6 months constant pain

Hi Kate

You are not alone. We are here to listen and support as much as we can. The fact that you are stressed is very clear from your posts and I feel like I want to tell you to please slow down and breathe - does that make sense? Resolving your vvd is going to take time but your pain will reduce if you stick with it (as i said before im sure in your case that the physio route can help your symptoms).

I agree with Sarah - this physio sounds better. So trust her to sort your pelvis out as a first step. I totally understand where you are coming from in wanting to know and sort everything up front e.g understanding what your PF muscle tension is doing, whether the pudendal nerve is involved, wanting to get back to work etc - I'm a bit of a control freak and have researched/analysed/questioned myself into a frenzy over this damn vvd - what i've learnt is it doesn't help! One step at a time. Give your mind a break from the other stuff and tell yourself that you're going to focus on the pelvic realignment for now - pour your energies into that. The other stuff can come later. (I hope that doesn't sound patronising - I KNOW from experience how hard it is to do this but it does help you feel more in control)

It's great you're trying acupuncture too - i found this really helpful in the early days to help manage my pain. Really hope it helps you too.
x

Hi loulou

Yeah your right I am stressing out ive got a broken heart too which is not helping. I know it's going take time just want be on the right path. I am too a bit of a control freak I like everything in order. I'm hoping on Thursday she will crack on with the alignment. My mum is really ill too which worries me. I need to distress and focus on getting better.

I definitely feel the alignment is connected as it is very wonky. I think now about periods in the past when after sex I have been burning and sore but because it only last 24 hours I ignored it and sex was not very frequent with my ex of 9 years and bcos my recent ex sex was very frequent and longer etc I think it has brought it out to the surface.

I'm just finding it so difficult the way my ex treated me I really thought he lived me and I'm finding that as hard to accept. All my friends are married and either have babies or are pregnant which I'm finding hard as it hurts.

You and sarah are so kind and your support is appreciated

I agree with Loulou and think you need to focus on one step at a time. It is difficult but it can't be rushed. I'm also a control freak and over the 8 and a half years of my pelvic pain hell I've lost almost every aspect of my life but I'm determined to get back on track and not end up in a wheelchair as so many of the people I know online with Hypermobility Syndrome have done. I had provoked only pain with initial penetration for a while before it became constant and diffuse and I wish I hadn't ignored it but it didn't bother me very much because it was very fleeting, big mistake to leave it! Pelvic realignment can take time and will definitely take alot of effort, I've had to learn to walk differently, sit differently for the brief time each day I sit, breathe differently and then there's all the trigger point work each day and exercises but you find a routine and get on with it. You won't take as long as me to get anywhere either and you at least sound like you have a decent physio which I didn't until I ended up at Women's Health.

Deep breathing is useful for destressing and relaxing the pelvic floor but check with your physio if your pelvis is stable enough to do that at this point, it may be you need to do a fair amount of work on the other muscles first. Forget the ex, if he left then he left and you now need to put you first and concentrate your energy on getting yourself well again. I was devastated about my ex in the beginning and wondered how I'd get through it but I just decided to spend time on my physio and forget about him. Like you all my friends are getting married, having kids, getting promoted and buying bigger houses etc but I try not to think about it too much and put maximum effort into what I'm doing. I'm interested to hear what the pain clinic say, I've been stubbornly refusing to go to one for years but I'm at the stage where I'm starting to reconsider. I do take Lyrica and Amitriptyline and get a bit of relief from the Lyrica but the Ami was actually given to me for sleep issues and doesn't help my pain at all. Some women do get relief from it however so it's always a shot if it's offered.

Really try to calm down and relax a bit to give your muscles a chance to soften, there will be all manner of compensations going on and possibly alot of gripping subconsciously with various muscles during normal tasks and the more you stress out the more you'll do it. I'm very interested in hearing about your sessions too so do keep us posted!

Hi everyone

I have been to the pain clinic today and saw drive Mellor he is one if the pudendal nerve specialists in the UK. He examined me and said I have pudendal neuropathy caused from years of constipation. I feel distraught he said he can give me nerve block injections but they might not work. He said I will have it forever. I've sobbed all day.

He said my pelvic issues are nothing to do with it At all. I'm totally confused now and very depressed.

