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New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

Comments: 13

Hello. Happy to have found this group.

Fri Dec 07, 2018 9:01 pm by foxysugarpants

I am new here and hope to gain some insight into my vulva pain. I suffered for a long time not realizing that there are ways to feel better. I saw the Dr. yesterday and I am starting P/T pelvic and valium suppositories. queen

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Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

Comments: 3

Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

Comments: 6

Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

Comments: 4

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 4

6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

Comments: 0

Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 5


What do I need after a vestibulectomy?

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What do I need after a vestibulectomy?

Post  Mll2013 on Fri May 13, 2016 11:58 pm

Hello,
I am new on here and I will be having a vestibulectomy in a few weeks for my provoked vestibulydinia. I am trying to figure out everything I need and if there are any tips to help ease the recovery? What kind of clothes should I bring to the hospital afterwards? I figured something loose? What kinds of ice or ice packs worked best? Etc... Any tips would really be appreciated! I am nervous for the surgery, but am praying it will help, it is my last option! Thank you all in advance!

Mll2013

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Re: What do I need after a vestibulectomy?

Post  jen007 on Sun May 15, 2016 7:23 pm

Hi Mll2013,

Hope I'm getting back to you before your surgery so you can be properly prepared for your after care! I had a vestibulectomy 4 years ago for my PVD as well. Wasn't easy to find information on how things went post surgery. I have some tips that I hope will help you during your recovery period. First things first, take the time needed to recover, meaning don't rush back into everyday activities before you're ready. I stayed in bed for the first week or so before I started to walk just around my house. I suggest if you're working you take off for at least 3-4 weeks. Something I did was when I did try to walk I kept my knees together...sounds strange, but you don't want to pull stitches from walking around. As far as what to wear/ bring to the hospital, I wore very loose comfortable clothing. I did have underwear, which was 100% cotton. I'm not sure if I brought pads or if they were given to me, but if you're going to be traveling home you'll need a pad, but only if you're traveling otherwise don't wear one - it will irritate you. For ice packs, gel is the best. You can mold them just how you want them. I also filled some ziplock bags with water and stuck them in the freezer. Always keep a cotton towel wrapped around the ice packs you use - they're the most sanitary plus you need a barrier between your skin and the ice pack. Before all of that, you should definitely buy yourself a sitz bath - its a little tub you stick over your toilet that you fill with water to soak yourself in. I wouldn't recommend getting in and out of a tub for a while. You'll risk pulling stitches or get stuck in there. I soaked up to 3 times a day with warm water. You can even put a little bit of salt in the water to help heal your skin and keep it clean. Don't put any soap down there. Also, another thing you can buy are large cotton pads to sit on while you're in bed. They are like the kind you buy to house train your dog. These will come in handy when you have your period. Don't use pads for your period! I didn't start to use pads until after about a month or 2. If you can, try to stay on the first level of your home or somewhere you won't have to use stairs...lifting your legs to use the stair can pull stitches. My doctor told me I could walk backwards down the stairs, that way I don't have to lift my legs as much, but that's not very safe to do - especially if you're alone.

I hope these tips will help you! I'll try to check back here to see if you have any questions. Feel free to direct message me here if you have a pressing question about recovery...I have it set up so I get a notification when someone DM's me.

Good Luck!

-Jen


Last edited by jen007 on Sun May 15, 2016 7:23 pm; edited 1 time in total (Reason for editing : SP)

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Re: What do I need after a vestibulectomy?

Post  Mll2013 on Sat Jun 04, 2016 11:19 pm

Thank you Jen! Your info had been helpful. I had my surgery yesterday. In a lot of pain, but hoping it will all be worth it! I was wondering if you remembered how long it was until you could sleep on your side? Also, for your sitz bath did you just use warm water? I tried on earlier and it was very painful, I will try again tomorrow. For now I am just rinsing off with a bottle.
Lastly, I was just curious how are you doing now 4 years after the surgery? Have your pains been resolved?
Thanks again for your previous response, it is nice to have someone to ask questions to

Mll2013

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Re: What do I need after a vestibulectomy?

Post  emalita on Tue Jun 07, 2016 6:39 pm

Mll2013 - Just checking in to see how you're doing. I hope the pain from surgery is getting a little less every day sunny

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Re: What do I need after a vestibulectomy?

Post  Mll2013 on Tue Jun 07, 2016 6:51 pm

Today is a bad day. I need to have a bowel movement but the pain from the stitches makes it hard to push. It is excruciating. I've been able to go a small amount but am not able to finish. I've not had much blood the last couple days; but now there is a lot. Is this normal?

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Re: What do I need after a vestibulectomy?

Post  emalita on Tue Jun 07, 2016 7:09 pm

I'm so sorry to hear that. I've never had the surgery so I can't speak to what is normal. However, from other injuries that I've had stitches with, having more blood as the days go on wasn't normal unless I had a stitch stretch too much or if the blood was actually leftover dried blood that was now washing away. I'm sure it is too painful for you to take a look down there, but that may be the only way to see where the blood is coming from.

As far as painful bowel movements, have you tried using a stool softener? I'm sure they make OTC ones that you can buy, but I also think aloe vera is used for softening stools, which can be purchased at a natural foods store.

When is your next follow up with your doctor?

I hope you heal quickly!

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Re: What do I need after a vestibulectomy?

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