’t want to just live with it. I’m sick of the whole thing not being able to do what I want, having to take meds, use the cushion etc etc. It does feel like half a life. I’m actually glad I’m not in a relationship at the moment so I don’t have the added pressure of sex. All this has made my libido non-existent anyway.

Don’t give up…. Is it worth seeing a neurologist to assess the nerves, MRI etc

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Re: Anyone else feel like this?

Post  Kathy100 on Mon Nov 25, 2013 6:00 pm

Sorry taken over your thread with bit of rant - just a bad day xx

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Re: Anyone else feel like this?

Post  Alana3 on Mon Nov 25, 2013 6:09 pm

Acupuncture may help...?

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Re: Anyone else feel like this?

Post  zarli on Mon Nov 25, 2013 10:57 pm

Yes Bluekangaroo I have almost same as you my v is unprovoked.
I too would never think of suicide although I too have bad thoughts on many occasions but you have to stay positive, your family needs you not any one else !! At this present time you are the most important person in your life you have to keep going and keep searching something will work to make your life easier. Please remember that what you might be thinking is the opposite to what your hubby is thinking and I'm not sure how old your child is but they would love you lying down or standing on your head you are their Mum and they would never what some one else.
I am on Nortriptyline, Amiltriptyline worked for me for along time but with side affects please try nortriptyline it worked for me. I also take lyrica which together keep my pain at a level that I can keep up to my life with my children. As for sex for me I have to use a lot of lubricant and wash with cold water straight after, the pain flares but only slightly.

I will forever fight this horrible disgusting condition and I will never give up.

Yesterday I brought Louise L Hays book ALL IS WELL, I read it last night and it helped me so much in understanding another way of why we may have such conditions, it also gives a medical view and lots of positive ways to improve negative thoughts. I know its bloody hard and tough going but please know you have all of us on here and if you would ever like to message me please do.

You are another amazing women and your family needs YOU.

Take care xx

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Re: Anyone else feel like this?

Post  Leslieg on Tue Nov 26, 2013 3:01 am

Zarli,
I love Louise Hay.....I refer to that book often. It's good to read a few times. She has a few new books as well. I have faith that we will all find our healing and cure. I just wish the answers came quicker. We will get there!
xo

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Re: Anyone else feel like this?

Post  Leslieg on Tue Nov 26, 2013 3:02 am

Sorry......I think 'All is Well' is her new book. 'You can heal your Life' is good as well. Smile

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Re: Anyone else feel like this?

Post  tinkerbelle2 on Tue Nov 26, 2013 10:01 am

Bluekangeroo,

I related to so much of what you are saying. The more and more options I try and fail, the less I think it's going to go back to feeling normal. I have actually felt a bit suicidal at times with this and very down and unhappy. It is a depressing disorder Have you seen a vulvar skin specialist as I am waiting to see one next month. Or are you 100% it's muscle-related
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Re: Anyone else feel like this?

Post  zarli on Tue Nov 26, 2013 10:55 am

Leslieg, in earlier post you asked if bluekangaroo had an MRI, just wondering where you think the MRI should be, I mean Ive had a brain MRI but that's all should I seek one in my back ?

I'm on a mission to buy more Louise Hays books tomorrow, I have been using affirmations all day ...

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Re: Anyone else feel like this?

Post  Leslieg on Tue Nov 26, 2013 1:00 pm

Hi Zarli, I'm thinking maybe a pelvic MRI to asses nerve entrapments. However I am not entirely sure. I've started PT a few weeks ago. On my second visit the PT told me that she had received an message from my specialist who refered me stating that if she (the PT) suspected that I had pudendal nerve involvement to let her know because an MRI would have to be ordered. At that time the PT didn't think it was necessary for me. We'll see what the future holds.
I've been doing some exercises at home but I think a can of worms has been opened. Sad
I'm having new pains that I haven't had before. I use to get mild numb tingly feeling on right bum inner groin area. Now its all over both sides including groin and vulva with the occasional stabbing pains if read about. I hadn't had those before Sad .
My next appointment with her isn't until 12/6. I think I'm gonna call her because I'm feeling I am making matters worse.
Have any of you had PT make things worse before they've gotten better? Trying to remain positive and let go of fear.
Be well ladies! Smile

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Re: Anyone else feel like this?

Post  mary jane on Tue Nov 26, 2013 6:22 pm

@ leslieg careful, there is a big nerve there called the pudendal nerve, and sometimes vulvodynia can really irritate this nerve.
hence the buttock symptoms. My right one vibrates (sucks). What's worse, if I press on the vulva it starts to swell and hurt (neurogenic inflammation)
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Re: Anyone else feel like this?

Post  zarli on Wed Nov 27, 2013 6:52 am

Thanks for your reply Leslieg:) 
I will look into MRI when I see my specialist in March. I have just given up physio apparently all is ok but the pain is still there and it actually made it worse each time. I feel I have given it enough time and just accept physio is not for me, and that's ok I will look into something else. I have been swimming each day for a week now well not free style but just a type of very slow breast stroke and I feel so much better, so I am keeping up with that at the moment, it is a salt water pool so maybe that is helping but I feel its the low impact exercise more than anything. Smile 

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Re: Anyone else feel like this?

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