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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 …

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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 …

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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.

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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 …

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I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

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Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

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Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35


misaligned pelvis

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misaligned pelvis

Post  Delilah1 on Wed Sep 11, 2013 10:07 pm

Hello ladies. I visited a chiropractor. Learned that I have a misaligned pelvis, slight scoliosis and one leg longer than the other.
I have had several adjustments. I haven't noticed it helping with the vulvodynia pain. I think it has caused more discomfort. Is it normal to have an increase in pain after adjustments or physio?
I'm also wondering if someone who sees a women's physiotherapist could share with me exactly how they go about treating a misaligned pelvis? Thank you

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Re: misaligned pelvis

Post  Kathy100 on Thu Sep 12, 2013 1:51 pm

I've recently started seeing a new physio for myofascial release. She found that my pelvis was misaligned (the right hip was over half an inch higher than my left), there was no movement in the mid section of my back and my shoulders were permanently up!.
Last week she re-aligned my pelvis by loosening all the surrounding muscles first, and then gently pushing down on my right sit bone. It didn't hurt at all and afterwards my weight distribution when I stood up felt completely different and so much better. I didn't have any flare up afterwards but everyone is different. This week she did more work on my stomach, pelvic and leg muscles. The day & night afterwards I had pain in my stomach which has now worn off & a minor flare up of the v pain which has now worn off. I understand that it's normal to have a temporary flare up after physio as long as overall you are gradually making progress. I have never been to a chiropractor but they should warn you beforehand about flare ups.

I hope this helps.

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Re: misaligned pelvis

Post  Sarah001 on Thu Sep 12, 2013 9:12 pm

The misaligned pelvis, the bain of my life!! Most cases present with the right leg longer than the left because the right side ilium is in anterior rotation (forward and down at the front) and the left in a compensatory posterior rotation (backwards and down at the back) this throws the hip position out so the longer leg makes the same side of the pelvis higher in standing. A true leg length Discrepancy is tested by having the patient sit and if the pelvis is level once the legs are taken out of the equation it's a true LLD but most cases are functional so caused by the misalignment. There are upslips, downslips and inflares and outflares but I won't bore you with those! The unlevel pelvis creates an unlevel base for the spine so it has to curve into either an S or C shape to accommodate that and that makes one shoulder higher than the other. Naturally as the bones are all out of whack the muscles have to lengthen and shorten in accordance with this and muscle imbalances are created which in turn cause the majority of the pain. Usually the longer leg will have a flatter arch and be prone to collapsing inwards to enable the leg to clear the ground and the muscles most often a problem are tight hamstrings, glutes and external oblique on the left along with weak hip flexors and tight hip flexors and overstretched hamstrings, glutes and external oblique on the right.

As the pelvic bones have moved the pelvic floor has too because it attaches to those bones so one side will be tighter than the other (usually the left) and the external hip rotators being very closely related to the PF will also change with one side tighter than the other. This creates a rotation of the body and causes yet more problems. Some are lucky enough that the muscles aren't horribly affected and a correction holds, others like myself can't hold a correction for more than a few days. The soft tissue is usually key to pain relief though and chiros aren't as good as physios when it comes to soft tissue. They also can make matters worse if they treat the loose side (whichever is in anterior rotation is the weaker side) with aggressive techniques as opposed to the gentler methods employed by physios. If you aren't holding the correction you won't get pain relief until you do and most likely the pelvic floor will have to take a back seat while the misalignment is sorted out. Even if you do hold a correction the soft tissue also needs help as it will be full of trigger points and some areas strained and others shortened so the misalignment needs dealing with first but rest assured all the problems you've mentioned are typical of a misaligned pelvis and not separate problems. I would try a physio instead to see if a different method might work better and for help with the soft tissue.

Sorry to bore everyone as per!! Rolling Eyes 
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Re: misaligned pelvis

Post  Delilah1 on Thu Sep 12, 2013 10:15 pm

Thank you Kathy and Sarah for your replies!

Sarah, you did not bore me with your reply! It was all very informative. When I was a child my mother took me to the doctor because of a "funny feeling" I kept having in my leg. At the time, the doctor didn't know what caused it. I know now that it was restless leg. However, the doctor did diagnose the slight scoliosis in my spine at that time. Do you think having the scoliosis all my life could be what caused the misaligned pelvis? You really know your stuff! Have you considered becoming a physical therapist? Very Happy  The chiropractor did tell me that my left side was in posterior rotation. One clue to this was because when I sit on a toilet my left labia bulges out quite a bit more than the right. I get left hip and groin pain when I try to do my power walking.
I asked my V specialist for a physical therpy referral. He thought he needed to get the burning pain under control first before I started too much manipulation. He wanted me to try amitriptyline first. Do you know if this is a common approach? I would like to start physio as soon as possible. That's why I went to a chiropractor. In the US you don't need a doctor's referral for them like you do Physical therapy. Thank you for listening. It really helps.

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Re: misaligned pelvis

Post  Kathy100 on Fri Sep 13, 2013 9:19 am

My doctor did put me on amitriptyline first and it did get the burning pain under control within 3 days. A few weeks later I swopped to notriptyline because I couldn't cope with all the side effects of ami.  I'm still taking nortriptyline a low dose every other day but I'm hoping with the new physio I'll be able to come off it altogether.  I think the common approach with Drs in the UK is drugs first rather than try and get to the root of problem. My doctor wouldn't refer me as she thought it was "problem solved" when the ami kicked in.  The first physio I saw was recommended by a pain consultant I saw privately.  She helped temporarily but somehow missed the mis-aligned pelvis!! So my pain which had spread to back, buttocks and legs by then always came back.

I think taking the ami can give you some breathing space from the pain and I was told by the consultant also it gives the nerves a rest.  Bear in mind you can't immediately stop taking it you have reduce the dose gradually.

Sarah thanks for all the info on mis-aligned pelvis - you know so much - mine has held for a week so far - each time I stand up I'm checking that the weight distribution is the same....fingers crossed.

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Re: misaligned pelvis

Post  Kathy100 on Fri Sep 13, 2013 9:36 am

Delilah - forgot to say, if you can start physio sooner rather than later - you may save yourself several months of pain. I left it for a for a while because the nortriptyline was working & my symptoms got worse.

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Re: misaligned pelvis

Post  Sarah001 on Fri Sep 13, 2013 11:54 am

I agree with kathy the sooner the better because a misaligned pelvis can wreak havoc on the body. With the power walking I don't know how well you stabilise your pelvis with your glute medius but I'd guess not very well, try walking towards a mirror the way you power walk and if your pelvis is tilting laterally you need to sort that out to stabilise whilst walking.

And Kathy I had 2 Osteopaths miss my misaligned pelvis before someone spotted it, mine was really noticeable too so how they managed to miss it is a mystery!!
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