6 months constant pain

I won't scream at you alana. My sore spot is right deep inside my muscle on the right side. I have difficulty reaching it. It's strange when I try to do my pelvic floor drops the sore spot kind of moves up and down if that makes sense.

Perfect sense, I got thrown into a barn when I was 14. I dealt with constant pain (but didn't know about vag pain until I tried tampons/sex). Finally, 2 years ago, I was having something done with a uro because of constant urination he did a pelvic and I screamed and passed out he told me to go to PT. It was the internal kind. She got my muscles relieved it hurt like hell, but I was game for anything. After a while I felt loosened up (you'll know what I'm talking about when you get there) and was able to have sex with little pain. Well my boyfriend and I broke up and I started feeling vag pain worse and worse so I went on a hunt for a doctor who wasn't an idiot lol (and this is the skin part I'm talking about cuz it hurt like crazy upon penetration of ANY kind). I got a vestibulectomy in December. No, this may not be the ONLY thing that is affecting you and it sounds like you have a misalignment, which I also have. However, because the inflamed skin is gone I can do my physical therapy and dilating so much better and easier now, and because that skin is gone, I feel like I don't hold my muscles as tight. This does not mean I don't have pain because I do, but it is nothing what it was like with that skin there. Because I got this, I am able to do internal exercises easier (and by myself which was NOT possible before). I also go for acupuncture which helps immensely. I am not at all suggesting a vestibulectomy, just telling you my story which sounds similar to yours. My acupuncturist actually helps make my body more aligned and that gives me some relief. I have a sore muscle really deep inside too, I get a vibrator (or dilator) and am able to apply pressure to it internally. This causes it to relax at least for me. I understand that everyone is different and all, but I'm really happy with the route I took, my muscles feel better and I'm able to move better. I think for me at least, with the pain there, my body would be like ouch and tighten the muscles worse. So it's just something to consider...

Thanks alana I understand what you are saying. I've never had a problem with penetration or anything I've been having painfree sex for 16 years this right hand side vagina pain occurred since my new partner well ex partner he left me because of this. I do feel like my muscle is stuck its horrific pain no one understands do they unless they have it. I've lay in bed for the past 6 months. You seem to have much better pt in the states

hmm... Yeah then maybe try with a dilator and push on the pain until it releases? I dont know! Have you got x-rays?

Yeah we have xrays but I haven't had any. I've had 2 mri scans which showed nothing. I am getting some Dilators my physio has just prescribed me some

MRI is soft tissue, I'm wondering what your bone structure looks like? Like it maybe you broke something or something?

Never thought of anything like that. Surely I would have to have an accident though. It happened first time had sex with someone new. I know I have a misalignment problem and a muscle knot inside

But you can knock your entire self out of alignment by something stupid and insignificant, like bumping into a wall or switching positions and putting more stress on something.. you never know- especially with me, I'm accident prone lol

I'm not against surgery for some women but the majority aren't what Dr Andrew Goldstein calls suitable candidates. A suitable candidate in his opinion is someone who has primary provoked only pain so if you've had years of painfree sex and have constant pain surgery isn't likely to help, and that's not just my opinion but his too. It's not a huge option here in the uk either due to having to go through the NHS loopholes.

Anyway back to your session Kate, the physio is quite right that the pelvic misalignment is the source of the problem. When you get stuck in anterior rotation on one side it throws that leg out and makes it longer than the other one which gives the brain an issue, how do we get that longer leg to clear the ground when walking? It also weakens the glute medius (helps keep the hip out of internal rotation amongst other things) the glute max (an external rotator of the hip in most fibres amongst other things) and the abdominals which help keep the ilium out of anterior rotation. So the hip and knee rotate inwards and the arch of the foot flattens and the leg clears the ground whilst walking which is how we can all keep walking around with various dysfunctions going on. These compensations work for years often then decompensate and start to cause pain, dysfunction and problems. It's quite normal to feel some pain after a correction, especially if he used a muscle energy technique such as you pushing your knee against his shoulder while he resists, anything that involves contracting these muscles can cause more pain temporarily, a hot bath will help a bit. My physio uses direct corrections on me because of my connective tissue disorder so she literally gets hold of the pelvic bone and pushes it back into position which causes burning all through the pelvic floor and vulvar area on me for a few minutes after it's been done. Anterior rotation is caused by weakness so if you have that on one side it will create pelvic instability and the object is to balance the two sides up again so they both move the same amount and don't get stuck. The other side will likely have posterior rotation and external hip rotation to some degree to compensate for the weak anteriorly and internally rotated side. Don't worry too much about how it might have happened, women are very prone to pelvic misalignment and something as simple as always crossing your right leg over your left can cause these patterns to develop then they show up years later as a problem so don't worry too much about that side of it.

