I had my ovaries removed in February 2020 via laparoscopy. I had had laparascopic diathermy and laser treatment for endometriosis in my 20s and 30s, but eventually taking the progesterone only pill meant I had no periods at all which was a massive result for me and I took them until I was 52.
Unfortunately, I was then diagnosed with breast cancer which was driven by oestrogen and progesterone, and had to stop taking them. No periods started, so I assumed i'd gone past menopause, but after my cancer lumpectory the consultant prescribed tamoxifen, which had the result of causing continuous period like pain. I switched to various alternative hormone suppressants, all which had side effects and in the end had the oophorectomy. All was fine for about a year, and then I started to get the period like pain again in March 2021.
I saw another gynacologist who offered a hysterectomy but also referred me to a pain consultant. I turned down the hysterectomy until I'd seen the pain consultant and she diagnosed Abdominal Cutaneous Nerve entrapment syndrome (ACNES), whereby abdominal surgery (in my case about 5-6 surgeries in the same place) damages the nerves in the abdominal wall, causing burning and shooting pains. This feels much like endometriosis in fact, and I wondered if bits of the endometrium had stuck to the nerves all those years ago causing the pain then. But now the pain is constant, not just one week a month.
I've had 2x ultrasound guided nerve blocks, the first of which didn't work, and the second worked for 2 months. Then I had pulsed radiofrequency which had no effect at all. That was a year ago, and now the consultant wants to "treat the abdominal pelvic pain by approaching the hypogastric plexus", but won't do the procedure without a face to face appointment first to get my informed consent. Needless to say, the hospital has me on a waiting list but can't tell me where I am on it and whether I'm likely to to get the appointment to talk about the treatment in the current year or even the next 5. My complaint about this is into it's 5th month and I've contacted my MP now. I'd go private, but this seems such a rare condition that I don't think there are too many consultants who could do this in the UK.
I've tried 7 weeks of accupuncture, 2x 2 month rounds of homeopathy, 10 weeks of capsaicin cream, TENS, heat packs, cool packs, and now am taking paracetamol, ibruprofen and gabapentin. None of these seem to work that well. I'm somewhat concerned that even if I get to see the consultant and get the treatment, that won't work either. My questions are:
Has anyone had ACNES and had this 'approaching the hypogastric' treatment? Which is apparently via the spine so sounds pretty high risk. Did it work?
Has anyone tried anything else that has worked for ACNES?
Thanks
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Jh987
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I am really sorry to hear how much you are having to deal with. My son has ACNES, although by the sounds of it it is further up from yours. He is in his 20s and when he said he had stomach pain they all immediately thought gastro pain. It was the endoscopist that suggested that it was positional pain due to his connective tissue disorder but they all ignored her and me. It was only when I put my foot down and built up an argument to support nerve entrapment hypothesis that they finally changed their track. (my son tells people I am doing a PhD in argument so don't cross me, but it is actually in argumentation!) But it took us two years to get there.
It was the pain consultant who diagnosed it in the end. However, she was reluctant to go down the injection route because the pain for my son is intermittent. It is only when he is in certain positions that he gets the pain.
So I can't really help you with your questions. I just wanted to say that yes, there is someone else out there with ACNES, and yes, we understand your pain.
As a PhD student I have access to peer reviewed papers including ones behind paywalls. There is a review paper that you might find useful. If you can't get hold of the whole paper at your local library or similar, message me.
"A systematic review of the treatment for abdominal cutaneous nerve entrapment syndrome. Oor, J.E., Ünlü, Ç. and Hazebroek, E.J., 2016. The American Journal of Surgery, 212(1), pp.165-174."
Thanks for your reply cyberbarn. It's good to hear from someone who knows someone who has been diagnosed with this, because despite several papers, including papers reviewing multiple other papers, it's not a widely known about condition. You say your son has been diagnosed with it, but has not had the injections because the pain is intermittent. So has he had any treatment, or is he just taking painkillers? Do the painkillers kill little, some, or most of the pain? Which painkillers?
I'm afraid I scared myself earlier by looking at a paper with graphic photos of the neurectomy:
But the link in your second article had a helpful flowchart showing the stages and options when lidocaine and steroids, then pulsed radiofrequency don't work. It looks like there are a few other options before nerve surgery, although I can't see the one my consultant suggested. I'm not too keen on further surgery, given that there doesn't seem to be much attention to nerve damage when surgeons cut.
I've also realised that I got the name wrong, and it's actually Anterior cutaneous nerve entrapment syndrome, not abdominal cutaneous... Oops. Hopefully there may be someone else out there who has experience of the treatments. And argumentative is fine, given the lack of urgency in the NHS today
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