New Physio

Hi all,

Just checking back in. Progress wasn't great over Christmas with trying to keep the pelvic floor relaxed. In times of stress it just all goes out the window! But I have been trying hard at the external trigger point work. I never realised before how knotty my groin are is! It's like bubble wrap under there! Just wish it would pop as easily!! I find the internal work a lot more difficult though. Because the vestibule is so raw and painful, any pressure on that hurts. So when I insert a finger it's hard for me to tell whether it's the pain of the pelvic floor muscle or just the intense pain of the vestibule. Anyway I know I have to keep trying to relax it, or the trigger point work won't do any good. As we say, onwards and upwards!

I have the same problem in the vestibule and often find I'm pressing a sore area of skin but there's a tight band of muscle under it. I'm hit and miss about how well I stay relaxed too, it's very difficult to relearn stuff isn't it? I've got really twangy bands of muscle under the labia majora which contribute a fair amount plus my adductors are all sore and tight too which doesn't help. In my case I'm having to build up some of the external muscles before I can release the PF so it's slow going! Damn my stupid loose joints and all the problems they bring with them!!

Yeah it's ridiculously hard stuff to relearn! It's also been a bit of a relevation to me that other 'normal' women have smooth, painless muscles down there. I guess i'd never really massaged that area until now, so I have only just noticed how knotty the muscles are. It just can't be right to be like that. I'm really starting to think it may have caused the vestibulyodyia or could be perpetuating it at the very least.

If I only think about this one day at a time then I feel ok about it, but when I think what a long road this PT is going to be then it isn't a nice thought! I just need to be consistent with the trigger point work. Though I think I have more hope of that than relaxing the damn muscles while i'm all stressed and busy at work!!

That's how I deal with it too and don't think longterm or I'll get totally overwhelmed by what I've got to do! I've got the joy of also learning to use the deep stabilisers properly again which means months of relearning to contract them consciously every time I do something until they do it automatically, I've even got to learn to walk differently so I've got a long, long way to go! It's weird how many trigger points you can find if you look for them isn't it! I'm currently treating trigger points on the left side only because the right side needs them to hold me together so I'm not sure how well that will work but I can't risk the excrutiating pain of SI flare ups over and over again. My next physio appointment is tomorrow and I'm hoping she'll know what to do after the last exercise set my SI joints off, really nervous she'll turn out to be someone who doesn't have a clue so fingers crossed!

Another update. After a terrible start to my physio regime and an SI flare up to rival all SI flare ups thankfully my physio has redeemed herself today. I went in with a misaligned locked pelvis and a very prominent limp and she sorted that out in no time, she also had a feel around my left hip and identified a problem I've been insisting for 7 years was there but all other physios said it wasn't possible so impressed with that! We had a good chat and she did some external muscle testing, months away from internal work at least apparently. Anyway, I don't know if many of you read this thread and I'm sure alot of you will think I'm waffling on about SI joints on the wrong forum but my physio was telling me today 90% of women with vulvar pain who she's treated have SI dysfuntion of some kind that hasn't been identified. So even if you don't have back pain go and get them checked!!!! Anyway, exhausting ( think it must be the fibro that's left me feeling pooped) but pleasing day and I feel like I'm seeing the right person again which is a huge relief. She also reiterated today I have no ceiling on how many sessions I have so not to worry about that. It's a 2 hour round journey in the car which is a killer but if I get somewhere it will have been worth it. I do feel like me and the physio are starting to bond a bit now, I didn't feel that last session which worried me. My pelvic floor however is objecting to being pulled around by the manipulation of the SI joint so plenty of wine to numb me is in order of the day.

