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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 …

Comments: 4

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, …

Comments: 9

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 …

Comments: 5

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 …

Comments: 4

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 …

Comments: 2

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 …

Comments: 10

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 …

Comments: 1


vestibulectomy

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vestibulectomy

Post  Alana3 on Wed Oct 24, 2012 6:54 pm

Hi guys,

I went back to the doc today after being pain free it hit me again and much worse than it has in the past. I figured he'd just come up with more topicals/pills. Instead he said the dreaded vestibulectomy word. I have obviously thought about it (doc said it cured about 95% of his patients, sounds like good stats to me!) but I was wondering if any of you have had it and what was your experience like? And did you find relief? I don't even care about surgery I just want the damn relief, I can't handle the pain anymore Sad thoughts?

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Re: vestibulectomy

Post  tandaschroeder on Wed Oct 31, 2012 3:53 pm

Alana3 wrote:Hi guys,

I went back to the doc today after being pain free it hit me again and much worse than it has in the past. I figured he'd just come up with more topicals/pills. Instead he said the dreaded vestibulectomy word. I have obviously thought about it (doc said it cured about 95% of his patients, sounds like good stats to me!) but I was wondering if any of you have had it and what was your experience like? And did you find relief? I don't even care about surgery I just want the damn relief, I can't handle the pain anymore Sad thoughts?

I'm definitely going to watch this post. I'm so sorry with what you're dealing with. My doctor said he thinks I should get this too. I've tried everything from creams to steroids, NOTHING has helped me. At this point, I think, Why not try this? With a good doctor of course, I am wondering if it is effective. That's my main question and concern!

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Re: vestibulectomy

Post  Alana3 on Wed Oct 31, 2012 7:00 pm

hey,

Yeah, for sure, if you want you can e-mail or add me to facebook too! I have a hard time seeing if anyone follows my posts here. I am at my wits end- right now it doesn't hurt at all, but I have the provoked one where I def cant use tampons and no sex or I pass out (well maybe not but it does hurt!) On the other hand, it sometimes flares up on its own without being pissed off lol

Yeah, I have tried creams, antibiotics out the wazoo (literally), estrace, etc ect, I am done with this, I just want to feel better I will do about anything. I hate when doctors are like here use a sopository, really?! In case you missed it butthead, a PELVIC HURTS WHY WOULD I WANT TO STICK ANYTHING ADDITIONAL UP THERE!!! haha

But, it wasn't an easy road to trave, and this for sure is not an easy decision. If you're anything like me and have tried a million 'remedies' that have not worked. I don't know what else to do. Crying or Very sad But I put my foot down and said NO MORE to topicals and creams that do nothing for me. If they work, they work, I guess, but not in my case.

Right now, I started spotting early and freaked out because of that (I'm on the pill and all) but its just when anything gets weird down there I freak out, I want it to end and to live like a normal person. But definetely follow and if you have any questions please let me know- I haven't had this surgery yet, but if and when I do I'll let you know Smile

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Re: vestibulectomy

Post  Kate1981 on Thu Nov 01, 2012 12:33 pm

Hi Alana

Im totally with you I just want it all to end. Im on ami, lyrica and try to use lidocane but its burns. I think I must have had mild v for a long time bcos after sex I had a burning feeling a kind of open feeling that my vagina wasnt going back in place if you know what I mean. This happened for years not always but a lot of the time. This I could cope with as the next day it was gone. However now I had sex and after 4 days the burning is excruiating feels like a ball of fire up inside and has never gone. As the burning slightly subsides I get a hot stabbing feeling jus inside the right side. The left of my vestibule is ok its just my right. Is this how you feel? Im trying to understand my symtoms as the 6 doctors ive seen are useless. I would hav sugery 2moro if i thought it would cure me but doctors just seem to discuss it here. Im in the UK where are you? One said it wouldnt work for me as my pain was constant unprovoked but it only started after sex and a speculum exam so isnt it a mixture of the two? Im so depressed ive cried every day for 3 months lost my reltionship it will be my job very soon and then my house.

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Re: vestibulectomy

Post  Alana3 on Thu Nov 01, 2012 1:27 pm

I'm in Florida. My pain is sometimes there; sometimes not, but when I have sex I cry. I don't know fore sure, but I think my ex left me for some girl with a working vagina. Nice. You won't lose anything don't freak out. I had a compounded thing, but the lidocaine (I think) hurt like hell I took myself off without even asking the doctor. But yeah as soon as I stopped that it felt better, the burning all the time made my life hell. As soon as I went off that I've been pain free.

