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» Diagnosed Recently
Thu Feb 14, 2019 6:35 pm by davesjen

» New and need advice and help
Wed Feb 13, 2019 12:42 pm by feeling desperate

» New here would very much appreciate advice at the end of my rope
Wed Feb 13, 2019 12:33 pm by feeling desperate

» MonaLisa Touch
Sat Feb 09, 2019 3:46 pm by Julquint

» New member desperate need of other vulvadynia sufferers
Sat Feb 09, 2019 10:09 am by Tfc13

» The pain CAN get better - What's worked for me
Sat Feb 09, 2019 8:17 am by Ginger

» Remission and relapse and again and again
Thu Feb 07, 2019 1:10 pm by mary jane

» Long term pain after partial vestibulectomy?
Wed Feb 06, 2019 1:56 pm by mary jane

» Recovery story please read !!
Fri Feb 01, 2019 1:33 pm by mary jane

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 4

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: 6

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 3

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 1

New member desperate need of other vulvadynia sufferers

Fri Feb 08, 2019 6:55 pm by Tfc13

Hi there hope some1 reading this is going through the same shit as me!, I'm new to this so don't really know where to start , I'm Teresa , I've just been diagnosed with vestibular vulvadynia , after countless appointments with GPS being misdiagnosed, tested for god knows everything , eventually under my gynochologist ,who done all her necessary tests, I now have been given a diagnosis I'm in …

Comments: 5

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 7

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


Surgery Update - 5 Week Post-Surgery

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Surgery Update - 5 Week Post-Surgery

Post  jjr23 on Sun Sep 18, 2016 12:26 pm

Hey everyone,

It's been 5 weeks since my vestibulectomy. The outcome is not known yet because I am still recovering. My next appointment with my surgeon is in about 4 weeks, and I will let you guys know how that goes.

The purpose of this post is to share with you my personal experience with the recovery process so far, as there isn't much information about it on the internet! I know some of you are curious about the surgery recovery, so here is a detailed explanation of my experience so far.

The first two weeks were the hardest and most painful. I spent the majority of my waking hours lying down on the couch on my back. I couldn't put any pressure on my bum or around that area, so I definitely couldn't sit down or even lounge back. Walking was also hard. I took little steps, had my knees bent a little, and leaned forward/over a bit. The only walking I did was walking from the couch to the toilet, and from the toilet to the couch. (I slept on the couch in the living room for the first 2 weeks as I live at home with my parents and it was nice being surrounded by them for support and company).

The pain wasn't constant 24/7. The pain medication was very helpful. I used ice packs (frozen peas) a lot for the first few days which also relieved the pain. There were some moments where the pain was very painful.. but I kept telling myself 'short term pain for long term gain'. I had warm salt baths 2 or 3 times a day to keep the area clean. I used baby wipes after going to the toilet, very gently.

I saw my surgeon one week after surgery. This is a standard appointment where he checks that everything is healing as it should and that nothing is sticking together. I used a medical ring/donut cushion to sit on for the car travel. I sat in the front passenger seat and reclined the chair fully back so that pressure would be taken off my bum and more on my back.

The third week was slightly better than the first two weeks. I was still walking weirdly and definitely couldn't sit. The ring/donut cushion didn't give me much relief to sit on, because the areas that touch the cushion (the outside areas of my bum) sort of squish and put pressure on the sore bits. So I was still spending most of my time laying on my back on the couch or bed, or standing to eat and do uni homework. I was walking with little steps. I couldn't take full walking strides as this would be sore and pull on the stitches. A lot of the bruising and swelling had gone down. I was still have warm salt baths twice a day.

I was slowly improving. By the fourth week I could sit on the ring cushion for short periods. The harsh sharp shooting and cutting pain was now more of a sore dull pain. One side was more painful than the other. Bending down and arranging my body was still sore. Until now I could only sleep on my back with a pillow under my knees, but I was now starting to sleep on my side (but with a pillow inbetween my legs to take pressure off the sore area).

Although everyone says not to look in a mirror, I did this everyday. It was hard not to. I wanted to monitor my progress. I even took pictures. I was kind of obsessed. I didn't want anything to go wrong.

In the third/fourth week I noticed a lump on one side, near the opening of my vagina. It was sore to touch and it was that exact spot that was very painful when I tried sitting. I rang my surgeon and he said I could come in to see what it was. I suspected that it was a bartholin cyst, but he said that was very unlikely. He looked at it and prodded around. It was painful for him to touch. He didn't know what it was. He said lumps can be a normal part of the healing process and that it was way too soon for him to say it was something of concern, and that even if it was a cyst of some kind, he wouldn't touch it or treat it while I was still healing. He said to wait until my next appointment.

Although he didn't seem worried about it, it was so hard for me not to stress! I have anxiety and this whole recovery process has been so stressful - not knowing what to expect, now knowing what is normal, now knowing when I should and shouldn't feel pain, etc etc. I've been through so much, and not knowing things is hard for me to deal with. I try to stay positive but my brain has some bad habits.

I've had some really dark moments during my recovery where I have just crawled up in a ball and cried. When will this pain go away?!

I have felt more positive in the past few days (my fifth week post-op). I can now walk almost completely normally without pain (there is more of a discomfort, dry sort of feeling). I can't walk very far yet but I'm definitely making progress. I returned to uni and brought my ring cushion to sit on in class. Apart from that, I haven't left the house much at all. I've only left the house 3 times in the past 5 weeks (twice to see my surgeon and once to my uni class). This has been my decision though. I don't feel ready to return to normal things like catching up with friends. I don't feel comfortable bringing my ring cushion to a cafe/restaurant for example (for three reasons: its sort of embarrassing, I haven't told many friends that I've had surgery, and it isn't even that comfy to sit on). So while I'm at home I'm still spending a lot of my time laying down or standing. It's just more comfy. The ring cushion is kind of annoying and hurts my back.

I'm still having warm baths, just once a day. Baths are not necessary for the stage that I am at but I feel a lot cleaner in the sense that a bath makes sure that water really gets around and in the area, rather than a shower where the water runs down and doesn't really reach the stitches or area where the stitches were.

I knew this recovery process wasn't going to be quick or easy. I knew there were going to be moments where I was frustrated, impatient, upset and stressed. I still feel those emotions at times. The lump (and pain associated with it) are still there. The lump has gone down in size, thank god, and isn't as painful as it was a couple of weeks ago, but it is still there. I'm hoping that it will continue to decrease in size and pain and eventually resolve itself. Other than the lump pain, there isn't much other pain - just general discomfort that is also slowly fading. I still can't sit without discomfort/pain. It's slowly getting better... very slowly.

Obviously I haven't had the q-tip test done in any of the appointments I've had since the surgery, as it was too soon. But I'm sure my surgeon will do this for my next appointment which is in mid-October.

I know that was a very long post but I wanted to share it because it's hard to find something this detailed and of personal experience on the internet. I hope this has been a helpful source of information for you all xx

jjr23

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Re: Surgery Update - 5 Week Post-Surgery

Post  emalita on Sun Sep 18, 2016 10:01 pm

That's great that you're seeing improvement! I hope it will only get better and better for you Very Happy

emalita

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Re: Surgery Update - 5 Week Post-Surgery

Post  qwerty1 on Tue Oct 18, 2016 11:57 am

Do you have any update? No surgery recovery stories on here really:(

qwerty1

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Re: Surgery Update - 5 Week Post-Surgery

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