Rose86 wrote:Hi Sarah,

Yeah it seems I have mine pulled up all the time. When you say if you can stop tensing it for a few days in a row, do you actually mean have it relaxed constantly? Because at this stage, I can only drop it for a matter of seconds, when i'm focused on it, if i'm distracted doing other things then it's right back up there again! Is there supposed to come a point in time where it's always dropped? It's just hard to imagine, as I'm so used to have it pulled up, although that's not a conscious decision. I've noticed that when i'm stressed, or for example when i'm driving and I have to stop quickly or swerve for something, then I really pull it up a lot. The thing is I can't remember my pelvic floor feeling any different to this, it feels normal to me. Relaxing it feels like the exertion, if that makes sense.

I haven't had my resting tone measured my this phsyio, but i'll see if she can measure it next time - i'm hoping to go monthly. She's actual had vulval pain herself which is really useful that she knows what she's talking about. I don't actually know what an SI joint is... But I find the right side of my neck and shoulder are always knotty from driving quite a lot (more so than the left), so she said that may be why, because it's all linked.

She found some external trigger points on the outside (again more on the right), and the knotted right side internally was a lot more sore. Interestingly though my vestibule pain is worse on the left.

I'm just supposed to be working on dropping the pelvic floor and general relaxation/breathing at this stage. But can I really lengthen my pelvic floor muscles simply by dropping it whenever I remember, and only for a few seconds at a time? I just doesn't feel like enough! She did say I could try some internal massage, but actually on the left I would struggle to reach the muscle (I didn't realise it was so high up until she had her finger in there and was trying to 'encourage it down' - weird feeling!), but I could try and work out some of the knots on the right.

I am the same - Can't remember ever feeling "relaxed" - the relaxation feels like I am pushing my pelvic floor down - it feels unnatural. I never used to have pain though!

It's one of those things your brain learns to do that feels natural to you but causes problems if it's done repeatedly so eventually leads to symptoms. On the plus side your brain can relearn not to do it so it just takes time and practice. I find if relaxing the pelvic floor feels like I'm pushing it down usually I am which again puts pressure on the muscles and I have to concentrate and think of gently relaxing it instead.

Rose if you still clench it would explain why you are unable to get trigger points out because that will make them difficult to deactivate and make them pop right back in again too. Have you had your pelvic alignment looked at? That's something only a physio could assess and treat and if it's out of alignment no amount of trigger point work will help. It's also a good idea to have the muscles around the pelvis tested too for imbalances as they will also put pressure on the PF.

I'm not too bad at relaxing the muscles as long as I don't have to do anything with the others but as I'm trying to get enough stability to have the trigger point work done I have to attempt to use the transversus abs and multifidus without the PF which is fine when I'm not moving but tends to go wrong as soon as I move! However baby steps and at least I can separate the muscles now which I couldn't before so gradually I'm getting the hang of some of it.

Another physio appointment yesterday and part of my back near my ribcage and in the appendix area were both kicking off, turns out I've been twisting a bit when I did one of the stretches she gave me so a change of position was required for that. She worked on some of my hip rotator trigger points and the pain referred to both the pubic bone and labia majora plus into my feet so at least I know where the foot burning is likely coming from. As part of the training the physios have to practice on each other and she said when she had her pelvic floor treated it referred into her foot on the same side too so they are connected. No other changes to my exercises yet though as I'm still way too unstable for pelvic floor release. I need to practice breathing while contracting my Transversus Abs I think in preparation for any exercises she may give me for stability. My next appointment is 3 weeks away instead of 2 because progress just isn't happening with any kind of speed. Stupid crappy ligaments and joints.

Back at physio today (I'm not sure anyone is reading this thread but I'll keep updating anyway in case it helps anyone in the future) and I've now progressed to endurance holds of the Transversus Abs, my maximum is 20 seconds at the moment which is actually shit considering that muscle should be active all the time we're upright! Baby steps. I mentioned that each time she realigns my SI joint (every time I go) it makes my entire pelvic floor burn for about 5 minutes even through my hefty dose of meds which she said was actually a good sign because it indicates my PF is behind the diffuse burning as well as the VVS.