Trust me, I understand feeling helpless, but just concentrate on the postive (if you can) you are otherwise functioning and best of all aren't dying! But it feels like hell, I agree. I have tried everything, estrace, compounds, antibiotics, diflucan, various vitamins, diet, blah blah blah. I'm sick of changing EVERY aspect of my life for a little skin, so my doctor discussed surgery.

From what he told me, it works best when its provoked, localized vestibulitis. But if after sex its been hurting for 4 days, I feel like you may have provoked. My pain eventually does go away, but it hurts like a mother during the few days after sex or a pelvic. After my pelvic, I had so much pain I couldn't take it. And tampons, absolutely forget it! And for me, its mostly on my right side (so I guess its like yours just opposite). If you can afford the trip, my doctor here is amazing and will do everything to avoid surgery, but he isn't against it. He's in West Palm Beach, Fl (I know, I know its a haul). But if you have a last resort, I suggest him, he's on the vulvodynia website so I know he's good, plus my physical therapist ok'd him lol so I feel a lot better about it.

Honestly, what has helped me the most is to be positive and to rest as much as I can, but I also exercise a lot and I have felt a lot better. I mean everyone is different but exercise and changing my attitude has all helped, but it was hard to do and it's a struggle everyday.

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Information on Vestibulectomy

Post  jen007 on Mon Nov 05, 2012 5:48 pm

Hi Alana3,

I saw your post after doing a Google search on vestibulectomys. I had my vestibulectomy this past summer on July 6th.

Before I get into the details of my surgery and recovery, you must know this is not an easy decision to make and it takes time and research. It took me over a year, 4 doctors and many treatments later to finally decide that this was right for me. The only thing I didn't try was pelvic floor therapy because I had such an issue with penetration. All that could go "in there" was a tampon.

Like I said I have gone to at least 4 doctors, only because some of them had never had a patient with my problem. I was properly diagnosed about 2 years ago with PVD (provoked vestibuldynia). Sex was absolutely impossible. My current doctor at the time said that she couldn't really do much more for me, accept look for another doctor/ surgeon to pass me on to. She found me one of most highly praised surgeons who deal with vulvodynia and vestibulectomys. I was ecstatic to know that I'd be in such good hands. (*I would mention the Doctors name, but I'm not sure in this forum allows it.) After speaking with him over the phone he decided that I was definitely a candidate for surgery. I met with him for an examination. He explained to me that I was born with too many nerve endings in that area. He went on to tell me that he's done this surgery many times and know exactly what he is doing. He also gave me the opportunity to contact other women who have had the surgery (I didn't but it was good to know I could).

A few weeks later I had the surgery (a full vestibulectomy, which I recommend because if you only get the partial one and still have issues you're not going to want to go back for another surgery). When I went in they had me put on a gown and sit in a gyno chair. Shortly after they had me knocked out and began surgery. The surgery only takes about 45 minutes to an hour. They have you wake up and get dressed. Before you leave the surgery center or hospital they make sure you can urinate before leaving. The reason behind this is because they want to make sure you aren't too swollen or have an infection. Now I had the experience of not being able to urinate after the surgery and my nurse told me that I could still go home. Not the best advice! If you do go through with the surgery please make sure you stay until you go to the bathroom. I had gotten swollen, which is common after the surgery since they catheter you. If this happens to you just put ice near the area. The swelling will go down and you will be fine! Urinating will NOT hurt! The thing you need to be aware of is going #2...I know its gross, but I didn't really think about it until after the fact. You need to take stool softeners during the first few weeks of recovery. You don't realize all the muscles you use down there for other things and you will be sore.

I didn't have very much pain after the surgery, just a little soreness. The doctor advised me to do sitz baths everyday 3 times a day until I saw him again to keep the area clean and infection free (If you don't know what a sitz bath is, it's just a mini tub pan you put on your toilet, you fill it up with water and sit in it). You just use warm water and that's it! In addition to the sitz baths I laid in bed most of the time. You need to refrain from spreading your legs through out your whole recovery. (This means little to no walking, bending,sitting or stairs.) You can't sit directly on your bottom for some time. Most of the time you will be in bed or laying down. Also you need to ice the area constantly for the first week or 2. I used ice through out the whole period of my recovery so it would numb out the area. Also during the first 2 weeks of recovery you will be bleeding, nothing like a period flow or anything. It's very very minimal. I used those giant pads and some old towels to lay on. You can't put anything directly on the area. Everything needs to be very very clean. You can't wear underwear during the first 3 to 4 weeks. It can cause stitches to pop and the rubbing is just uncomfortable. I suggest only wearing long dresses or over sized sweat pants.

