Log in

I forgot my password

Latest topics
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 …

Comments: 3

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

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

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

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

Comments: 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

Comments: 0

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


MY STORY & Vestibulectomy 2/8/17

Go down

MY STORY & Vestibulectomy 2/8/17

Post  sj17 on Mon Aug 07, 2017 5:17 pm

Hello all,

I haven't really posted a general description to the forum of myself or my condition, but having just had the vestiublectomy surgery and wanting to inform other women of my condition and my healing process, I thought now was as good a time as any! I got diagnosed with unprovoked Vulvodynia when I was 15 years old. I'm now 21. This was after I attempted intercourse for the first time with my (then) boyfriend. We thought I was just very tight down there but it took a hell of a lot of lube (and Vaseline cream...in hindsight..ouch!! definitely should not have used that) to get it in. After a few times having sex, the next day, the horrible burning pain ensued and I literally felt like someone had set my bits on fire!! I thought it might be a water infection, however something inside of me just knew it had to be something worse as it burned ALL the time, not just when I went to the toilet. Around that time, I have lost track of the amount of countless visits I made to the GP and the emergency doctors, antibiotics for UTI's, swabs for infections (which hurt like hell might I add - they put a speculum inside there despite knowing how much pain I was in) and eventually I was referred to a dermatologist at Leigh hospital (I am from England, btw). The dermatologist did the Q-tip test there and instantly diagnosed me with Vulvodynia, which is something I had thought for a while as I was sensitive to the touch of the Q-tip all around my clock face. She started me on Gabapentin, which did not work and we then tried Amitryptilline, numerous creams and potions...which also didn't work. I also saw a gyno around this time who inspected me and said everything looks "normal down there" and insisted nothing was probably wrong - I think doctors probably thought a stupid 15 year old was probably just making up stories about having pain in her vagina.

Eventually I was referred onto the Pain Management clinic at Wythenshawe hospital, which is a good clinic might I add, if you are in the area I would recommend being referred to them!! I saw Dr de Mello. We tried other forms of nerve ending reducing pain medications and eventually we tried the steroid injections. I only tried them September last year as my pain mysteriously went away around March 2013 and I was not going to trigger it with steroid injections!! However, the pain was still provoked pain. Within that time period, I could not have sex. September 2016 it came back with a vengeance and I mean pain I had never experienced before. I had to leave university, after just starting because I could not bear the pain. The steroid injections did absolutely NOTHING. I decided I would not try a second lot as I don't think they were going to get me anywhere. I moved onto another vulval clinician at Whiston hospital who was supposed to be renowned. She did a series of vulval biopsies to see if there were any abnormalities. There wasn't...just a LOT of inflammation, which she couldn't do anything about. Like geez hun, we knew the skin is inflamed. Look at it !!!! I also saw a Neurologist as Vulvodynia is supposed to be related to the "nerves" and again he said that there seemed nothing abnormal with my nerves, MRI came back clear etc. At this point, I was getting severely fed up. The consultant at Whiston had offered such promise and I felt I was running out of options. She wanted to refer me back to the pain hospital but I didn't feel they were going to do anything they hadn't done already. I enquired about surgery and whether the consultant knew of any surgeons within the North West of England area or anything about it. She said she didn't even know anything about the surgery and would not advise it...considering she is supposed to be a leading clinician in vulval diseases, you would have thought she would have heard about vestibulectomies!!