I can't recall who the other member was who got referred to David Nunns at Nottingham but the crappy triage team have sent me directly to pain management instead, do not pass the specialist and do not collect any useful help. I mentioned this to my physio today and she said there wasn't much to be gained from pushing for the appointment with him right now because as soon as he heard about my pelvic instability and PF issues he'd refer me to his team of physios anyway, no point in that as my physio does all the courses they do and Nottingham is hours away from me so I couldn't go regularly anyway because of my other issues with my joints so I'm going to let the vulval dermo know her referral didn't get me there but cancel the pain management appointment. Makes me really mad when they do that and won't send you to see someone who you really should see.

My physio appointments are back at 2 week intervals now, I was so worried I was failing physio yet again I asked her outright if she was tapering off my appointments before dumping me and she'd only spaced them 3 weeks apart to see what would happen and as I ended up all misaligned we're back at 2 weeks. So for me it's a long haul through pelvic stability stuff before I get to address the vulvar pain so looks like I'm stuck with that for another year or so at least. Depressing but reality.

Hi Sarah

Yes i'm reading! Please do keep posting - its so helpful to learn about your and other women's experience. I have my first physio appt next week. I'm trying not to get my expectations too high. I'm almost hoping for PF dysfunction to be diagnosed - how sick is that?! I'm thinking at least it will give me a CAUSE that I can work on.

Don't give up. The hard work will be worth it if it brings you relief. In case it helps i'll share this - I keep telling myself that my body WANTS to get well (after all its telling me through the pain and discomfort of vvd that something's wrong somewhere) and i have to support it and I'll do whatever it takes to do that - i know i know its a bit new-agey, mind-body connection and all that ! but I do find it's a mindset that helps me cope.

Lx

Thanks so much for the reply, I do sometimes feel like I'm waffling on to nobody on this thread! I was really, really stupid in the beginning and couldn't get my head around the fact problems with the pelvis and pelvic floor could cause the problems I had with my vulvar so wasted a full 6 months before I even went to get it checked out trying various lotions and potions. It was really the dermatologist ruling out skin conditions that made me go and then I had it explained to me how the muscles and nerves can cause the inflamed skin and finally got my PF checked. I could definitely rule it in as my resting tone was the highest she'd ever seen because my PF is holding my very unstable pelvis together. I was the same as you and thought I really hope I'll find something I can rule in as a cause and of course I did. I think once you've ruled out contact allergies, infections and skin conditions muscular problems are the next port of call.

I don't think your mindset is anything other than a good one, if it helps get you through all the tests etc and gives you the motivation to keep trying things then it's great. My theory is if I do nothing except take meds I'm definitely not going to get better whereas if I keep trying at least I've got a shot at it. A positive story for this section is one of my friends had an SI joint problem which she eventually got on top of but during it she thought she had a really persistent case of thrush which she didn't tie into the SI problem until I told her about my V and VVS and it suddenly occurred to her she'd had the same and it had got better with stabilising her pelvis so that gives me hope. Unfortunately I have a genetic condition that means my pelvis is severely unstable so it's going to take alot of work and time to get anywhere but I keep thinking about her and her recovery and it helps keep me going.

My recent appointment with my physio resulted in her telling me we'll soon be starting some very gradual pelvic floor work, I'm excited and a bit anxious at the same time! We can't do much because I'm still very unstable but she wants to release some of the areas where it may be trapping the pudendal nerve so maybe next time or the time after we'll start that. She doesn't recommend nerve blocks because they lead to a loss of control of the muscles so for now she's going to deal with anything pudendal if that's the problem.

Rose I don't know if you're still reading but she also discussed botox injections into the PF with me, I'm definitely not a candidate for this because of my lack of stability but she seemed to know how to go about getting them if I could have them in the future so it might be worth asking an NHS Women's Health Physio about where you need to be if you're still looking into them.

Hi Sarah,

Yep i'm still reading. That's great news that you'll be starting some pelvic floor work soon. Just take it easy and don't get excited and try and do too much at once!

