6 months constant pain

Hi everyone
I've written many posts before and a month ago I saw a physio who diagnosed me with hypertonic pelvic floor muscles and found a muscle knot inside me on the right side. My pain has ever only been right sided. I'm doing stretching and breathing exercises but I can't do the internal massage as the pain is too bad. I don't know if the muscle is trapping a nerve but it kind of feels like I have an object in my vaginas that's sharp and stabbing sometimes throbbing. Initially the pain was burning intensely this has gone now but I have this other pain. Not one day out of 6 months have I been pain free. At first I had vulva pain too but now it's up inside my vaginas. Does anyone else have this kind of pain? I'm getting in a right state mentally keep having panic attacks. I've list everything myboyfriend left me, lost my job and house feel so down. I never had this before securing with him I don't understand it.

Hi kate,

Sorry to hear your so unwell. Have you looked up the symptoms of pudendal neuralgia or pudendal nerve entrapment. Your symptoms seem to match it. What sort of medications have you tried. Or what set it off?
Violet x

Hi violet
Thanks for your reply. It was set off by section with a new partner. I was with my past partner for 9 years and never had this. I also have thought about pudendal neuralgia or entrapment but I had an mri scan for this and they said there was no entrapment. Have you ever had symtoms like this. I have suffered with constipation all my life I don't know if this caused it. I'm so down and confused

Sorry sex with a new partner got a new ipad spelling checker keeps changing my words. I am taking pregabalin nortriptyline anti inflammatories iron magnesium and vitamin d

There could be just an inflammation of the pudendal nerve and not entrapment. Sorry if you already know all this!. Yours just sounds like a classic case, even down to the constipation. If all the meds aren't working, they need to try other things. Like a nerve block or physio etc. I see your already having physio has it helped?
Was trying to figure out what sectioning meant with a partner then!!
Did you get an infection from the other partner, or was he rough, mine started up through constant infections, which were missed by my GP and myself. Sometimes bacterial vaginosis can be present with no symptoms, so mine was left for weeks. I too have constipation which I think also hasn't helped my symptoms. I'm now on movicol, as my symptoms seem to ease I bit if I'm not bunged up. Im going to pester my consultant for an MRI on Tuesday, as even if nothing turns up on it, at least you've married the search down. I'm going for the nerve block then to cancel out PNeuralgia, as PN is reported to worsen with time.
Violet x

Sorry, my pain is right sided too, with occasional feelings of things either being in my vagina or at the side of the vulva. Also peeing only stings on one side! Wtf!

I don't think the physio is helping much. My new partner was quite rough compared to my previous partner. I'm so confused. The first time we had sex it took about 4 days until I felt any pain it was burning sore raw got tested for all students all clear. After 10 days symtoms all went away sex was fine no pain. It happened again in June after sex and went away and came again in augvafter sex but has never left. The burning has gone now but this stab sharp pain hasn't. I'm scared if it's pudendal neuralgia as will it ever go? Could it be caused by sex? Are you in the UK? I don't know where to go for a nerve block.

I'm going to get a private refferal to Dr greenslade in Bristol who apparently specialises in CT PN blocks. The less time you have PN the greater chance of it being cured by a nerve block with lidocaine and steroids and 'resets' the nerve. PN is better to have than PNE apparently as they have to operate with PNE. Apparently pelvic floor dysfunction can also set off PN or the other way around. In your situation I suppose sex must have injured something, who bloody knows with this condition!
I'll try and find the page I found containing the specialists in the uk.
Possibly mention it to your gynae.
How have you found your gynaes, are they helpful? Mine are absolutely crap, so I'm going private, which will be expensive but I can't go another year like I am, I want some answers I'd rather have some serious illness which is treatable that this shit. <sigh>.

Am in Wales actually. Lots of peeps on forums seem to be American don't they, them and the Americans appear to get much better treatment. Over my way, its just dump a load of steroids and lidocaine on you, and see you in 6 months!