Kate honey you are remarkably good at winding yourself up into a frenzy! Firstly you are experiencing a typical pelvic pain patients route through the NHS with varying competency in physios and doctors who have no understanding of pelvic instability. Secondly you already know if the pelvis is misaligned some muscles get tight and some get stretched and weak so they can contribute to trapping nerves so pelvic alignment is very relevant. Thirdly if you spend some time on pudendal nerve sites you will find lots of people pain free from physiotherapy for the pelvic floor etc with no blocks or surgery necessary. Fourthly hip rotators can irritate the pudendal nerve so your hip alignment is also relevant. Lastly it isn't a definite pudendal nerve problem so you have got yourself into a tizz over nothing, your situation hasn't changed and you still have to sort out your pelvis to see if it cures the vulvar pain.

I've had a chat with my physio about the PN and she advised me to avoid nerve blocks right now because they would interfere with what she's going to do so you need to ask your physio about where she stands on them as you can always have them at a later date. My physio also told me once we get stable enough for internal work she's going to palpate my PN to see if it elicits pain but she's also assured me normalising the alignment and muscles of the pelvis would take pressure off the nerve in most cases so I'm not worrying about that bridge until we come to it and neither should you. Doctors know jack shit about pelvic alignment issues and I've been to countless GPs, an Orthopedic consultant, a Rheumatologist, a Neurologist, had loads of scans etc and out of all that I found 1 solitary GP and the Rheumatologist were the only ones who understood the problem and yet about 12 physios diagnosed me with pelvic instability within minutes of examining me, it's all down to what area they are taught about and doctors aren't usually well informed about alignment and muscle imbalances. Clearly if the bones have moved the muscles have to adapt and not always in a good way so it's so relelvant he ought to be heading off for a course to teach him the facts.

I get quite annoyed by all the doctors and their stupidity because of so many years of it but as a pelvic pain patient you are always going to meet this kind of resisitance so you need to grow a thicker skin and not let their ignorance worry you so much. I can't tell you if you should have the nerve blocks or not but I strongly advise you to talk to the physio before you do and to at least give physio a try whether you have the blocks done or not. Lots of ladies have had PN blocks for V and got no help from it, just search for the word pudendal on this site and you'll see what I mean but some of them have gone on to recover and V is rarely caused by PN problems. So as before chocolate/wine/cigarettes/hot bath whatever calms you down and wait and see what your physio thinks before getting near hysterical!

Hi Kate

I think your PN specialist sounds pretty narrow-minded and brutal - I understand he might not want to give you false hope but honestly!

I also don't know whether he's right or not (but lets not be too swayed or over-awed by the 'specialist' label - many women here have experienced poor/incompetent treatment at the hands of so-called specialists). What I do know, from what you've told us, is that you definitely have some 'structural issues' (misaligned pelvis, rotated hip and foot twisted out - if i remember correctly) and it seems logical that those issues will be causing myofascial and nerve issues/pain. So getting your 'structural' issues sorted would be a great help to you. IF your PN is involved (did he specifically palpate the nerve to identify that?) it seems logical to me that the structural issues could be the cause (perhaps of the constipation too). So in my simplistic non-expert view whichever way you look at it sorting the structural issues would help. Maybe i'm missing something? Can PN issues stand alone? You did say previously that an MRi you had showed no PN entrapment which is a positive so presumably he's saying the pressure of constipation (full bowel, straining to go) has somehow put pressure on your PN? Is it also possible that your structural issues (sorry just realised that makes you sound like a building!) might also have caused the constipation if everything is twisted and not in the right place?

So I agree with Sarah - have a chat with your physio before you make any decisions about PN nerve blocks. If you're feeling confused (and I can understand why) it's a sure sign that you need more information. Talk to your physio, talk to the PN specialist again if needs be (he obviously upset you so you might not have asked all the questions you could have - or maybe you could see someone else at the pain clinic).

Stay strong.
x
PS I appreciate that my view here has a bias (just like your PN specialist!) because sorting out MY structural issue has helped me.

I must reply to something said about us American's getting better treatment. I have to agree. But alas it will not last. We have a socialist president now and is going forward to changing our wonderful medical system which has grown so fiercely via capitalism into socialized medicine. This is something we have never have are fighting tooth a nail against it. Capitalism is the reason we are so far ahead of many other countries in our care and inventions. So, people will not be having to come here for good medical care especially people from Canada that come here often because it takes so long to get care especially surgery and cancer treatments in Canada due to their socialized medicine. I am not trying to insult anyone's country or medical care. I am just telling you we will no longer have the greatest medical advancements in history once this socialist president gets his way. I wonder where people will go then?

