I have been suffering from pelvic pain for 7 years since hysterectomy.I am 67 and this has ruined my retirement plans,

I have had numerous pudendal nerve blocks which no longer work. Have been diagnosed privately by Dr Baranowski as having pudendal neuralgia with a 'muscle' component. Told needed to be referred on NHS to UCH to get 'full' treatment package. this has happened but waiting times are horrendous (will be nearly 2 years from referral to seeing psychologist). Am I anyway pinning too much hope that physiotherapy and CBT will help me? Should I be pushing instead for a neural modulation inplant? Btw-I live 300 miles from London anyway!

6 Replies

  • Hello, I haven't been living with pain as long as you, but I am seeing a pain psychologist - helpful to a point, but doesn't stop the pain...some of the strategies help me get to sleep a lot more easily and have a more positive outlook on good days. But all the work has to come from internal and mental strength and some days, I just don't have that.

  • It makes me so mad when we get told nothing we can do.I live in Liverpool went to see psychologist tried it all .Ten years of hell women's hospital nothing we can do referred me to pain specailist Doc Baranowski yes me to cost me £600 just to see him plus travel .their making a fortune out of us women .out of my mind by this time .Then I came across a doc that I consider changed my life YES he said I Can help.I couldn't believe what I was hearing . Mr D Rowlands Murrayfeid Hospital . He done Key hole surg to remove addeshions that were all over my pelvic.you CANNOT see addeshions on XRay ,C.TScan or M.R I scan .You have just got to find someone that dosent think your mad .I was 60 last week he gave me my life back.best of luck and don't give up on finding the right person to help you.

  • Thank you. I could go on at length about costs-wait til you start talking about injections! I had adhesions removed early on. My problem seems to be screwed up nerve signals but there doesnt seem to be means of unscrambling them! I keep looking and asking

  • I had chemoradiotherapy and HDR brachytherapy to eliminate a stage 2b cervical cancer tumour 3 years ago. The treatment eliminated the tumour but I was in severe pelvic pain until very recently. I was on high doses of opioids. The latest was fentanyl patches 100 mcg/hr via my pain clinic. Nothing stopped the pain until I was referred to a specialist in palliative medicine in April 2013. He diagnosed pain wind-up and prescribed oral ketamine 2.5 ml three-four times daily. Within 15 days, the pain was virtually eliminated. I stopped using my wheelchair and now I walk my dogs and do other ordinary things. I'm not in bed for hours every day, trying to keep the pain under control.

    I think women like us get a poor deal when it comes to pain management. Few clinicians bother much about pain unless they're palliative medicine specialists. I was very fortunate to be referred to one, which is unusual unless you're dying and need end of life care. My oncologist got very worried that I was deteriorating because of my unstoppable pain reaction to cancer treatment. I don't think it's very unusual. Women are very good at coping with severe pain. We're built to withstand labour pains after all. The closest men get to experiencing this pain is kidney stones. I've had two children and kidney stones. Both are excruciating but at least women usually get a lovely baby at the end of labour.

    Ask your surgeon if you can take oral ketamine to switch off any pain response where there is no obvious pain stimulus. That's the central nervous system going into overdrive. It may not help you but my reply may be useful for other people reading your post. I wish you all the best with your struggle against pelvic pain.

  • Thank you for your thoughts. I have had ketamine-unfortunately I was given so many opiods that I have ended up with osteoporosis as well(a side effect noone tells you about. I could go on about being given cocktails of medicines with no thought as to side effects. At one stage I was diagnosed with Parkinsons because of drug induced tremor. I dont have Parkinsons fortunately for me. it is important to grill doctors about the drugs you are being given. Just another spin off of our problems

  • Dont wait,don't rely on stem implant.Search for Neurosurgeons who do entrapment surgery.I had psychotherapy,holistic,homeopathic,and even mountain drs.and healers.This disease is not in our heads and I am convinced one cannot live with this pain! Go to director@pnfdn.org or pudendal hope.com.

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