Am in Wales actually. Lots of peeps on forums seem to be American don't they, them and the Americans appear to get much better treatment. Over my way, its just dump a load of steroids and lidocaine on you, and see you in 6 months!

Australians I meant!

Yeah Americans seem to get treated much better than us. Where in Wales are you I'm in cheshire. My physio found a muscle knot in my right vagina muscle that's where it hurt but I don't know if that has been caused by pn. how long have you had symtoms? I'm private at the moment but it's not any better they all been useless have seen 4 gynos urologist dermatologist vulval specialist and a physio. What have they diagnosed you with? My boyfriend ended things with me everything a big mess. I'm scared I sill never get better.

Hi Kate, I just wondered if you are finding you still clench on and off in between physio sessions? If so this will undo any work done and it might be an idea to take a step back and focus on the relaxation effort for a while first. Also any imbalances in the outer muscles around the low back, hips and pelvis can also undo any pelvic floor work because they can be the reason for the spasm so if your physio hasn't had a thorough examination of all those it would be a good idea to ask for it. Pudendal nerve entrapment also usually has physio as the first choice of treatment so it's not necessarily a surgical occasion and the surgery isn't to be entered into easily since it destabilises the sacroiliac joints which in turn will tighten up the pelvic floor even more. A good physio can gently touch the pudendal nerve and see if it's painful to rule PN problems in or out so again might be worth asking about that too. If you are not maintaining the work your physio does there will be a reason and it needs a bit of detective work to figure out what that could be.

Hi sarah
Thanks for your input. I'm just getting myself in a right state about it all. Too be honest my physio doesn't really do much she just has a feel inside to see if my muscles have loosened and that's it I'm not really happy I feel I need more. She has referred me to a biomechanic doctor but I'm waiting. She found I have an inward pointing knee on my right leg and a foot length discrepancy. For quite a while I have found jeans were twisted on my right leg around my thigh area but I realise now it's my leg that is twisted. My pelvis is also misaligned being higher on the right and I get lower back pain on the right too. You seem to know so much I have read and read and I just get myself in a depression. I just want be normal. I do think I still tense my muscle I'm trying not too it just seems to go back. My vaginas pain is also only right sided and I initially had burning in my vulva to the right side after frequent intercourse which has seemed to set it off. When I was with my partner of 9 years intercourse wasn't so frequent but I did sometimes experience burning after just for the rest of the day. What is your thinking on all this? Where are you in the UK? I have searched everywhere for a women's health physio. She suggested I buy a pericalm stimulation unit but I'm having trouble getting the probe inside.

That gives me alot more to go on! First of all you're totally correct in that you need more, your physio should have realigned your pelvis for starters because that puts a twist in the pelvic floor. You have a typical anterior rotation on the right by the sounds of it, internally rotated hip and leg length discrepancies happen because of this and the pelvic floor on that side is being stretched at the back of the sacroiliac joint. I would be very upfront with your physio and ask her about realigning, and more importantly stabilising, your pelvis. Until you get that twist out of the pelvis your pelvic floor won't settle down. There's little point in trying to relax it if it isn't where it should be if you see what I mean? You'll likely need to do some core exercises with minimal pelvic floor involvement to get the pelvis and hip to stay were they should be. I'm not surprised your physio hasn't done much because I'm learning there are huge differences amongst how thorough physios are. If she can't or won't do this you need to change to another Women's Health Physio, I'm in Lincolnshire and have found a little gem on the NHS who realigns my pelvis for me and we're working on that before she's even touched internally. If you want to change to another privately I'd advise ringing some up and asking about whether they will realign your pelvis as well as help you with the pelvic floor. You will still be clenching because your brain is attempting to stabilise the right side because it knows the position is off so that has got to be dealt with first. Having legs that are different lengths puts a huge strain on the entire body but as it's your pelvis that is causing this never let anyone talk you into a heel lift or it will encourage it to stay twisted. Don't get disheartened, you know where the problem lies now so it can be dealt with.