I didn't see my doctor/ surgeon until 6 weeks after my surgery. Once it's been about 5 to 6 weeks you should be able to go back to normal routines, but I'd suggest taking off from work, school or any activity that doesn't involve laying down and relaxing. When I went back to see the doctor he had done the dreaded Q-tip test on me and I was stunned. I had no pain in any of my once painful areas! Just minimal pain on where skin had been removed. After surgery you must must must used dilators. They come in 5 different sizes. You need these to stretch out the area. If you have a little pain after surgery the dilators will help.

It's been 5 months since my surgery and I'm still doing well! I have gotten up to the largest size dilator with very minimal pain. I'm due to see my doctor on the 16th of this month and should get the "OK" for sex. My doctor advised me to wait until after the 6 month appointment to have sex. Everything needs to be healed before attempting sex.

You also need to know that this surgery isn't for everyone. Sometimes it works and sometimes it doesn't. I believe if you have a similar vulvodynia to mine that the surgery would definitely be helpful to you. I'm pretty sure that no one has every been 100% cured by this surgery, but you will get very close. I'd say at this point I'm about 95-98% cured. If you know the pain then you'll understand that is a very good out come. I wanted to guide you and anyone else to another forum that I use, that is if it is ok. I won't post it here, just in case because I don't want this post to be removed. Let me know if you want me to privately message it to you. It has a conversation about vestibulectomys that has been going on for over 7 years and it's very helpful. It really helped me decide on whether or not I really wanted to do this.

I hope I was of some help to you. I struggled a lot to find out all the right information when I was first thinking about getting this done. Let me know if you have any questions!

-Jen

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Re: vestibulectomy

Post  tandaschroeder on Mon Nov 05, 2012 6:00 pm

jen007 wrote:Hi Alana3,

I saw your post after doing a Google search on vestibulectomys. I had my vestibulectomy this past summer on July 6th.

Before I get into the details of my surgery and recovery, you must know this is not an easy decision to make and it takes time and research. It took me over a year, 4 doctors and many treatments later to finally decide that this was right for me. The only thing I didn't try was pelvic floor therapy because I had such an issue with penetration. All that could go "in there" was a tampon.

Like I said I have gone to at least 4 doctors, only because some of them had never had a patient with my problem. I was properly diagnosed about 2 years ago with PVD (provoked vestibuldynia). Sex was absolutely impossible. My current doctor at the time said that she couldn't really do much more for me, accept look for another doctor/ surgeon to pass me on to. She found me one of most highly praised surgeons who deal with vulvodynia and vestibulectomys. I was ecstatic to know that I'd be in such good hands. (*I would mention the Doctors name, but I'm not sure in this forum allows it.) After speaking with him over the phone he decided that I was definitely a candidate for surgery. I met with him for an examination. He explained to me that I was born with too many nerve endings in that area. He went on to tell me that he's done this surgery many times and know exactly what he is doing. He also gave me the opportunity to contact other women who have had the surgery (I didn't but it was good to know I could).

A few weeks later I had the surgery (a full vestibulectomy, which I recommend because if you only get the partial one and still have issues you're not going to want to go back for another surgery). When I went in they had me put on a gown and sit in a gyno chair. Shortly after they had me knocked out and began surgery. The surgery only takes about 45 minutes to an hour. They have you wake up and get dressed. Before you leave the surgery center or hospital they make sure you can urinate before leaving. The reason behind this is because they want to make sure you aren't too swollen or have an infection. Now I had the experience of not being able to urinate after the surgery and my nurse told me that I could still go home. Not the best advice! If you do go through with the surgery please make sure you stay until you go to the bathroom. I had gotten swollen, which is common after the surgery since they catheter you. If this happens to you just put ice near the area. The swelling will go down and you will be fine! Urinating will NOT hurt! The thing you need to be aware of is going #2...I know its gross, but I didn't really think about it until after the fact. You need to take stool softeners during the first few weeks of recovery. You don't realize all the muscles you use down there for other things and you will be sore.

I didn't have very much pain after the surgery, just a little soreness. The doctor advised me to do sitz baths everyday 3 times a day until I saw him again to keep the area clean and infection free (If you don't know what a sitz bath is, it's just a mini tub pan you put on your toilet, you fill it up with water and sit in it). You just use warm water and that's it! In addition to the sitz baths I laid in bed most of the time. You need to refrain from spreading your legs through out your whole recovery. (This means little to no walking, bending,sitting or stairs.) You can't sit directly on your bottom for some time. Most of the time you will be in bed or laying down. Also you need to ice the area constantly for the first week or 2. I used ice through out the whole period of my recovery so it would numb out the area. Also during the first 2 weeks of recovery you will be bleeding, nothing like a period flow or anything. It's very very minimal. I used those giant pads and some old towels to lay on. You can't put anything directly on the area. Everything needs to be very very clean. You can't wear underwear during the first 3 to 4 weeks. It can cause stitches to pop and the rubbing is just uncomfortable. I suggest only wearing long dresses or over sized sweat pants.

