After the events of the last few weeks, taking into account my medical history as well, I tick every box for the above condition,
Has anyone been diagnosed with this and how do you cope with it alongside everything else?
My Urologist is due to call at some point this week after the A&E Consultant locally contacted UCLH due to me losing all feeling in the bladder and complaining of chronic pain in all the areas this condition covers.
It explains why it's been so painful to sit down for the last few years but as I'm in chronic pain when standing it's likely that's a different part of the spine with nerve damage.
Any support it acknowledgment would be really appreciated as I'm currently at a loss with everything that's been going on.
Xx
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LoopyLou72
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I'm so sorry Lou - not heard of this and can't offer any advice. Just wanted to say I'm sorry to hear of your diagnosis- the positive is now they know what's wrong, hopefully they'll be able to put a treatment plan in place for you. Know it's dufficult as it sounds so painful and uncomfortable, but maybe you could try and think about the positives and the future now. Warm hugs and I wish you well.
Nikki xx
Hi Loopylou, did you have tests and now have a confirmed diagnosis?
Diagnosis hasn't yet been confirmed but A&E have discussed the case with UCLH and I've recieved the first appointment for the scans. It's made the current bowel and bladder conditions a lot worse and all my symptoms fit the criteria for diagnosis. I realise that the diagnosis needs to be confirmed first but it would be helpful to know of others experiences. X
Fingers crossed you get some definitive answers at last. It will be interesting to see if anyone else has this problem, it may help others who are struggling. Good luck and let us know. x
UCLH would only request an ultrasound scan of the kidneys, urethra and bladder, which has been done but I can't see that that would show anything nerve related. I really don't think anyone is taking the difficulties seriously. I've got a telephone consultation on the 26th May with Urology and a Hysteroscopy that afternoon. I'm seeing the specialist nurse for Rheumatology on the 24th and have produced a health record document of my own which I will be sharing with the consultants as I'm hoping it will give them an understanding of what is going on. I've got Gastro on the 10th June and I'm desperately hoping they will all start speaking to each other. Since the nerve issues my bladder isn't retaining as much, which is a good thing, and I've got some feeling back. Sitting is not comfortable though and they're yet to diagnose what exactly has dropped into the vaginal canal. I can't return to work yet, if ever, but am doing my best to take charge of all this. I hope you are well? Xx
It sounds like you need to see a Neurologist who specializes in EDS.
I know it's terribly frustrating and you seem to be passed from pillar to post but it does look as if some progress is being made with the tests and treatments you have had and will be having.
Taking your own records is always a good idea. I always ask for a copy of the letter every specialist I see sends to my doctor, then I give a copy to the next specialist I see and so on, so they all have the same info. I usually put together a brief bullet point half page of what's happened since I saw a particular specialist last and a longer further explanation sheet if they ask questions or there are more things I would like to say.
I find they seem more likely to read a bullet point sheet than reams of notes.
I hope the hysteroscopy goes well. I had one many years ago.
Thank you for all your advice. I'm amending the health record specifically for doctors as the one I did needed to be thorough for work as they have little understanding of the conditions I have.
I was told I don't need a neurologist but will mention that to the rheumatologist. They might be able to refer on.
I've got pudendal neuralgia and hypermobile joints. My nerve pain started following surgery for a rectoceole and perineal repair. Im struggling to have the pudendal neuralgia diagnosed by a pelvic pain specialist but have most of the symptoms it describes. My pain consultant offered me a pudendal nerve block but my bowel specialist has said he has seen many cases where you lose not only sensation but mechanical action for the bowel and so warned me away from having the nerve block. I'm currently waiting to be referred to a tertiary doctor specialist in pelvic pain in London. My surrey hospital consultant has discharged me saying he has reached the end of his knowledge and said my gp needs to refer me to pelvic pain specialist in London. My gp today has said my consultant is the only one that can refer me. I'm being sent around in circles. So far my experience has only been that it is a long and painful road to finding answers. I have found googling pudendal neuralgia has helped give me some answers where the doctors haven't come up with some.
Your consultant should have known that it would be a consultant only referral especially if outside of your normal area. That's very bad of them as it makes the process to diagnosis so much longer.
It does seem that doctors are disinterested in the condition but they're not experiencing the symptoms so will never understand the pain caused.
I hope the London referral is swift once completed and that diagnosis and treatment is quick too.
I'm having surgery on the 27th with the Urologist so I'm hopeful they will look into the nerves as promised.
Look after yourself and continue to bug them re the referral if you don't hear anything.
I had a Bilateral Pudendal Nerve Block. It offered some relief. I don't feel nauseated every day from pain as I did prior to the block. The day after the block was not pleasant but at least the pain now is somewhat tolerable. Going in for 2cnd nerve block in a week. I didn't even realize I was having problems with two nerves.
My pain started following an anal fistula surgery. When the anesthesia wore off I was in tremendous pain. It was unbearable. The pain grew for a 1 1/2 years. I cannot sit. I stand, kneel, or lie down. I only sit when I drive and I get constant shocks. I take one day at a time right now. I went to many doctors, chiropractor, acupuncture, sports and fitness, and physiotherapists for help. Currently, I am being treated at the pelvic clinic at Mass General in Boston. Over the last two months I have constipated surgery. I cannot imagine living with this for much longer.
I really hope the 2nd nerve block offers you some more relief.
I know that there are many people that have given up all hope and there seems to be little understanding of what pain does to people as well as the difficulty in being believed and diagnosed in the first place.
