Dear friends. For anyone with pelvic pain which is undiagnosed.
Please look up ACNES which stands for abdominal cutanous nerve entrapment syndrome.
I've suffered from abdominal / pelvic pain for the last 3 years. All tests done with urology, gynaecology, and gastroenterology came back negative.
Best online resource is "pain spa" info. I've received private treatment by Dr Krishna based in Bristol UK. 😍 I have had 2 steroid injections for diagnostic purposes and then at two separate times had two nerves ablated / burnt off. Cutanous and inguinal nerves. Now in recovery 7 weeks later. Pain is improving slowly.
There are other specialists in London and Manchester for this very rare condition. I went privately but you can be referred to these consultants via your GP for NHS treatment but it will be a long wait for treatment.
I hope this can help at least one other person on this site.
There are lots of research papers completed on this but medics do not know about this condition.
Best wishes for everyone today who is in pain. Keep positive.
Written by
Sunrach
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Wow that's fantastic. How could they tell which nerves were causing you the problem? Are there specific symptoms differing from pudendal nerve. Are you now cured? Sorry for all the questions. Whereabout in UK are you? I've been to Bristol some time ago to see Gareth Greenslade. Not sure if he's still there. Lovely man.
Unfortunately you can only determine the trapped nerves with a diagnostic steroid injection directly into the nerve to see if you get relief. But the consultant had a good idea when looking at my pics of where my crosses landed. Dr Krishna is based at the pain spa clinic and also South mead hospital in Bristol. I don't know what the symptoms of pudenal nerve issues. But for me I had chronic pain which got worse on any movement such as bending or testing or any abdominal based exercise. So for non exercise it was painful to put something in the bin and pain so bad hard to straighten back up. Or getting out of a car again it was hard to straighten back up due to pain. Exercise wise I wasn't able to run (or run fast) as that would be too painful. At one point walking was painful. I still managed to be mobile over 3 years and went to my gym which is similar to crossfit and my coach modified exercises for me so I could take part.
I had my last ablation 7 weeks ago now (maybe 8) and I'm definitely improving. It takes 4 to 6 weeks for the nerves to "die".
The pain spa website is very good for information even just to check symptoms etc. Good luck x x
I'm glad it's working for you. Nerve pain is do hard to live with. I've looked at pain Spa website. It's very informative. Wish I lived nearer. I went to the pain management centre at Frenchay but that was 14 years ago. Good luck
Hiya. I actually travelled from Newcastle upon Tyne to Bristol for 4 lots of treatment. 2 diagnostic steroid injections and 2 ablations. No one in my area is a specialist for this condition. It was worth paying for private treatment because I would have still been in chronic pain. X x x x
Hiya. My pain was located to my right lower quadrant and I could feel it with just 2 fingers. The pain would never move from this area. I had one ablation done on cutanous nerve but then I realised that another nerve must also have been entrapped - inguinal. I think what happened was that I damaged an external oblique muscle due to exercise. This muscle irritated 2 nerves and caused them to be trapped. That's my theory anyway. I'm back exercising more at the gym doing exercises I couldn't do in the last 3 years. I've only got pain perhaps 2/10 at the most on a bad day. Reduced my nerve pain medication Nortriptyline from 75mg to 30mg. Also taking ibrobrufen with lysine which I've discovered works for my pain. Wish I had known about that from the beginning because ibrobrufen didn't work on its own. Good luck x x x x
Ahh my pain is completely different. It feels like a red hot poker up inside. I have been referred to Gynaecology but told there is a minimum of two years waiting. It is daunting because my quality of life is getting worse and as in your case who knows if Gynaecology is the right specialism for me. It is fantastic that you at long last are getting the treatment you need xxx
I had nerves entrapped and they caused my pelvic pain for years. I’m glad you’ve had great support and helpful treatments. My Canadian doctors gas lighted me. I have suffered immensely. Good luck.
It’s good to hear you are diagnosed and having treatment now.
I have a very similar story. After 18 month of urology and gastro investigations I did a lot of research and thought I might have a Pudental Nerve problem. A few weeks ago I got a referal to see Dr Greenslade in Bristol who diagnosed ACNES and it’s a big relief to know what the problem is. I’ve been perscribed Nortriptyline and he recommended I try acupuncture. I’m happy to report back if I get any benefits.
If anyone is endlessly seeking diagnosis for pelvic pain ask your doctor for a referal to a pelvic pain specialist.
Hi Jules. Wow that's such an amazing nhs story. I'm pleased for you. Good luck on the meds. I would defo recommend Dulcolax® Adult Pico Liquid and Dulcolax Twelve Plus pico liquid contain sodium picosulfate. For the short-term relief of occasional constipation.I tried acupuncture but it made my pain much worse but everyone is different. Worth trying. However I did find tens machine very effective.
Hopefully they can offer some treatment such as ablation.
I had to go private and well worth it. Dr Greenslade no longer sees NHS patients. A very nice and knowledgable doc. He told me he sees at least 3 people a month with ACNES many have undergone numerous investigations including physiological tests. As if it’s all in the head. I don’t think so.
The meds are not agreeing with me at all. Lots of side effects but they have helped the pain. I’ve stopped taking them at present as I can’t function normally. I’m confused, get headaches and terrible nausea. I will need to talk to my GP I think.
I fine the pain much worse when I’m stressed, when sitting for a long period or travelling in a car. What do you find triggers your pain?
Jules
How was yours diagnosed? Thru mri or cat scan? Sorry just read other comments just now.Thank you for info.🙂
I had both MRI and CT scan but neither showed the ACNES and were done to look at the bladder which was originally the suspected source of pain. I was actually diagnosed using Carnetts test. acnesawareness.org/symptoms....
I was put onto Nortriptyline. This helped the pain but caused so many side effects (nausea, headache, sleepy all the time, no energy, confusion etc). I've stopped taking it and decided to try non medication interventions. I've bought the book 'heal pelvic pain' by Amy Stein which so many people on this site have recommended and it looks really good, but requires discipline to do the exercises every day. I've also had a Bowen Therapy treatment which has definitely helped and will have another next week. (I will report if this helps further) I'm determined to get rid of this pain ASAP and starting with exercise and alternative therapies seems best rather than taking dangerous medications or having injections. Perhaps I'm fortunate that my pain isn't that bad any more. Others might feel that exercises and stretching is not an option as it takes so long to see the benefits and their pain may not allow such activity anyway.
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