I didn't see my doctor/ surgeon until 6 weeks after my surgery. Once it's been about 5 to 6 weeks you should be able to go back to normal routines, but I'd suggest taking off from work, school or any activity that doesn't involve laying down and relaxing. When I went back to see the doctor he had done the dreaded Q-tip test on me and I was stunned. I had no pain in any of my once painful areas! Just minimal pain on where skin had been removed. After surgery you must must must used dilators. They come in 5 different sizes. You need these to stretch out the area. If you have a little pain after surgery the dilators will help.

It's been 5 months since my surgery and I'm still doing well! I have gotten up to the largest size dilator with very minimal pain. I'm due to see my doctor on the 16th of this month and should get the "OK" for sex. My doctor advised me to wait until after the 6 month appointment to have sex. Everything needs to be healed before attempting sex.

You also need to know that this surgery isn't for everyone. Sometimes it works and sometimes it doesn't. I believe if you have a similar vulvodynia to mine that the surgery would definitely be helpful to you. I'm pretty sure that no one has every been 100% cured by this surgery, but you will get very close. I'd say at this point I'm about 95-98% cured. If you know the pain then you'll understand that is a very good out come. I wanted to guide you and anyone else to another forum that I use, that is if it is ok. I won't post it here, just in case because I don't want this post to be removed. Let me know if you want me to privately message it to you. It has a conversation about vestibulectomys that has been going on for over 7 years and it's very helpful. It really helped me decide on whether or not I really wanted to do this.

I hope I was of some help to you. I struggled a lot to find out all the right information when I was first thinking about getting this done. Let me know if you have any questions!

-Jen

Thank you so much for this, Jen! I Have thought so much about surgery but I am having second thoughts. My doctor is VERY knowledgeable on the topic, which helps. I am trying other options but nothing seems to be working for me. If you are 98% healed, does that mean sex won't HURT you anymore? Thank you so much for your input. IT helps me out so much. Because I'm nervous this expensive surgery I am about to get isn't going to do anything.

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Re: vestibulectomy

Post  Alana3 on Mon Nov 05, 2012 6:16 pm

I'm only doing a partial my doctor thinks its too drastic to do the whole thing when I only have very localized pain. Another girl on here is using the same doctor as me and he told her the same thing. I hadn't heard the no underwear deal, but I guess it makes sense, someone told me they send you home in underwear. I guess everyone's surgery is different. And I haven't discussed dialtors, but my issue really isn't muscular (I went to PT and the only time it really bothered me was upon penetration, same thing with my boyfriend at the time, it was fine as long as he was in, but getting in was terrible).

At the end of the day, I guess you're glad you went ahead and did it? And by normal activities do you mean working out (and I also horseback ride and I'm wondering how quick I can jump back up on my horse :/) I don't know... My doc mentioned he doesn't use a catheter, and I def heard the stool softener, that is HIGH on my list! I do not want to be sore because I have to poo lol All in all, you seem to be doing well, thanks for sharing your story! And the bleeding is more like spotting? that is SO annoying that you have to bleed as if we don't bleed enough haha

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Answers to questions

Post  jen007 on Tue Nov 06, 2012 10:16 pm

EDIT: **Just to let the both of you know I didn't realize that I had two people respond to me when I originally wrote this. I thought I was only responding to Alana3 ( Sorry tandaschroeder!....I think you will still get the proper answers to your questions and a little more!) Again sorry, I'm still not used to this forum!**


I know that the thought of getting the surgery is really scary. This was my second surgery (the other being wisdom teeth removal) and it was scary, but it's not nearly as bad as you think it would be. I'm the biggest worrier on the plant and if I can do it anyone can.


To answer your questions:

Does sex hurt me anymore?

.... I haven't been able to have sex yet. My doctor asked me to wait until after my 6 month appointment, which is scheduled for the 16th of this month. When you use the dilators you get an idea of how you could handle a person (I assume) and when I use them it's a little uncomfortable, but not anything like it used to be. Very minimal pain, as long as I remember to use them every night. If you do use them make sure to use them every night or else the muscles will tighten back up and it will make it hard to have sex or use tampons.

