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New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

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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 …

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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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I GOT THE SURGERY!!

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I GOT THE SURGERY!!

Post  Melonhead627 on Wed Jan 25, 2012 8:18 pm

I got the surgery two days ago on Monday! I stayed overnight in the hospital. The procedure took about an hour and they did the Q-tip test right before they put me under. Good thing too because the pain had gotten sufficiently worse. He put a pain blocker in so that blocked most of the pain for about a day. When I woke up after the procedure I had an intense pressure by my butthole but that went away that night. Yesterday there was a lot of pressure down south, almost like something pushing out from the inside. They gave me percocets which helped tremendously especially because I can't keep down vicadin. I've also been icing almost constantly to keep the swelling down. Sometimes I use a heating pad down there when I take Aleve for the swelling (they're having me alternate between Aleve and percocets). There is a lot of bruising and tightness but I'm glad I got the procedure done. The stitches won't dissolve for a few weeks and I have to wait 6 weeks to have sex with my boyfriend. We are so excited! The pain is really not as bad as I thought it would be and I've had pain for 1 1/2 years so I can deal with it for a week. I'm trying to be as positive as possible about it. That's really the key I think. I've read a lot of horror stories but you know who you are and everyone is different! I really just couldn't deal with it anymore. I had Dr. David Foster and he is absolutely amazing! I saw him in Rochester and went to Strong Memorial Hospital. Everyone is so nice and gentle. Dr. Foster specializes in pain and he is very gentle and kind. He even warms the forceps in before he puts them in. Let me know if you're considering the surgery and I'll answer any questions you have, any! Good luck to all of you and keep up the positivity. Positivity wins the race!!!

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Re: I GOT THE SURGERY!!

Post  BpCookie on Wed Jan 25, 2012 9:18 pm

Hello there Melonhead, I sure hope that your troubles will soon be over. I envy you. I would get the surgery in a heart beat. Ive even said something to my Gyno about it but I swear she ignores everything I say.

How big of an area did they have to cut out? How did you talk your Dr. into doing the surgery? Anything else you would like to add would be very much appreciated.

I just want this pain to go away. Im exhausted from lack of sleep, Im stressed out all the time, Im in constant pain and Im extremely depressed. I just want something to be done about this.

I wish you all the luck in the world.
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Re: I GOT THE SURGERY!!

Post  Melonhead627 on Thu Jan 26, 2012 2:17 am

Hi Bpcookie!!

My gyno wasn't really that understanding and it took her a while to understand the severity of the situation. She kept saying things like "okay we'll try this but it may take a few months to figure it out". Not exactly what I wanted to hear from my doctor. She put me on estrogen creme, lidocaine, and some other things before she referred me to the doctor that did my surgery. Before the surgery he put me on Despiramine because sometimes that helps women with vulvodynia. That delayed the pain but it still came during sex and just as severe. I was on those for another few months. The surgery was pretty much the last option for me and he has done so many of them that I felt very comfortable with him. As for my original gyno, I am planning on dropping her and switching after I am healed from my surgery. I know it may feel like starting over by switching but you go through pain every single day and if your doctor doesn't understand that or can't help you then it's time for you to at least get a second opinion. I didn't have to convince my doctor to give me the surgery. There are a lot of other things they wanted me to do since the surgery is kind of serious but since the other methods failed, this was it for me. If she ignores you, I would walk right out of her office and find someone who deserves your time! You deserve it! No one deserves to be ignored especially about this! I'm 21 and not a lot of women my age have this so it's very hard for me to find someone who understands. I've had it since October 2010 so about 1 1/2 years and it really started to wear on me. I was the same way not getting sleep and feeling bad about myself. I'm an extremely positive person but this was just too hard for me. The surgery went well and there's the swelling and bruising but not as bad as I thought, he put a pain block in which helped a lot! It does look different but I don't think in a bad way at all! Let me know if you decide to switch doctors or if you have any questions at all!

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Re: I GOT THE SURGERY!!

Post  BpCookie on Fri Jan 27, 2012 5:29 pm

Im so very happy for you and I hope that the surgery will eventually take away all the pain. Nobody should have to go through this. Every time I read someones story it breaks my heart and then I get angry because of all the women who suffer and some suffer for many many years. Poor darlings. It makes me want to get a bunch of women together, hold up signs and march to the White House and protest on the stairs. We need more scientific experiments done for this, we need the medical field to take us seriously, we need every day ppl to know that there are thousands of us who suffer from this and we need the world to know that we are not going to suffer in silence any more. If I could I would call every talk show and news station to make ppl more aware of this painful thing that women have to go through.