You'll likely end up with glute medius exercises (the clamshell is popular), glute max exercises (usually hip extentions) and practising deep stabiliser work to help support the new position. I would expect a WH physio to know all about pelvic alignment but if she/he doesn't check it make sure you tell them. My physio always starts with a pelvic alignment check on V patients and gets exasperated by those who don't. And don't give up on the next physio being a good one, I literally spent thousands on private physio and none of them had a clue what to do with me then I found my current one on the NHS and she's excellent. Hopefully yours will be too. Don't worry that MRIs don't pick up on the alignment issue, it's there but it's not what doctors are looking at, they look for things like discs out on those scans and ignore a slight misalignment. I can see a definite step in my pubic bone on one of my x-rays but the doctors don't look at it and say it's all fine, a physio or chiro would read it differently though.

Get a hot bath and some rest to help calm down the pelvic area and hopefully you'll feel some difference in your pelvis in a day or two (not the V disappearing as that's not yet been dealt with so don't get down about that) and make sure you keep us posted on your next session with whichever one you stick with.

Thanks sarah I've hot a hot soak and I do feel a bit better. You are so knowledgeable it is really reassuring talking with you. I spent loads too but I'd spend anything to get right. Will keep you posted on how I go with the next physio

I'm well aware of what a suitable candidate is because I was one. I was saying in my opinion and how it worked for ME. I can't comment on anyone else but myself, but hey I figured she'd like to hear what worked for me. I'm glad you're knowledgeable about this, Sarah, but every time I post something that goes against what you think, what you've done, or what you have heard, you attack my opinion, and act as if I'm uneducated. I understand all about this I have been suffering for 6 years, I was happily a candidate for the surgery and I opted for it. The PT, acupuncture and all the other stuff I have been thru are similar to what you all have mentioned, I have experienced similar things, with good results. Maybe it's not what you would do or how you would do it, but this has worked I have had sex (before the surgery) and I have been painfree (agian before the surgery). If this isn't how they do things over in the UK or what you have experienced, than I apologize, but I figured a second opinion couldn't hurt.

If you read the first paragraph of my post again Alana you will see it starts with "I'm not against surgery for some women" which in no way is aimed at you as I know you know the ins and outs of the surgery and that you also know what an ideal candidate is but you'll also notice these threads get alot of reads from people who may not know that and it's for those women who may not know whether they are a suitable candidate or not that I stated that. I have never implied you're uneducated so I don't accept that criticism and I have never aimed any of my opinions at you personally, they are my opinions, the same as you have yours, about treatment options. If I'm involved in a thread and someone says they are going to look into the surgical option I don't force my information about physio on them I leave the thread as that's not an area I know a great deal about and the reason I come on this forum and share the information about pelvic misalignment with anyone here is because I know a fair amount about it and if it helps just one woman to get on the right track to healing then I'm pleased to have been able to help even in a small and distant manner. My opinions and the bit I do know about surgery are not aimed at you personally they are about the surgery nothing else. The part about the UK and the NHS is too longwinded to waste time on but I'm sure the UK women know what I mean about the surgery not being an option in most cases and that's not aimed at you either! That's pretty much all I have to say on the matter as I don't feel this forum is for petty squabbles, we're all here for the same reason and that is we want to recover not get into pointless battles with each other.

I wasn't trying to pick a fight, just saying how it appears whenever you comment about my stuff, no hard feelings, I really dont care to have drama over the internet, just saying I'm aware of my condition, you're aware of yours and that's good. But I was explaining my conidtion not who is suitable, we clearly know she isn't and I was in no way pushing a surgical procedure on someone who wouldn't benefit.

How does your pelvis feel now it's had a couple of days since treatment Kate? Does it feel different or do you think it may have reverted back to a faulty position?

Hi sarah

I'm not sure to be honest. The initial pain subsided and I've not felt too bad but haven't really moved to be honest. Have been doing the exercises he suggested. I've been trying to do the internal massage it is sore and very tight. My left side also feels a bit tender but not like the right. I'm trying to let my pelvic floor drops but it doesn't seem natural it pulls on the right side. I don't know if I'm a clenched or its because of my misalignment. Seeing the other physio Monday at the women's hospital. Do you manage to work? Do you have pain every day? It's getting me so down haven't moved out of bedroom for 5 days feel depressed.

