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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

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Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

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Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

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Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

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Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

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Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

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Appointment tomorrow...any suggestions of what I could ask?

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Appointment tomorrow...any suggestions of what I could ask?

Post  tinkerbelle2 on Sun Nov 17, 2013 12:23 pm

So finally i have my second gynaecology appointment since my gp suggested I had vulvodynia. In case you don't know, my symptoms are a chronic unprovoked raw burning in the vagina and around the opening. Last time they prescribed me Gabapentin and I took that for about 7 weeks but experienced bad side effects. I am keen to discover what and where the pain actually is coming from if that makes sense. My gp has also referred me to a vulvar specialist. I also am curious if it would be worth seeing dermatologist, urologist and physiotherapist as I still really confused and don't understand completely what areas are affected and can mention this to them. I'm sure they'll ask if the Gabapentin was effective and discuss further options to try. I'm not sure if they'll want to examine me as they did that last time and swabbed me for everything. Any other suggestions of questions I could ask?
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Re: Appointment tomorrow...any suggestions of what I could ask?

Post  Sarah001 on Sun Nov 17, 2013 7:45 pm

I've not actually seen a Gynae so I don't know if they refer or if they leave that to your GP but I've seen a vulvar dermatologist and if you have any signs of redness it's worth going so yes to that, also a Women's Health Physio is well worth it so ask to be referred to one of those too and ask if you can try Lyrica, it's more expensive than Gabapentin which is why most people get Gaba first so that's worth a mention too. Get referred to as many places as you can to shorten the wait, we all know how long it can take on the NHS and my v dermatology appointment took 6 months so expect a wait. What you basically want to do is find the cause and one of the specialists along the way will be able to rule something in that you can work on, until they really know what's behind it they can't do much except offer medication. You could ask the gynae to press some of the pelvic floor muscles if they examine you to see how they feel to you and them, usually the 5 and 7 o'clock areas are particularly tight and sore so that might be worth a try too. Good luck and keep us posted.
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Re: Appointment tomorrow...any suggestions of what I could ask?

Post  Alana3 on Sun Nov 17, 2013 8:26 pm

I wouldn't suggest crap that's when you get a problem because they just oy you in what your ask for when it may but be your problem... see what they say...

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Re: Appointment tomorrow...any suggestions of what I could ask?

Post  tinkerbelle2 on Sun Nov 17, 2013 9:25 pm

Thanks for the response ladies. I've taken onboard your suggestions Sarah I definitely want to get as many referrals as possible to narrow it down. Will post on here the outcome! Did you say that you regularly see a physio and do exercises? How's it going? ( that was you wasnt it i cant quite remember ! )Thanks for your support means alot Smile
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Re: Appointment tomorrow...any suggestions of what I could ask?

Post  Alana3 on Sun Nov 17, 2013 9:39 pm

Make sure its muscular if its nerves its not gonna do a lot... I had both and it helped for muscles but for nerves it killed til I got the surgery... ugh

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Re: Appointment tomorrow...any suggestions of what I could ask?

Post  Sarah001 on Sun Nov 17, 2013 10:11 pm

It is me yes, I'm not a typical V sufferer as I have EDS type 3 which leads to serious instabilities and dislocations however learning to breathe better and not clench the pelvic floor does help with pain levels so I'm hopeful if I can stabilise my pelvis I'll get there. If you do get to see a physio they will be able to test your muscles for you and the nerves are closely related to the muscles so they will be able to tell what's going on, the pudendal nerve can get compressed by the obturator internus for example and releasing the muscle can stop that kind of nerve pain. With respect to Alana if we don't ask for things here in the UK we don't get them, it's always a good idea to do what Tinkerbelle is doing and prepare some requests. I started my requests in a GUM clinic and if I'd waited for my GP to suggest something I'd have waited months if not years for any kind of useful input and likely ended up being referred to the wrong people, it's just how it works. Good luck and let us know how you get on.
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Re: Appointment tomorrow...any suggestions of what I could ask?

Post  Alana3 on Mon Nov 18, 2013 12:30 am

My point was if you ask for something you dont need than you get that when there's another.problem prolonging your misery. And also adds to other problems. Example when someone has a sore throat and insists on antibiotics when in fact they have a virus. You get a resistance to the drug so it won't work next time as quick and you just treated yourself for no reason...