I wish you all the best and hope this nerve block will lead to you getting some normality back to life and to some pain relief. Xx
Thank you! The only way I have been able to deal with the pain is to somehow put it out of my mind. I compartmentalize the pain and focus on something else. I suppose like meditation. I do this for my kids. I don't want them to see me as an angry person. But as we all know living with this horrible disease the pain builds especially towards the evenings and I have kicked a few walls and continue to swear under my breath. No one understands what this type of pain is until they live it.
I am new to this forum but I have read quite a few of your stories. You are all a blessing to me. There are a couple of doctors and a nurse practitioner that have listened to my story and understand the situation. I decided a few months ago I would take charge of my situation. This happened to me. I did nothing wrong to deserve this. If I get spoken down to by any physician or other I will not go back. I even went to a lawyer to file for divorce so my husband understood what I am faced with. At this point I need to be lifted up. After wailing in the office during a nerve block my husband finally understood the level of pain.
When I look around and see so many people addicted to drugs I get it. I had rebound effect for Valium. I only took 2.5 mg twice. My husband and I realized at that point the drugs were not a solution for me. I went on a lowering blood pressure medicine for a month and it made my heart flutter and I felt ill. So, I decided on ice and lying down as much as possible(only sit to drive) and I wait for the second block. When I can't take it anymore I use Baclofen suppositories.
The following are my symptoms: muscle spasms(vaginal and rectal), burning, twisting, pinching, stabbing,shocks, a ball in the perineum on right side, itching, unable to walk up an incline off and on, a feeling of heaviness in my vagina( like a heavy load of bricks), lots of bloating(shocks all through my abdomen after 1st block), burning pain over left ankle, radiating burning pain down thighs, hips, and lower back.
Now I am trying to figure out did the nerve get damaged first or did the muscles and pelvis restrict the nerve. Because my pelvis wants to twist to the right. So, is this the nerve causing the muscles to do this. My physiotherapist has me lying down ten minutes a day on a block for alignment along with a forward roll stretch.
I really feel for you as what you explain must be torturous. Add that pain to the pain of EDS and it's no wonder you don't lose it more often.
Pain meds don't work for me at all either. I recently tried Oxycodone but instead of slow releasing over the 12hr period I ended up with the full symptoms of overdose within 2hrs. I was beside myself. No Odin relief whatsoever but heart rate was horrendously low, as was my blood pressure which is usually high and managed with medication, but trying to manage the feeling I was going to pass out whilst my bladder was screaming for the toilet really wasn't pleasant. I've now decided enough is enough and won't be trialling anymore pain relief.
Your suptoms of PN are very much there permanently. I'm at a loss with what's going on. I still have the brick and heavy feeling, sitting normally I can only manage briefly but find comfort in reclining slightly and putting my feet up near my bottom. The stabbing pains in the whole perennial area are on and off but can be very sharp and sudden at times making me wince. The pain is particularly bad in the general pelvic area including the groin. I'm still unsure how much of the pelvic pain is due to other things like the SI joints being stuck along with having bursitis and a completely unstable pelvis. I still don't have a diagnosis regarding what had dropped into the top of the vagina as they keep using speculums which in sure is taking it out of view. My bladder surgery was due yesterday but they cancelled. I'm waiting to hear if it's this Monday coming. I'm hopeful as they are aware of the difficulties and will be looking into what's going on. I also don't know if the nerve is what's playing havoc with the bladder and bowel or at least party to what's going on. My biggest issue is the difficulty with not being able to sleep. As soon as I lay down my whole body screams at me and trying to get comfortable doesn't last long in one position.
I've spent many years trying to manage the pain mentally, mainly due to being told it was all in my head, but the last three years since diagnosis with JHS/EDS I'm pleased I've been believed but knowing there's nothing they can do for the pain breaks my heart. I spend many a night crying myself to sleep as I don't want my husband or boys to see it. I'm generally very placid but my smile is a struggle to show at times and my closest friends know when I'm not coping. My husband knows when I'm struggling as my time of voice changes and I become snappy. I also struggle when they are having a joke as I take things so seriously now. Pain does change you so holding onto hope is what we have left. I wish the effects of a general anaesthetic could be felt but with the ability to move and talk. It's the thought of not knowing pain whilst asleep. I hope that bit makes sense.
I think taking charge us what gives us our strength and the will to fight on. I've been told recently by Rheumy that they realise I need help but it's knowing what to do when I've tried everything. They're looking into a once a week hydrotherapy session to start with someone trained in Hypermobility as the previous sessions were damaging. They've also stated that they believe I'll be a full time wheelchair user, I'm part time between crutches and wheelchair now, within 5 years if they don't find something that helps. They've also said that they do not feel it will reduce the pain at all but may give me some mobility back. I'm 43 but hope that I can change the direction of my future but I need the specialists to do their bit.
So far I've waited 6 weeks and there no hydro in sight.
I think it's difficult for them to separate all the possible causes of pain and treat each area individually. The pain you explain can be down to PN but at the same time caused by a knock on effect from what's going on in the bigger picture so exaggerating it as such. I managed to finally get them to agree to an MRI on my lower back, the first and only one anywhere, and although my spine has major issues they could only report that the gaps are okay in the spine but it's likely that nerves are becoming trapped and at some stage becoming free again. At its worst I'm off my feet completely but at best pain is still chronic.
My apologies for such a long response. Have they tried you in a specialist corset to stabilise your pelvis to see if it will stop you from twisting? I just wondered if it would help bring some relief.
Look after yourself and please send me an update on your progress?
Annoyingly I don't seem able to follow anyone's posts, or I can't figure out how to do it, so I'll keep an eye out.
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More than just benign hypermobility syndrome?? 
Stomach problems, possibly slow transit?
Endometriosis and EDS/HEDS?
Hyper mobility syndrome
Diagnosed with Joint Hypermobility Syndrome but I’m not sure.