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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 …

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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 …

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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 …

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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 …

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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


Trigger point work at home

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Trigger point work at home

Post  lolainslacks on Wed Oct 26, 2011 8:58 pm

I have my very first physio appointment today, and I was terrified, because I new there would be an examination and they have always been excruciating for me.

However, it was so wonderful. My therapist is the nicest woman I have ever spoken to about this, so so lovely and understanding. And she asked if I was ready for the exam and said that if I wasn't ready yet we could wait until a later appointment, but even though I knew it would hurt I was eager to get started.

The insertion did hurt to begin with, but she went so slowly and was always asking if I wanted her to stop. The exercises were fine. She stretched each side. The first side didn't hurt at all, which amazed me. After her finger had been in me for a few minutes, and after she had begun stretching me, everything stopped hurting. The other side hurt quite a bit though, and as expected there was a lot of pain when she was pulling out.

Anyway, she told me that I shouuld mimic what she did, by stretching the muscles gently at each side, 2-3 times a day. She said to use my thumb and to stand over the toilet with one leg on the seat. I was just wondering if this is how others do it? And if not, what are some other methods? What do you find most comfortable?

Also, I was wondering what the immediate effects of this kind of exercise are? Because once I left, for a few hours afterwards my pelvic floor muscles felt so open and relaxed. I am not aware of tensing when I'm not doing anything, like just walking or sitting around, but I was aware of a really relaxed feeling today, like I had more control than usual, which suggests to me that perhaps I tense subconsciously all the time? And maybe the work we did loosened them up for a while? But I don't know if maybe that's just in my head as a sort of 'placebo effect'.

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Re: Trigger point work at home

Post  Sarah001 on Thu Oct 27, 2011 11:31 am

Hi there, I use the opposite thumbs in the bath and stretch them that way, you have to breathe into the pelvic floor sometimes to get any release though. You could also invest in a set of dilators and use the smaller ones as a finger extension so just use those to stretch with. You probably are clenching all the time without realising it, most of us with V are! I do it and it drastically increases my pain whereas if I can keep them relaxed for a few days in a row it drastically decreases my pain. You could prop yourself up on lots of pillows and do it laid on the bed too, I avoid the standing positions because I use alot of muscle tension when standing so get on better with laying down. Whatever works for you really. It's funny you said removing her finger hurt you, I used to find the sensor wasn't too bad going in but horrendous to get out because my muscles had clamped round it so it made me really sore removing it. Don't forget to breathe into the abdomen to help the muscles relax. Let us know how you get on.
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Re: Trigger point work at home

Post  Rose86 on Thu Oct 27, 2011 7:11 pm

I've started doing some stretching using my fingers and the smallest dilator. I do it laying on my back with my legs on some cushions. I've noticed that there's a lot more pain on the left than the right, both internally and in the vestibule. I've not really found any trigger points, but definitely tight muscles. I overdid it last week with the stretching and dilators and had to have a few days off to recover as things were pretty sore. Maybe I should have pushed through the pain though because when I tried again the muscles were very tight. Is it better to rest it when it hurts more or push through the pain? Just wondering what your physios have said about that?

I was actually wondering if anyone can recommend a good physio (in the UK)? I'm in the south, but i'll travel to find one at least for a decent assessment of my pelvic floor muscles.

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Re: Trigger point work at home

Post  lolainslacks on Thu Oct 27, 2011 11:37 pm

Thanks for the tips guys. I remember everything she told me about the muscles and trigger points, but when I try to do it myself I don't really know where to work. I can't feel just one specific 'trigger point' that hurts so I can't tell if my finger is in the right place. Is it okay to just push my entire finger against each side to stretch it as a whole, or does it really have to be touching a specific place?

I'd be interested to know the answer to your question too, Rose86, because when I use my dilators sometimes I push myself too far and I have pain for a day or two. And because of the pain I avoid any penetration, which sets me back because when I try again I'm tightened up. I always wonder if maybe I should just keep working even though it hurts, or wait until it's better.

I recall reading something online about a women with vulvodynia who made sure she massaged her most painful area daily, even when it hurt most, and she found that doing this really helped, because even on days when you have pain, the area still needs attention. But that wasn't medical advice, so I don't know how well it applies to other women.

I have another appointment next week, so if no-one else can answer I'll ask my physiotherapist about it.

I can't recommend a therapist I'm afraid, because I live in Scotland which is probably no use for you.

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Re: Trigger point work at home

Post  Sarah001 on Fri Oct 28, 2011 8:20 pm

Wherever you find tight muscles there's trigger points in there somewhere, they don't necessarily have to refer pain though just be the sorest areas to touch. I can feel lumps where mine are and I have some humdingers that refer into the labia majora, the vestibule and hips and down the side of my sacrum but others are sore with no referral. The ones that refer are active and the ones that don't latent but both need to be deactivated to allow the muscles to relax.

I also sometimes overdo it and make myself really sore, if you make a muscle really hurt that way it spasms and clamps up to protect the painful area which is why it makes them tighter if you overdo it. Go gently and see how much you can stand withot doing this, pushing through the pain and making yourself even more sore isn't the way forward. On the other hand if you find an active trigger point you may have to hold pressure on it several times before it stops referring so that's ok.