And about the dilators, they are not just for people with muscular problems down there. It is crucial that you use them after surgery. You need them, especially after surgery, to keep your muscles stretched. You also need them to stretch out the areas that your surgeon cuts. Those areas will hurt if not properly stretched. I know this from experience. The dilators hurt bad when I went up to the second size because of the incisions made. After using them the pain eventually dissipated. I never did PT because it didn't fit into my schedule at them time (I'm a full time college student.).

*About the no underwear thing, I did wear underwear home in the car, BUT not again until about 4-5 weeks after recovery.

Am I glad I went ahead with it?

....At this point I'm pretty happy that I did it. I'm not 100% about it yet since I haven't tried to have sex yet, but I feel so far that it has been successful for me. I believe it will be for you too. I also have localized PVD. Mine pretty much surrounded the entire entrance area to the vagina. It was very painful, like a hot knife like feeling when ever it was touched. I somehow managed to use tampons though, as long as I used a plastic applicator. Localized PVD is usually the most successful with surgery from what I've researched and of coarse from what my doctor has told me.

By normal activities I mean walking, sitting, going to work/school, working out, driving...things you do on a regular basis. However, I would NOT recommend horse back riding for a while. You need to lay down and relax as much as possible. I'd wait a little while, even after recovery, to get back on a horse. Bouncing up and down on a horse probably wouldn't feel too good since you'll still be sore and could be irritated. I believe if you're getting the partial vestibulectomy, rather than 6 weeks recovery, you will only have a 4 week recovery period. So I'd say wait till that 6 week point or till after you see your doctor to get back on your horse. That just my personal opinion though.

The catheter is only used during the surgery. I think it's to make sure you can still urinate afterwards or to see if there was any infection. I do suggesting peeing before getting the surgery though, I know it's gross to talk about, but you'll be more comfortable after t he surgery if your bladder isn't full.

The bleeding is more than spotting, but less than a period flow. This is kinda gross, but it's just going to kinda of ooze for about a week or two. The blood isn't the same as period blood. It's very light, nothing too gross.

Another thing I just remembered though. My doctor advised me to wait 3-4 days before taking a standing shower. He just wanted me to take sitz baths for those first few days until I was a little more healed up before trying to get in the shower. Don't try to sit in a bath tub either! You'll hurt yourself and potentially pull a stitch. Also if you pull a stitch it shouldn't be too much to worry about, but do call your doctor if it happens with in the first few days or few weeks. If it happens after about 2-3 weeks its normal.

Also the cost is very expensive. My doctor did not accept insurance and it ended up costing me around $12,000. It is very expensive, but to me worth it if you want to have any sort of sex life/ normal life.

I'm going to send you two links in a separate post just in case they aren't allowed on this forum just so they don't delete this post. One will link you to the exact instructions my doctor gave me. The second is another forum worth checking out before deciding on what to do. It's the one that helped me decide on if this was right for me or not. They have monitors that respond and many women who will reply. I've written on there a few times now (this is the forum I mentioned in my last post).

I really hope I could be of some help to you and anyone else out there whose dealing with the condition. It is a truly awful thing to go through especially alone. I'm lucky to have a good support system. Sadly this condition isn't 100% curable, but the surgery can come pretty close. It is different for everyone. Like I said in my last post it could make you better or make you worse. To me, you have a good chance of having a successful surgery.

If you have any other questions please feel free to ask me! I had such a hard time finding answers to the little things and I want to help anyone I can.

-Jen
[u]


Last edited by jen007 on Tue Nov 06, 2012 10:31 pm; edited 1 time in total

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Re: vestibulectomy

Post  tandaschroeder on Tue Nov 06, 2012 10:30 pm

jen007 wrote: Alana3 and tandaschroeder,

I know that the thought of getting the surgery is really scary. This was my second surgery (the other being wisdom teeth removal) and it was scary, but it's not nearly as bad as you think it would be. I'm the biggest worrier on the plant and if I can do it anyone can.

To answer some of your questions:

*About the no underwear thing, I did wear underwear home in the car, BUT not again until about 4-5 weeks after recovery.

Does sex hurt me anymore?

.... I haven't been able to have sex yet. My doctor asked me to wait until after my 6 month appointment, which is scheduled for the 16th of this month. When you use the dilators you get an idea of how you could handle a person (I assume) and when I use them it's a little uncomfortable, but not anything like it used to be. Very minimal pain, as long as I remember to use them every night. If you do use them make sure to use them every night or else the muscles will tighten back up and it will make it hard to have sex or use tampons.

And about the dilators, they are not just for people with muscular problems down there. It is crucial that you use them after surgery. You need them, especially after surgery, to keep your muscles stretched. You also need them to stretch out the areas that your surgeon cuts. Those areas will hurt if not properly stretched. I know this from experience. The dilators hurt bad when I went up to the second size because of the incisions made. After using them the pain eventually dissipated. I never did PT because it didn't fit into my schedule at them time (I'm a full time college student.).