I've been referred to a new gynaecologist now, and I saw her for the first time on Friday. She did an anaesthetic and steroid injection (at my first consultation, so that was a bit unexpected!), but it doesn't seem to have done anything. I didn't really expect it to, past experience has made me a bit of a pessimist about these things! I have to go back in 6 weeks, when she'll decide if we do it again or move onto something else. I think she is open to the idea of botox, but hasn't actually done it before. What did your physio say about it then? My gynae talked about pregabalin, but I explained that i'm pretty sensitive to medication side effects so that'd be a last resort for me.

Hi rose, nice to see you again! I bet those injections were a huge shock! I'm on Pregabalin and although I'm pretty sensitive to meds it has helped a bit with the diffuse burning and I get a dry mouth and a bit dizzy at times and that's it despite also being on Ami too. I'm almost at full dose of Preg too so not just a little bit.

My physio at first howled with laughter at how unsuitable botox would be for my unstable pelvis then proceeded to say it's very effective at relaxing the pelvic floor and they frequently use it at that hospital for overactive bladders plus the pelvic floor surrounding the urethra and frankly if they do botox at my hospital they're bound to do it at some of the bigger city hospitals so I think you might be able to get it on the NHS. Best thing to do is ring and ask them, try the WH Physios for info too as they seem to know all this stuff! Sounds very effective for relaxing muscles but I think the issue is knowing where to inject it.

I had a great couple of days until today and for reasons known only to my stupid pelvic floor I started clenching the damn thing from the second my feet touched the floor this morning so I'm back at full pain level again. Nice to know it does decrease my pain though so if I can ever maintain it I should be in a far better place than I am now! How are your dropping exercises going? Incidentally have you tried the isometric pelvic floor relaxer from either Heal Pelvic Pain or Ending Female Pain? If not give me a shout and I'll describe it to you.

The latest installment and unfortunately my pelvic floor work has been put on hold, I've had a spectacularly bad SI flare up this week so we're aiming to get me 2 weeks without one and still in alignment when I get to my appointment before we start PF work so I'm a bit pissed about that. However she did say that the couple of days where I felt good before it all going tits up were proof this would help me significantly once we can maintain it and it also shows how much PF involvement I have with my problems. Going to be a very, very long and difficult road for me it seems. I long to have no stability issues because I'd be out the other side and finished by now if that was the case!! Anyway, she's tweaked my exercises a bit to see if we can stabilise it with those instead and I'm back there again in 2 weeks time.

Anyone else on the physio trail have any news? It gets a bit lonely in this thread sometimes!!

Hi Sarah

Sorry to hear you've had a flare up that's put your PF work on hold. Just a thought - have you seen a chiropractor as well? Not sure how similar it is to physio work but a chiropractor has been helping me (see below).

My physio news is that I had a PF assessment a couple of weeks ago. I happened to have it on a good day after over a week of no symptoms (I foolishly thought by vvd had gone - ha ha!) and the biofeedback showed that my muscle function was normal (just a hint of being slow to relax a contraction but still within normal range). Before my assessment I had started doing (intuitively) what i call the 'frog pose' - lying on my back, putting soles of my feet together, drawing my feet up towards my body and letting my knees drop downwards. At first I couldn't drop my knees very far as the pose hurt - i could feel the tension deep within the muscles/ligaments? connecting my legs to my pelvis. I kept doing it and it really seemed to help reduce my pain. I told the physio about this but she wasn't convinced it was a direct link as apparently that stretch relates to your adductor muscles. But I do wonder if it helped to the extent that my biofeedback showed a basically normal PF function and it did seem to reduce my pain. Anyway the day after the assessment I started to get that familiar burning sensation - only mild initially but enough to make me realise my vvd hadn't gone.

