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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 …

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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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Upper chest breathing

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Upper chest breathing

Post  Sarah001 on Sun Sep 01, 2013 1:38 pm

Here's a question just for the ladies who know their V is caused by PFD/pelvic instability, do you breathe into your upper chest? As in when you breathe do you need to lift your shoulders up to take a deep breath even when at rest? It's a geeky wondering on my part and I'd appreciate any of you pelvic floor/pelvic instability girls answers on this one!
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Re: Upper chest breathing

Post  cba321 on Mon Sep 02, 2013 6:42 am

Yes I do this, due to tight abdominal muscles (to help stabilise the pelvis) pulling at the ribs and affecting the diaphragm

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Re: Upper chest breathing

Post  Sarah001 on Mon Sep 02, 2013 9:28 pm

Thanks for the answer I know this particular subject probably isn't of interest to the majority on here but I'm a bit nerdy about it all! Rolling Eyes  Mine's because I grip with the upper abs and restrict the ribcage movement so the diaphragm doesn't move as it should and obviously that means the pelvic floor doesn't either and as you said it's a faulty stabilisation method. As well as clenching with my pelvic floor I also grip all day long with my glutes which drives me mad because I can't seem to stop doing it!! As my physio said it's biologically impossible to clench the pelvic floor if you breathe properly so I'm doing alot of lateral breathing practise and also had some trigger point injections done tonight around the back of my ribs to try and help them loosen up, all that inactivity has them rigid and too painful to breathe into. How are you doing with it all?
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Re: Upper chest breathing

Post  Sebby (Admin) on Wed Sep 04, 2013 8:07 am

I breath into my chest and I'm practising diaphragmatic breathing when doing yoga and pfm's releasing. Only just starting the whole releasing thing so am glad there is a nerd on here! Smile
Silly question but are we supposed to be breathing into our diaphragm all the time?
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Re: Upper chest breathing

Post  Sarah001 on Wed Sep 04, 2013 2:16 pm

Glad you asked Sebby, the breath going into the sides and back of the ribcage (lateral breathing) is for everyday use and aiming the breath into the abdominals to relax the pelvic floor (diaphragmatic breathing) should only be used when stationary preferably laying down. I do bits of both but the lateral breathing is the one I have to practise the most so I breathe better all the time.
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Re: Upper chest breathing

Post  Kathy100 on Fri Oct 25, 2013 3:39 pm

I do - didn't realise I was until I saw your post. Getting better since my physio released some muscles around in my abs and just below my ribcage, feel as if I've more room to breathe. I'm practising the lateral breathing as much as I can. I grip all the time too with my legs and hips so I'm doing work now to try & relax them. So many different things!


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Re: Upper chest breathing

Post  Sarah001 on Sat Oct 26, 2013 1:56 pm

Kathy I am a fiend for gripping with my glutes and hip flexors, I find it very hard not to do it and when I do it all day at work my pain is vastly increased. The breathing sometimes goes well for me and other times like this week I cock up and have to have my physio release the muscles on the back of the ribcage just to get a proper breath in. Yesterday I was sat in the waiting room at physio and realised I was the only person in there who was shoulder breathing, everyone else was using the ribs properly and no sign of breathing could actually be seen. It's frustrating to say the least and I've even tried trigger point injections to keep my ribs moving but they clamped up again within days. I do find however if I breathe properly while I do my core exercises I can't clench my pelvic floor so much so it's something I'm trying really hard to correct.
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Re: Upper chest breathing

Post  Kathy100 on Mon Oct 28, 2013 12:28 pm

Sarah - like you I really grip all the time with my glutes & hip flexors by the end of the day my thighs are like granite! Buns of steel too but not it a good way! My physio released some muscles just below my rib cage & suddenly I could breathe much deeper - although it feels as if they've reverted a bit now. Sorry to hear your trigger point injections only provided temporary relief - it is frustrating. I haven't noticed other peoples breathing yet but I can spot a mis-aligned pelvis.... Like you I do find that when I get the breathing right - I can release my pelvic floor; letting the thighs & hips go though is very hard - but I'm determined to get there even if it is a millimetre at a time :0)

