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Pelvic Pain Support Network
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Pudendal and Piraformis Pain need help

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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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

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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.

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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.

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Also, i would personally make sure the ice isnt too cold because that can flare up your nerve pain. Same with heat.

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I have the same problem....since 2012.

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.....

ncbi.nlm.nih.gov/pmc/articl...

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Just to say there had been a lady on this forum who developed PN as a direct result of her osteopath just to make you aware.

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Thanks. I’ve tried to find the post but cannot find on here.

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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.

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Hi Lottie, I live in Lancashire near Southport.

Could I ask what exactly does the Physiotherapist do?

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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.

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Thanks for your reply Lottie, where is your Physio based? I live in West Lancs near Southport.

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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.

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Just to say piriformis can be a player in PN as well.

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Thanks Lottie, yes I will email him.

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.

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I irritated inferior branch of this nerve as a result of a heavy impact fall on to my buttocks.☹️Nightmare really.

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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

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I too had a really bad fall onto my right buttock 7 years ago.. this is when my Piraformis problem began...

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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. 😀😀

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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

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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?

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