At the time of my PF assessment I was also suffering from excruciating shoulder/arm pain which I thought had been caused by over-enthusiastic gardening during the recent nice weather. To cut a long story short I ended up seeing a chiropractor for that (my body is costing me a fortune at the moment!). She told me my pelvis was out of alignment (one side was tilted lower than the other) and this was likely a key factor for the shoulder/arm pain (the presenting issue was trapped/compressed nerves in my neck). Apparently my body may have compensated for this misalignment for a long time and then the final straw which tipped it over the edge was the gardening. The interesting thing is that I told her about my vvd and she said that pelvic misalignment could also be a contributing factor for my vvd (is this the same for you Sarah?). Its all to do with the fact that spinal and pelvic bones/muscles/nerves are all linked. She said that the 'frog pose' i'd been doing could therefore have helped my vvd (in contrast to my physio's view) So i'm having treatment to sort my arm/shoulder out which includes realigning my pelvis. My vvd symptoms have reduced again to a minor level so i'm now keeping careful watch of any links between vvd pain and my pelvic alignment.

I bought the Heal Pelvic Pain book and will be doing exercises from this, and from my chiro, to keep my PF relaxed and functioning, and my pelvis in alignment. Another good book i've found for this is "The Egoscue Method of Health Through Motion" by Pete Egoscue (the subtitle is "A Revolutionary Program that Lets You Rediscover the Body's Power to Protect and Rejuvenate Itself"!) but it does make a lot of sense as I read through it and the thing I really like about it is that it emphasises your own responsibility and ability to heal, not doctors or medication. Its not a vvd book but is about musculoskeletal pain and dysfunction in the human body, causes and how to deal with it. The frustrating thing is that I can't start exercising properly until my arm/shoulder recover but i'll report back once i get into it.

The other possibility i'm keeping an eye on is that my vvd is cyclical as my flare ups seem to happen around ovulation... but that's for another thread!

Lx

Thanks for posting all that, I keep banging on about pelvic misalignment but I often feel like I'm the only one who believes it!! I have alignment issues too and severe instability but I can't see a chiro because of my Hypermobility Syndrome, chiropractic manipulations made me alot worse in the pelvic joints years ago because they're too severe for my joints. I have to stick with physio because they use gentle techniques with me. It does sound like you lucked out with the physio because she should have checked your pelvic alignment and she should also know the adductors are closely related to the pelvic floor because they attach right near the vulva, you're right to stretch them and also look for trigger points in them. I find if my adductor trigger points get worse my generalised outer V does too. If your symptoms are mild that slight delay in relaxing the PF could well be contributing, it only takes a little bit of a problem to give pain.

I'm really pleased you're getting some help and do keep us posted on your progress!

Thanks Sarah and you're not alone - i definitely think pelvic misalignment has a role in V. And I can understand why you steer clear of chiropractors then if you have HMS - their 'interventions' can definitely be quite intense! Hope your new stablisation exercises are working - stick with it.

My arm/shoulder is getting better so PF exercising starts in earnest soon. Tho i've already been doing my 'frog pose' and some of the stretching/relaxation exercises from Amy Stein's book which don't need me to use my arm, and my V pain is staying at zero/minimal level.....keeping my fingers crossed and my adductors stretched!

That's good news, it sounds like you have a mild case that you're dealing with early which is great.

I'm going to be doing some breathing work next appointment, I'm a shallow breather at the best of times and stupid as it sounds clench everything and breath hold when I'm in a hurry, I'm just not a very relaxed person full stop so this will be good for me. My physio always checks pelvic alignment on V patients and says most of the time there's an alignment and stability issue so it's becoming more recognised by physios and lots of them check beyond the pelvic floor now.

Anyway keep us posted on your progress, it's nice to have someone else in this thread with me!!

At the moment I've just started the diaphragmatic breathing, bit of a hitch to begin with because my upper abs are solid and knotty so I've got to do trigger point work every time I do the breathing. My physio has said she thinks I may feel a significant difference in my pelvic stability by Xmas so very slow progress is expected. I feel a bit like I'm boring everyone rigid with my physio thread so I'm going to sign off for a while. I'll pop in sometimes just to see how everyone is doing and good luck to you all.