Hi girls
Sorry haven't replied for a while I've been really down and depressed. Saw my physio today told him about the pn specialist and he said nerve blocks should be my last option. Started with some internal electrical stimulation therapy today but after 10 minutes could not bear it hurt like he'll. He did some external prodding and I have about 20 external trigger points from my abdomen right down to virtually my knee. The area around the inner hip and glutal area is very painful. He seemed shocked too that I had so many. Had acupuncture in the area and he did some skin rolling which was painful. All the trigger points are right sided the same as my vagina pain. I'm praying this could be the underlying issue. I'm still seeing my private physio lady too who is on the same line of treatment as my male nhs physio. He originally thought my alignment issues wernt the problem but now his train of thought seems to have changed. I'm still upset about the pn specialist and I'm terrified incase decompression surgery is my last resort. I'm trying stay positive just so hard when I've lost everything and don't have any vision of my future anymore.u

Good to have you back kate and I'm glad the physio told you to hold off on the nerve blocks for now, I really must ask my physio why she said the same as it's slipped my mind but obviously there is a valid reason as your physio agrees. I'm head to toe trigger points so I can relate to the trigger point pain! When you can't stay aligned they are likely to keep reappearing so it pays to work on them between sessions too. They can also cause a wide array of problems so be patient and try to think positively, it's a good thing you have found a possible cause and can work on something. I'm very interested in the lady physio and her approach so do keep us posted about your sessions. Don't waste energy worrying about the decompression surgery, it's not a very likely outcome to be honest and I think worrying about it now won't help you one bit, you need to focus on what you need to do in between physio sessions and put everything else out of your mind so you can concentrate. I will say though it's probably not the right time to keep trying to remove that knot in the pelvic floor, I don't think it will go until you are aligned and stable and pressing it will probably just irritate it further, I have a very knotty pelvic floor on the right side and I leave it well alone right now because of the lack of stability. Just stay focused and work on what you know needs work and don't depress yourself worrying about scenarios that are very unlikely to happen. Keep us posted.

Hi Girls

Sorry its been a little while since ive been on here. Just to keep you updated. Im still having physio twice a week. My physio has found a true leg length discrepancy and im off to see an orthopedic surgeon on wednesday as my physio thinks I need to have this looked at. He also suspects i have a curve in my spine which is a hereditary condition in my family. He has been working on my sacro illiac joint to try and correct it, its still not working correctly on my right. My lady physio is also treating this and my twisted pelvis. Im still having dry needling to release the million trigger points I have. Im hoping this orthopedic surgeon will have some answers. I truely believe this is a mechanical problem with my structure. Can I ask what your other frame sizes are like? Im really tiny and this seems to be a common theme with v. My pain seemed to ease the last 2 weeks however I have had electric shock feelings high up in my vagina the last 2 days which are horrible. I managed to get hold of the report from the pain doctor he stated my internal pain was mainly over the Obturator internus muscle which is very deep inside my vagina very close to the hip. I will keep you posted after my appointment on wednesday.

Hi Kate, just out of curiosity do both physios agree it's a true LLD? As you know the pelvis being out of position gives a functional LLD and I'm just wondering if they are both in agreement about it. I hope the orthopod can shed some light on it, if it's a true LLD it will mean a heel lift on one side but if it's not the heel lift will make matters worse so if one physio hasn't agreed this is the case I'd ask them to check for you. The scoliosis could also be a factor in the pelvic issues and could just be from muscles pulling, I have a scoliosis when I'm out of alignment which responds to being corrected and treating the pulling muscles but obviously I can't hold a correction for long so it's right back in as soon as my SI is out! The obturator internus is frequently implicated with V, both mine are hellish so that makes sense. Are you able to maintain a correction for long yet?

Hi sarah
Yes both physios agree on the leg discrepancy however I won't rely just on those I want xrays to know for sure I'm hoping the orthopaedic doctor will shed some light on this. My alignment hoods for a while but it seems to go back by my next appointments. I just wish someone would give me an accurate diagnosis it seems like so many things that it could be. I'm praying this orthopaedic doctor will be able to work out what's wrong. Will keep you posted. How's your progress?

