Hi, Im 59 and have just developed pudendal neuralgia-April 2019, I also have had Piraformus Syndrome -7 yrs(although not diagnosed).have been going to Osteopath for Piraformis, helps a bit. But, the burning for PN started I believe after a routine Smear Test, the Nurse really hurt me doing it, I did say to her at the time. She twisted the sample brush about 20 times high inside me to collect the sample, never have I had the brush twisted 20 times. So I think myself she has inadvertently upset some nerves down there with the movement of the Speculum stretching also hurting me, since had this dreadful burning pain from my Vulva to my rectum & sitting is painful. Have trigger point areas too which hurt on pressing.
I too don’t know where to start getting help. I live the UK, and can’t find many forums with people from UK..(for Drs,specialist help where to start in UK) My Dr send me for an MRI - sacrel, spine, lumbar, but it did not show either of the areas I have pain in! So the MRI although showed my spine is fine, I will now have to go back & see if they will do another MRI showing the correct areas!
Taking 2 x 75mg Pregablin, 1 x 10mg Nortryptline, which has helped the burning for PN but gets worse as day goes on so may need to up meds, not sure if I can just do this myself or get Drs opinion first. Going to my Drs is traumatic too as usually can not get an appointment for weeks in advance! Have to say it’s a medical emergency to get appointment the same week.
I don’t have health insurance in UK, so rely on NHS. Who do I need to be referred to? Neuro Muscular? of Gynaecologist? Hope I can get some advice and has anyone here got both Piraformis Syndrome and PN? , hoping to hear from someone, many thanks in advance of reply’s.
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Betsy-Blue
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Hi Betsy. I have had the most horrendous 10 years you could believe. The burning in my rectum and anus from this pelvic floor problem which they have called about 10 different things so far drove me to even have my tailbone removed. My symptoms are very similar to yours. The only way I get through the day is with a combination of medications which doesn't stop the pain but lessons is enough so I could at least have some kind of life. I would suggest that you try to go to a doctor can you guess these medications Lyrica some type of muscle relaxer like Valium War Zanaflex and also a pain medication perhaps oxycodone take these in conversation probably every 4 to 5 hours. I'm a professional pianist so you can imagine how much it has hurt me because I can't sit down without extreme pain so I've had to go to shows employee standing up with a keyboard. Also it's very important that you have some sort of medication to tpr anxiety level down because everyone who has this disease also has extreme anxiety due to the constant pain and the hopelessness of doctors saying we have no idea what you have after MRIs and other sayings that show nothing wrong yet you're an incredible pain. Please let me know how you're doing when I wake up in the morning it's not bad at all and then it gets increasingly worse as the day goes on most of the pain is in my lower rectum it burns and it hurts so bad. I hope this helps please let me know how you're doing. make sure you also do some meditation anything to keep your nervous system tamped down. Take care Al
Thank you for your reply. You have been suffering a long time, disgraceful that the Drs haven’t helped you more. I do have Anxiety as you mentioned & take Nortryptline and I also have Propranolol which I was taking prior to the PN pain. I have just ordered Alpha Lipoic Acid by Solgar 300mg. I took this when I had unbearable nerve pain when I had a couple of teeth out, the trauma left me with unbearable nerve pain for 2 years in my mouth, I then developed Burning Mouth syndrome... so I do think that any kind of trauma can upset the Nerves, thankfully it eventually went.. so there is hope. I take 2x 300mg Of the Alpha tablets, they worked before and I’m hoping work again.
I also do hot & cold packs twice a day to help with the pain. I see an Osteopath once a week (Private so I have to pay) been going for 7 years now. She who works on my tight muscles, which keep flaring up, with the Piraformis problem. I do need some kind of Muscle relaxants so this is my next visit to the Drs, perhaps a steroid injection in my Piraformis may stop the pulling to my Pelvic area.
Plus now this PN pain. I just pray the nerves mend themselves. I appreciate your help and will keep you posted on things, I’m quite a positive person so will keep looking for solutions, never give up aye. Chat again with you on here.