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Re: Upper chest breathing

Post  Sarah001 on Mon Oct 28, 2013 5:42 pm

I love the feeling when my physio has released my ribs and I can actually breathe again!! Rolling Eyes  I've done quite well today with my breathing but had to let go with my gripping about a zillion times! I also find if I stop thinking about it I almost lean forwards so the weight is mostly on the front of my feet instead of balanced through each foot like a tripod, I have to rock backwards and then slowly inch forwards until it's all where it should be. I've been having prolotherapy on my right SI joint for a few months now and my physio has remarked it's now like a "normal" dysfunctional joint as opposed to the severe dysfunction caused by my EDS so it's slowly stiffening the joint up which is what I'm after, no pain relief however until the soft tissue has been sorted but at least it's a step in the right direction! I'm currently sat with a trigger point ball in my upper adductors in an effort to get rid of some of the knots from them, breathing properly too of course!! Wink 
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Re: Upper chest breathing

Post  Kathy100 on Tue Oct 29, 2013 3:36 pm

Yep me too - I have to consciously think all the time to let go & breathe. When I do it helps. I've been doing the rocking thing too try and find the right balance for standing & a similar one for sitting. I'm so glad that the prolotherapy has helped you & your SI joint has now moved into the realms of "normal" dysfunctional...what a long haul. I use a tennis ball each night to ease my oh so tight psoas - happy days - it does help though & at least I feel more relaxed after all the stretches.

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Re: Upper chest breathing

Post  Sarah001 on Wed Oct 30, 2013 9:42 pm

Oh god it has been such a long long haul to get the joint to stiffen a bit! Got another session next week and I'm going to have my kneecap done at a later date now it dislocates daily so it's going to be a very long haul but worth it. I've done well this week (for me anyway) and I'm glad I'm not the only one who uses the bizarre rocking method! My ribs are still pretty loose after a good week for breathing and my SI is out but not by far in my opinion on how it feels. V pain still present and as bad as ever so far but as my PF is still tight and knotty I wouldn't expect any other. Are you having your PF released yet? It's really n ice to be able to discuss this with someone in a very similar boat if you know what I mean! Very Happy 
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Re: Upper chest breathing

Post  Kathy100 on Thu Oct 31, 2013 4:01 pm

I know exactly what you mean! It helps so much. Glad you are having a relatively good week. My physio hasn't done any internal PF releasing yet as she said there was so much else going on with me (mis-aligned pelvis, coccyx etc etc) she needed to work on stabilising that first before doing any internal work. Last week she did some releasing on my left hip (which is tight), my coccyx and back (which did cause some internal releasing too) and some really sharp trigger points (felt jagged) on my inner thigh crease on the right - they did refer some pain into my vagina on the right while she was doing it but that went. My right inner thigh is very painful - I can't sit cross legged for example; although if I breathe right and I can relax it down. It feels as if she is peeling back layers and layers of knotted muscles & that there is still a way to go yet. My v pain is still there but it is less and I can do all my stretches easier without having a flare-up. Walking feels much easier too. The tailbone pain is the worst - I use a donut cushion at work but it still builds up through the day... I've got another session booked next week.

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Re: Upper chest breathing

Post  Sarah001 on Thu Oct 31, 2013 7:25 pm

I suppose I'm still on the stage before you then as I can't even have much externally released yet so my physio isn't even giving any thought to PF release either. I've got to stabilise, hence the prolotherapy, before she can begin releasing anything other than key muscles that pull me out of alignment but it's good to hear some external work may also lessen the V for me. I also have a tight left hip, bizarre as it's the only genuinely tight area on my entire body so that's one I do stretch and do trigger point release on. I put it down to the right side SI and hip moving so much the left side doesn't need to plus as that side has gone into a compensatory posterior tilt because of the right side anterior tilt the hamstrings on the left are very tight on me. I have also recently added another element to helping my hips in standing and I rock to the place I should be followed by drawing myself upward so I decompress my spine and stand correctly. It is a very long winded process but I feel like I'm very slowly making bits of progress so fingers crossed at some point we'll get onto PF release and get some relief from the V!
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Re: Upper chest breathing

Post  Kathy100 on Wed Nov 06, 2013 12:27 pm

Hello Sarah - I've started doing the drawing up as well as I tend to slump a bit when I'm sitting or standing. I went to pilates 1:1 and she did some spine stretching work with me that helped with my hips; although I've started standing with my right hip forward a bit - so will have to get physio to check this. My v flared up a bit over the weekend due to me getting stressed but has calmed down again now. Had to cancel my physio this week as my boilers packed up! Hope you are having a relatively good week.