Don't worry too much if it does go back to the original position, it may take repeated corrections along with exercises to get it to stay put, these things develop over time and can take time to rectify. Out of curiosity what exercises did the physio give you? My pelvic floor is very painful on the right side (I also have anterior rotation of that side and all the problems down to the foot that you do) and very tight and strong on the left side but a different kind of pain on the left, not so out and out tender I think is the only way I can describe it. You may have to back off the pelvic floor for a while to get the pelvis aligned and stable first. All I do is occasionally I use dilators if I'm having a bad day for clenching and I tend to do a basic stretch in the bath each night, just pressing down in the centre and out to the left at the moment. Don't worry too much if you have to leave it alone for now, a stable pelvis will let the muscles relax easier.

As for work, I work part time because I have Hypermobility Syndrome which involves dislocations and subluxations on a daily basis so that pretty much rules out full time work at least right now. Are you on any meds for your V? I have constant unprovoked pain and have had for nearly 3 years now but I have found Lyrica helps quite a bit with the burning just not the soreness I feel in the vestibule but I do notice if I can avoid clenching my pelvic floor that soreness isn't as bad. I'm not really typical of a physio patient though and most women find a few months makes a very noticeable difference so don't think you'll take as long with it as me. It really depends on how unstable your pelvis is, if it's mild instability you may find the pelvic floor work begins immediately. If you get a chance to try the biofeedback machine it's very useful for feeling how it is to actually relax the muscles and keep them that way, I was also very curious to see what my resting tone was too just out of geeky interest!

Don't get disheartened, you have a new physio to look forward to and a treatment plan in place so you're being proactive and that's the only way any of us will recover. If your new physio is anything like my WH physio she/he'll be very very knowledgeable about all things pelvic and that instantly makes you feel more hopeful. Ask them about former patients too, my physio has successfully treated lots and for the record another lady with V from pelvic instability started with my physio at the same time as me and she's recovered and long gone so I'm definitely not typical timewise!! According to my physio sacroiliac joint dysfunction and pelvic instability is almost always present when there's vulvar pain and a tight pelvic floor so your new physio should have worked on women with the same issues before. I really hope you find a gem like I have.

Hi Sarah

I went to see the NHS physio yesterday and now i am really upset he did an internal examination and used the biofeedback machine to measure my muscles and he said my muscles ae all normal so all the pain im getting is nerve pain. I havnt stopped crying since i got back as there is nothing they can do. I asked about the misalignment and he thought it was not relevant. I dont understand im so confused. I dont know what to do with myself. Any advice welcome

I just sent you a private message

First of all there are varying degrees of problems with the pelvic floor, it's possible to have slow relaxation and a physio not to pick up on it and the knot the other physio found is real but likely wouldn't affect resting tone if it's on the side of weakness because the muscles on that side will look as though they aren't tight because of the weakness. Physios also vary enormously in how good they are even within specialist areas like Women's Health. Someone on this forum (apologies I've forgotten who) mentioned a physio who works with David Nunns at Nottingham discharged her right on the session where she started to make progress and yet a specialist referred me to Nottingham because of the "excellent physio team" that work there. My physio has done all the same stuff they have but keeps me in the system because she knows I need it so pelvic pain in particular is iffy when it comes to doctors or physios, some know alot and some don't. Did he say what your resting tone was by any chance?

Secondly my physio checks women with vulvar pain for pelvic misalignment because she finds that is almost always present and when the pelvis is realigned, stable and ready she relaxes the pelvic floor off and it works. It is relevant but sadly some physios lack the knowledge to see the connection. I've always found male physios don't understand pelvic instability so getting a man wasn't a great start! Have a read of this:


http://healthyfocuspt.com/wp-content/uploads/2011/12/Vulvar-Pain-Article.pdf

There is definitely a link but with pelvic pain of any kind you often have to fight to get the right therapist.

Thirdly it is possible it's your hip rotators and not the pelvic floor, the obturator internus is often a problem for women with V and it also is an external hip rotator so if your hip is internally rotating it is certainly going to be affected. One area you can press on yourself is the inside of the sit bone which is where it attaches and is commonly painful if the muscle is affected. Or there is a chance your pelvis is trapping a nerve when it's out of position but that's the least likely option. The nerves that exit the sacrum can cause vulvar pain and the skin over the sacrum becomes very painful and stuck to the tissue which requires skin rolling but you'd need to be a bit more stable to release lots.

