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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 …

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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: 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 …

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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


First Physio - at last answers

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First Physio - at last answers

Post  Kathy100 on Mon Mar 18, 2013 4:08 pm

Had my first physio (PT) session last week and at last after months of hell, feel as if I’m starting to get some answers. This forum has been one of the things that has helped keep me going. The physio said that my stomach was permanently clenched ( I had no idea feels so normal to me!) probably going back to when I had IBS at 21 – I’m 47 now. My pelvis is permanently clenched too and in the wrong position. She found a weakness in my lower back, worse on the left hand side, loads of trigger points on my back, backside and legs! She said that there will definitely be some internal ones too & she’s going to tackle those once she’s got my back sorted out. She massaged my back and did some trigger point releasing & immediately the pain in my left leg & back has eased. She also corrected my posture & has given me some exercises to do as well as practising releasing pelvis & stomach which feels so strange. Very early days but at least it’s something to work with….

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Re: First Physio - at last answers

Post  cba321 on Mon Mar 18, 2013 7:42 pm

Hi there,

I have exactly the same thing as you. Took me a long time to get my answers too. My abdomen in tight also, probably due to the abdomen fascia (skin that surrounds all muscles) is shared with the pelvis, so they are kind of in one sack. I've done physio, chiro, light touch myofascial release, and exercise physiology. Are you hyper flexible in your lower limbs out of interest?

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Re: First Physio - at last answers

Post  Kathy100 on Tue Mar 19, 2013 2:40 pm

Hi

Thanks for your reply. I've always been told I'm very flexible at various medicals, by the physio etc but no-one has ever said hyper flexible. My hips, knees & feet also click alot!
How are you getting on? What has helped you the most?

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Re: First Physio - at last answers

Post  cba321 on Thu Mar 21, 2013 4:58 am

Hi

You can have a look at The Beighton score for hyperflexibility

http://www.nhs.uk/Conditions/Joint-hypermobility/Pages/Diagnosis.aspx

All of them have helped in there own way I guess, but I think the light touch myofascial massage has been the best as it does not cause any pain yet releases the muscles quite a bit. Still early days!

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Re: First Physio - at last answers

Post  Sarah001 on Thu Mar 21, 2013 2:12 pm

If you have Hypermobility issues you get diagnosed at Rheumatology and they look at your elbows, knees, spine, wrists and fingers and they expect to find elbows and knees that hyperextend so bend backwards, you likely would be able to place your palms flat on the floor without bending your knees and some people have fingers that easily bend backwards or can touch the thumb to the forearm. They also take into consideration any family history of it as it's hereditory and how long you've been in pain plus how many joints give you pain to establish if you have Hypermobility Syndrome as opposed to just being hypermobile. The only bit I can't do is my fingers don't easily bend backwards but there are lots of other bits on me that are too loose but aren't part of the test so it depends on the Rheumy as to whether they examine those.
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Re: First Physio - at last answers

Post  Kathy100 on Sat Mar 23, 2013 5:15 pm

Thanks for the link & Sarah thanks of the info. I used to be able to place hands flat on floor - I've done a lot of yoga in my time & I can bend my little fingers back 90 degrees. I can't do the others thou...

Had a flare up in the pain in my lower back / backside since Tuesday - had to take time off as too painful to sit down even with the donut cushion I use in the office...So fed-up with it all. I don't know is this because of the physio wearing off or as a result of it? or neither? I've got another appointment Wednesday so I'm hoping she'll be able to ease it....

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Re: First Physio - at last answers

Post  Sarah001 on Sat Mar 23, 2013 9:52 pm

Sounds like an SI joint issue to me. Have you got a trigger point ball to use in between sessions? I'm not sure where you're from but if it's the UK Chelston Direct do an excellent one for £10 which won't squash or break in two like a tennis ball does. I've also got some firm spikey ones that are great at getting the trigger points in the glute medius to give a bit.
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Re: First Physio - at last answers

Post  dmilly01 on Tue Mar 26, 2013 4:39 pm

Hi Kathy100
I am seeing a pain specialist on the 4th April, as i have tried amitriptyline and gabapentin and neither of them worked. My gynocologist told me there was nothing else he could do for me, so has refered me to this pain specialist instead. I am 49 and i also have ibs, endometriosis, now vulvodynia, Which i was diagnosed with early last year. I also had some blood tests done last week to check my autoimmune system, as i had follicles removed from my cervix and an erosion.
So could be something going on there? Feeling bit happier about seeing the Specialst now that i know it has helped. I read on another site that it can help up to 60% of women with vulvodynia, so heres hoping! I have also bought some anal vibrators from Ann Summers as smaller than a normal vibrator and thought might help with stretching the muscles and relaxing them in my vulva. Have you tried anything like that? Or has anyone else on here? I was going to buy those dilators that you can order, that come in different sizes. But bit expensive if dont work! i will keep you posted on how i get on with the Specialist. Hope you keep finding relief. It would be fab to have pain free sex again with my husband. He is soo patient bless hm. Take carexx

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Re: First Physio - at last answers

Post  Kathy100 on Wed Mar 27, 2013 12:43 pm

Hi Sarah, Thanks for your reply. I do have a spiky trigger point ball about the same size as a tennis ball that I got from Amazon but must admit I'm not using it every day - I'll have to get more disciplined! It certainly digs into the pain. I've got my second physio appointment this afternoon so I'll ask her about SI joints.

Hi dmilly01 - thanks for your support. I have IBS also. My doctor first tried my on amitriptyline when she was at a loss at what to try next! It did help with the burning pain but I couldn't cope with the side effects. I then saw a pain specialist & he put me on notriptyline (which is the same class of drugs as ami with fewer side effects) - this has helped a lot with the burning pain. I tried lidocaine too which worked for a couple of days but then made the burning worse than ever. I can't seem to tolerate any creams down there now. He has also referred me to the physio which I'm hoping is going to sort out my tense muscles. I haven't tried dilators yet but I've read several other posts on this site where people have used them and it's helped. Good luck with your pain specialist and let us know how you get on.

Take care xx Kathy

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Re: First Physio - at last answers

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