Ok, I will now step off of my soap box. lol.

What kind of Dr. did you talk to first in order to be referred to a surgeon? Or did you just go to a surgeon and by passed the Dr.s? Let me know how your feeling in the coming days.

hugs to you.
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Re: I GOT THE SURGERY!!

Post  Melonhead627 on Fri Jan 27, 2012 6:47 pm

Hi! I started talking to my gynocologist about the pain and she said there were a few things she wanted me to try first for the pain to go away (estrogen cremes, lidocaine). Everyone has a different level of pain and for some women even just a creme helps the pain go away. After these didn't work she referred me to Dr. Foster who is a gynocologist who specializes in vulvar pain. He immediately diagnosed me and put me on antidepressants. For some women these work but for me these didn't work. The next step was surgery. He is really careful about giving women the surgery because it is pretty serious but the other methods didn't work but maybe they'll work for you! It's been 5 days since the surgery and the stitches are burning a lot but I'm hoping that it's worth it. Let me know if you have any other questions!

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Re: I GOT THE SURGERY!!

Post  smile22 on Fri Feb 10, 2012 3:16 pm

Hi I really hope you have success within the next few weeks Smile
I have suffered for 4 years and have exhausted pretty much all other treatments so surgery may be necessary for me in the future, so I just wanted to say please could you update me/or leave posts for everyone to read about your progress? its just that on other websites I have read stories about surgery then they never write again so it would be great to hear if you find it is successful. Don't worry if you don't want to and sorry to be cheeky asking for updates but if you could I would really appreciate the info!
Thanks and lots of luck for your recovery Smile x

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doing better :)

Post  Melonhead627 on Fri Feb 10, 2012 5:13 pm

Hi, I was just about to post an update about my surgery. I had to miss a week of classes and when you're in grad school it's tough to catch up. I felt the same way about people not posting updates after their surgery and I was so frustrated. I am doing so much better and it's been almost 3 weeks since my surgery. The pain block that my doctor put in wore off after about 1 1/2 days. I iced constantly day and night for about 3 days after I got my surgery and this helped so much. I had an intense pressure on my anus after the surgery but that wore away after 1/2 a day. I'm not going to sugar coat it, it was tough and painful but I thought it would be worse. Considering how much pain I was in before, I think the surgery was worth it! The hardest part is not being able to sit. I was confined to laying down for about 4 days but I was able to get up and go to the bathroom on my own right after the surgery. The first pee after the surgery is extremely bloody which freaked me out but they said it was normal. I wore loose underwear, they're actually women's boxer briefs, so that I could fit a thing of ice down there. I also wore a nightgown for convenience. I had my parents help me a lot so it's nice to have someone get ice and food for you. After 4 days I was able to get up and walk around to get my own ice. Sitting up straight is the hardest part because of the swelling and it's all about finding a comfortable position for me I was laying down but managed to prop myself up with pillows so I was almost sitting up. Sitting like a frog with your knees bent and your feet touching (if you're able to do this) helped me the most. For ice some people like to put it in a plastic glove but I put mine in one of those newspaper sleeves, the plastic ones that the newspaper comes in. I then wrapped a cloth around the plastic to prevent infection. I was surprised that they didn't give me antibiotics. Right after my surgery they alternated me on ibuprofen and percosets every 3 hours. I had my surgery in the early morning and was released the next day. The percoset helped so much! I can't stomach vicodin. I slept a lot which I think helped too. I had my surgery on a Monday and went back to school the next Monday. It was hard to sit in class but I was stubborn and didn't buy one of those donut things to sit on. I'm feeling a lot better! My stitches started to dissolve 2 weeks after my surgery. It's almost 3 weeks after and there are still a couple stitches left. I've been taking warm baths with epsom salt because the stitches cause some irritation and itchiness. They get really hard before they come out and start to poke you. The only other thing that I was worried about was the discharge. I had bleeding for about 1 week but it diminished to nothing. There is vaginal discharge after that and it smells so I've been using a pantiliner to freshen up. I called the nurse and she said it's normal to have smelly discharge and itchiness as long as it's not swollen anymore or starts to become more painful. I stopped taking all forms of medicine for the surgery about 2 weeks after. I was prescribed a lidocaine creme and that has helped tremendously! It itches and burns to put it on but this lasts no more than a minute and numbs everything down there. This helped me be able to go to classes. I am going to try exercising again in a few days. I hope this helps! After some of my stitches dissolved I felt around down there and it seems that my original pain from vulvodynia has gone away. I think it will take some getting used to to not mentally think that there will be pain. It has been mentally draining on me because I am a very busy person and this surgery has slowed me down but I know it's for the better. Something I didn't expect is that some people think I had an abortion because I was out for a while, called it a personal surgery, and can't sit. I have learned to not care what they think, they're not worth my time, and I'm on the path towards healing. 3 weeks until my boyfriend and I can have sex. He has been so patient throughout this and I cannot wait to see how it goes! Let me know if you have any questions at all!