Just stretching the muscles in general will help short term but the trigger points also need to be gone to allow the muscle to reach it's normal length so it is a good thing to do but you also need to press different areas of the muscles until you find those knots. It's the same as any muscle really, aggravating them won't help but carefully considered massage will. I totally get how easy it is to overdo it and if I do I use arnica ointment to calm things down, if I've really flared things up I will sometimes use hydrocortisone ointment for 1 night only to calm down the extra redness and inflammation. And don't forget the breathing into the abdomen, it helps things relax and minimises clenching.
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Re: Trigger point work at home

Post  Rose86 on Sat Oct 29, 2011 12:40 pm

Thanks for the advice Sarah. Though rather than soreness, this time i've developed unbearable itching! Kept waking me up all night and I was dreaming about it! I don't suffer from itching as a usual symptom, so i'm wondering if it's just an effect of things being more moist than usual from the lubricant I use with the dilators. Or I suppose it could be the start of a yeast infection. Really hope not though! Either way I can't use my dilators with this much itching! Ahhh! ITCHING!

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Re: Trigger point work at home

Post  Sarah001 on Tue Nov 01, 2011 3:10 pm

Could be the lubricant, could be extra moisture as you say and could be you've overdone it and damaged tissue a bit which is healing. Could also be yeast of course! Hopefully your itching has gone by now.
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Re: Trigger point work at home

Post  Rose86 on Tue Nov 01, 2011 6:24 pm

Yep, it was yeast! Do you happen to know if there are lubricants available that have a PH balance similar the vagina? I currently use Sylk, and it smells rather sweet, so i'm wondering if it has something sugary in it that the yeast likes? I have been using it for weeks though and this is the first infection, so it could just be one of those things. So now things are a bit sore and in recovery before I start the PT again. Isn't it fun being a woman! Men don't know how easy they have it!

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Re: Trigger point work at home

Post  Sarah001 on Tue Nov 01, 2011 7:43 pm

I certainly do, Biofem gel is ph perfect for the vagina, it's cheap and readily available online, I'm not sure which country you're in but here in the UK it's very easy to obtain from any chemist too.
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Re: Trigger point work at home

Post  Rose86 on Thu Nov 03, 2011 9:38 pm

Thanks Sarah, yeah I am in the UK. I've ordered some of that, and also some lubricant that says it has no glycerin in it, so hopefully that will be better. It's annoying though. To improve we are supposed to do dilator work everyday, but the added moisture from doing it can cause yeast infections! So now it means I haven't done any for a week and will have lost any gains i'd been making! Oh and last week my GP, who had been really good up to this point, was a bit grumpy when I saw her and said that i'll probably have this my whole life and need to start trying to accept it, rather than searching for a cure. Oh and that the pain is probably psychological. I did get a bit upset afterwards, but i'm glad i've read about so many other women having this experience and then going on to find treatments that help them. I wanted to get my hormone levels tested because of Goldstein's work, just even to rule it out as a cause, and although she agreed to test them, she was moaning about budgets and how much blood tests cost etc, and how it was coming out of her patients' budget! WTF! Bloody NHS! Ok, rant over. We've all been through this I know! Onwards and upwards.

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Re: Trigger point work at home

Post  lolainslacks on Thu Nov 03, 2011 11:57 pm

Don't let GPs like that get you down. It's surprising how many specialists (FEMALE specialists no less) can be be so insensitive and clueless about this. I've seen countless GPs who have told me the pain isn't real it's just psychological. Even back when the pain was coming from my abnormally thick hymen that had to be surgically removed. Not one of them spotted that. And I once saw a psychosexual therapist who told me that I should go out and have sex with someone I don't care about, simply to get sex out of the way. After only speaking to her for five minutes, she concluded that I am repressed and childish, and that having sex with someone will allow me to finally 'grow up'. I mean, there are so many WTFs about that advice it's unreal. And I cried for an hour after she said that. It can make you feel like no-one wants to help andd you're dealing with this alone.

Anyway, good luck with the new lubricants. Dilator work every single day can be tough.

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Re: Trigger point work at home

Post  Sarah001 on Fri Nov 04, 2011 12:51 pm

Funny you two are having doctor problems too, my dr has been really good about this and recently said she would try and refer me to a WH physio on the NHS. The problem where I live is most referrals end up at our small hospital where there isn't the right kind of people and not at the large hospital 30 miles away where I need to be. Anyway, I received a letter yesterday to go to the small local hospital and the name of the physio plus a load of info about stress incontinence which confused me. I rang and spoke to the receptionist hoping to get a chat with the physio about it all and the receptionist read me the letter my GP had sent which said I had a lax pelvic floor and stress incontinence! The complete opposite of what I really have for heavens sake!! I said I'd never mentioned anything about a lax pelvic floor and I'm really upset my dr hasn't listened to a word I've said because she seemed good. I'm going to the appointment anyway even though they don't have biofeedback machines at that hospital because apparently if this physio can't help me she can send me on to the other hospital who do have all the equipment. My appointment is next Thursday so I'll let you know how it goes. I ask you though, stress incontinenece for fuck's sake??!!

On the plus side this physio is apparently very good with SI problems which I'm struggling with as well so she might be able to help me a bit. I daren't raise my hopes though, I've had 7 years of physio for my SI problems and come out no better and with V on top of everything else, oh and minus about 12 grand too of course. Useless physios.
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