Hi Sarah, don't feel like no one is reading it, I've am! I've just been offline for a bit while with a laptop virus, but have a new one now!

I've found myself a new doctor, had to go private to see her but she's good. She's open to the idea of trying botox which is good. She said she is about to try it with another patient, so will see how that goes, and has a colleague who has used it quite a bit and has some success.

At the moment (today) she's just given me a steroid/anaesthetic injection to see if that does anything. It hurt like hell, but I don't think it'll do anything. I just needed to try her idea first so she would listen to my idea about botox. I'm not going to be able to fund it though, she says it's going to be really expensive, so I need to look into private health insurance. Not ideal, but I just need this to go away! I've just started seeing a new man a few weeks ago actually. I told him about this before we got together and he was actually really understanding. I gave him a way out before things became official, and he didn't take it so i'm hopeful. I'm not under any illusion that this doesn't affect a relationship, but I think I have some time before it becomes an issue. I just hope I can find some improvement before that happens!

I hope you may some progress soon, but this really is a waiting game, as we all know. Patience is something we've all learnt to have unfortunately.

I'll keep you updated anyway, I have to go back to see her in 6-8 weeks. x

Just popped in to see how everyone is doing, I've made a teensy tiny bit of progress with my pelvic stability issues. My physio did as I requested and mobilised my left SI joint to see if it took some pressure off my super lax right SI joint (something I've asked physios to do for years but they were all too scared to mobilise someone with Hypermobility Syndrome) and it has. I can now last a week before my alignment slips back into misalignment and previously it was literally a couple of days if I was lucky so I'm pleased to have finally made a little bit of progress after the last 7 months with a Women's Health Physio. When I worry about how we're going to get everything functional again she's great and calms me down by saying we'll just keep doing bit by bit until it stays put. Once I can do 2 weeks without misaligning we'll be starting gradual pelvic floor work. I can confirm pelvic floors can cause widespread burning because each time my pelvic bones are moved which of course moves my pelvic floor it burns like crazy. I'm doing about 3 hours of home stuff a day religiously to try and move forwards with this, I've been told to focus on the global muscles for now to improve my pelvic alignment and stability so we can retrain the pelvic floor and deep stabilisers properly once I'm more stable. As long as I stay aligned I can get away with a small amount of squats which relieve pelvic floor pain as long as you don't clench anything while doing them so I do as many as I can manage to try to improve my glutes. I use massage balls, sometimes I can use dilators without flaring up the SI joints and I have the least pain on the days I do this but I struggle a bit with the 3rd dilator and it feels a bit too big which is so ridiculous as it's nowhere near penis size but hey ho.

How did the botox go Rose? Have you had it done yet? Anyone else have any news?

Hi Sarah - brilliant to hear that you are making some progress!

My chiro is going well - down to monthly appointments. And i definitely support the idea of working on general muscles to help stay aligned. It makes a lot of sense to me to create a strong frame for your back and pelvis so I do exercises daily too. And it seems to be working - my pain levels are at their lowest since i started with vvd last Nov.

So keep going - it does work!
x

Really good to hear from you Loulou and especially with good news! Last time I went in my burning was through the roof when I arrived and I also felt like my lumbar area was sprained and my brilliant physio didn't say let's have a look at your lumbar area she immediately said it's your sacrum and it was, it was wedged in a misaligned position and when she put it back my burning immediately dropped down to about a 5/10 from a 10/10. Very impressed with her!

My progress is only minor but it's progress all the same and I'm definitely going to keep at it. Keep in touch! x

Sarah! Actually logged into today to see how YOU were doing. Everyone else I used to talk to on here seems to have dissapeared. I have been quite for months I know, and I'm sorry. I am glad to hear you are still going with the physio and are making some progress. 3 hours a day is dedication - well done. It just makes you feel better knowing YOU are doing something to help yourself, gives you a bit of control back hey.

I have been really well over the past 5 months since getting pregnant and I am 21 weeks at the moment with a baby girl!

Sorry again and please keep in touch!!