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Re: I GOT THE SURGERY!!

Post  Sarah001 on Fri Feb 10, 2012 9:05 pm

I'm really pleased you're doing well, just wondered if you've been given dilator work to do etc before you attempt sex?
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Re: I GOT THE SURGERY!!

Post  Melonhead627 on Sat Feb 11, 2012 1:12 am

I asked my doctor and he says I don't need to use a dilator. I have not been doing anything to prepare for sex. He says it may take getting used to but he did not recommend using a dilator or anything like that. Hopefully it all works out well Smile

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Re: I GOT THE SURGERY!!

Post  smile22 on Sat Feb 11, 2012 11:49 am

hi thanks, I know it must be very stressful and hard at times but you sound so optimistic which is great Smile. Yes I use lidocaine too, I don't find it completely numbs my pain but it does calm it a little bit, so that's great that its completely numbing it for you as it does seem to suggest that your pain is just from the surgery and not vulvodynia which means hopefully it will disappear for you very soon Smile! Do you mind me asking what exactly the surgery does, like does it remove the nerves that are causing the pain or something? and also do you feel that it has made a big change in appearance? Sorry if these questions are personal I totally understand if you would prefer not to answer them, they are just things I was wondering about. That is a great attitude to have you should just ignore those people because when you are completely healed you will have much more important things to do! Well done for persevering you sound like you are making a speedy recovery!

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Re: I GOT THE SURGERY!!

Post  Melonhead627 on Sun Feb 12, 2012 5:00 pm

Hi, there are different degrees of the surgery but I got a full vestibulectomy. My pain had actually gotten a lot worse before the surgery and my doctor had to remove more tissue than he originally thought. It is pretty much a skin graft. He cut away all of the painful tissue including the hymen that he said was irritated during sex. He then took the nonpainful tissue that was close to and inside of the vaginal hole, pulled it down and sewed it on so that it covered up the part that he cut off. It does look different but I don't think it looks different in a bad way. Everything is more symmetrical now than it was before. There are a few bumps where the stitches pinched together but I've touched them and I don't feel anything. My doctor, David Foster, said that when I have children there will be less ripping because he took away most of the parts that tear during vaginal childbirth. There are only 2 stitches left and I cannot wait for them to come out. Of course they are the ones that have been poking me from day one but I can feel the knot and they should be coming out soon.

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Re: I GOT THE SURGERY!!

Post  smile22 on Mon Feb 13, 2012 9:44 pm

Right ok, so I guess its not the most simplest procedure! that's reassuring to know that you are not upset with the appearance or anything though, its good news. and also good news about the childbirth part, its even a bit of an advantage isnt it Smile. I hope for you that your stitches do come out soon, I would imagine that isn't very comfortable at all. They will be gone soon though and then you will feel much more relieved which is something to look forward to.

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Re: I GOT THE SURGERY!!

Post  Melonhead627 on Mon Feb 13, 2012 10:53 pm

I know I am so excited to see if the surgery was successful Smile It was intimidating and extensive but hopefully it was all worth it

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questions about the surgery...

Post  ashzer0921 on Sun Apr 01, 2012 6:32 am

Hey, I was just reading this post and all the replies. I have been on lydocaine, estrogen, testosterone...etc and nothing works. My doctor said surgery should be a last resort, but still tries to persuade me to come to his $200 an hour therapy sessions....anyways, i dont have any pain for sitting or standing its just all interior pain and major pressure points. Over the past 4 years it has been getting progressively worse to the point where its even pointless to try having sex with my boyfriend cause i cant get an inch in....so i was just wondering so u think i should look into surgery? All the doctors ive asked say "its a last resort", but to me nothing has worked and i really am tired of getting my hopes up. Im only 20 years old so idk how the surgery would go. I just wanted to ask Ur personal preference and about your doctor. he seems very nice from what you have written down.
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Re: I GOT THE SURGERY!!

