I have pudendal neuralgia secondary to multiple sclerosis. Are there any fellow multiple sclerosis sufferers with pelvic pain?

[MargoF]

[nolaglen]

I was diagnosed with MS in 1998. I have a lot of pain in my Vagina and rectum but I have a long standing history or recurrent endometriosis. I am going on Dec 16th for a pudendal nerve block to see if it eases the pain.

[MargoF in reply to nolaglen]

Hope the nerve block helps! My pain is more like I'm being skewered with a blunt metal rod through the wall of my vagina - very localised - and not a symptom I feel comfortable talking about with anyone except my mother! Yet another MS syptom where I look fine on the outside but am struggling to breath through the pain and just keep functioning on the inside! I have an appointment with the pain specialist today, so we'll see what they say...

[Juliegaines in reply to MargoF]

Can you please e mail me? I need to talk about what you have-I have MS and I have that vaginal

neuralgic horrible pain

I'm SO UPSET!!!!

[musheey in reply to Juliegaines]

I have MS and was wandering if this is a symptom of MS ? Newly dx can you help me !

[rocco1121 in reply to nolaglen]

I was recently diagnosed although I am a 40 year old male, I have pain in low back and Testicle and wondering if it is nerve pain from the MS.

[Katherine18]

Hi MargoF I'm so sorry you're in so much pain. Can I just ask what pain specialist you see? My GP has never heard of pudendal neuralgia and I can't find any specialists near me. I live in Newcastle upon Tyne but I'm willing to travel. I hope you have relief from your pain soon x

[Hugo3596 in reply to Katherine18]

Hi Katherine, from the list I have the nearest PN specialist to you is either Dr de Mello in Manchester or apparently Edinburgh now has a specialist too.

[MargoF]

Hi Katherine, it wasn't a pudendal neuralgia specialist I saw today, just a general pain specialist. I think because I have MS the location of my 'pain' is less relevant than if the pain was unexplained. Plaques/damage in my brain causes hyperactivity/hypersensitivity to develop in some areas, and if these areas are involved with processing pain signals then random and unpredictable pain sensations can be generated. I have another pain locus in my chest that feels like a very localised pleurisy pain. So treatment for me is opioid painkillers - gabapentin and other central pain meds don't seem to work. Perhaps a gynaecology specialist would be someone who could help you - how rubbish and frustrating that your GP is clueless! He/she should AT LEAST be referring you to a general chronic pain clinic. It's for your own sanity and quality of life! I did a search for private pain specialists in Edinburgh and if the NHS hadn't helped I would have asked my GP for a referral to one of them. Good luck!!

[JudyRentz]

No M Argo,but,bless your heart! For my pudendal pain on less severe days,after using everything,I find that Skelaxin and 800IB seem to help greatly.I ,sadly,have narcotics for the horrible days! Also,Gabepentin is good,600mgs throughout the day.Im heading to Minnesota Mon. For pudendal entrapment surgery,THANK GOD! Judy R

[Chica1943 in reply to JudyRentz]

Hi Judy. Just seeing your post from 3 guests ago. I would be grateful if you would post the results of the pudental entrapment surgery. Thank you Chica 1943

[Okiegirl in reply to JudyRentz]

I’ve followed your story on Utube and am so very happy for you to be well. How is your pain these days?

[juliansmom]

I've had chronic pelvic pain nerve related so the doctors say for two years. After a flasre up of multiple lymph nodes I asked for a blood test to check for lupus and the results as of now show positive for lupus or possible ms. Wondering if I had the ms all along and it caused my urinary and pelvic nerve pain. Any thoughts and what do I do now?

[Knightress]

Yes! I also have MS and have just begun to experience these pains too. They are really horrific, like being stabbed up the vagina and anus everytime I try to sit down. I also have Fibromyalgia everywhere. Im glad to have found out about this pain, however, as I am a medical assistant but I deal in CAM complementary and alternative medical paths. If I find a natural way to get this in check I will post my findings.