Am I glad I went ahead with it?

....At this point I'm pretty happy that I did it. I'm not 100% about it yet since I haven't tried to have sex yet, but I feel so far that it has been successful for me. I believe it will be for you too. I also have localized PVD. Mine pretty much surrounded the entire entrance area to the vagina. It was very painful, like a hot knife like feeling when ever it was touched. I somehow managed to use tampons though, as long as I used a plastic applicator. Localized PVD is usually the most successful with surgery from what I've researched and of coarse from what my doctor has told me.

By normal activities I mean walking, sitting, going to work/school, working out, driving...things you do on a regular basis. However, I would NOT recommend horse back riding for a while. You need to lay down and relax as much as possible. I'd wait a little while, even after recovery, to get back on a horse. Bouncing up and down on a horse probably wouldn't feel too good since you'll still be sore and could be irritated. I believe if you're getting the partial vestibulectomy, rather than 6 weeks recovery, you will only have a 4 week recovery period. So I'd say wait till that 6 week point or till after you see your doctor to get back on your horse. That just my personal opinion though.

The catheter is only used during the surgery. I think it's to make sure you can still urinate afterwards or to see if there was any infection. I do suggesting peeing before getting the surgery though, I know it's gross to talk about, but you'll be more comfortable after t he surgery if your bladder isn't full.

The bleeding is more than spotting, but less than a period flow. This is kinda gross, but it's just going to kinda of ooze for about a week or two. The blood isn't the same as period blood. It's very light, nothing too gross.

Another thing I just remembered though. My doctor advised me to wait 3-4 days before taking a standing shower. He just wanted me to take sitz baths for those first few days until I was a little more healed up before trying to get in the shower. Don't try to sit in a bath tub either! You'll hurt yourself and potentially pull a stitch. Also if you pull a stitch it shouldn't be too much to worry about, but do call your doctor if it happens with in the first few days or few weeks. If it happens after about 2-3 weeks its normal.

Also the cost is very expensive. My doctor did not accept insurance and it ended up costing me around $12,000. It is very expensive, but to me worth it if you want to have any sort of sex life/ normal life.

I'm going to send you two links in a separate post just in case they aren't allowed on this forum just so they don't delete this post. One will link you to the exact instructions my doctor gave me. The second is another forum worth checking out before deciding on what to do. It's the one that helped me decide on if this was right for me or not. They have monitors that respond and many women who will reply. I've written on there a few times now (this is the forum I mentioned in my last post).

I really hope I could be of some help to you and anyone else out there whose dealing with the condition. It is a truly awful thing to go through especially alone. I'm lucky to have a good support system. Sadly this condition isn't 100% curable, but the surgery can come pretty close. It is different for everyone. Like I said in my last post it could make you better or make you worse. To me, you have a good chance of having a successful surgery.

If you have any other questions please feel free to ask me! I had such a hard time finding answers to the little things and I want to help anyone I can.

-Jen

Jen, you have no idea how much your advice has helped. THANK YOU so much. I've had so many mixed answers--and you clarified so much. I would love to see your links. I can't believe how expensive your surgery was! My insurance isn't accepted either--and it's about 3,000 at the MOST. I am lucky. BUT at the same time...You can't really put a price on this kind of thing, you know? Especially the sex part--it's just a part of life. And I would easily spend $12,000 if it meant fixing me. You will have to let me know how the sex part goes--if you're comfortable doing that. Haha! That is my major concern! When would you suggest doing this? Like at what point? I can easily put tampons in. But anything other than that, is a major no no.

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Links

Post  jen007 on Tue Nov 06, 2012 10:38 pm

Sadly I can't post the links until seven days after my registration. I will post them next week or send them in private messages if anyone requests them.

-Jen

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Reply to tandaschroeder

Post  jen007 on Tue Nov 06, 2012 11:08 pm

tandaschroeder,

You're so welcome! I hated not knowing what the surgery was really going to be like. Every once in a while I google vestibulectomy to see whose talking about it. I want to help anyone I can who has questions about the surgery. And I agree, you can't put a price on your sex life!

Haha no worries, I have no problem letting you know how sex goes! At this point I don't feel uncomfortable talking about vulvodynia anymore. It's been so prevalent in my life that I have just gotten used to talking about it.

