Hi well after five years of suffering with the most intense burning, agitation, painful genitalia, lack of sleep I finally have a diagnosis of neuropathy.
I was referred to a Gynaecologist and after a month received a letter saying there would be a two year wait just to be seen. We decided that I should at least see a Gynaecologist privately for a professional opinion as I have no way of knowing what was causing the pain and I had had a hysterectomy 21 years ago and gone to a sexual health clinic last year and the Doctor told me that there was nothing to see.
Initially I found the Consultant curt and lacking in any warmth. She fired questions at me, interrupted and generally seemed disinterested. However she made a diagnosis of neuropathy and described my pain, hardening of the clitoris, agitation, jerking, restless legs perfectly. I felt relief. She told me the nerve pain I am getting in my legs comes from the same place, my pelvis. She told me there is no cure and no amount of pharmaceuticals will help me. She has referred me to a pain consultant for nerve blocking injections. Because it is private I can arrange an appointment on Monday. This will be difficult for us as I am chronically sick with autoimmune conditions and my husband is retired and 70 years of age but there is not an alternative for me.
I am so relieved that I have not been told it is in my head or had the pain minimised as GP’s have done for years. Has anyone had these nerve blocks and do they work please?
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CecilyParsley
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Hi Cecily,Being American, I'm not familiar with the UK health system. Two years seems like an awful long wait to see a doctor.
It's wonderful you were diagnosed so quickly, and that the nerve blocks will help. I suffer with symptoms similar to yours. Including restless leg syndrome. I jave no advice to offer. Only support.
Thank you so much. It is an excessive waiting time sadly caused by underfunding of our NHS and the pandemic. I could have waited those two years only to be told there was nothing they could do and join the queue again for the pain clinic. I have just booked a private consultation with the pain specialist next Tuesday. Hopefully she will schedule the nerve block soon. I am so sorry that you suffer these debilitating symptoms too xx
I am happy to hear that you are finding an answer I suffer with pundel neuralgia I too was misdiagnosed for snout a year and a half..I had a nerve block that made me feel worse I use valerian root and hops up to 3 times daily and yoga please read the book by Amy Stein “ healing pelvic pain” it truly has been aGod send
So sorry it did not work for you. I am hopeful it will work for me 🤞🏻I cannot do yoga as I have a lot of other conditions too AI. Arthritis etc. I will see the pain consultant and see what she has to say xx
Your symptoms certainly sound like a pelvic neuropathy of some sort.
After all this time, have you become incontinent with urine or stool? I’m ask because I had PNE and I started losing stool about a year into having my neuropathy.
Are you woken from sleep in the middle of the night and you urinate pain free BUT when you lie down again your genitalia burns? Do you feel electrocuted?
I ask because I had nocturia every night for 4 years and my rectum burned afterwards. I had no sleep for over 3.5 years. I became sleep deprived. I cannot imagine no sleep for 5 years!
The nerve blocks are generally a diagnostic technique and not a cure. If the right nerve is injected and the block is done with fluoroscopy guidance you should be pain free for a few hours because the injection numbed the right nerve. I had both an anaesthetic and steroid injected in my blocks.
I had seven nerve blocks of which none lasted ( only a small percentage of people have long term relief from nerve blocks ) so having decompression surgery was my only option or I was going to lose my life from untreated severe pain and sleep deprivation.
Good luck with the private doctor. Cecily, keep us posted.
Hi I have like symptoms however feeling much better up less in the night as on a FODMAP diet no WHEAT no gluten only OATS sprinkled on cornflakes for breakfast help the horrid feeling of needing to poo and constantly on the toilet. I take D-Mannose to neutralise urine definately helps fewer UTI's. Don't eat onion or garlic or apples (fructose). Try it I lost a stone in weight in a month and altho not perfect and still up twice a night feel a lot better.
Dietician's advice definately helps. Less pressure from bowels on bladder.
I am a complex case unfortunately. I became incontinent of urine after so many Gynae ops and damage to my bladder from repeated “ un sticking”. I always had IBS from a teenager so constipation and loose bowels. Then I got diagnosed with Lupus and for the past ten years I have been on morphine hence the constipation. As a vegetarian I could not have more fibre and I drink 8 litres of water a day but it does not alter the constipation.
Yes I am woken to go to the loo and unless I have a UTI it doesn’t burn but yes it absolutely burns so badly when I lie down. I often have to sleep sitting in my recliner.I have just looked up nocturia thank you. One of the concerns with Lupus is kidney disease so I will get a blood test to check.Thank you so much for that. You woukd think after being under a Urologidt for years they would have picked that up?