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Re: Appointment tomorrow...any suggestions of what I could ask?

Post  Sarah001 on Mon Nov 18, 2013 9:18 am

I see your point but it doesn't apply to asking for a physio appointment, a dermatology appointment (both of which could reveal the underlying problem) or a drug that's the same type as previously given but slightly more effective, Tinkerbelle is doing the right thing by being prepared and proactive.
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Re: Appointment tomorrow...any suggestions of what I could ask?

Post  Alana3 on Mon Nov 18, 2013 12:32 pm

I was not talking about phyiso I was saying meds

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Re: Appointment tomorrow...any suggestions of what I could ask?

Post  Alana3 on Mon Nov 18, 2013 12:33 pm

And actually if you only insist on that it.could if its not really youre problem.

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Re: Appointment tomorrow...any suggestions of what I could ask?

Post  tinkerbelle2 on Mon Nov 18, 2013 1:08 pm

Well girls it was kinda good and bad. The lady I saw was friendly but didnt seem to understand only looked a few years older than me and seemed ill informed on vulvodynia (as expected) she said I wasn't a typical vulvodynia candidate because 'vulvodynia is only pain provoked by sex.' ?! I tried to tell her it can also be unprovoked (my gp even said that!) And that there are many women on a forum that have all different types and that I thought vulvodynia just meant unexplained pain of the vulva so I basically do have that. There was also a male student observing which was a little awkward lol bless him. . . .they also told me the swabs from 5 months ago had come back clear (shocker!) The good news is that she then went to discuss things with the consultant and came back and said there is a vulvar skin specialist that often sees patients with vulvodynia and vaginal pain so I have been referred to them! So I feel positive about that hopefully won't be too long.
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Re: Appointment tomorrow...any suggestions of what I could ask?

Post  Alana3 on Mon Nov 18, 2013 2:47 pm

It takes a while to find someone who knows what they're doing... be patience but sounds like youre on the right track

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Re: Appointment tomorrow...any suggestions of what I could ask?

Post  Sarah001 on Mon Nov 18, 2013 5:58 pm

My V dermatologist was also claiming to be a V specialist and she even trains other doctors but she hadn't even heard of pelvic floor involvement rather worryingly. You've got to the next stage however and see what the next doctor is like, it may even be the same one I saw as she visits hospitals all over the UK one day a month (obviously not all in one day!!) to do a V dermatology clinic at each.

And Alana if you insist on being argumentative yet again the point of a visit to a physio is to find out if they can help so it is not a bad thing to ask for. Let's draw a line under this because clearly we don't agree on some things and this forum is designed for women to get help and feel comfortable discussing their issues not for immature spats.
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Re: Appointment tomorrow...any suggestions of what I could ask?

Post  Alana3 on Mon Nov 18, 2013 6:23 pm

Wasn't arguing sweetheart was voicing an opinion based on my experiences for isnt this the point of a forum? Chill I even said to go to pt but not to ask for anything in particular until you have a reason for your pain. Glad I didn't take your suggestion because I do not have muscular problems and it would have made my pain go on longer than I needed it to. Everyone is different and reacts differently to things sorry I dont agree with everything you say but breathing differently isnt going to help me. But shocking thing here is I'm fixed and youre still doing pt and in pain... so tell me how is that helping you when you admit you've never been to a gyn? And see little relief. Just throwing that out there. So please do not attack me when I said go to a physical therapist and get advised I was talking meds which are different. Again pt did very little to help me prior to surgery so thats why I say options open listen to your doc. So clearly youve been arguing with me for over a year and i try damn well not to get involved in posts that you post on for this reason right here. I hope you get Better no one deserves this crap but my.poiny was there are lots of options not all of us are aware of and we might miss.something by being like I want physio or this pill rather than hearing out a doctor and what they think may help. Dont make me.out to be some bitch...

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Re: Appointment tomorrow...any suggestions of what I could ask?

Post  Leslieg on Mon Nov 18, 2013 9:29 pm

Tink, I'm so glad you got a referral! Stay positive day to day. I know how hard that is but I believe with all of my heart that there is a solution for each of us. Sometimes it's trial and error. Do what you have to to make the day tolerable and believe that answers and healing will come. Smile) xo

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Re: Appointment tomorrow...any suggestions of what I could ask?