Is the physio you see a Women's Health Physio? She doesn't sound particularly helpful if she is and if she isn't there is usually one at every hospital and your GP can refer you. I searched online and found one privately quite near to me in the beginning and started there but once I couldn't afford it anymore I rang the hospitals and asked if they had one before approaching my GP and insisting I be referred to one on the NHS. If you haven't done that it's worth a go plus if the physio can see the pelvic problem why on earth isn't she helping you with it? Most likely you will need to strengthen your glutes on the right side and possibly hip flexors on the left, while you wait to get some proper help you could stetch your hip flexors on the right side and hamstrings on the left, that will take some of the pressure off the pelvis. If your right side is internally rotated I'd have a poke about in your adductors (inner thigh) and find some of the trigger points, I'm willing to bet money you have some in there and they often reflect what's happening in the pelvic floor so have a press all around the inner thigh and hold any painful spots for 90 seconds to help them release. Most likely the piriformis on the left will be knotty too so a ball on the floor would be useful. If you're unsure about where any of the muscles are just google them and with the stretches make sure you don't let the pelvis move into a twist while you do them.

After that essay, I've done 8 years of pelvic instability and have learnt alot in that time, the only other thing you need to do is either kick your current physio into touch or find a new one. Don't let this get you down and stop your recovery, if you look hard enough you will find a decent physio and if it means a bit of travel it's worth it, I currently make a 70 mile round trip every other week to see mine and she's well worth it.

Thanks Sarah I know where abouts the pain is inside I can put my finger on it and it makes me go through the roof. I'm not seeing my physio for 4weeks I think it's too long. I am actually seeing a women's physio next week on the nhs at liverpool women's hospital I'm just hoping he is better. My current physio is private I just think she should be doing a lot more. I too travel a long way to see both of them. I would go anywhere in the world to sort this out.

Your very knowledgeable you should become a physio. I will have a look online for some exercises for my hip. I feel when I stand with my legs together that I'm crushing my vagina and vulva on the right side if that makes sense. I feel my hip needs to pushed outward more.

Do you know any specific exercises I can do? I'm currently doing the letting go exercises from the Amy Stein book and some yoga poses by Leslie Howard for hypertonic pelvic floor.

You seem to be having treatment for so long has nothing helped? Is your problem similar to mine? Sorry for all the questions just gives me comfort when someone gives me hope.

First of all let me reassure you I'm not typical for how long these things go on for, I have a connective tissue disorder that means my ligaments don't support my joints properly so it's taking me a long time to make any headway. I have had V for nearly 3 years now but I only started with regular physio with a decent physio a year ago and there's all the other years of pelvic instability to deal with first in my case so don't fret you'll be struggling in 8 years time! Some encouragement next, my WH physio sees lots of women with V and apparently a misaligned pelvis is the first thing she looks for followed by how stable the sacroiliac joints are and in 99% of cases she finds a problem with those that is causing the pelvic floor spasm and the V. She has treated, and successfully cured, most of these women. I also have a friend who had V because of an unstable pelvis and she recovered completely once her pelvis was stable and in the correct position so it's not all doom and gloom and you don't need to feel you'll be stuck with this forever.

I would guess your next physio would be better but make sure you point out you need your pelvis realigning on your first session so there's no mistakes this time. I'd guess the spot you're touching is a trigger point and that's why it hurts so much but until your pelvis has been aligned don't worry too much about that. The best you can do right now is the hip flexor stretches on the right, there is a picture of it in the book by Amy Stein, it's like a standing lunge but make sure your pelvis faces forward and you grip with your abs and glutes on the right side while you do it. Don't do it on the left side either as that side will likely be rotating posteriorly to compensate for the position of the right side so only stretch hip flexors on the right side. There's a glute stretch in there too and most likely a hamstring stretch which would be good for the left side but don't whatever you do do those on the right side as you need the posterior pull on the right. I know Amy Stein says do them on both sides but if you have a misaligned pelvis that's not helpful. Those will help the most as they take some of the faulty pull away from the pelvis. The next thing you'll likely need to learn is to use your transversus abs and multifidus with minimal pelvic floor involvement which is also mentioned in the book but it's best to get the new physio to check for asymmetries in that before you go any further. I have to add extra trans abs on the left and multifidus on the right so he should check that out for you too.