As for the nerve blocks I think I have no option but to try them. The Pain Specialist said the highest pain was through the clitoris which remains swollen and uncomfortable. The electric shocks regularly go from my poor knees into my feet and up into my groin. Currently I am losing my mind from lack of sleep, side effects from the Duloxitine, withdrawal from the morphine. I wonder how many give up? It feels like torture and this hub is the only place I have had any support at all xx
The lack of sleep because of pain is serious. You need to explain to the doctor what’s happening with the night wakings. Your cognitive function will change for the worse if you become seriously sleep deprived. Can you be given a Compounded Valium Lidocaine vaginal suppository for use at bedtime?
I am seeing the Pain Specialist again on 29 th so will definitely mention all of this now I know. Last night I put a hot water bottle across my pelvis. It seemed to warm my bladder and I slep deeply, actually managing 21/2 hours between each toilet trip but 7 hours in total. That is more than the whole of last week. I will let you know the outcome of my appointment. Xx
I am so very sorry you have had such a bad time. I fortunately manage some sleep between bouts of the burning.
I think the pain has been masked by other pain over the years. Bechets ulceration of the vulva and labia is one of the worst pains I have. The tiny ulcers make my labia swell so weeding is excrutiating. They gave me lidocaine in ointment and liquid form but sadly it only lasts about 15 minutes. Then came the vaginal atrophy which irritated and burned. I thought this burning was a part of both issues but then my clitoris became engorged and the severe agitation started.
Over the years GP’s have viewed me as depressed, anxious when in fact I was desperate. I have two really bad knees both needed replacing in 2009 but I have been unable to get them done because I have never been well enough. My restless legs cause me so much pain as one kneecap has a hairline crack and is bone on bone and the other is loose and readily dislocates and is also bone on bone.
The agitation starts first with me. I struggle to concentrate, my legs start twitching, my heart races, I start to sweat then the burning cones in like someone is sticking a red hot poker into my vagina. Initially it would pass in 24 hours and happen once a month on average but now it lasts three or four days of every week. I am like a zombie. On top of the AI issues and the knees it is driving me mad.
I know it seems the nerve blocks do not work for everyone but I just have to try and hope and pray because I could not afford further treatment privately unless I get a Lotto win xx
you have been suffering a lot! I have had some of your symptoms in the past and still get them occasionally but since I was told I was diabetic and stopped eating sugar , plus following a low carb diet I have greatly improved, I hope you can get relief
Thank you it is hard sometimes to keep going but you have to don’t you?I was very shocked to find that Citalopram caused clitoral hardening so I am weaning myself off them. I am so pleased that you find something that works for you xx
Me too less sugar and follow a FODMAP diet really helps and bonus Ive lost a stone in a month. NO WHEAT or SUGAR. No apples or certain fruits because of high fructose. Much more comfortable altho not perfect but less bowel pressure on bladder. Take D-Mannose too.
Hi, I like you cannot get a referral in the UK, It is all so slow and they treat you like its all in the head, my pain is much like yours all in the vaginal area and extremely painful as you say a red hot poker, I fell like everything is moving constantly, and only get relief when standing. then its just residual pain. I do hope the nerve blocking injection works for you as this will give me hope as nothing else has, I have tried everything there is to offer. Please let me know how you get on.
I am so sorry that you have this too. It is debilitating and gets you down. I truly wish that the Consultant pain specialist I saw could see everyone who suffers. I was overwhelmed honestly. Firstly she agreed with me that morphine is not the best option for my AI conditions and will help me wean off and swap with another non addictive pain relief. She strongly advised that I should not get knee surgery given all my health issues as she said my body will not cope. She looked at my legs and said you have Lipodema, she prescribed a cream for the dry skin and bruises. I have seen Rheumatologists, Haematologists, Neurologists, Gastroenterologists, Orthopaedic Surgeons, Urologists and no one else has picked this up. She has started me on Duloxitine 20 mg to see if I get any relief. Whilst the burning remains the agitation is starting to improve so worth persevering I think. The biggest thing was when she touched points on my pelvis and genital area the pain immediately returned so she listened and responded and that really is priceless. I will certainly update you on how I get on xx
For the burning pain I had a doctor tell me to fill a condom 1/2 full with 50% rubbing alcohol/50% water and put in the freezer. My husband had me "double wrap" them because he was afraid the condom would break. They did help that burning for about 1/2 hour. Just FYI.
Good grief what a strange solution. Did he say why that works? It sounds like a lot of effort for such little gain. I have used syringes of local anaesthetic but the Pain Consultant advised that lidocaine used regularly is extremely bad for you so I only use it when I have the Be get ulceration
I've used lidocaine too. It does have side effects. The alcohol keeps the water from freezing, it acts like a coolant to stop the burn. It worked great foe burning pain, but only lasted while it was cold. About 1/2 hr.