Depending on if you are getting a full vestibulectomy or partial will determine how long you have to wait for sex. I had a full vestibulectomy and my doctor advised me to wait until 6 months after surgery. It could take as long as 8 months to a year or so to fully heal. BUT this depends on the person. Some people heal faster than others. In my case its been 6 months now since my surgery.Only my perineum and the area where my hymen used to be are a little sore when I use dilators. Those areas take the longest to heal. Other wise the pain is very minimal. Luckily I have had, up to this point, a pretty positive experience with the surgery. Don't always listen to everyone who says they had a bad experience. It just depends on the person, but most importantly the surgeon. Make sure you're doctor has done a few surgeries...Mine has done 100+ surgeries (the day I went in for surgery I was his third surgery that morning!).

Which have you been advised to get done? (a full or partial vestibulectomy)

-Jen

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Re: vestibulectomy

Post  tandaschroeder on Tue Nov 06, 2012 11:33 pm

jen007 wrote:tandaschroeder,

You're so welcome! I hated not knowing what the surgery was really going to be like. Every once in a while I google vestibulectomy to see whose talking about it. I want to help anyone I can who has questions about the surgery. And I agree, you can't put a price on your sex life!

Haha no worries, I have no problem letting you know how sex goes! At this point I don't feel uncomfortable talking about vulvodynia anymore. It's been so prevalent in my life that I have just gotten used to talking about it.

Depending on if you are getting a full vestibulectomy or partial will determine how long you have to wait for sex. I had a full vestibulectomy and my doctor advised me to wait until 6 months after surgery. It could take as long as 8 months to a year or so to fully heal. BUT this depends on the person. Some people heal faster than others. In my case its been 6 months now since my surgery.Only my perineum and the area where my hymen used to be are a little sore when I use dilators. Those areas take the longest to heal. Other wise the pain is very minimal. Luckily I have had, up to this point, a pretty positive experience with the surgery. Don't always listen to everyone who says they had a bad experience. It just depends on the person, but most importantly the surgeon. Make sure you're doctor has done a few surgeries...Mine has done 100+ surgeries (the day I went in for surgery I was his third surgery that morning!).

Which have you been advised to get done? (a full or partial vestibulectomy)

-Jen

I am going to the doctor on Thursday to figure out if it's full or partial!

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Re: vestibulectomy

Post  jen007 on Tue Nov 06, 2012 11:36 pm

tandaschroeder wrote:
jen007 wrote:tandaschroeder,

You're so welcome! I hated not knowing what the surgery was really going to be like. Every once in a while I google vestibulectomy to see whose talking about it. I want to help anyone I can who has questions about the surgery. And I agree, you can't put a price on your sex life!

Haha no worries, I have no problem letting you know how sex goes! At this point I don't feel uncomfortable talking about vulvodynia anymore. It's been so prevalent in my life that I have just gotten used to talking about it.

Depending on if you are getting a full vestibulectomy or partial will determine how long you have to wait for sex. I had a full vestibulectomy and my doctor advised me to wait until 6 months after surgery. It could take as long as 8 months to a year or so to fully heal. BUT this depends on the person. Some people heal faster than others. In my case its been 6 months now since my surgery.Only my perineum and the area where my hymen used to be are a little sore when I use dilators. Those areas take the longest to heal. Other wise the pain is very minimal. Luckily I have had, up to this point, a pretty positive experience with the surgery. Don't always listen to everyone who says they had a bad experience. It just depends on the person, but most importantly the surgeon. Make sure you're doctor has done a few surgeries...Mine has done 100+ surgeries (the day I went in for surgery I was his third surgery that morning!).

Which have you been advised to get done? (a full or partial vestibulectomy)

-Jen

I am going to the doctor on Thursday to figure out if it's full or partial!



tandaschroeder,

Good, please let me know how it goes!

-Jen

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Re: vestibulectomy

Post  Alana3 on Wed Nov 07, 2012 8:44 pm

Yeah I heard most of that but some of it was never mentioned by my doc, but I havent had my preop yet, so we'll see. How in the world can you keep clean if you cant take a shower? And he said no catheterer but maybe every surgeon is different? How long was your surgery maybe thats why?

I really appreciate the response it makes it sounds so much better. I want to have sex so bad!!!! That and tampons lol I guess I can wait 6 weeks to ride, but I will for sure be able to ride again??! Right?

Another question, did youguys sometimes feel like you had to pee often. It's so Annoying!!!!

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Re: vestibulectomy

Post  jen007 on Thu Nov 08, 2012 4:02 am

Alana3 wrote:Yeah I heard most of that but some of it was never mentioned by my doc, but I havent had my preop yet, so we'll see. How in the world can you keep clean if you cant take a shower? And he said no catheterer but maybe every surgeon is different? How long was your surgery maybe thats why?