I have had PN pain and bad myofascial pain, hip pain, butt pain, and so on, for 10 years. I couldn't work for 6 years. I found that methadone helps my PN pain. I still have the full hip/ilium pain but the burning in my butt and PF decrease by about 50%, so with that med and special office equipment I was able to return to work.
I spend a lot of time in hot water (baths). Have to sit on ice in the car. After many years, diagnosis was eventually pudendal neuralgia. While sitting here in hot water again (it is 1 am now), searching for answers again, I just came across an interesting NIH article on Myofascial Pelvic Pain and trigger points. More Information is a good thing. So sad. So tired of this. Used to have a life, used to sing in the opera and had a job as a desktop publisher. Had to give it all up due to pain and inability to sit for long. After all these years, still searching.....
Early physio intervention is critical with PN again the physio you choose to see should really know this nerve or be very PN aware. Sadly those on the NHS are poorly trained.
I don't know where in the UK you live but you can certainly make contact with my physio Mr Bill Taylor in Edinburgh and he could maybe direct you where to get the help you need.
Bill Taylor
Taylor physio theraphy
Comley Bank Avenue
Stockbridge
Edinburgh.
I can't rate him highly enough.
Hope this is of some help to you. Can sympathise as to how you must be feeling.
Hi Betsy Blue my physio does internal physio per vagina and rectum. There are not many Physios in U.K. Who know this nerve really well so it's imperative you find one that does.
I'm hoping after a years intensive physio to get 90% recovery if I get that I will be well pleased.
I have spoken to several ladies that as a result of my Physios efforts he has gotten them to this place in their lives. Before they thought their life was over.
He's in Edinburgh. Check FB as well Taylor physio theraphy and sports injury. If you got in touch perhaps he could recommend physio close to home for you.
I don't come on this site very often but o hope this helps. There are success stories out there. Sadly though they go away and lead their lives which is what it probably should be.
Who wants to be kept being reminded of this pain once relatively cured.
I read an article that Piraformis can be contributing... I was ok till I had a recent Smear 3 weeks ago, think she upset something down there, with having tight muscles.
Pain is about 3/10 today, was 7/10 before I got the Pregablin with the burning. I’ll let you know how I get on, thanks for any info you can share with me, I very much appreciate.
Can i ask how your journey began with PN, did it just come on suddenly or do you have tight muscles too? Kind regards.
Hi Lottie thought I had lost you Ive just discovered that Gabapentin and other anti epileptics cause osteoporosis Although the MRI I had said my spine was in good order for my age a Dexa scan has showed that I have osteoporosis in my Lumbar spine so have to stop taking Gabapentin asap
Unbelievable isn't it. I do hope you get a good physio to help you. Just try and keep positive. It's difficult at times but got to look forward to a brighter and less painful future. 😀😀
Hello, I have not visited this site for a while as I am trying to get my life back after 4 years of hell with pudendal Neuralgia and sciatica. This is what worked for me. My physiotherapist dry needles me a few times a month as we worked on breathing in through the diaphragm and out towards my chest as if my ribs coming together while my feet against the wall in table top position and relaxed to each side( so opening up legs. Pushing down on the bra strap area and on the sit bone area so there is an arch in the back. Then straightening one leg with heel against wall and doing same breathing. After relaxing with the breathing for ten minutes I kneel on one leg with other leg with foot on floor and glide forward ( nerve gliding). Don’t go past toes with knees. Also , laying flat on stomach bend one leg out to the side and use your hip to pull the leg up(nerve gliding) . Remembering to breath in through diaphragm and out upon exertion. Then after three months of this I started Reformer Pilates and yoga while getting prolotherapy by a physiatrist once a month. So far two months of Pilates, yoga, and 2 sessions of prolo. I am off all drugs except Tylenol occasionally after prolo and lidocaine occasionally around anal sphincter. I begged three doctors for a colostomy back during the summer months . I am happy I did not do this or the spinal Stimulator. Find a good team of people. I also, had internal trigger point injections with a urogynecologist and a couple of cortisone treatments to figure things out. We all have imbalances in the Pelvis and spine. Calming down the nervous system first is important( dry needling and meditation). Then calming down the muscles with breathing very important. Then rebuilding with Pilates. Ok, I will be blunt. When I started Reformer Pilates I almost shit and peed my pants. But I pushed forward because it was the only way. Good luck everyone! I hope this is helpful to you. God Bless
Hi Susan 2-1 how would you rate your PN now? How long did you attend physio theraphy for? What is reformet Pilates specifically as well? You seemed to have a lot of bowel pain. Also what is dry needling? Is it acupuncture?
