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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

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: 2

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 …

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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


Reached a plateau...

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Reached a plateau...

Post  WaahwaahUK on Thu Jan 14, 2016 1:13 pm

Thought it was time to post an update on this ever quiet forum! Wink

I've been seeing an osteopath for several months now and I've definitely seen a slow and gradual decrease in my pain, with the odd flare up. I've got to generally being about a 2/10 on a good day, and 3 or 4/10 on a bad day. In the summer last year I was 7 fairly constant. 7 for me meant constant pain, real difficulty walking all the time, very little rest due to the pain, and generally a huge impact on my daily functioning. 2 or 3 now means I can walk with pain, but it's bearable. And I'm able to function with the pain. I don't ever want to see an 8 or above as that for me personally would be not being able to get up. I have quite a high pain threshold. So, I'm seeing improvements with physio more than anything else I've tried. I had to stop medication because of really awful side effects and no difference in the pain. I'm now scared as my osteopath said to me this week, I've reached a plateau. Which I have. I know. And I want to get beyond that and improve some more.... So I have more exercises now, and he's hoping to address it, but yeah I'm scared. What if this is as good as it gets?

Just felt like writing it down somewhere. If I can help anyone with advice on my particular journey so far, feel free to ask. If you look at my previous posts you can see how it started for me.

I do feel, pelvic floor issues are present for me and the physio is helping. I never realised a burning raw feeling down there could be nerve, muscle related!

Anyway, good luck to anyone reading this suffering.

WaahwaahUK

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Re: Reached a plateau...

Post  PainBlogger on Thu Jan 14, 2016 11:30 pm

I feel similarly: my unprovoked pain is a lot better than it was even a few months ago, but my pelvic floor muscles are still ridiculously tight. I've not seen the physio for a while, just been plodding on with exercises whilst the duloxetine kicked in. I'm going back in a few days though and hoping I can try something new. I think my nerves have calmed down a lot, but trying to do dilator exercises is triggering my pain and giving me cystitis-like burning.

I hope your additional exercises help. And writing stuff down is often helpful. Smile I'll update when I've had my next appointment.

PainBlogger

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Re: Reached a plateau...

Post  WaahwaahUK on Sat Jan 16, 2016 5:45 pm

Thanks for keeping in touch! Yes have some PNF stretching to do now. My osteopath said my hamstrings are really tight also which makes sense as I feel the vulva and labia pain on my left side when I stretch them. All seems linked. Had a bit of a flare today, 3 days after osteopath appointment which seems to happen for me. Hoping it settles tomorrow. I know I've come a long way pain wise, it's just hard to imagine if it will ever be 'normal' again in terms of not having this type of pain. I've always had back and pelvic issues but the additional gynae related pain is so depressing... However, I tell myself if I can see improvement then that surely means one day I could be out of this cycle! Lovely to hear from you again. Keep me posted!

WaahwaahUK

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Re: Reached a plateau...

Post  PainBlogger on Mon Jan 18, 2016 12:33 pm

Hi Waahwaah,

Well, the physio assessed my pelvic floor muscles (which was unpleasant but not as painful as I feared it was going to be considering the pain I've been getting with home exercises). It's mainly the superficial PFMs that are overly tight and causing me the problems. She checked to see if I was getting referred pain when she put pressure on various areas and it was predominantly localised in that I was feeling the pain where she was touching and not out in my hip or up in my bladder etc.

Despite the discomfort of the assessment, I did feel better after it. She suggested I do my exercises in the mornings instead of later in the day as the PFMs should be more relaxed in the morning. I've tried that and it has been easier since the appointment, so I've just got to persist at trying to get those superficial PFMs stretched out and less tense. It's a real 'two steps forward, one step back' process and such slow going, but what can I do but persist. I'm not giving up. Smile When I think how I was 18 months ago I am so much better, I just still have things that I can't do and that's incredibly frustrating. But I do believe (now!) that I will be able to do them again. It just may take a while...

I'm still doing external stretches as well for my adductors and buttocks (piriformis) and also this first exercise (as demonstrated in the video) on this page: http://www.pelvicpainrehab.com/pelvic-pain/2011/pelvic-pain-and-exercise-what-exercises-can-help-treat-my-pain/

The physio also suggested I try a breathing exercise call 4, 7, 8 breathing, so you may want to do a search for that and give it a go. It's a simple technique for reducing tension. In short: Empty lungs > breathe in for a count of 4 (not 4 seconds necessarily) > hold for count of 7 > breathe out for count of 8. I find on the breathing out I feel a bit desperate to breathe in again towards the end, but that's normal apparently. So, I'm going to practise this when I'm emptying my bladder and a couple of other times a day and see if it helps at all. The good thing with breathing exercises is they are side-effect free (unless maybe one has asthma or another respiratory issue).

It's definitely wise to keep on telling yourself that one day you can be free of the pain cycle. I thought very negatively for the first 6 months I had this problem and negative thinking does no good. I feel a lot better in myself since a) I changed my way of thinking (which wasn't easy and was gradual) and b) since I've worked out which treatments help me and which are best left alone.

I hope your latest flare is going now Smile

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Re: Reached a plateau...

Post  WaahwaahUK on Mon Jan 18, 2016 6:20 pm

Thanks so much for that info, I'm going to look into those things you mentioned! I know what you mean about it being a slow process. Tell me about it! I do feel its worthwhile though, as like you, when I think back to where I was say 6 months ago I know I've improved. Keep me posted! I've really struggled last fee days with new exercises. I think I overdid them. It was because hubby was helping and said he didn't think I was stretching that much but I said, I have to start off small and work my way up. Should have listened to my own advice really as sooooo sore today! So back to taking it gentle and listening to my body one step at a time.

WaahwaahUK

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Re: Reached a plateau...

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