Pelvic Pain Support Network
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here again two years and still in pain , i went pain clinic and they sent me home and told me to drink tonic water?

Hi All,

I am male living in the U.K , my left leg always feels stiff and tight , plus when I'm lying down or sitting my left cheek goes number and i get all types of shooting , pulling and tingling pain in my groin , testicles and but cheeks and it radiates to right side also. Plus my sit bones also hurt. They wont send me scans and been told I've had for a long time and its chronic and an MRI will not fix the pain..I have been told to drink lots of tonic water and try various medicines which i am refussing to take - Amitripraline , deluxotine and Gabapentin. Anyone have same symptoms and if they ever got to the bottom of it?

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This is characteristic of pudendal nerve entrapment, or pelvic floor dysfunction. MRIs won't fix this... MRIs don't fix anything, so that was stupid of them to say. MRIs help find causes to create solutions. You need to possibly look into PT with a pelvic floor specialist and perhaps looking into acupuncture massage to pinpoint pressure points, and maybe unwind some of the pent up stress. Basically what's going on is the saddle of muscle tissue that forms a cradle for your groin area, bladder, prostate, tubing etc is strained and can't relax. This tugs at your leg and groin muscles and pelvis as well. You should try some pelvic floor relaxation stretches on youtube, and take hot relaxing sitz baths using epsom salt to try and help relax the area. That might help while you seek out a physical therapist, but you should have scans done anyway to rule out potentially devastating nerve entrapment that can get progressively worse if action isn't taken. That said, there's surgical procedures that can assist in moving or alleviating pressure on the nerves down there, which they should be giving you options for. Why are you opposed to the medications? I'm not familiar with them, but they could help, short term. Have you had any change in symptoms since day 1? Has the sensations decreased at all, or are there times when they decrease or vanish completely? If you stand up, are you more at ease? How old are you?

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Thank you for this. When i stand up all the symptoms go , the only really issue i have is when i walk long distance my left leg just gets harder to walk on... I am 33 and this is killing me inside....my issue has got worse since day one .....i just read so many bad things about antidepressants and i dont want to go down that road......

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Well breathe my friend, you don't have to take them and they likely wouldn't help anyway. Get some answers, tackle the issue, and you'll get it sorted, no doubt. Don't give up hope.

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I was just like you and I would not take the medications my Pain specialist was prescribing for me AFTER SHE PRESCRIBED Lyrica and Cymbalta. Those medications changed me into a monster. I permanently lost 60% of my sense of smell and taste from taking them. I hear you!i detest pills.

I DID NOT HAVE POST HERPETIC NEURALGIA! I had pudendal nerve entrapment. I was dismissed from day one. I was never given ‘Pain Clinic Intake Forms’ to fill out. Did you fill them out? They are a standard form all pain patients fill out. I had NO VOICE. Apparently, I had a personality disorder? NOT!

I was misdiagnosed because doctors were covering up a post surgical problem where metal had migrated and was the cause of much of my neuralgia pain and continued flare ups for ten years! Three surgeries that should have been done in 2008 and 2009 were not done and I was left in uncontrolled life threatening pain for three years.

You need a properly done fluoroscopy- guided nerve block into the pudendal nerve root in your buttock. If you can sit after that block it will prove it is the pudendal nerve that is agitated. If four nerve blocks do nothing, surgery is a must! It saved my life.

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See Dellon institutes under pain chapter 4

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Tonic water is a load of rubbish! As I said in earlier reply. I have same symptoms. Going to see Dr Dellon in Baltimore USA. He’s the only one given me any hope. See Dellon institutes. Under pain heading chapter 4.

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when you say you have the same symptoms - can you Pm me and just give me a bit more info?

Thx

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How do I private message you? Sorry bit thick on these things. Better way email me. swarke22@icloud.com

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Just click on my name "mamma-mia85" and top right you will see "messege" - i have just messeged you...

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My Minnesotan specialist said bubbly beverages of any kind are very bad for the bladder. I agree.....complete and utter rubbish.

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I am from the uK too. London pain clinic gave me no hope whatsoever.

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"Drink tons of water" um unless it is the fountain of cure sure....

Now back to seriousness . This could either be sacttia nerve or it could be restless legs. If you are having bladder and sexual issues this could also be related to an inflammation of the archonoid possibly.

Perhaps check for lyme disease.

You could also go for a nerve conduction test to rule out other causes. Wish you well

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Hi, Tell your doctor you need a diagnosis for the pain, sorry to say your doctors seem as bad as mine, I feel they don’t always listen. I had an MRI scan and I have Tarlov cysts and another type in my cauda equina area. Ask about trapped nerves or cysts, then they might send you for MRI. Hope you get a diagnosis and help soon.

Suzie

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Apparently, an MRI does not see nerves? Do you know if that is true? I read there is a special MRI that is for nerves.

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Hi, I do think MRI does show trapped nerves, I think maybe they use a contrast injection with the MRI scan, to show the tissue better, but I am not certain about that, ask your doctor. I think MRI is good for most things.

