Dr Greenslade Bristol, UK Does he do an examination?

[65566556____]

Anyone been to Dr Greenslade that can tell me if he actually does a physical examination? Like checking internally for compression signs.

[hoopwhirl2007]

Hi, I saw Dr Greenslade in Bristol in 2016 and he checked me internally in my back passage to get a trigger point. He then carried out a guided nerve block. Unfortunate after the one half of my buttock down to my foot going totally numb, I recovered in a few hours and no better since. He admitted that he may have in error got my sciatica nerve in error! This visit was £300 then so I don't know how much it is now! I have had PNE for 9 years now and no better. I have tried everything possible to help get rid of pain but to no avail. I saw a osteo last year who was convinced the problem stems from my SI joint 1 and 2. Some days are ok, others are really unbearable. I take gabapentin and amitriptyline and I refuse to up the dosage as I've been on these meds for 10 years now. I think If the medics looked into our pain in more depth, then possibly we could be out of pain but unfortunately money talks and private treatment is so expensive and the NHS are so over exhausted, most of us don't stand a chance. Anyway, I really hope your visit to DrG is a great success. Good luck!

[65566556____ in reply to hoopwhirl2007]

Thanks so much for your reply. I’m possibly seeing him the end of the month to get a diagnostic nerve block. May I ask what dose of gabapentin you are on as I’ve just started this at a low dose. 200mg 3 times a day and building it up slowly. I’m 2 years in with this and suffering badly. It had now affected my mental health as I just feel hopeless. Have you not considered going to France to have the operation? I am at the point now. Do I carry on as I am with my life virtually at a standstill as I am virtually housebound due to the pain. Or do I toss the coin and give myself a chance with the operation. Mine was caused by cycling.

[65566556____ in reply to hoopwhirl2007]

Btw. I have had 3 ct guided nerve blocks 2 of which he missed the spot as I didn’t go numb. I think of the one good one it over spilled onto the sciatic nerve as the pain down my leg went. This made me wonder if something else is causing the pain as I also have pain in the buttock and down the back of the leg with my foot having sensation change.

[hoopwhirl2007 in reply to 65566556____]

Problem is the medics don't understand pudendal nerve probs and most have admitted that they never learnt this in med school. We have to do all of the research for them! I started off taking the same amount of gabapentin as you but I chose to reduce the dosage because I was putting on a lot of weight. I now take 200mg in morning and at night but I think the 10mg amiltrypline taken at night really helps. I also think that the gabapentin doesn't do much. I am fine when standing and walking but the pain starts when I sit down. I know about the op in France but the success rate isn't good enough for me to want to take the risk. I do a few exercises and find lying down and bringing knees up and opening wide so you feel the stretch really helps with pain. Keep this s stretch for as long as you can bear. Try it and see. I find my pain begins when I open my bowels. The pain feels like someone has stuck a blade up my bottom and torn the skin ... That's the only way I can describe the pain. I don't have piles or fissures. I even had a colonoscopy and that was clear. My PN started after prolonged sitting at work for my whole working life. It reared it's ugly head following me sitting in a strange position at work for 6 hours typing a document. I was so fit before this pain. Good luck.

[65566556____ in reply to hoopwhirl2007]

Is the surgery not worth the risk. There are many people who are pain free now after surgery. Think you have to remember that only those who had unsuccessful surgery post. I’m ok to put a bit of weight on as I am very thin now due to the pain and stress of this injury. Unfortunately I am in a great deal of pain when I stand or walk so it’s pretty grim. I can sit but it’s very uncomfortable and I will pay for it later in the day. How old are you if you don’t mind me asking?

[hoopwhirl2007 in reply to 65566556____]

Unfortunately I also have MS and Lichen Sclerosus so I will not take the risk. I'm 70 this year so not worth it. I am not your stereo typical 70 year old. I am young at heart and still active. I was lucky getting diagnosed with MS at the age of 54 because the older you are in being diagnosed, the better chance I have with it not affecting me much. The lichen sclerosus on the other hand. . is extremely painful and I see a private specialist to try and keep this under control. This LS is in my vulva so you can imagine how awful this is Hope you make the right decision and finally become pain free.

[Konagirl60 in reply to 65566556____]

Hi there. I had severe Pudendal Nerve entrapment. There were three spots of compression; the ligamental grip, the Alcock’s canal and my inferior rectal nerve.

I had MRI’s and they saw no entrapment. As a result, I was deemed as having a nerve imbalance. What is that?

My GP never believed me. I was yelled and screamed at by her at every appointment for over two years. She was certain I wasn’t being honest. She sent me to a psychiatrist who deemed me having cyclothymia. It was just nonsense.

I wasn’t given the proper blocks for my PNE because my blocks were done into my vaginal wall with only an anaesthetic. I wasn’t delivering a baby! They needed to be injections into the nerve roots in right buttock. I needed to be injected with both anesthesia and 40 mg steroid.

After 10 months of going to specialists who all brushed me off ( and never examined me ) I brought an advocate with me to meet the Pain specialist. This doctor did NOT listen to anything I had to say. My friend kindly sat in a chair behind the doctor….the doctor forgot she was there.

I very cordially asked the doctor ( pain specialist) if she would please order me a CT guided pudendal nerve block done into my buttock. She refused. She kept saying that pelvic pain is a big black box of queries. Utter nonsense.

My advocate got out of her chair and in no uncertain terms she said , “ Dr. Lau, you order that nerve block now! Do you really expect her to sit on ice packs the rest of her life!??” That worked.

I had the nerve block done properly a month later. Thank the Lord, the radiologist who did it was visiting from Montreal, he knew about PNE and he injected between the two ligaments where the nerve can get in trouble. It worked. The awful electrocution pain in my rectum was finally gone after ten months of torture!

The pain specialist refused to order me a second nerve block. She said my case was a medication management case…there was no more they could do. She incorrectly diagnosed me with vulvodynia. No doctor cared.

I managed my case. I found the neurologist in Toronto’s “ Wasser Pain Clinic” who let me know what diagnostic tests I needed. I saw this neurologist after 16 months of living with 24/7 intractable burning 🔥 pain in my rectum. He treated me with dignity. I filled out real Pain Clinic intake forms. My voice mattered and he examined me properly. He detected numbness and he referred me to the expert in Minneapolis, Minnesota.

Four months later, I flew to Minneapolis standing at the back of the plane on orthopaedic shoes. I was given a great fluoroscopy guided nerve block into the nerve roots and I sat pain free for 11 hours for the first time in 20 months, This proved my nerve was in trouble.

I was sent home with a diagnosis and a treatment plan. My GP was FURIOUS! She DID NOT believe the US specialist and she refused to follow his treatment plan. I was left poly drugged with no pain control, neglected and eventually I lost normal cognitive function. By the end of 2010 I was near death.

I prayed as I could feel my life force dying. Three days after praying for help I met a registered nurse consultant. I hired and paid her to advocate for me. I needed stat decompression surgery. She procured it for me.

I had my decompression surgery four years too late. The burning pain was gone 6 months post op.

I'm 85% better. I can sit up to an hour now on a firm foam sponge toilet seat. I no longer take meds three times a day. I can’t lie pain free so I use two meds to get to sleep.

I hope you get good care. I lost a 31 year career and a job I loved, I had to use retirement savings to keep my home, pay my bills, continue to support my son and I have spent over $200.000.00 on my care. It’s been a horror story. I sold my house because I had to.

I am a blatant malpractice case and I’ll never get compensated for the abuse I received and the incorrect diagnosis. I no longer trust NA doctors.

I pray you get proper care. This disabled me at age 51. It was an athletic injury,