Hello again Betsy B, I’ve just read your original post. I’m not sure where in the UK you live, but I have received a couple of nerve block injections while trying to find the cause of pain. Although it didn’t last long the Pudendal Nerve Block gave the best relief. This was done at the Pain Clinic and through the NHS. This could be beneficial to you. Many people get months pain free.
Hi, I’m from North West England near Southport. Where did you have PN block done?
My PN pain has stopped quite a bit in the last 2 weeks, & now I’m getting my Piraformis type pain again though. Does seem to go round in a circle with it. But it would be useful to know which hospital you had the PN block just in case... thanks B-B
On the pelvic pain look up greg th pn youtube he is also British and he suffered for about 5yrs and now he is claiming tht he is pain free doing a program called dct by david mcoid who also suffered for 20 years with pelvic pain and even had 3 surgeries down there with no result. David had to come up with his own program so he partmered with a nba physio specialist amd came up with dct the cured david. Now greg fh did the program and now he is promotimg dct because all his pain is completely 100% gone.
I would say my pudendal pain is 99./. Gone. Prolotherapy to my SI Joint and ligaments relieved my pain on my right side and diaphragmic breathing relaxed my muscles around the left side calming things down.
Unfortunately , I had microdiscectomy in September for a slipped disc L4/L5. I have been to physical therapy 2 x a week for a month and I am strength training again using 55cm ball, roller, and therabands and hand weights. I have
Nerve flossed for four weeks as the sciatic nerve
was cranky. I get referred pain in my right groin
And tightness in my right hip area from a tight psoas on my left side. So, taking two tennis balls and taping them together and laying on top of them going down each side of my spine to my waist loosens the tight muscles. Just to the point right above my surgery sight. Doing the bird dog exercise tucking pelvis and belly button to spine
Using the 55cm ball for support with a long cribbage board on my back to keep a straight back and using 2 pound weights alternating arms and opposite leg( lifting an inch from the floor). 10 x . Laying on the ball doing sit-ups with feet against the wall. Laying on the ball using thera band for strengthening muscles in torso and arms. Modified Side planks to strengthen obliques. It’s important to see a physical therapist for these exercises and tweaking out sore areas. I would encourage everyone to move on if you don’t get help from the medical people you are working with. I have been to numerous chiropractors, physical therapists, and physiotherapists. They are all different. Same with the doctors. If you have weak back muscles
Fold a beach towel up and put it in a long pillow case and wrap it around the curve in your back for support when sitting and driving. This is better than any pillow. I am using a SI joint belt now for two months for support while I strengthen. I will be transitioning back to Pilates in two weeks to continue strength training . Think of your body as a whole unit . Your muscles working together with joints and bones.
Your muscles may be short on one side . Sitting a lot will shorten muscles. Also, guarding the painful area will tighten muscles. The roller if you lay down on it allows your mind to understand where your legs and arms are working together.
Tuck your pelvis and pull in your belly button to spine with hands on belly. Then open your arms out and drop to the floor then back to belly 3 x.
Your focus is off your pain and now on the exercise and your arms and tucking. Try to do exercises that are supportive and don’t cause pain. Meditate daily and breathe. Breathing relaxes the muscles around the nerves. If you are a chest breather you are not relaxed. I do not take and medication now. I had three perineal branches moved into my Obterator muscles. I too suffered. It has been a difficult journey. I have learned a great deal. But , I am better now. You can get better with the right help. I encourage everyone to understand and read about pain science from the physical therapists. Your brain can hang on to the pain. Yes the pain is real but it becomes like a habit over time. You have to break the cycle of pain.
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