Suzie

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Hey

It sound to me like u may have a trapped nerve or mayb a slight disk bulge.

I have same problem...

Mine when laying or sitting but if i walk it goes but if i walk to much it there again.

Drive me nuts...

I had mri and it showed a disk bulge and knackered hip but no help.. just gabapentin so even when u get diagnosed u get nothing....

Wont take gabapentin as i still have to work and i heard it makes u weird.

I took it upon myself to do yoga and find a good osteopath and i am not free from pain 60% of time

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Thank you lulububs , I willl book and appointment with doctor again and ask him to do me a letter for private spine mri to see if there are any issues...

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Go see a Chiropractor or osteopath for help, NHS PAIN MANAGEMENT WONT DO ANYTHING BUT GIVE YOU PAIN KILLERS. A chiropractor will re- align you

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Hi i have nerve damage in my pelvis and my symptoms are similar to yours. My left thigh is numb and I get pain in my butt and sit bones. I am on Pregabalin and find it to be affective, it takes the edge off. So I suggest you try the meds because there is nothing we can do about it.

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I have heard MRI does not show Nerve issues but can show other problems such as bulging disks and skeletal issues, fibroids, etc. I forgot which professional wrote paper on entrapment versus Neuralgia but a very low percentage of people actually have an entrapped nerve. Please read my posts under Rocky68. I have very similar problem and after many injections and medications had a Dorsal Root Ganglion (DRG)

Implant. I have found 50% relief with DRG. I was able to remove Lyrica from medicine list but manage discomfort with Tramadol50mg and 10mg of

Baclofen. The implant is only thing that has provided me with relief. It may not work for you but I am able to sit longer and horrible spasms and burning have been reduced 80%. I do still have sacru pain but hope lead adjustments will alleviate this problem. H This has been my experience and each person needs to decide if they want to go this route. Rocky68

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Hi rocky thanks for this.

Where are you from? Can I pay to get DRG in the uk?

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I am in United States. My insurance paid for both the trial and the actual implant. It is quite expensive and a long process to actually get the implant. Rocky 68

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Hi all thank you so much for your posts...the good thing about here is that we are not alone! I have friends who smoke drink don’t exercise and are feeling fantastic everyday! And it makes you think why me? I eat healthy I have my 5 a day! I exercises , don’t smoke and drink only on weekends! One of you mentioned a chiropractor , I do feel unbalanced also as if my left takes all the weight when I’m walking , I think I do need to be straightened out. I think I’m still going to stay off medicine , I am going to keeping trying CBD , turmeric , vitamin d , glucosamine sulphate and having more greens than normal....this is so hard! I feel not doing anything , all my friends are going out pubs watch the football- such a simple thing is sooooo painful - FML

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It so annoying isnt it...

I am in same position, they think it my s1-l5 bulge but also i have degenerative hip pain.

I was a gymnast as a child till i was 18 and have always been super healthy and fit but it has ruined my body... i have elhers basically hypermobility which puts my body out all time.

I dont drink smoke ,eat gluten or sugar and do yoga every day but im also in pain EVERYDAY!!

I have been given gabapentin but im to scared to take it so i take glucosamine, tumeric, vitamin c and d and calcium and probiotics and hope it will help with fortnightly trips to a chiropractor who is AMAZING!

But one little thing will start pain... in butt, down leg but it always the good old groin one that kills me most...

Sometime it hurts to release wee and poo coz it hurts in groin to kind of bear down( does anyone else get this)?

Does anyone else take gabapentin and give me advice shall i or not????

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Hi I have very similar symptoms to you. MRI useful to check out area. I see pelvic floor Physio who also is excellent with neuro symptoms and lumbar pain. Very importantly I have a pain specialist who has treated me with nerve blocks for Pudendal, SIJ and Cluneal nerve pain. Your pelvic pain may be caused by pudendal nerve pain and /or inferior cluneal nerve pain combined with referred pain from your lumbar area. I take lyrica for the neuropathic pain and baclofen 30 mg in a tablet form which stops the stiffness in my leg. A piece of stiff foam with the centre cut out like a toilet seat takes the pressure off the pudendal nerve and inferior cluneal nerve to allow them to heal.

Have the nerve blocks repeated at 5 months and keep walking and reduce sitting.

My story started with a compressed spinal cord at T7 from a prolapsed disc causing neuropathic pain and stiffness in my left leg. Pelvic issues followed as a result due to the imbalances that resulted from the stiffness in my left side from the waist down. Your story is a little different and yet similar too. A combined approach is crucial, never give up and make your practitioners work for you. You are the expert too. Read, learn the nerves and muscles and find the practitioners who will listen, treat you as an equal and find the best solution to get you pain free. Best wishes my friend.

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Hi Mamma-mia85: Please get checked for pudendal neuralgia. This is a condition--with all the symptoms you describe--very common to bikers.

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