I'm glad you've checked with both of them, if it is that a heel lift will help balance it out and likely help you hold a correction longer too. I've recently been losing alignment with a clunk quite often instead of it sneaking out and my physio has said it's actually a good thing because it shows the muscles are starting to try finally. I'm still out of alignment at least as often as I'm in however and no changes on the pain front yet. I'm considering prolo too, I'm intending to discuss it with my physio on Friday and if she's on board I'm going to book a consultation and see what the Dr thinks. There's no guarantees it will work but if it did I'd finally be stable enough to have some pelvic floor work done. I'll let you know on that front. I think at the moment my knee is upsetting my pelvis though, my left knee has become very unstable and painful and I'm permanently on crutches which SI joints don't like. Let me know how your appointment goes, and don't be too worried if the orthopod doesn't believe SI joints can move because that's what most of them seem to believe!

Hi Kate - really pleased to hear that your overall pain has lessened over the last 2 weeks! Hopefully that's a sign that the physio is working. But you also mentioned that you've been getting electric shock type pains. That happened to me too, not in the early days - only when my overall pain levels started to get better. I had the pains in a number of places which was a bit wierd - some were where i would have expected pain due to having vvd (vagina, clitoris) but other times the pains were in areas i didn't connect directly with vvd (just above my pubic bone, just below my belly button, in the area of my ovaries) - i now know that myofascial pain and trigger points mean that it CAN all be related to vvd. In my mind I thought it was a sign of things getting better (ie brief pain in specific small areas rather than a constant pain over a more diffuse area). My chiro also said that more localised rather than generalised pain (in relation to my pelvic misalignment and lower back pain) was a good sign. I also interpreted those stabby pains as my nerves trying to get back to normal - like they were having a few misfires before getting it right and not being constantly ON! And I HAVE got better so if my intuition was right i hope its the same for you - another sign that you're on the right track.

And you also asked about frame size - i'm Ms Average i think - 5'6 tall, size 12 on top, size 14 on bottom.

And Sarah - its great that you too are getting some progress with 'clunks'! Hope you can get off the crutches soon - they're probably not doing your shoulders and upper back any good either so make sure they get some tlc too. Not sure if you've mentioned/answered this before but are you able to do Pilates to strengthen muscles to hold alignments in place? Same question for you Kate.

Final thing - I agree that SI joints can move. My problem was the opposite to your hypermobility tho Sarah, my chiro told me my right SI joint got stuck and that's what caused my pelvic misalignment.

Let us know how you both get on with your appointments. And stay strong girls!
Lxx

Hi Loulou nice to hear from you! I've approached 3 different pilates instructors over the last few years and all of them turned me down because I'm too bad for pilates right now apparently, my joint problem gives me really bad tremors which none of them were keen on although one of them did do extensive muscle testing on me and gave me a few basic exercises to do with a physio but she agreed with the other two that I'm at physio stage right now. Shame because I'd love to do some. You're not wrong about the crutches affecting my upper back and shoulders, my right shoulder dislocates when it feels like it so I live in fear of that happening and confining me to the house but so far it's holding its own even if it is very sore. My physio has altered my exercises slightly but it's too soon to tell if they will work or not.

I forgot to answer the frame size, usually I'm a size 10 but the Pregabalin has caused me to gain weight so I'm now a size 12 and hating it! I'. 5 foot 4 so fairly average too. I will say though that 10 years spent working in offices hasn't done me any favours, before that I was really active so my muscles probably held my joints together as opposed to ligaments but a decade of sitting on my ass hasn't helped my muscles one bit!! I can also attribute some imbalances to a particular thing such as which leg I always crossed over the other (right over left) and the rotation that creates up the chain. Also alot of my worst areas are joints I've previously injured, not all of them but most so that features too. It's a lifetime of repetitive movements that set us up for these postural problems and then it only takes something minor to push everything too far. Anyway, long may your good health continue Loulou and I'm a bit jealous about your too stiff joints!!

Hi Sarah

The good thing is that you know what's causing your pain (me looking for the silver lining to your painful cloud!) - sounds like its just gonna take time but you WILL get there cos you know what needs to be done to sort it and you're doing it. And definitely do the pilates as soon as you're able to - its been a major factor in my recovery.

I can't believe you've been dealing with your issues for so long and still have a sense of humour - good for you! I admire your strength.

And I'm hoping that one day you too will experience the 'joy' of stiff joints! (....yep that's got to be the strangest thing i've ever wished for someone lol!)