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Re: Upper chest breathing

Post  Sarah001 on Thu Nov 07, 2013 9:44 pm

I've done really badly this week, I've never managed to do well for more than a week so far!! I had more prolo injections tonight which really hurt to be honest so I'm stiff as a board in my right SI joint and lumbar area, physio tomorrow and then carry on with it all. What did your pilates teacher say about your pelvic floor? I've seen 3 for private sessions but because of my EDS they just didn't know where to start and all dumped me! Did yours have any tips about not overdoing the pelvic floor during exercises?
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Re: Upper chest breathing

Post  Kathy100 on Tue Nov 12, 2013 11:16 am

No - its difficult to have a good week! She has concentrated more on stretching and opening up other parts of the body as they are so tight - yesterday was work on spine and shoulders rather than much pelvic floor work. Also work to get me using my abs rather than holding on with my legs. This seems to be working albeit very slowly - today I do feel more relaxed all over from it. I'm finding if I remember to relax my shoulders it continues down to the pelvic floor. She has gone through posture with me (the rocking) and correct position of the pelvis when standing and sitting. We've only done very small amounts of pelvic floor such as gently moving the pelvis up and down and to the left and right to try & get more movement there whilst sitting on the ball. Also work on moving the legs in the hip socket joint and exercises to try and get my legs to let go. She has emphasised that with any stretch I do there shouldn't be any gripping! easier said than done....
I hope your pain from the prolo injections has subsided - are they helping do you think?

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Re: Upper chest breathing

Post  Sarah001 on Wed Nov 13, 2013 5:58 pm

Oh yes the "stability without rigidity" holy grail!! Laughing  I find I'm much better pain wise if I don't grip with my legs and glutes and if I breathe properly throughout the day but it's so hard to correct it all isn't it? My prolo injection sites have calmed down a bit, I have some very sore swollen ones on my lumbar spine though that have yet to subside. I know once the joint is stable enough the whole physio stuff should start to help but it's so long winded! I've done badly this week due to stress, found a breast lump just to add to my worries so I'm awaiting a hospital appointment for a biopsy. I'm also doing slightly longer hours because of the xmas rush that's well and truly under way so by the end of the day I'm even more of a disaster than usual, if that's possible!! Keep trudging along though and practising it all hoping my brain might soon start to remember just a little bit of it!! Rolling Eyes  Do you find your trigger points stay away once they have been released or do they just pop right back in again? Mine currently pop right back in but given I'm not using anything correctly yet I put it down to that.
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Re: Upper chest breathing

Post  Kathy100 on Fri Nov 15, 2013 11:36 am

Yes - I'm the same - yesterday I could feel myself tensing up as the day went on. I suppose at least now we are aware of it :0). I try to remember to take breathing breaks & let everything relax through the day but it doesn't come naturally. Sorry to hear you've had a bad week - stress always makes my pain levels worse too (as an aside it annoys me that now I can't even get stressed in comfort if you see what I mean!). I had to have a biopsy earlier this year on my womb which luckily turned out to be nothing but the waiting was the most stressful part. I think practising is the key - the body has to undo years of mis-alignment & so it takes ages. At least that's what I tell myself.
Trigger points - with the first physio I saw she would release them & I'd try at home which provided temporary relief but the they'd always be back quickly - I think it's because she never got to what was causing them. With the physio I'm seeing now some have disappeared (in long muscles that run parallel to the spine, stomach), some are much less, some are the same. Sometimes when she releases one trigger point another one surfaces which was deeper down (we went through about 4 levels on my inner thigh!). I think they hang around because there is still work to do & the muscles are still over tensed.

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Re: Upper chest breathing

Post  Sarah001 on Fri Nov 15, 2013 6:52 pm

My physio has actually recommended I do short breathing breaks during the day today, my breathing has got worse recently so it sounds like a good idea. I'm also instructed to back off trying to use the deep stabilisers during the day as I'm doing it wrong far more than right and now have little structured bits where I use it so we can ease it in slowly and properly so I'm going to concentrate on breathing and not gripping as I'm stood all day and only use the deep stabilisers when I know I can do it right. I have got to the stage where I can do heel slides minus all the faulty rubbish I do so I have made a bit of progress along the way! Very Happy 
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