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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


New and desperate for advice

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New and desperate for advice

Post  srbry on Sat Mar 03, 2018 2:37 pm

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I was embarrassed and figured it would just take a wee bit of time to have pain free sex, i figured it would take my body a bit of time to get used to it. After that I had a boyfriend at university and was with him for 2.5 years. Sex still hurt but it wasn't every single time at the same time. Sometimes it would be sore from a finger, and he couldn't even penetrate me, sometimes part way through penetration it would begin to really hurt, sometimes (very very very rarely) it would be ok but the pain would come on after. The pain is at the entrance to my vagina and it burns. It's near the bottom (just above the perineum) and the pain feels like I'm being burned or sliced with razor blades.

When I was at uni I went to the dr about 12 different occasions, had loads of tests done for STIs, yeast infections etc and they always came back negative. I was essentially shooed out of the door and told it was all in my head. My boyfriend was understanding and lovely but he was the only person who knew about this and it sometimes took a strain on our relationship. After me and him broke up I confided in my mum and told her the problem. She told to me to demand a referral to a gyno which i did and i'm currently being bounced around the NHS. I see a different dr each time and therefore have to have a new examination each time. Several drs have made me cry from being so insensitive (always female drs which shocked me) and last time I was at hospital in January a dr literally shrugged at me. I'm being referred to a neuro gyno and have an upcoming appt in April. I've had so many scans and nothing can be found for cysts / endometriosis etc. I've spent months with a psychosexual counsellor, I've had a few sessions with an acupuncturist and now I'm seeing a hypnotherapist (I've only had one session so I'll have to wait and see how that goes).

Emotionally I'm broken down. I worry about getting involved with any man because of this huge issue and my self confidence is very low. Yes I know that if a man doesn't accept it and deal with it properly he's not worth it - but that doesn't really help me. I ended up asking my best friend for a favour almost 2 years ago - I needed to have sex and he was single so could he help me. There was no way for me to track any progress unless I was sexually active so he's been a great help to me and is incredibly supportive. He recently sent me an article on vestibulodynia and said it sounds very similar to what I have. I've printed loads of info about it and will take it to my next appt with the dr as I think it's sometimes more beneficial to take your own ideas with you - from past experience. The pain isn't all around the "clock face" it's just at 5, 6, 7. Where it really just feels like I'm too tight. I've tried dilators in the past but found the whole process incredibly painful and anxiety provoking.

Does anyone have any idea if this could be vestibulodynia? Even though the pain is only nearer the perineum and it doesn't hurt to the same degree each time?? And does anyone have any hints and tips for how to make the process of using a dilator less traumatic and more useful? I find that drs haven't been giving me much guidance on this kind of thing. I just read a post below and have bought the Amy Stein book "Heal pelvic pain" as it was recommended, and will look in to doing more yoga, but if anyone has any more advice please please please please please help. I'm going a bit crazy. 8 years is a long time and is really effecting my mental health. Another issue with my life is I don't always stay in the same place. Last year I lived in Africa (with no access to a gyno) so my hunt for a cure was put on hold for a year. In june I'm moving to Vancouver (definitely more medical help available in Canada but also pretty expensive for a Brit on a budget). I know this is a long shot but if any Canadians happen to read this and could give me any advice on help to get while I'm out there that would be amazing.

I've read a lot of the stories below and I feel for everyone. I know exactly what it's like and just want it to be over. Thanks for taking the time to read this xxxx

srbry

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Re: New and desperate for advice

Post  fairlight10 on Sun Mar 04, 2018 8:55 am

Hi srby It sounds as if you have vulvar vestibulitis. This can be primary meaning you can be pre disposed from birth. Did you have problems using tampons when you first used them? I have secondary vulvar vestibulitis. I had no problems in my vulvar until l was 57 years old. I still do not know what event triggered mine.could have been thrush, menopause, uti,urethral dialation. When I finally got my diagnosis and did my research. Canada was way in front of researching this condition. It was said they even had adverts on the subject of vulvodynia. So it looks as if their doctors are a lot more open to this problem.l am sure I got this info from this site. I have been on Nortriptyline for almost 6 years. It keeps me comfortable. I can get on living almost trouble free from this condition. Some fruits cause my urine to be too acidic so that can cause symptoms to start up. Also stress is another trigger. Getting hot in summer is also a trigger. You learn to manage your triggers and avoid them best you can. I am glad you have confided in mum and found this forum. Good luck with your appointment in April. Do not accept anyone telling you it is all in the mind. I believe this is said when they are ignorant of this condition.

fairlight10

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Re: New and desperate for advice

Post  srbry on Sun Mar 04, 2018 12:23 pm

Yes I did have problems using tampons but it was such a long time ago that my period started I can't quite remember. I know that I had trouble even getting a tampon in and settled for using pads at first. But I can't remember whether I experienced pain with it or whether it was just difficult to insert them. I moved on from pads to tampons after about a year when I learnt to successfully insert and after that I moved on to the mooncup. Insertion / removal was quite sore (If I were to press on the opening of my vagina near the perineum now there would be a sharp pain). On friday I had my mirena coil removed and reinserted (an awful process because the smallest speculum still caused me a massive amount of pain).

Is Nortriptyline an antidepressant? Can I ask how that helps you? I don't really understand all the different types of treatment / pain control. Was your pain there continuously or only during intercourse?

Thank you for your help it feels like such a relief to even get a reply and know there are other people who are experiencing the exact same thing xxx

srbry

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Re: New and desperate for advice

Post  fairlight10 on Sun Mar 04, 2018 2:13 pm

Yes it is an antidepressant but used in low doses it can help with nerve pain. It slowly.calms the nerves down in the affected area. I am on 20mgs every night. There are also epilepsy drugs that can work in the same way. My pain was sometimes continuous.It would be worse at night burning and stabbing pains. This is neuropathic pain. Had many trips to see the doctor and they were useless. Paid for private consultation with gynaecologist who gave me a diagnosis of vulvodynia which translated means pain in the vulva. Put on the low dose antidepressants and paid for acupuncture privately put me on the road to some normality. It took 4 months to be able to go back to work. Occasional flare ups and learning what triggers them. Read the posts on this forum. They can be very informative. Different things have helped other people. Good luck.

fairlight10

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Re: New and desperate for advice

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