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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: 3

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 …

Comments: 1

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 …

Comments: 6

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: 3

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 …

Comments: 10

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: 1

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 …

Comments: 0


I... just... ARGH (I'm a horrible person)

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I... just... ARGH (I'm a horrible person)

Post  Haze on Wed Oct 19, 2016 1:18 am

Last posted May 2016 in the new members section, having been referred to a dermatologist and waiting an appointment following a 5-year-provoked-pain-sex-impossible-very-miserable ordeal. I feel like I should have posted here since, tried to provide some support to others, but since I haven't found anything that's helped me in the slightest it's a bit difficult to give advice... sorry, but all I have is anger about the whole thing and I don't think that helps anyone. I just need to rant before I hurt myself and I can't write something like this to a person I know IRL without consequences.

Had my appointment this week and the dermatologist confirmed everything I had previously said about my referral to her in the first place - there is no dermatological issue, and nothing she can help me with. I knew that already and this non-revelation certainly wasn't worth the five month wait.

This is the pattern. Get a referral, wait 5-6 months, have an appointment, be prescribed something, wait 5-6 months, return to discuss how the prescribed treatment has not worked, wait 5-6 months, receive letter informing of who they're passing me off to next, rinse and repeat. Go back to the GP as often as possible to be told that they won't do anything else at all while I'm waiting for my letter/appointment/whatever.

So, imagining for a moment I didn't have a vagina that feels like an open wound, my newly engaged finance and I would ideally like to get pregnant after our wedding in 2018 (at which point we'll have been together 7 years, living together for 5), but open to getting pregnant before that - because what if we miss our only chance because we're waiting? We're still sexually active, minus penetration and contraception, and we're aware that it's unlikely (but possible) to get pregnant this way - even more so unlikely because I have PCOS and go months without a period. We may never have full intercourse again, it certainly feels that way.

So we optimistically decided that with waiting times, criteria, funding, chances of pregnancy reducing with aging etc, etc, etc... let's go to the doc, tell them we want to get pregnant, let's get on a waiting list for any form of fertility treatment. I thought I'd prepared for the worst, maybe being handed a leaflet and shuffled out of the door, maybe being told that we would be waiting years past our timeline for even the first consult, etc.

I was NOT prepared. Artificial insemination not available to me, at all. IVF available only to couples who had been trying to conceive via regular sexual intercourse for 12+ months, so not me. No allowances for the fact that I CANNOT have regular sexual intercourse. No allowances for the likelihood that there are other fertility issues with the PCOS/lack of periods - I can't prove it, because I can't say "I'm having sex AND not getting pregnant".

So what are my options? I have to wait until they fix me, then have regular sex for a year and THEN they will refer me for my first consult if I don't get pregnant. Lucky whooping-fucking-do me. It's only been FIVE WHOLE YEARS that I haven't been able to have sex, during which I've averaged two five minute appointments a year with specialists who shrug their shoulders and leave me waiting half a year with nothing to do but sit and wait around, thinking about how defective my body is.

I know I'm probably over-reacting but I have basically been told that if the pain doesn't go away then no children for me ever.

And I know I'm probably over-reacting but I don't understand how they could expect me to be okay with sitting and wait patiently for them to figure out what's wrong and fix it when it's been five years and virtually nothing is being done to help.

And I know I'm probably over-reacting but I really don't feel I can cope with the concept of never having my own children, and even worse, forcing that on my partner too - that isn't sharing my pain with him, that's just doubling the pain.

And I know I'm probably over-reacting, but it's been hinted to me that the next referral I'll be getting is for psychological help and fucking hell... I'm more than happy to try therapy, but my past experience of mental health referrals suggests that my next wait is going to be well over 5-6 months (over a 2 year wait following teenage suicide attempt many years ago - and if they can't fast-track the overdosing child, what hope is there for a sad woman with a hurty vagina?)... I've actually been asking for a mental health referral for a long time now, but I know it's not the solution to my pain! At this rate I'll still be waiting for help as I hit the menopause.

The only alternative is private care that we cannot afford. I'm doing everything I can do with what I have. I've been thinking about hurting myself enough down there to maybe force surgery to happen. I've been thinking about obtaining something along the lines of heroin... maybe that could numb the pain/knock me unconscious for long enough so that he could have sex with me. I've been thinking that maybe I will need to ask him to physically restrain and essentially rape me.

I don't feel like a woman. I might as well have no reproductive organs, they're all broken. Suicide was kind of lingering in my brain's periphery and now it's standing centre stage, waving it's arms. Not planning for it in the near future, but it definitely feels like my brain is trying to schedule some kind of cut off point, where I decide I'm not willing to wait anymore.

Just want to end with: I'm actually very sane and level-headed when this issue isn't at the forefront of my mind. I am in an exceptionally healthy relationship (going strong despite no sex, genuinely only two small 1-hour arguments in over five years, and it goes without saying my partner would NOT agree to the drastic measures above). I hold a full time job, I have friends, close family relationships, I even have a couple of hobbies - I'm a functioning person! I don't WANT to die, I don't WANT to conceive a child while unconscious, I know that harming myself is not a sensible action to take if I want to be a parent - these are last resort thoughts that repeat over and over in my head against my will and best judgement. I read back through this before posting, and if the writer was a stranger to me, I wouldn't think they were fit for motherhood. But this is what my medical problems are doing to me. It is holding ransom everything I hold dear, all my plans for the future, control over my own life. Perhaps I'll feel better in the morning, or maybe in a few years I'll be able to accept a life without children, or maybe they'll fix me but I'll still be a headcase. I am so sick of this.

Haze

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Re: I... just... ARGH (I'm a horrible person)

Post  PainBlogger on Wed Oct 19, 2016 9:00 am

I'm sorry to hear how bad you're feeling. I can appreciate to some extent how stressful it is to deal with this condition as well as wanting to conceive. I'm finally able to TTC with my husband again (you can read about my history here: http://vulvodyniasupport.forumotion.net/t2291-four-months-of-significant-improvement ) but we just had some fertility tests done because we've had no success in over 18 months (12 months before vulvodynia and 6 months since being able to try again), the tests did show a problem, and IVF is not available on the NHS where I live for anyone. Sad So I feel like every obstacle I overcome I just get another one put in front of me. I have to be grateful though that there is a chance it could happen naturally before I get too old. I don't mean to equate my situation to yours, I just wanted to say that I can empathise.

Are you able to insert anything (like a tampon or small dilator)? I've seen info on the Internet where people have had success with DIY artificial insemination at home. Obviously you'd need to be able to use a small syringe (minus needle of course) for that to be an option and it wouldn't be as likely to work as AI where they inseminate into the uterus directly (IUI). Have you tried physiotherapy and/or dilators? What about lidocaine gel/ointment? Which medications have you tried?

Another option, which is not ideal but I'm sure people have done, would be to say to your GP you have been trying for over a year. I don't like to advocate lying, but, honestly, in your situation (and maybe this makes me a bad person) I would personally consider it. I guess you'd have to wait another year before doing that though as the GP knows that at the moment you haven't been able to.

Whatever you do, don't try to push through the pain and have sex. It will only make things worse and you could cause relationship difficulties in a relationship which sounds very strong.

I hope you find something that helps you soon.

PainBlogger

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