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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: 3

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

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 1

Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

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: 6

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: 3

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 10

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0


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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Join date : 2016-08-23
Location : Australia

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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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