Throughout this condition, I have very much felt on my own and like I've had to fight tooth and nail to be seen by the people I needed to be seen by. It wasn't an easy process and I felt each appointment was a battle in convincing each doctor I had a "genuine pain" that, although not visible, was definitely REAL. If no surgeons were being offered to me, I would find one on my own! And that is where I found this forum! I trawled through hundreds of posts looking through any recommendations of vestibulectomy surgeons until I found Miss Gabrielle Downey of Birmingham BMI Egbaston hospital recommended as one of the leading ladies who offers the surgeries. Now, although I hadn't had access to much information about the procedure, I definitely knew after trying most of the other options for Vulvodynia, that surgery would be one of my last chances. So I made an appointment to see her privately at the hospital and down on the train by myself! She was very lovely. She examined me and said that my skin was very very raw and inflamed looking, so it was bound to be sore and she said my muscles were very "tight" from spasming due to all the pain. She offered me a steroid cream and some anti-thrush tablets (even though I didn't have thrush but I think it was to help with the itching) and said to use these to try and repair some of the reddened tissue and come back to see her in six weeks where we can try a numbing cream to see if I get any relief from it. After using the tablets and cream, I used the numbing gel and found I did have some numbness and relief. So I made another appointment to see her and she decided that despite my pain being a mix of generalised and provoked, I was a good candidate for the surgery to work! I believe the statistics were 90% of people were successful, 5% needed a second surgery and 5% it did not help their pain at all...I was willing to take those odds!!!

So on the 2nd August, I made my way down to Birmingham City hospital, as I was able to have the operation on the NHS and had the surgery! I had the spinal injection instead of a general anaesthetic as I have a fear of being knocked out...stupid I know, the fear is usually in the surgery!! I didn't feel a thing. The surgery consisted of a complete vestibulectomy which means from the 12 - 12 o'clock clock face was completely removed via the Fenton procedure and I also had Botox inserted into my muscles. I believe they remove the skin around the hymen up to 3cm. The procedure only lasted an hour or so and when I woke up, I was in no pain! By the time 6pm came around...four hours later..the anaesthetic had worn off and oh my could I feel the burn! That night I had to have quite a lot of morphine as I felt somebody had literally ripped my vagina out and replaced it with a saw that was cutting my insides. Gruesome, I know, sorry silent

By the next day, the pain has settled down a great amount and I was just on co-codomol and ibuprofen every 4 hours after that. I stayed in hospital two nights, usually it's just the one or a day case...as my pain was quite severe and Gabrielle advised it. I didn't really move from my bed. On the second day I attempted to shower and felt very faint, so I had to *perch* on the shower seat, in which I left quite a lot of blood there...woops. But not too much! I bled quite a lot in the first few days but now it's just bits and dregs. On the third day, I was able to go home! I was able to walk around by the second day so I just lay in the car on the way home as we had to travel back from Birmingham to Manchester. I definitely cannot sit properly at the moment!!

It's now day 5 and I think my pain is slowly decreasing each day in terms of post op pain. It's difficult to tell if the pain is post op pain or Vulvodynia pain...as my Vulvodynia pain wasn't very intense prior to surgery. I think only time will tell and it'll be a good few weeks before I will know if the surgery has worked so fingers crossed and please include me in your prayers!! In terms of recovery and what I'm doing, I have been using a lot of frozen peas to keep the area numb as it is quite uncomfortable. I'm leaning more into the itching phase which isn't pleasant!! My consultant advised using 'manuka honey' which is a medicinal honey which doesn't feel great to slather on but if it helps then I'm going to spoon it on by the truck load!! I've been keeping fairly constant with my painkillers, every 4-6 hours 30mg cocodomol and ibuprofen as you don't need to suffer when you're post op!! And been taking daily baths and showers to keep the area clean. Fresh pjs every day and drinking lots of water!! At the moment I'm having a lot of bed rest. For those who have struggled for a long time or are debating surgery, I would definitely recommend just taking the plunge and going for it. If your pain is intense, what do you honestly have to lose? Your consultant will also be there to offer any advice as to whether they think you should have the surgery.

I just wanted to share my journey with you all and if you have any tips of how to recover post surgery or what your experiences were like then let me know!! Also if anybody has any questions about the surgery or is considering surgery then feel free to send me a private message and I'll respond ASAP. If anybody is struggling with pain or just needs a lending ear I'm here to listen also as I've suffered with this condition for 6 years and I know how frustrating and depressing it can be...it has definitely worn down my mentality over time and I'm just praying this will be the end of it.

My main tips for coping with Vulvodynia pain when I was really bad is...