Post  Melonhead627 on Sun Apr 01, 2012 2:52 pm

I'm 21 and the surgery was literally the last resort. I would try everything else possible before the surgery because it is extensive and somewhat painful but it worked for me. I didn't have pain standing or sitting but I was at the point where my boyfriend and I couldn't have sex. Have you tried anti depressants? Sometimes those work for vulvodynia, they didn't work for me but maybe they'll work for you. The surgery completely fixed my vulvodynia and I don't have pain during sex anymore. My muscles are still tight because I'm nervous but that is getting better. The recovery takes a few weeks but for me it was worth it because it was the last option.

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Re: I GOT THE SURGERY!!

Post  ashzer0921 on Sun Apr 01, 2012 8:49 pm

I have not tried anti depressants yet, but i do have an appt with my doctor on tuesday so ill discuss with him. Im at that point where i cant have sex with my boyfriend and its getting to be more depressing than anyting. Im glad that after you healed that you are able to experience sex again! :}
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Re: I GOT THE SURGERY!!

Post  Melonhead627 on Mon Apr 02, 2012 4:44 pm

I would definitely talk to your doctor about the anti-depressants because they postponed my pain but it still came for me but for other women it works and it is a lot less invasive than surgery. I did notice that I started to feel more down on the anti-depressants so make sure you monitor your feelings and thoughts if you go on the medicine. For me I started to feel more down because vulvodynia is so debilitating and frustrating so keep pursuing your options. Therapy sessions were recommended for me and I went to a few and they helped but I really just needed someone who had it to talk to because no one really understands what it's like. Let me know if you need to talk about it. I've been there and I've come through happier and healthier. When my boyfriend and I had sex for the first time again without pain I was crying I was so happy. I want you to get to that point too. I had it for 1.5 years and it's like it never happened.

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Re: I GOT THE SURGERY!!

Post  ashzer0921 on Mon Apr 02, 2012 10:02 pm

Wow, after reading what u wrote i started to tear up. I have had it for almost 3 years and it keeps getting progressively worse each time. The last time my boyfriend and i tried was November of last year.....he is a great boyfriend and is very understanding but i feel so bad when i see his face when i cant. It a face that i am praying i wont see each time, but like clockwork, it always does happen. Hopefully if im put on antidepressants they'll help.
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Re: I GOT THE SURGERY!!

Post  Melonhead627 on Wed Apr 04, 2012 1:01 am

how did your appointment go?

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Re: I GOT THE SURGERY!!

Post  ashzer0921 on Wed Apr 04, 2012 2:32 am

it went okay, he was really no help. he said since Ive been on all these meds before "theres nothing he can do" i told him a girl in my support group said antidepressants might help. he prescribed Amitriptyline 25mg which i take at bed time and have a follow up apt with him in 2 weeks to see how its going. But he really was trying to sell me to an expensive specialist. and then he suggested i get pregnant and that it would help to have a baby......i was like "im 20 years old and in college......" he just left the room after that.....
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Re: I GOT THE SURGERY!!

Post  Melonhead627 on Wed Apr 04, 2012 2:39 am

my original gynocologist was not really that helpful either and she referred me a specialist in vulvar pain. It may be worth it to get a second opinion because to him you are a patient but this is something you have to deal with everyday. I'd see if you could at least get a second opinion or see the specialist. And if it hurts to have sex how are you going to get pregnant in the first place and you are really young. Try the medicine and if it doesn't work I'd get a second opinion. Believe me you're worth getting a second opinion and you owe it to yourself, your partner, and your sex life!

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Re: I GOT THE SURGERY!!

Post  ashzer0921 on Wed Apr 04, 2012 3:37 am

Yeah, unless your paying hundreds of dollars, Ive noticed, they dont really treat this like its "that bad". imma see how the medicine goes. hopefully it will start working soon. It really causes daily stress. i feel bad for my boyfriend every second that i see that face..you know the look probably
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Re: I GOT THE SURGERY!!

Post  Melonhead627 on Wed Apr 04, 2012 11:05 am

Yeah I know the look, it isn't fun. Don't lose hope!

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Re: I GOT THE SURGERY!!

Post  ashzer0921 on Mon Apr 09, 2012 6:17 am

Well heres an update on my medication, ive been on it for a little under a week and i got really sick, throat swollen throat fever....etc...so i have to call the doctor that prescribed it and see what can be done.
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Re: I GOT THE SURGERY!!

Post  Melonhead627 on Mon Apr 09, 2012 5:09 pm

Feel better! There may be another type of the medicine that you won't have side effects to

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Re: I GOT THE SURGERY!!

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