I think you are wasting your money on the private one, she should know how to realign your pelvis and the fact she hasn't shows she's not helping you at all. I've got my fingers crossed the NHS one turns out to be great so don't worry too much in the meantime, just do the stretches and dig about for trigger points until your appointment. If you need to chat or ask more questions feel free, if I know the answer I'm happy to share it and don't think for a second you won't get better because with the right physio, time and some homework you will!

Also make sure to do your exercises outside of pt I would never do mine and it obviously didn't help as soon as I started doing them all the time I was fine it also helps you to help in your own treatment which I consider a plus!

Alana I haven't been given any exercises to do from my physio she just told me to do internal massage which causes more pain. I have been doing the exercises from the Amy Stein book and some yoga poses from Leslie Howard who deals with hypertonic pelvic floor. I don't know if my pain. Is muscle pain or nerve pain. How do you know? My pain is relentless. I had 2episodes of the pain previously lasting 2 weeks then it was gone and I felt normal and was able to have painfree sex. The onset is weird the sex was not painfully the pain arrived 4 to 5 days later.

I think you're worrying about something that doesn't need it right now kate, the only way forward with this problem is to work through the known causes and once you rule one in work on it and go from there. If it's muscular or nerve related it should respond to physio, the muscles can easily irritate nerves if they are tight, and it will take a while to sort out your pelvic and hip alignment but once you have you should be able to get rid of that painful knot. Is your right foot hyperpronating? I'd expect that side to need an arch support given what you've said about it. Go to your new physio and see what he's like and I'm sure you'll soon have plenty of homework to do. Try not to worry about what might happen, I know it's not easy but you need to just relax and give the physio a chance to help you.

Hi Kate - I agree with Sarah 100% (Sarah you know your stuff and you are a real asset to this forum) I also had a twisted pelvis and it seems to have been the cause of my vvd (based on what's been working for me) tho at the start of my vvd i would have sworn that it was thrush related cos that what it felt like. Since i've been sorting out my pelvis, and all the other muscles that Sarah refers to, my vvd is almost gone It's taken me 9 months from starting with the 'physio' route to get to this stage so its not a quick fix but the joy of being painfree is indescribable.

If you can't find a good physio to realign your pelvis you could try a chiropractor (Sarah i know this was too extreme for you because of your stability issues) - i went to one for something completely unrelated and she diagnosed me with a misaligned pelvis and realigned it for me and i've been seeing her about once a month. The women's physio I saw on the NHS wasn't particularly helpful so along with the chiro I have been doing my own thing which includes doing yoga once a week and pilates about 2/3 times a week. Prior to starting the yoga and pilates I made some use of the Amy Stein's book but tbh the yoga and pilates have been more effective for me. The other book that i would STRONGLY recommend for anyone with a misaligned pelvis (or who's been told they have a leg length discrepancy) is Peter Egoscue's book 'The Egoscue Method of Health Through Motion'. Its not a vvd book but i started using it when i started the chiro and before i really got into the yoga and pilates. He gives an exercise programme which helps to realign your pelvis and the great thing is it focuses on getting not just the pelvis but the whole body (practically) realigned and strong (He calls it Condition II - so do the exercises for that condition). It took me 45 mins to do the full programme and i did it religiously every day over the summer and I think it definitely helped support the work of my chiro and most importantly relieved my vvd symptoms. Since i've got into the yoga and pilates i haven't needed to do his exercises but his exercises are a fantastic way to get you started.

