I have Rheumatoid arthritis and after coming off my Methotrexate for other medical reasons I have had pelvic pain with pressure especially after urinating .
I have had various tests including a cystoscopy where the urologist says my urethra was narrow so stretched it bit apart from that everything else was normal .
She has now just said there’s nothing more she can do and has told me to go back my Rheumatology team which I am doing tomorrow .
All my pelvic is in is still there and everything down below just seems irritated .
Sometimes I can’t sit down because of the pressure and if I walk I get more pain especially in my right groin .
My daughter who is a chiropractor has mentioned to me about pudendal neuralgia but I can’t find much information about who would be the best doctor to see about this .
I will ask at my rheumatology appointment tomorrow but I don’t hold out much hope that they’ll discuss this as I’m there to discuss my medication .
It does seem strange though that all these problems started around the time I stopped my Methotrexate which dampens inflammation.
I would appreciate any advice as I really don’t know where to turn now .
All the investigations I’ve had so far have bee private which I’ve had to take a loan out for and I can’t get a face to face GP appointment until March 7th .
If I have to pay again I will but I don’t know who to see and want to get it right this time .
So far I’ve seen two urologists a uro gynaecologist and a functional medicine doctor .
I do take ami at night but that’s the only relief I get The days are just pure hell
Thank you for taking the time to read this .
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Sue4983
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interstitial cystitis. It’s a diagnosis of exclusion. I’ve been through what you’ve experienced and more in order to get the diagnosis. After two and a half years of twice and thrice daily debilitating pelvic and abdominal pain flare ups - burning, stabbing, pressure, constant need to urinate in absence of any infection, the ONLY lasting relief came with a change to what I eat. When you stop any of these RA meds, ones sensitivity can increase and you can experience new intolerances and flare ups worse than before starting the medication.
Food changes I had to make:
Increase probiotics (miso soup daily)
Yogurt
No processed grains (acidic)
No citrus (acid again - irritates nerve endings)
No cranberry juice or pills
No vitamin c heavy juices or teas (elderberry, sorrel, rosehip etc)
No caffeine (stimulates the smooth muscle in the bladder): includes milk chocolate, coffee, green and black tea etc.
Red food dyes
Artificial sweeteners and sugar-free juices and snacks
Alcohol (minor tolerance for one serving of wine; no hard liquor)
Carbination including soda and seltzer
Increased:
More roughage (enhance digestive motility, hydration and prevents comstipation; stagnant bowels will cause the adjacent muscles near the bladder and rectum to spasm, rub or otherwise spark painful sensations / chain reactions)
Increase water intake to daily recommended amount
Pressed apple cider
In my experience, pelvic pain evolved to include colon and intestinal pain, as well as the rectum - so my food intolerance list has grown. I will share here in case any of these are triggering your pain as well. This list includes foods that contain these ingredients.
Eggs
Bell peppers
Chili peppers (including food containing capsaicin like pepperoni, cayenne)
Tomato
Miralax (osmotic diuretic)
Senna (peristaltic movement diuretc)
Avocado
Banana
Cherries
Apricots
Collagen supplements
More tbd - I’m figuring out right now what is triggering pain this week after 3 months pain free after 2.5 miserable years!!!
Pay attention to what you eat and drink. Keep a good journal and note when you experience pain -the timing of the day in relation to what you’ve eaten or sipped, and notice what is common across different flare ups, and how long after consumption pain starts. Some liquids cause pain within minutes - red dyes, cayenne, and citrus for example.
Some irritants must pass through the alimentary tract and when moisture is extract from the food, then it will hit your bladder. Depending on how fast or slow your intestines process food, this could take anywhere from 2 to 24 hours. Don’t give up. Diligence is the way out from the pain. It doesn’t go away spontaneously because the intolerance is deep seated once the immune system starts reacting in this way. If you periodically lapse back into old foods and get pain flare ups again, as I am experiencing right now (i am navigating a compulsive eating disorder / disorganized relationship to certain foods), patience and gentleness with yourself is crucial as you right the ship again. It’s a lifelong change, so we have to unlearn patterned and habitual ways of eating, sometimes forgo traditional or fun foods, drinks, and desserts in order to support the body and what it is asking for in order to be pain free. Good luck to you. Feel free to share your experience if you have any changes.
Where do you live? I can give you the name of doctors near you.
I had pudendal nerve entrapment. My GP and specialists she sent me to didn’t believe me. I couldn’t sit and I couldn’t lie down and sleep. My rectum felt electrocuted.
I was misdiagnosed with cyclothymia and vulvodynia instead. I was offered medications that were useless and they did not control my pain. At one point I was left poly drugged and I lost normal cognitive function ( due to being left sedated )
I knew I needed nerve blocks and possibly surgery but the Vancouver, B.C. doctors would not help me.
I saw a neurologist in Toronto and he referred me to a specialist in Minneapolis, Minnesota.
22 months after all this started I was properly diagnosed in the US. The doctor there did a proper nerve block and I sat pain free for the first time in almost 2 years!
I came back to B.C. and I saw my GP. She was furious! She told me she DID NOT believe the US doctor’s diagnosis ( pudendal neuropathy ) and she also told me my Pain specialist had dropped me. ( this pain specialist did her nerve blocks on me incorrectly and without any guidance ).
I was left in agony without proper pain control and I almost died from severe sleep deprivation.
I hired and paid a registered nurse consultant to advocate for my surgery in May 2011. She procured my surgery. The Vancouver doctors lied and said they would but they did NOTHING to get me to the US for my surgery. They just didn’t care.
It saved my life. The surgeon said it was one of the worst pudendal nerve compression injuries he’d seen. My right pudendal nerve was pinched in three places. The 24/7 burning pain was gone.
I needed two other surgeries to remove metal Filshie clips that had migrated ( one on my rectum and one under the neck of my bladder in bowel ) in my pelvis. They should have been removed STAT in 2008 when my nerve injury became disabling but the doctors covered them up.
I’m finally on the mend with my pain being a constant 6/10. I’m focused on trying to overcome Central Sensitization as my Sympathetic Nervous System was left highly agitated for 10 years.
Thank you but I’m in the UK . Have just seen my rheumatologist and although he said he couldn’t directly help he did mention the pain is nerve related and could be pudendal neuralgia .
Still don’t know where to go from here or who to see ?
Any ideas for an expert in London ? There must be someone but Ive paid out so much money already its got to to be the right person this time
Dr. Andrew Baranowski, a urogynecologist, is at the The National Hospital for Neurology and Neurosurgery, Queen Square, London WC1N 3BG Phone number 020 7837 3611 He does nerve blocks. Nerve blocks are a diagnostic technique but for some lucky people they stop the pain.
Dr, Gareth Greenslade in Bristol has studied with the French inventor of the surgery I had to decompress my nerve. He administers nerve blocks and he can refer for decompression surgery if need be. He is based at Nutfield Hospital, 3 Clifton Hill, Clifton, Bristol. His mobile phone number is 0797 441 2933 and his landline is 0117 9688312. Email is bristolpainclinc@ gmail.com.
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