My wife has suffered from severe chronic pain in right buttock for well over 13 years now. In 2002, diagnosis was inflammation of the sacroiliac joint and my wife was thereafter subjected to a regime of painkillers and anti-depressants, combined with very painful pain block injections which always made the pain much worse. Around 2011, the diagnosis changed to damage to the pudendal nerve and she was subject to some very painful physio treatment. Eventually she was referred to a London pain management specialist who then changed the diagnosis to damage to the central nervous system. With the pain increasing and her mobility getting less and less, she is also subject to IBS and Type 2 diabetes. She is about to be reassessed at a local pain management clinic but in the meantime does anyone have experience of a similar condition?
Chronic pain in right buttock - Pelvic Pain Suppo...
Chronic pain in right buttock
Hi, I've had right buttock pain for five years. Initially it was brought on by sitting especially driving, but in the last year it has become permanent and has spread to both sides and both legs. At first I was injected with Botox in my piriformis and steroid in my SI joint and caudal space -all in one go. Massive mistake! The injections made the pain go off the scale for 6 months. Since then I've been from pillar to post, seeing over 10 consultants of various disciplines. I recently saw Dr Baranowski in London who is a pelvic pain specialist. He sent me for an MRN and I have the follow up appointment tomorrow. he suggested that I have middle cluneal neuropathy which he has never seen before, but I'm hoping tomorrow all will become clear. Has your wife had an MRN? Apparently they can see nerve damage, although I'm also led to believe they aren't always very useful. I take 400mg of Tramadol a day which takes the edge of, but I still have a weird cratchy scrapping feeling sensation in the backs of my legs most of the day and I can't sit down for more than 5 minutes without risking a flare up.
a damaged tailbone can refer pain to the same area, butt, pelvis, pelvic floor, try asking for a ganglion of impar block.
Thanks, Charles, we'll have a look at that.
Thanks for your response, Jeremy, it's quite interesting as my wife has been to see Dr Baranowski and his team in London 3 times over the last couple of years and it was he who changed the diagnosis as damage to the central nervous system but she has nor received any treatment, just 1 hour discussion meetings. She has now been transferred back to the throws of the local pain management clinic in Aberdeen.
it sounds more like central sensitisation.... some members from another forum either did ketamine therapy in the us or got a pain pump/SCS implant
is she can try, she can take magnesium on a daily basis (but not months on end) ..I have neuro symptoms in terms of terrible buzzing and twitching and after 10 days of magnesium this always dissapears
You can take magnesium supplements ALL your life & wont suffer any ill effects, it is water soluble & is removed in urine. Also, please look for Magnesium Glycinate, NOT Citrate. Our bodies hardly absorb anything from the Citrate form. Mag. also requires Potassium to be properly absorbed so be sure to have Potassium rich foods or added supplement.
HELLO mikey 46
you could be telling my story other than the duration your wife has tolerated the pain.My wife has only been suffering for four years and has been reduced to a vegetative state, never going out rarely getting dressed moving from bedroom to a chair downstairs then back again in the evening every day without exception, all day is spent reading or watching programs on the i pad. Her pain is mainly rectal and is described as acid being poured into her and sitting on a large ball. When sitting becomes too painful she paces round and round the table, I worked out that 146 laps was one mile. THere has been no definitive diagnosis but pudental nerve entrapment has been mentioned by the Guru Baranowski after seeing dozens of consultants all eager to take your money but say nothing. We have stayed away from nerve blocks and use tramodol sparingly as it causes constipation which causes more pain with the bowel enlarged pressing on the nerve. She also has type 2 diabetes and IBS, Diabetes causes nerve pain and constipation. Magnesium has been suggested to relieve the pain and constipation but you can't take it for too long so back comes the problem. The only real advice I have had from a colleague, a top London consultant, who warned against nerve blocks, was a sacral nerve implant and suggested St Marks, North London as the centre of excellence for bowel problems. I think my problem is that my wife has given up trying to find a solution and is just waiting to die praying that the end comes quick without too much pain.
I have this same rectal pain ans the cause is uterine. I have adenomyosis/endometriosis which causes inflammation of the uterus and neighbouring organs, especially the bowel. It might be worth seeing a gynae who specialises in endometriosis. There is a list on the endometropolisis page on facebook.
Negative. I was diagnosed with endometriosis, going into the abdominal area with a laparoscopic with only stretch the abdominal nerves and make matters worse. The surgery could also ramp up her nervous system. Nerve issues are not cyclical like endo pain is, it is a burning pain that doesn't let up. I'drather have the old enendometriosis pain than this. I hsd a partial hysterectomy for endometriosis and the nerve pain was unbearable two years post op. I've been in pt for a year and improving
I believe adenomyoisis is a different ballgame. Once the inflammation sets in it's 24/7.
Not overtly cyclical. My worst pain (rectal) is always the week after menstruation, tho it never goes away - along with hip, buttock, upper thighs, even labia...
Get her into pelvic floor physical therapy one with someone who knows about pn. I had this and have gotten better. Magnesium you can take everyday, Not sure who told you that? I had a pn nerve block and it did help me others it didn't help. Dr Hibner in the USA does Pudendal surgeries
I see why you clearly understand my wife's problem. She also has been through the Baranowski process but only got about 3x1 hour discussion meetings over 2 years along with the changed diagnosis to damage to the central nervous system. I can well sympathise with your wife's dilemma.