Additional physio self-help tips from my experience :
- definitely do the adductor massage that Sarah mentioned. This exercise was probably the one that really got me to believe how muscles can be a key factor in vvd - what i call the frog pose (lying on your back, soles of feet together, feel pulled in as close to the body as you can get and let your knees flop outwards - if you can't let them drop very far and/or it feels painful then you definitely have tight adductor muscles)
- I found rolling my bum on a tennis ball was invaluable for massaging and releasing trigger points in my glutes. I bought a great book called The Trigger Point Therapy Workbook by Clair Davies which helped me understand and identify trigger points. But tbh you don't have to get too complicated - when i was using the tennis ball i just made sure i massaged any sore bits I came across! you could guarantee sore bit = trigger point!
- Regarding the internal massage recommended by Amy Stein, I found that too painful at first so i didn't start doing that until a couple of months ago when my pain was reducing and it was more bearable.

I've been getting better each month and i'm about 98% back to normal so please stick with physio - it just might do the same for you.
Lx

Thanks Sarah and loulou for all your kind words and input I really appreciate it. I'm just so down as I can't even go to work as I'm long haul cabin crew so there is no way I can do 18 hour days physical hard work and my 6 month paid sickness is up this month so in a big mess. I have had a look at all the stretches you have suggested and I've started with them all together with some yoga stretches. I have started walking 4 miles everyday too. Your right about my foot Sarah it definitely isn't right my chiropractor picked up on that ages ago it goes out to one side and when I think of it I have had pain in my foot especially whilst working on the aircraft I wear Bally pumps and my foot has slipped and I have felt pain. It all makes more sense now it just seems crazy that this can cause v. I've had doctors tell me I'm anxious about sex and I need to relax and when I kept saying the pain was coming from the inside they kept telling me it wasn't. I have felt and still do most days like I'm going insane. I am seeing just a regular physio tomorrow who deals with pelvis misalignment and leg issues just to get an insight with what they find before I see this other nhs one next Monday. Will keep you posted. Thanks again for your support you are all my new friends

Loulou thanks for that, I do sometimes feel like I'm droning on a bit! And I'm so pleased you're doing so well!

Kate I would be careful of all the walking until you are back in alignment as it will be stressing structures out while you're not. You can work on your foot once you've been corrected (I have some exercises I know about for this if you need them) or you can get an orthotic for it. I hope your appointment today has gone well and you've found someone who knows how to correct your pelvis. As far as time off work goes I think you might need to prepare yourself for some more because it can take a while to get things stable, you can apply for ESA although the government aren't keen on even people who need it actually being granted it so it's hit and miss these days whether you get it or not, hopefully your employers will be sympathetic and hold your job for you if you can't go back after the 6 months. Or perhaps you'll be lucky and your pelvis will maintain the correct position without much hassle. Let us know how you get on today.

Hi sarah
I have just seen a regular physio today to get another opinion. He said my pelvis is unstable he did some movements to try and get it straight. He thinks it's my pelvis causing my legs to turn in so he's trying to straighten me. He's given me a few exercises to do. He seems really nice he doesn't deal with internal physio but it's better than the women's physio who does nothing. I was hurting after the treatment but I suppose that's to be expected. He says my pelvis is laying forward and squashing the ligament between the pubic bones. I've got my appointment with the nhs women's health physio Monday so going to see how all their theories compare. Think the one on Monday does biofeedback etc but like you say sarah the outside needs to be corrected first. Saw a psychosexual councillors yesterday been waiting months she wasn't very helpful she kept telling me do internal massage I'm hurting inside if I touch there it's like hot raw skin. I'm sick of useless info. You lot on here now so much more because your living with it.

That's how I was too with the hurting skin... But I know I'll get screamed at for my suggestion so im not gonna say anything lol but it goes away