1) Warm baths with no bubble bath
2) Pouring clean water down your vagina after the toilet to help with the burning
3) Drinking 2L of water a day as this will make your urine less concentrated and flush out any toxins in your body
4) LIDOCAINE 4% !!!! Numbing gel - helps immensely
5) TENs machine - doesn't do much but offers a different sensation to the horrific burning pain
6) Codeine 30mgs, - good pain relief, I found they helped me the best
7) Obtaining a general sense of wellbeing/health i.e. good diet, taking vitamins...anything helps
8 ) Download the app 'Headspace' - good for the mind and meditation
9) NON-SCENTED TOILET ROLL - non-bleached. Find a good eco brand. Even if it says non-scented, it doesn't mean it isn't bleached!!
10) Loose fitting clothes (of course), plain white cotton knickers 2 sizes too big to prevent friction and air out the vagina
11) A bit of vaseline to act as a barrier between your vestibule and anything it might come into contact with
12) Avoid trigger foods/stuff you know your body doesn't agree with, mine was spicy food and FIZZY drinks!!
13) Of course don't even bother shaving down there or using any HAIR REMOVAL creams or perfumes


I hope you all manage to find some peace from your pain and this post helps in some way.

S x

sj17

Posts : 32
Join date : 2017-05-06

View user profile

Back to top Go down

Re: MY STORY & Vestibulectomy 2/8/17

Post  infinitelywondering on Mon Aug 07, 2017 10:58 pm

I'm so glad you're doing so well, I've had a bit of a disaster Sad

I've ripped one of my stitches and I'm bleeding heavily.... I don't know what to do and am pretty scared argh !

If anyone knows what I should do or can help I'd be so so grateful

Xx

infinitelywondering

Posts : 34
Join date : 2016-12-04

View user profile

Back to top Go down

Re: MY STORY & Vestibulectomy 2/8/17

Post  sj17 on Tue Aug 08, 2017 9:56 am

I would go to a&E if the bleeding is with quite bad or book an emergency appointment to see your GP. Let me know how it goes. Don't worry too much, a stitch can be re-stitched xx

sj17

Posts : 32
Join date : 2017-05-06

View user profile

Back to top Go down

Re: MY STORY & Vestibulectomy 2/8/17

Post  Mel T on Mon Oct 23, 2017 12:38 pm

Hi, your journey is quite extensive and I understand your frustration in finding someone who can diagnose this condition. . I was diagnosed with Vulvodynia 5 years ago. I too went to numerous doctors who said they could not find anything wrong and that the skin that looked abnormal to me was normal. I finally saw a specialist fortunately in my area that specializes in this disease. He started me on Gabapentin, Hydroxzibe, and nerve block injections. After a few weeks I felt some relief. We had to increase the dosage of Gabapentin u til I found the most relief. I had the mist discomfort in the vestibule area and around my clitoris. It itches terribly in that area and that feeling is awful. Along with the Vulvodynia I also have Lichen Sclerosis. Things got better for about 2 years but some flare ups but liveable. Then last year it was one flare up after another. That’s when my doctor recommended the Vestibulectomy. I had to go to a different doctor that performs this surgery( there are not many) and I 9/18 I had it done. I must say the first week wasn’t as bad as I thought it would be but he dud a pudendal nerve block in surgery which numbed me for quite a few days. The 2nd week was worse, very difficult to sit and more itchy and sore. I am now 5 weeks post surgery and doing fairly well. I pray this surgery worked and I can get back to wearing normal clothes again. You are in my prayers and I hope the surgery worked for you. At this point, I would think you know. God bless you and all others who know this pain.

Mel T

Posts : 1
Join date : 2017-10-10

View user profile

Back to top Go down

Re: MY STORY & Vestibulectomy 2/8/17

Post  Jgreen81 on Thu Nov 16, 2017 12:06 am

Hello I had a vestibulectomy 6 weeks ago and now I’m having pain and burning.. I thought it was yeast but it is not. I’m scared my vestiulitis has returned. Did u experience anything like this?

Sent from Topic'it App
avatar
Jgreen81

Posts : 4
Join date : 2017-11-15

View user profile

Back to top Go down

Re: MY STORY & Vestibulectomy 2/8/17

Post  Sponsored content


Sponsored content


Back to top Go down

Back to top

- Similar topics

 
Permissions in this forum:
You cannot reply to topics in this forum