Gosh I am so sorry to hear of your wife's symptoms and problems. I appreciate that you have visited many consultants already and she has lost faith.. I have been there too. I think you are suffering also. I have eventually been treated by a professor in France for Pudendal Nerve Entrapment. His name is Professor Robert. I know he has taught Neurosurgeons and gynaecologists in the UK.. also has she got a special cushion made for pelvic floor or Pudendal pain problems? It is imperative that one must use one if one is going to sit down otherwise the pain will continue. I eventually got mine through a Co. Called KHOL.
You are in my thoughts and prayers. Do not give up. Also I have come in here at the tail end. You may have much better and constructive advice from the board who set up this forum.
Kind regards.
I myself have similar pain.....cant actually pinpoint when and how it started ....I have gone from a very active and fit person to putting on a lot of weight and very depressed .....doctors are useless if they cant find anything they say you are imaging it! have just been put forward for possible nerve blocks I will try anything.....really feel for your wife as I know how she feels....give her a big hug from me
Linda
Sounds very familiar. My wife is taking pain killers, including Dipipanone, Pregabalin, Targinact and Duloxetine(also an anti-depressant). I recently contacted Dr Robert in the Nantes Pain Clinic and he quoted this : "as pain is mostly situated in the gluteal region and in the posterior aspect of the inferior limb, it looks more like a piriformis syndrom than a pudendal neuralgia. In this aim, the first treatment is stretching of the pelvi-trochanterian muscles, then block of the piriformis or internal obturator muscle, then botox in those muscles and, in rare cases, surgery.
yours sincerely
Pr R ROBERT"
Also : "the block (infiltration) is a diagnosis weapon. It could lead from time to time to decreasing of pain. it must be done Under CT scan to reach with precision the piriformis muscle. I do beleive that it is feasable everywhere.
Yours sincerely
Pr r ROBERT".
Shared that with our local Consultant and he has not commented other than to say my wife's improvement programme is one of following an objective-based pain management programme!
Thanks for sharing and your cuddle has been duly done. Keep in touch and I hope things improve for you.
Perhaps your wife needs a pelvic pain specialist and/or a pelvic pain physio. These people can rule out things like pudendal nerve, cluneal nerve, or femoro-genital nerve damage. I've had same prob for 4 yrs. GP's always diagnose sciatica . I do hope you can track down a good pelvic pain specialist and eliminate the possible causes of this pain .
What have you done for your problem? I have something similar.
Yes i have. The way I've gotten better: physical therapy for the pelvic floor, low inflammation diet, meditation, try not to sit, suppositories for vagina compounded with Iidocaine, valium and gabapentin. Nortipelyene. I saw a neurosurgeon who diagnosed me. There is a closed Facebook group called pudendal hope you will learn lots there. There is a Pudendal hope website as well.
Try Rolfing, the primary treatment that has helped my Chronic Pain Syndrome, low back, sciatic nerve damage & abdominal/pelvic floor pain. Check out openfocus.com for techniques to managing pain, anxiety, depression, etc. The books come with guided exercises on a cd. Rolfing is the treatment that has helped me the most: rolf.org/about and although my level of ability has improved some, but more importantly, my quality of life is 99% better: I now sleep more than 2 hrs at a time. Pain does not dominate my mind & I have been able to expand what I do from home & feel MUCH better. Been consistently doing Rolfing a little over a year now. FREAKIN AWESOME! Good Luck. Oh, also, there are a lot of studies showing chronic pain sufferers are depleated in Magnesium & Vit D and benefit greatly from social websites. I'v been participating here social.viveraehealth.com/ac..., it has a bit of focus on 12 Step Recovery process but includes a great deal more. I initially went on for pain issues & have been getting great Mental Health support & a sense of community that I lost with disability.
Sounds like the story of my life since my hysterectomy in 1996. Tried all that stuff. Seen all the doctors. No Diabetes but first told Fibromyalgia than Chronic Pain Disorder now progressive neuropathy. Rectal spasm, IBS and Bladder problems. MRI's show bad disks tendon tears in shoulders no told this is something "rheumetoid" no real answers. For me pills get me through the day and I try to take as little as possible as the side effects make me miserable and tired. Gabenpentin works for the burning and prednisone (which I am told to try not to take) takes away most of the time. I have had awful experiences with physiotherapists who hurt me and made me worse. Our story is pretty common and I expect no answers and wonder why I waste my time on this site since all I hear is same stuff over and over again. Swimming laps works better for me than any physio therapy or even most pills but I am broke and have to get back and forth. It annoys me that the doctors just seem to make a bunch of money on people like us and don't understand that we need help in our lives now - meaning actual help paying our bills, cleaning out our closets, sleeping at night, getting back and forth to doctors. They talk a lot of "positive thinking stuff" anti-depressants, various treatments that don't really work and it's exhausting.
If you wife had Trigger point therapy with the Physio, I sympathise. I have found it painful and it has not worked for me. In answer to another posting, magnesium pills do not agree with my system. So for me any magnesium has to come from green veg.
I find Traditional style Chinese Acupuncture beneficial and have been having this Private treatment for About15 years. It helps more than you realise.
A damaged tailbone can refer pain to the buttocks/pelvic floor (get a ganglion of impar block). Pudendal nerve entrapment is also something to get ruled out by an expert. Long term drug use (like pain killers) aren't good on people's bodies.
I take 400 mgs mag 2x a day & 5000IU Vit D 1x a day for 3 weeks/1 week off
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