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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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I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

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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.

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What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

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I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

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Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

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Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

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you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

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Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

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Feeling more positive now that I'm in a new relationship

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Feeling more positive now that I'm in a new relationship

Post  Takver on Wed Sep 11, 2013 10:57 am

Hello everyone, nice to meet you.  I've had problems with vulvar pain on and off throughout my adult life, although I wasn't diagnosed with vulvodynia until a few years ago. I have a lovely gynae who has tried me on this and that, but has pretty much run out of ideas.  I'm 35, and I have severe ME/CFS, fibromyalgia, and possibly some sort of mast cell problem or Sjogren's, although I think I'm years away from a diagnosis there.  The pain gets worse before and during my period, which my gynae said vaguely could be due to hormones.  I've got a copper IUD and I'm not on any hormonal medication.  I'm in the UK.

My last partner was hopeless about the vulvodynia, and indeed about sex in general.  Well, it started off as "hopeless", and gradually moved to "sexually abusive" over the years, which seems to be sadly common.  It was absolutely horrible being pressured into sex when I was in pain, and it didn't leave me feeling great about myself, my sexuality or my body.  I'm not saying that it was always painful, though, sometimes I was OK with penetrative sex, but no one should be making you have sex when you're in pain, ever.  I got out of that relationship a year ago, and I'm never putting up with anything like that again.  Even without having sex, the pain would sometimes be so bad I'd be on every painkiller I could manage, which still didn't get rid of the pain entirely.  It's not been as bad over the last year, probably because I've not been having (stressful, abusive) sex, but it still flares up every cycle.  I haven't been able to return to using a menstrual cup, for instance.

On an everyday basis, the vulval and vaginal pain ranges from non-existent to severe, and I always have mild to moderate pain up the gluteal crack, which doesn't seem to respond to anything. Well, Trimovate helps the pain back there a bit if I use it twice a day, but it doesn't get rid of it, and it's smelly, and my gynae said it should have cured it by now. Dakracort helped surprisingly well for a week and then stopped working. I'm currently using a mix of calendula and St John's Wort oil on the vulval/vaginal area, and I've just gone back to the Dakracort for further back. When I need lube during sex, I either use Yes water-based or Pink silicone.

I started seeing a new chap six weeks ago.  He is a total sweetie, and would never dream of playing power games or making me do anything that hurts.  We are having lots of sex and it is absolutely bloody fantastic.  Apart from one occasion, it's been non-penetrative sex only.  (I told my gynae, and she was delighted for me.  She said that in her experience, one thing that often helps vulvodynia is a fabulous new man.  She also said that lots of good non-penetrative sex is the best way to build up to having penetrative sex.)  I really want to be able to have penetrative sex with him, though, and generally I would like never to be in pain of this type at any point.  The pain is mostly around the vaginal entrance, perineum side.  We tried penetrative sex last Thursday, and to start with it hurt a fair bit.  I decided to push on through as the pain often diminishes after a few minutes, and indeed it did.  So I'm guessing there may be some element of vaginismus or something going on there.  After that I don't remember it hurting, though the pain had been enough to mean that I wasn't going to get off from it, but it was still nice in terms of intimacy and such.  It was worth trying, but I'm not going to try that again until I'm reasonably sure that it won't hurt.  It doesn't help that he's rather large.  Right now I'm coping with one finger almost all of the time (well, I didn't even try anything just around before my period), two fingers most of the time, and can't manage three yet, so we'll work up to that first.

I bought Amy Stein's Heal Pelvic Pain a few weeks ago, and am trying to settle into a routine of doing the exercises and massages every day.  I'm not quite sure whether you're meant to do the internal massage every day or put it into the rotation along with the abdomen, thigh and backside massages, so I'm emailing her to discuss that.  I definitely can't manage the exercises more than once a day, and not even every day, as they take a while and I'm limited due to the ME.  