Hi, Thank you so much for your reply, I have tried Duloxitine but it didn't work for me I'm afraid. The only one that did was Tregritol and I would have carried on with it for the pain relief but the benefits wore off very quickly and the side effects took over. They were so bad I couldn't think straight had a stammer and twitching, so the doctor wouldn't let me have any more!! She asked why would I want to continue with them, WHY because the pain is excruciating!!!! 🤬They really have no idea, do they! Someone on here has recommended a Dr Gareth Greenslade at Bristol pain clinic, I have emailed him and am waiting a reply, I will let you know how I get on. I really feel for you having so much else to deal with on top of this you must be desperate. 😟 I am lucky I suppose in that this is the only thing that I am dealing with ATM. Take care and wishing you well!!😘
Thank you so much. The Duloxitine is playing hell with my tummy, I have a headache, tinitis, and am going for a wee nine times a night and I am on the lowest dose so far. I am so sorry it didn’t work for you. Can I ask does the pain make you agitated? I literally cannot keep still, my legs go like pistons ( not great while waiting for a double knee replacement). I am so jerky and cannot sleep. I am trying to wean off morphine too so I have not been to bed for two nights. I feel desperate too. Yes please do let me know how you get on with Dr Gareth Greenslade. I sincerely hope that he can help you xx
TRY A FODMAP DIET I'm much more comfortable and up less in the night. Irritable legs affected by SUGAR. A dietician has helped me but I have had the same problems as you.
Have had a hip replacement too 18 months ago helped knees. Other hip needing done as irritable leg with hot foot some nights but find that's sugar related. I know how awful all this is 5 years of it. Feeling much more comfortable on new diet. NO WHEAT. Oats only.
Hi, Strange most of the meds I have tried stopped me weeing, couldn't go until about mid day from the night before and even then it was just a trickle. I was on a hundred mls if Morphine a day plus oramorph as and when. Didn't touch the pain and the Doc just kept putting it up saying this must work, it didn't. then the next doc said you can't take all that its dangerous so I to had to wean off it, I did it in about two weeks, but as I said it had NO effect on me whatsoever may as well have been water. At the moment I don't get 'jumpy legs' but I do have a constant buzzing / vibrating through my whole body when lying down, when sitting the real pain takes over. The only meds I am on at the moment is Amitriptyline 6 a night, it doesn't stop the pain just helps me sleep, although I wake every 20mins or so, ( because of the buzzing feeling) but do go back to sleep ok. I also drink a couple of glasses of wine a night I wouldn't get through the evening without it, the doc said I have to stop as it could kill me with the meds, don't really care to be honest. I never used to drink. I work about 50 hours a week luckily my company put in a stand up desk for my, it is tiring, standing all day. But I expect you would feel lucky to be able to with your knees. I like you feel like nobody really cares, everyone says oh how awful, poor you - but its not them and they really couldn't care less, this includes ALL of the docs I have seen!! Sorry, not really cheering you up am I 🙄😜
No but it is the truth, our truth. The Doctors I have met some have been insulting, reduced me to tears or not wanting to be here..no wonder you have so many UTI’s with all that fat between your legs, I cannot use the normal BP cuff on your your arms are huge, you shoukd consider your lifestyle, the only thing wrong with you is Fibromyalgia and hysteria..charmers eh? They should try living my life.
I used to work long hours until I got sick with Lupus but that was 14 years ago now. I miss it. I miss sleeping well more. The last time I slept for more than an hour a night was Monday. The agitation is worse than the pain for me. Last night I took four sedation antihistamines, morphine, three Gabapentin and I still only slept for less than an hour. It is driving me crazy. We deserve better treatment than this . Look after yourself xx
TRY FODMAP DIET and you will feel much better. Dietician has helped me not doctors who haven't a clue. Less sugar wine at night. Eat oats sprinkled on cornflakes (no wheat) with milk and blueberries will help.
Hi I am in a similar state of health but after lots of ultrasounds etc. nothing found however a dietician has helped me with a FODMAP diet cutting out WHEAT altogether (no gluten). Can't eat apples or onions or garlic.
Oats for breakfast sprinkled on cornflakes. Helps with bowels so less pressure on bladder. Altogether more comfortable. Use estrogen at times but not dry also cannestan incase thrush. Take D-Mannose to neutralize urine definately helps and recommended by doctor.
Still a bit of retention at night up a couple of times painful until I can pee. Rub thighs downwards and behind knees sounds funny but works as releases nerves around bladder urologist says so not as daft as it sounds found this one desperate night on internet.
Try it cause I feel a lot better now. (5 years of misery).
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