My advice is get a different physio who isn't blinkered and thinks it can only be pelvic floor or nothing. How anyone can imagine the pelvic bones being out of position and pulling on muscles that connect to it (PF amongst others) isn't related is beyond me. The NHS ones do vary in experience, the first one I was referred to dealt mainly with lax pelvic floors so knew she didn't have the know how to help me so she referred me on so just because one physio isn't good doesn't mean another won't be, he may have more experience with other types of problems and not know even a small delay in relaxation is important and that the hip rotators can often be involved too so get looking for another physio, you will need to get your pelvis aligned and stable so you'll at least need a physio to put you in position as often as necessary so you may as well find another WH physio. Make a list of all the ones that are within your travelling distance and ring them to ask if they specifically have dealt with vulvar pain and pelvic misalignment. I'm totally disregarding the idiot you saw today as the 3 WH physios I've seen, both private and NHS, have all stated there is a connection and in some of the physio threads on this site we have some ladies who have done well with both problems. It's not easy but it's the type of health problem where you need to stand your ground and be prepared to learn alot, even most doctors are under the impression the sacroiliac joint doesn't move so you can't be unstable despite the fact it's been proven it does indeed move.

Dry your tears, eat some chocolate or drink a glass of wine or something along those lines and then get writing out a list of physios to call tomorrow to get another opinion.

Thanks Sarah for your support. He didnt tell me my resting tone the squiggles on the screen looked pretty constant. I dont really understand the computer thing to be honest. He stuck a probe in me and connected me up. Does this just measure if our muscles are tight or loose? Do your measure tight?

Ive had a look for another physio. I can find a pelvic floor physio from the pelvic physiotherapy website. The nearest is derbyshire im going to call her. I dont get how 2 pyhsios can say something so different. He really hurt me when he examoned me he really pressed his fingers in really hard he was really rough.

Im confused about the pelvic misalignment bcos surely that could be pressing on a nerve or like you said my hip with it beginning inward. Im still waiting for this biomechanical podietrist doctor for my appointment.

What im worried about most is pudendal entrapment/neuralagia. I asked him yesterday but he just said no you havnt got that whereas the other physio said it was a possibility. My head is mashed. I feel deflated. This one from yesterday wants me to have this probe stimulation to see if that retrains my nerves. I really thought it was my muscles. People with v seem to have pain in the vulvar and vestibule when it is nerve fibre problems. My pain is deep in my vagina in the levator ani muscle right in the crease. Need a proper doctor to listen and a proper physio.

I hope you managed to speak to another physio today and have arranged for another opinion. The biofeedback machine tests how tight and unstable the pelvic floor is and he should have got you to do some fast contractions and slow contractions to see how strong the muscles are plus how well you relax them after a contraction. Women with V usually have trouble relaxing them quick enough and have a loss of slow twitch activity which is the part used for slow contractions held for a period of time. If he didn't get you to do contractions he hasn't done it properly. Again I'm not a typical patient to compare to as my joint problem means anything tight on me is ridiculously tight, when I went to the first physio my resting tone was 20 and spiked all the way up to 29 while I was talking to her and it should be around the 2 mark. Mine is actually the tightest pelvic floor she'd seen in over 3 decades of being in women's health and I managed to get to 12-14 over a few months but for various reasons couldn't continue to see her so I'm probably back at the 20 mark again now. Nobody who is continent will be 0 and that physio told me women can have problems at around the 4 mark so it would be interesting to know your resting tone.

The reason I say the pelvic misalignment is unlikely to trap a nerve is because anterior rotation is part of the gait cycle so it's a natural movement so unlike an upslip for example which is always caused by trauma and isn't a natural movement it isn't likely to be trapping a nerve because the pelvis should move in that plane. The problem is obviously being stuck in that position but the nerves should be well out of the way for a natural movement. It is possible for your external hip rotators to be trapping a nerve however, they will definitely be tight in an effort to prevent more internal rotation of the hip so that's a distinct possibility. Don't get hung up about the pudendal nerve either, V isn't usually caused by that although it can be but realigning and releasing tight muscles would help that anyway, a decent physio should be able to confirm if it's a problem by touching the nerve to see if it elicits pain. My physio fully intends to do that with me once we get to the releasing stage but she's confident physio can help even if that is the case so don't worry about it too much.