Post  Kathy100 on Tue Nov 19, 2013 10:30 am

Hi Tink

Well at least she bothered to discuss it with the consultant (one gynae I saw said it didn't exist) & you got a referral - the vulvar skin specialist is one of the people you need to see with this. Hopefully it won't be too long before your appointment comes through. I feel for you having the male student as an observer though!

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Re: Appointment tomorrow...any suggestions of what I could ask?

Post  zarli on Tue Nov 19, 2013 11:10 am

Hi Tink, I have unprovoked vulvodynia and I've been told so much crap over the years. Keep going your doing great a positive mind can achieve amazing things. My vulva specialist who is one of 3 that I see insists I bring my husband to each appointment so she can help him understand ways to help me have sex even though I've told her three times sex doesn't hurt ..... Im on a lot of meds and creams and Im determined to beat this THING.........Glad we are all trying to find cures together. Best of Luck and your never alonexxxxxxx

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Re: Appointment tomorrow...any suggestions of what I could ask?

Post  Sarah001 on Tue Nov 19, 2013 11:36 am

You have the nerve to accuse me of "attacking you" and "making you out to be some sort of bitch" when this is your attitude:

But shocking thing here is I'm fixed and youre still doing pt and in pain... so tell me how is that helping you when you admit you've never been to a gyn? And see little relief.

That's a disgusting thing to say to someone on a health forum and you should be ashamed of yourself. If you've ever read any of my posts you will know why physio is going to be a much longer journey for me than everyone else on here. If you'd actually read any of my posts you would also know I suggest women get ASSESSED by a WH physio and if they were to find no musculoskeletal problem here in the UK they would refer you back to your GP because they have a waiting list of people to get through. Gynaes are not doctors we see regularly here either as we have our pap smears/get treated for infections by our GPs and the Gynae I was referred to was good enough to speak on the phone with me because I would have had difficulty travelling the 4 hours to see him and as a musculoskeletal problem has been ruled in he said he would have sent me straight on to his physio team anyway as he works through the same list of known causes the same way I have. My physio trains his so I'm seeing the best one. And asking for referrals promptly here in the UK is also a good idea as it can take months to get to see someone so asking for several referrals all at once instead of spending 6 months on each particular doctor/specialist then asking for a different referral makes sense time wise.

And after your disgusting gloating comment I don't think you need any help from me to make yourself look bad.
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Re: Appointment tomorrow...any suggestions of what I could ask?

Post  Alana3 on Tue Nov 19, 2013 12:04 pm

Omg sarah grow up the only time you're happy is when everyone is like yay sarah but never when someone else has a suggestion that goes against your own. Every time. You mention physio glad its working seriously but.stop arguing with me.. every time I say something that goes against your belief you freak out. Who cares like you said its a health forum everyone does things different I did I feel better continue with your pt hopefully its helping...in fact glad it is but just stop just kindly grow up this was about tink and helping her which I feel we.both did than you took it to another level. And called me out so I answered have a great day

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Re: Appointment tomorrow...any suggestions of what I could ask?

Post  tinkerbelle2 on Tue Nov 19, 2013 12:41 pm

Thanks Leslie xxxxxx Very Happy Sarah the woman I'll be seeing is called Elizabeth derrick
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Re: Appointment tomorrow...any suggestions of what I could ask?

Post  tinkerbelle2 on Tue Nov 19, 2013 1:06 pm

Kathy and zarli --- I know, it is annoying that people say so many different things or seem to know nothing about it. You would think in their 5 years or however long of studying they would at least briefly come across it! I hope that universities do start to include vulvodynia in gynaecology degrees! I felt a bit sorry for the student, but I am getting so used to talking about my vagina lol! Zarli that's really good that you're hubby comes along sometimes my boyfriend comes with me. I am pleased and so grateful to have someone there to support me. I felt lonely when I was single and had this. Alana it is amazing that you are no longer in pain and Sarah that day will come for you too and all of us i hope. We can't give up! Xxxxx
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Re: Appointment tomorrow...any suggestions of what I could ask?

Post  Alana3 on Tue Nov 19, 2013 1:58 pm

Same thing here I was talking to mary jane and the docs here aren't aware of it unless you go to a specialist... just keep searching til you find what's right for you and keep educated too if.something doesnt sound right its probably not...

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