[ChronicPainClare]

Hi I know these posts are 2 and 3 years old but I'm in the exact same position unfortunately. I have been misdiagnosed as having burstitis of the hip and my GP thinks I have a prolapsed bowel as I have a cystocele but that part is recent, the pelvic pain started mid pregnancy and just when I was diagnosed back to around that date 8 years ago but as you know they tend to go for the easy option and put things down to MS and show you the door. I, too, feel like I'm being skewered sitting down and scream out. I'm unable to sit straight for very long. Hope you are feeling better now and can update me on, anything, really!

Until then I will be lounging in bed as it is the only place to find a comfortable position.

Clare xx

[smerwin in reply to ChronicPainClare]

Hi Clare,

I have MS and developed horrible pelvic nerve pain that I lived with for three years, 2005-2008. I was helped IMMEASURABLY by taking , nortriptyline, 50-75 mg before bed. Took a week or two to begin working. Been taking it for last 8 years, still grateful for it.

My neurologist learned about using it because another patient with pelvic pain had gone to Mayo Clinic and they recommended it.

Scott

[hoopwhirl2007]

Hi, I was diagnosed with MS in 2009 and apart from having two relapses with Optic Neuritis, 5 years apart, plus the occasional numb, rubber like foot when I get stressed, I must say that the MS doesn’t give me any bother. Back in 2014 I started to get the pain when sitting. The Docs told me I had coccydenia and over the last two years I have endured every test under the sun including MRIs, X-rays, numberous internals and to cap it all - a colonoscopy. I was even put under general anaesthetic in 2016 so that my coccyx could be fully examined and injected. The results came back clear and I was discharged. I have had fortnightly acupuncture sessions which didn’t work. Me and my partner did loads of research and every box was ticked on the symptoms for PN/PNE. No medics seem to know anything about PN problems and my GP openly admits she knows nothing about it as they were not trained in this field in Medical School. Fortunately my GP is sympathetic towards my struggle and upon my request she referred me to Dr Gareth Greenslade in Bristol, Privately, and he examined me internally and confirmed I had PN Entrapment. He gave me a nerve block and said that if he had got me in the right place then I should feel almost instant relief, albeit may not last for long. I felt no relief at all and this was done nearly two weeks ago and I am experiencing more pain than ever before. He recommended that I had surgery and suggested that Dr Robert in Nantes, France would be the best place to go, however, this would be private surgery which would cost about 4K, which I do not have and if I did find th funds and travelled to have this operation done, then who is to say that it would be successful? I have been taking Gabapentin x 1800mg per day but because I am in so much pain I have to increase my Gabapentin to the maximum allowed dosage. I digress though, sorry - so, yes, I do have MS and I have asked my MS specialist if this is anything to do with my symptoms? He has categorically told me that this is nothing to do with MS as MS comes and goes and is not a constant, ongoing pain ie, everytime I sit down. The pains I get from the PNE is as if I have a sharp rusty knife being pushed up my back passage and cutting me on the way up making me feel so very sore. I do not have piles or fissures and have been told that everything is healthy in my rectum. At the moment I am pulling out my hair trying to find exercises which are successful for us sufferers and I am scared to do an exercise which is shown online just in case it makes the problem worse. If you or any other readers see this post, perhaps you can tell me which exercises/stretches are good or PN? Hope you get answers to your PN and I am sure it is nothing to do with our MS ..... but who knows.... the medics never even once thought I would have PN problems so perhaps the MS specialist hasn’t heard of it either? But if your and I were told that our PN is connected to our MS then what has caused PN for the others out there? Take care my friend xxx

[musheey in reply to hoopwhirl2007]

Hello ,

I was wandering if you could help me as I am going through this as well. Is this A symptom of MS we have to deal with ? I really need someone to talk to .

[DecemberLeigh]

Yes, it's very likely.