He doesn't sound very competent to me, he shouldn't have been rough enough to really hurt you and he should have discussed exactly what he was seeing on the screen with you. I wouldn't rate a physio like that and do hope you try another. The area you describe as being painful would fit the external hip rotators in my opinion and a good physio will be able to check that properly for you. It might be a good idea to get an arch support for that foot too so you have more chance of staying aligned. Do let me know how you got on today and if you are scheduled to get another opinion. Most of all don't give up, I've been fighting pelvic pain for 8 and a half years now and sometimes it's difficult to find someone who knows enough to help you but if you persevere you will find that someone.

Hi Kate - don't give up hope. From what you've said about all your vvd symptoms and hip/leg problems it sounds like the physio route could be of real help to you.

I had a similar experience with the biofeedback machine. It didn't really show any abnormality in my pelvic floor muscles only maybe slightly slow to relax after a contraction, but the physio said it was still within 'normal' range. I must admit, although she was very kind and gentle i didn't feel confident about her skills and therefore her assessment (she didn't even spot my misaligned pelvis!) and as its turned out realignment of my pelvis via regular chiro visits, yoga and pilates HAS definitely sorted my vvd. So I think my vvd was something to do with my pelvis even tho the biofeedback said my pelvic floor was practically normal. As Sarah indicates there's a lot more going on in that area than simply the pelvic floor - for example I once found a trigger point in my psoas muscle which when I pressed it caused a dull stabbing pain in my vulva.

And definitely 'shop around' for a good physio as they do vary. If i hadn't managed to find a good chiro who helped me I would definitely have asked to see a different physio.

Fingers crossed the physio in Derbyshire will be more competent and gentle.

Hello girls!
Sorry about delay in replying had a really bad week physically and emotionally. I've been to see another physio today. She examined md internally and thinks I have some spasms in my right muscles. She was unable to get the probe in to do biofeedback it was just too painful. She identified my pelvis misalignment and internally rotating him. She didn't seem to certain about the pudendal nerve she said I can't rule it out completely. She has suggested to start with realising my pelvis and some acupuncture because the pain is too tender inside to do any stretches.

I'm so confused with it all. I'm hoping next time I can get the probe in. She said my muscles may not have been in spasm when I saw the last physio that's could be why they showed normal. My head is mashed with it.

Is your pain worse during your period? Mine seems to run in cycles. I'm under so much stress and upset and I know this is making me worse. I wish my ex could have just stood by me I feel so alone.

The physio said the misalignment might be the direct cause but will be putting pressure on my pelvic floor. What do you think?

Hi Kate, I'm pretty sure somewhere in my essay like posts I mentioned any muscles that attach directly to the pelvis have to compensate because of the bones being stuck out of alignment, it is something my physio often finds to be the direct cause of V. The pudendal nerve issue isn't worth worrying about at the moment, you need to focus on getting your pelvis aligned and stable. The fact this physio could see misalignment means your previous correction didn't hold (or wasn't a proper correction) so you'll need some exercises to make it stay put before you can deal with the internal problems. She sounds much better than the previous 2 physios you've seen so worth a go for treatment.

Don't fret about the probe either, if it won't go in comfortably it's not something you need to rush now you have alignment issues to deal with first. I used to find the probe really uncomfortable going in but agony coming out because it would get wedged behind my super tight muscles and it always made me worse for a few days after so don't let that bother you if it's not going to be comfortable. Muscles tend to react to emotions too so the more stressed we get the tighter they get which is why it's better to focus energy on what needs to be done immediately instead of worrying about the longer term. My ex left me because of health issues, my V was the final nail in the coffin, after 13 years together but sometimes that feels like a blessing because I can focus on my physio stuff without him demanding sex or my attention.

My V actually gets a bit better right before a period and I don't clench my pelvic floor as much at that time either, could be because of the hormone relaxin that's released at that time or perhaps because it makes my SI pain worse so my brain focuses on that instead. All you need to do right now is concentrate on getting your pelvis aligned and stable before going to the next stage. It's a good thing you've found a physio who actually seems to grasp the problems and how they are connected and if you want to talk exercises feel free. Did she realign you? And if so does it feel different to the last attempt made at realigning?

Hi sarah

I'm going green back to her Thursday to start the aligning and also acupuncture. See how it goes I'm at my wits end with it all. Want to be able to go to work and have some normality back. That's horrible your partner left after all those years. I was only with mine for a year but I'm missing him so much think I only feel that way though because of the very otherwise I would just get on with it. Been to my councillors session today total waste of time she doesn't help with the problems I have in my head and how I feel.

I've got an appointment tomorrow at the pain clinic shouldn't have had it until April but been brought forward not really sure what it will be about. Will let you know how it goes.