I'm guessing that what is going on with me is a mixture of pelvic floor muscular issues and nerve pain.  (I've tried gabapentin, by the way.  It didn't help, and the withdrawal was hellish.)  So working on the pelvic floor muscles seems a sensible approach.  In terms of the nerve pain, arousal seems to make a surprising difference.  Yesterday I was a bit on the sore side throughout the day, vulva and perineum as well as vagina, but then had the best sex of my life in the evening, for hours, and didn't notice any soreness apart from when there was too much pressure on certain areas of my vagina, which is more a sort of tender, bruised feeling than the prickling, raw sensation.  

Going back to Stein's method, has anyone used this sort of approach, and if so, what can you tell me about it?

(Goodness, that was a lot of highly personal information, but it's a vulvodynia forum, after all.)
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Re: Feeling more positive now that I'm in a new relationship

Post  tinkerbelle2 on Thu Oct 03, 2013 1:36 pm


Hi,

Sorry to hear your last partner was such an ass! Evil or Very Mad 

Thank god you are now with someone who treats you nice.

How are you feeling at the moment
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Re: Feeling more positive now that I'm in a new relationship

Post  Takver on Tue Oct 08, 2013 2:08 pm

Things are going very well! We've actually managed to have penetrative sex a few times. Erm, three times last night, in fact. I can't believe what a difference it makes to have a partner who is focused on giving you pleasure and who hates the very thought of causing you pain, instead of one who is selfish and abusive. It is so completely and utterly different to how it was with my ex.

I'm still having some issues with pain, lower vaginal entrance mainly, and will feel a bit bruised/tender in that area for several days afterwards, and I do want to get that sorted, but it's livable. Putting silicone lube on before we begin anything at all seems to help, working up to three fingers first, and starting off with both lying on our sides, which seems to be a much gentler position.

We're both having health problems. He had a DVT nearly four weeks ago, despite being young, fit, a healthy weight, and definitely not pregnant. I'm having a lot of problems with muscle and joint pain in general, and I think the ME is flaring a bit from generally overdoing it. I've been on baclofen, a muscle relaxant, to see if that'll help with the ME/fibro pain. It doesn't help, and I suspect it's the reason why I'm having trouble with orgasms at the moment (despite really fabulous sex), so I'm starting to taper off it from today. I'm also having increased problems with breast pain. I suspect that's the ranitidine (Zantac). It's not listed as a side effect, but it is listed for cimetidine, a similar drug in the same group, which definitely caused me breast pain. Possibly all the sex I'm having is making the breast pain worse in some way? Once I'm off the baclofen, I think I'll try reducing the ranitidine and see if that makes a difference. I'm also wondering if it was the tramadol which has been causing problems with orgasms, although I've taken that plenty of times in the past. Oh well, I'll come off the baclofen and see where I am after that.

I've been talking to my home care agency about getting the increased support hours that I was promised a year ago and am still waiting for. It turns out that social services won't supply them with this agency unless I use them "creatively" (jargon, don't talk to me about jargon), which means 10% of the budget has to be put aside for something else. I'm thinking of putting some of that into having a regular massage at home, and already have the massage table. Is it worth looking into myofascial release/trigger point work? I've had really bad muscular pain recently, as I mentioned, and in particular around my hips and shoulders. My massage therapist (who is also my home care team leader) tried doing some trigger point work on it last time, but we're not sure if it's helping or making things worse. I did buy one of those four-pronged nobbly massage tool thingies, she's been having a try with that. I must confess that the stretches and self-massage, a la Amy Stein, have mostly fallen by the wayside, due to being too busy and crashing in exhaustion the rest of the time. I'm managing the stretches sometimes, at least. Acupuncture is also something I might be interested in trying. I've had very mixed results with it in the past, but I'm thinking about trying medical acupuncture this time.
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Re: Feeling more positive now that I'm in a new relationship

Post  mary jane on Tue Oct 08, 2013 10:38 pm

it's great to read such a positive experience ! So lovely that you found an understanding partner!
Please let us know how the acupuncture goes
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Re: Feeling more positive now that I'm in a new relationship

Post  Takver on Wed Oct 09, 2013 7:37 am

So far, I can tell you that it's expensive. I've not signed up for it yet. I asked a GP about getting referred for it, but she told me that they only refer when you have a single specific pain, rather than multiple sources of pain? Sounds like bollocks to me, but I think that if I have some acupuncture privately and that helps, that might convince them.