Lx

I hope your wish of stiff joints comes true! It must be bliss having to stretch and actually getting relief from it instead of being able to do every yoga pose known to man with no preparation!! Onwards and upwards..!

Hi girls
Just Need update of how I am getting on with my physio. I am still seeing the nhs man physio had about 8 sessions and my private lady physio. Over the last 3 weeks my pain has decreased a lot it has increased just around my period. I don't know if this is because of the physio or acupuncture or both. I had my resting tone taken last week which was around 5 which has I could get down to 3 when I tried to fully relax. Does this prove my muscles Are tight or in spasm I'm still a bit unsure. I'm trying these breathing exercises to try and relax my pelvic floor. Havnt felt Any burning pain for a while just this achy stab. Some days I've been almost painfree. I've began internal trigger pointing now too it hurts like he'll and was expecting a massive flare afterwards but only had pain for the next day or so. I'm also seeing a podiatrist next week to see if I do need foot soles and if this has contributed to my pelvic misalignment. Keep you posted.

It sounds like it's going really well Kate and you're well on your way to recovery, aren't you glad you didn't give up now when all the doctors had no understanding of it and left you in tears? I'm really pleased for you and keep us all posted.

Kate that's brilliant news! I'm so pleased that you're getting some almost painfree days, they really help to keep you going as they let you know you're on the right track.

Don't get disheartened if you have ups and downs with the pain along the way as you progress with your physio. I've been graphing my pain/discomfort levels (nerd alert!) and its not been a nice neat linear decrease - looks like a mountain range - but the overall trend has eventually headed down to zero and i'm practically free of all pain and discomfort now. So don't let the odd flare or twinge put you off or make you think its not working or you're going backwards. And i think its not unusual for your period to be a worse time cos of all the normal internal cramping that goes on with the mechanics of having a period.

Also it sounds like your pain is changing (burning to achey stab) I would say this is good as it suggests the pain is localising as well as reducing. This shows your treatment is working and will probably mean your physio can get even more focussed on specific trouble spots as you progress.

What does your physio say about a resting tone of 3 - 5? If i remember correctly mine said a normal resting tone should be under 2. Assuming i've remembered correctly and we're using the same scale, then sounds like you still have some tension there but if you can already get it from 5 to 3 through consciously relaxing your PF then you just gotta keep practising and doing those breathing and relaxation exercises - they work!

Stay strong Kate and let us know how you get on.

You're right Loulou I was told 2 or under by a physio too. You'll get there Kate, alot faster than me with my resting tone of 20 I would guess!!

Thanks for your support girls. My pain has gone up again the last few days but trying to stay positive and do my breathing exercises. Loulou I'm so pleased your pain free that's amazing and gives me hope.

Hi girls
Just an update on my physiotherapy. I'm still seeing the male physio on the nhs and I have found an amazing one who knows a lot about the pudendal nerve. She has managed to locate the exact spot where the pain and irritation is coming from. I have quite a few trigger points along the right side of my vaginal wall however the main trigger point where the pain is excruciating is between the obturator interus muscle and internal abductor muscle. I am having two sessions a week from her and one from my male physio so I'm praying three a week as painful as the sessions are will help get me right. My muscles have definitely relaxed over last few weeks and I have had some pain free days. I am seeing a podiatrist on Wed who deals with lower limb dysfunctions. I believe truly this is all down to my leg whether it be my hip or foot.
Sarah hope your getting some progress always think of you. Hope one day there will be a greater awareness of the causes of V.

I'm so pleased for you Kate, the obturator internus is mentioned quite alot in physio articles about vulvar pain, I know mine are both a mess too. Your painfree days sound like heaven and you are right to get that foot sorted out too. I'm currently worse after a huge flare up of my SI joint which has sent my PF even loopier so my V is worse right now too but still soldiering on, and still planning to try prolotherapy to tighten that joint up too. Keep giving us these updates they cheer me up to know someone is getting results and recovering!

Hi girls

Kate - im so pleased that you're still making progress and having some pain free days! I'm keeping my fingers crossed that the physio continues to work for you and brings you more relief. Its not a quick fix tho so stick with it.

Hi Sarah - my heart goes out to you, im keeping my fingers crossed for you too (left hand for Kate and right hand for you lol) that the prolotherapy works. Does your SI flare up mean the steroid injections didn't work? or did they cause it? I know you've probably tried everything but just in case, i find slapping on some Biofreeze helps calm my SI joint if it flares up.

Stay strong girls.
xx