Hard work will pay off

[PainNoPain]

Keep up the hard work. It will pay off. You will be sent around the houses. You will rest for ages and nothing changes. You will have set backs. You will want to ride your bike thinking you can beat this , sign up at the gym and then realiaze a month in you’re back to square without phisio and meds. It’s normal. We have all been through it. Stay strong. Swim. Walk. Keep active. Light upper body weights. Enjoy everyday. It will pay off. Some of us have been suffering for years. There’s a lack of knowledge in this area of the body so keep trying different things even if google says no. One will pay off at some point….never give up. Even if your pain improves 5 percent see that as an achievement. You need to learn that you may need to live with some pain for the rest of your life like other chronic illnesses. You’ve all got this…..

[Violet M]

Well.......sometimes rest is important. But I'm glad to see you aren't lazy. Do you have pudendal neuralgia?

[PainNoPain]

Yes for about 8 years now. This pain is so evil…
It messes up in your mind. You feel alone. Nobody listens which is why people need to keep on trying different things until they find the right treatment. I went down a dark hole with drugs and alcohol due to this pain and staying active has helped me get out of that hole even if the pain is still there…I know resting helps but if it doesn’t hurt when you’re walking or swimming then rather than staying at home sitting in pain try to get up and move. If I could go back I wouldn’t have had all 3 surgeries but I was young and when you love a sport so much and it means the world to you you would do anything to get back into it….

[Violet M]

Sorry to hear you have suffered with pain so long. Three surgeries is a lot of surgeries. Were all of them pudendal nerve related?

I admire you for getting out of the drugs and alcohol hole. That must have been very difficult. I understand the need to exercise cause I'm a bit of an exercise freak myself. Swimming seems to be one of the exercises that people with pudendal neuralgia can tolerate more than other exercises. What's your favorite sport? It must be hard not being able to do it anymore.

Violet

[PainNoPain]

I played football and my life changed due to a hip injury where I carried on playing with it for over a year. I was young. Professionals wouldn’t listen and I was just getting pounded with painkillers. I finally paid for my own scans and they found a huge labral tear. By this stage I couldn’t walk , I had constant groin pain when walking and when sitting it was pulling , burning , pulsating in my perinium and penis. After the surgery it took a year to feel a bit better but the pain was still there so I hit the bike hard and started running again. No football. My groin and hips didn’t feel right and still had pudendal pain . So I had more checks done and they found another tear in my left hip and tears in my adductor muscles and pubic bon ( Sports hernia ) I got them fixed but here I am now. All for the love of sports I can walk and swim , but the pudendal pain is still there…. You trust professionals you click onto things hoping that they will fix everything when someone says it’s this…they’re the ones that get paid big bucks…I know my pain is probably due to the surgeries in my hip and pelvic area and it’s probably due to tightness so I’m working on keeping active where it does help…I will get there…
People need to keep active. Stop drinking high doses of caffeine and it will get a bit better…

[April]

Hi PNP,

I'm sorry to hear about your problems with the pn pain. Did the surgeons who did the labral tear surgeries have any ideas? Have you had a recent MRI of the pelvis? You could request a referral to a pelvic floor pt and see if they can help determine what is going on.

April

[PainNoPain]

I haven’t had a recent MRI of the pelvic floor. I have private medical cover through work so I’ll see if I’m covered. I’m in the UK will a 3T be enough to see what’s going on? So many places are self referral so won’t need a letter from doctor. I’ve also asked to be prescribed Deluxotine. Is anyone taking it for pain and does it work?

[Violet M]

A 3T MRI might show what's going on so it would be good to have if your insurance covers it. Or you could try to get an MRN (magnetic resonance neurography) instead of an MRI of the pelvic area that might be more likely to show the nerves.

Duloxetine helps some people and I think it's worth trying. I didn't have hugely successful results with it for PNE, but when I had a total knee replacement with a lot of nerve pain in my leg afterwards, duloxetine gave me amazing relief from the nerve pain. Unfortunately I had some side effects so I had to quit taking it but some people tolerate it fine.

Violet

[PainNoPain]

Started the Deluxotine and lasted 9 days on it. Started on 30mg once a day. OMG this stuff is trippy. Heavily constipated. Electric shocks going through my brain in the day. I felt tired and lazy all day long. Lost all my concentration and was sleeping about 18 hours a night….no thank you I came off it cold turkey with no side affects….i know the side affects could potentially go after your body is used to the drug but the anxiety of one day try to come it off it with all these side affects was making me sooooo anxious and nervous….

[Violet M]

I've never heard of such a severe reaction to duloxetine. I wonder if they started you on too high of a dose - but even so, it sounds like it's not the drug for you. Since you weren't on it very long hopefully it won't have too many consequences if you quit taking it suddenly.

Violet