Period is due in a week, so we'll see how the vulvodynia flares up this cycle. I think I need to sit him down with a diagram and explain exactly what sort of pain I get, where, and when. Meh. Not looking forward to that, although that's probably just a hangover from all the shitty treatment I got from my ex in this respect. Has anyone had that sort of talk, and if so, any tips?
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Re: Feeling more positive now that I'm in a new relationship

Post  Takver on Fri Oct 11, 2013 4:42 pm

Sod. Yes, it is flaring up premenstrually. And I'm still finding it difficult to handle when sex becomes painful. I thought, "oh, this isn't too bad, I can cope," and went ahead anyway (not for that long, though, and I suggested a break in the middle), which was a big mistake. I started disconnecting, and since I can get quite bad PMS and the breast pain and anxiety have been bad this month (stress from other factors too), have been feeling rubbish ever since (flashbacks to my abusive ex etc.). I'll talk it over with him, we'll be OK, and next time I will have the sense not to try anything that's painful for more than a few minutes. We were chatting on IM just now, and I said, "I must confess that I am feeling decidedly unsexy at the moment, between the vulvodynia doing its premenstrual flare-up, the premenstrual breast pain, and the premenstrual anxiety combining with benefits stress. Fancy having a go at Indian head massage?" So that's sorted for this evening.
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Re: Feeling more positive now that I'm in a new relationship

Post  Takver on Fri Oct 25, 2013 3:08 pm

Aaand it's two steps forward, one step back. We're now managing PIV sex quite often, but sometimes I'm finding I'm really sore, in a different way to usual. I suspect I could be having a reaction to his semen, although the other night I could swear the soreness started before he came. Folks who've had this problem, could you describe it for me? He doesn't ejaculate often, I think he's got some sort of non-deliberate tantric multiple orgasm thing going, but he does ejaculate during PIV sex.
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Re: Feeling more positive now that I'm in a new relationship

Post  Alana3 on Fri Oct 25, 2013 4:16 pm

Probably chaffing which is normal I felt like I had a blister but it was just him rubbing against the same spot switch positions or take a day off and see what happens. I was having sex like 5 times a week sometimes you need a break haha

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Re: Feeling more positive now that I'm in a new relationship

Post  Takver on Mon Oct 28, 2013 10:31 am

No, that feels different. He didn't ejaculate the last few times we've had PIV sex, and the problem didn't arise, so I am definitely suspecting the semen. Ah well, if it does turn out to be that, I'll just ask him not to ejaculate. I have no idea how his orgasms work, they're certainly not conventional, but I think he'd find a way around it without difficulty.

What sort of lube are you using? I'm on Pink silicone lube, and it's great stuff.
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Re: Feeling more positive now that I'm in a new relationship

Post  Kathy100 on Tue Oct 29, 2013 3:42 pm

It may just be that your nerve endings have become over sensitive or a reaction to the lube?

Are you always sore in the same place just on the inside?

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Re: Feeling more positive now that I'm in a new relationship

Post  Takver on Thu Oct 31, 2013 3:29 pm

No, and I'm fine with the lube, I've been using it for ages with no problems. When I get this particular problem, suddenly everything is sore inside and out, in a stinging/burning sort of way, despite the fact that I'm aroused and thoroughly wet. We've had PIV sex, er, when did I start this topic, well, about eight or so times over the last ten days (told you things were going well - I'm really curious to see if this lasts through to my period, when things have always got bad again), and he's not ejaculated since I last posted either (him and his unsual orgasms, eh), and this problem hasn't recurred. So it's looking very strongly like that particular bout of burning was caused by his semen. It's a known problem, I hear.

My gynae was quite possibly incredibly right when she said that in her experience, the best cure for vulvodynia is a hot new man. I had no idea I could improve this much. It was an absolute nightmare with my last relationship, and in the eleven months that I was single it was still moderately bad. The semen thing is slightly annoying, but if it does turn out to be a problem, I'll mention it to him, and we'll work around it.
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