I really appreciate the response it makes it sounds so much better. I want to have sex so bad!!!! That and tampons lol I guess I can wait 6 weeks to ride, but I will for sure be able to ride again??! Right?

Another question, did you guys sometimes feel like you had to pee often. It's so Annoying!!!!

The reason why my doctor advised me not to shower was because it would be hard to get in and out after the first few days of having surgery. As I said before, I took sitz baths to keep the area clean. Its a tub that fits into your toilet that you just sit in with warm water for about 10-15 minutes, 3 times a day. It's very soothing.

Every surgeon is different yes. Different surgeons do different things. My surgery was about 45 minutes long, but I'm pretty sure time had nothing to do with it. It's just to make sure that everything works properly after surgery.

I'm happy I can help someone feel better about this. It's not nearly as bad as it may seem. It's what happens after recovery that is scary really. As long as you relax and take it easy for a month or two all will be good. Sex is very important and tampons are amazing, especially after the surgery. You don't feel them at all! Which can be bad because it's easy to forget there's something in there haha.

And you should be able to ride again. Do ask your doctor about it though before trying it. I'm sure that they would approve, you just have to see how it feels afterwards. For me I always had trouble wearing tight jeans and would always have to wear jeggings....now I can wear what ever I want and feel comfortable. Hopefully that will be the case for you and your horse!

With the peeing thing, it definitely has something to do with it. It does happen to me and I have seen other women mention it on other blogs. I can tell you though that surgery doesn't make it go away sadly.

Let me know if you have any more questions or just need advice!

-Jen

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Re: vestibulectomy

Post  Alana3 on Thu Nov 08, 2012 8:04 pm

The peeing issue doesnt really bother me but today holy moly I gotta go!!!! haha but I also did drink more than usual so that may be why! I'm just over it, overall would you do this again? Are you happy with results?

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Re: vestibulectomy

Post  jen007 on Thu Nov 08, 2012 11:19 pm

Alana3,

Our bladders must be linked today or something...haha! I try to drink a lot of cranberry juice, for some reason I feel like it helps a little.

Would I do it all over again?....Yeah I think so. So far I'm not in any pain, as long as I keep up with dilators. If I have any pain it's pretty minimal, nothing a little lidocane ointment can't fix! And yes I'm happy with the results. At first I was freaked out because well it looks different down there. If you get a partial maybe not so much, but with the full you can tell the difference. Even if you don't remember what it looked like before, it feels different after. BUT to me that doesn't matter. I mean really no one is going to really stick their face down there accept for the doctor...or if you're into that sort of thing haha! But what I'm trying to say is no one is going to care about how it looks, I don't anyway.

Btw Alana3, are we allowed to post the names of doctors/surgeons on here? And if we are who is yours? I'm just curious. I'd love to be able to recommend mine to anyone who wants to check him out.

-Jen

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Links!

Post  jen007 on Sat Nov 17, 2012 4:58 am

Hi Ladies,

Here are those links I promised!

Other Forum:
http://www.hisandherhealth.com/

Vestibulectomy recovery instructions:*NOTE* I'm not saying to follow these by any means, this is just an example for you guys in case you decide to go ahead with it. These are the exact instructions I followed. Also this is for a full vesibulectomy.

http://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&ved=0CDAQFjAA&url=http%3A%2F%2Fpelvicpainnewyork.com%2Fabout-us%2FPost%2520Operative%2520Instructions%2520for%2520Vestibulectomy11_11.pdf&ei=NhmnUOTkLJS00AHCnoCABw&usg=AFQjCNF5b5Rti6BjpP3HGEdtllfh17_gvw&sig2=jAQ9gjOQW7WGaQdGWIWE1w

-Jen


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Re: vestibulectomy

Post  Alana3 on Wed Nov 28, 2012 7:58 pm

Got my preop today

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Re: vestibulectomy

Post  jen007 on Thu Nov 29, 2012 11:56 pm

How did it go??

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Re: vestibulectomy

Post  Alana3 on Fri Nov 30, 2012 12:02 am

It was good im more confident I think

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Re: vestibulectomy

Post  jen007 on Fri Nov 30, 2012 12:09 am

That's good! I'm sorry, I forgot when you said you were getting your surgery??

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Re: vestibulectomy

Post  Alana3 on Fri Nov 30, 2012 12:27 pm

Dec 5 but only a partial

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Re: vestibulectomy

Post  jen007 on Sat Dec 01, 2012 2:25 am

Alana3 wrote:Dec 5 but only a partial

Oh, right. I really hope it helps you!

Let me know if you have any last minute questions.

-Jen

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