Amanda's Story

My pudendal nerve problems began immediately after a vaginal hysterectomy in March, 2003.  This surgery included a pelvic floor repair, bladder repair and right ovary removal.  Immediately following my surgery, I felt a burning fire in my perineum, urethra and could not sit at all without feeling like I had a red hot poker inside me.  My right hip was also very painful and lying on this side caused extreme pain and pulsing; my bladder was totally irritated despite no sign of infection.

I left the hospital and rested at home, but was at my general practitioner’s office within a few weeks complaining of increased pain and being unable to sit.  I was admitted to another hospital and had many consultants looking after me, including an endocrinologist, rheumatologist, neurologist, gynecologist, pain specialist, and an orthopaedic surgeon. I had many diagnostic tests including MRI, mammogram, blood work, x-rays and several different caudal nerve blocks, facet joint blocks, and intense physiotherapy.

After 4 weeks, the conclusion of these physicians was that I had issues relating to my pudendal nerve however, they had no experience with this condition.  I was prescribed strong medication and discharged only to be seen by another gynecologist in a different hospital merely three weeks later.

At this point, I researched my symptoms on the internet and came across several forums and a lot of valuable information about this condition and learned of other sufferers. I live in Ireland and it was a fantastic boost for me to find out that there were other people in the world living with this little known condition.  This certainly helped me realize that I was not isolated in my plight to get a diagnosis and treatment for my pain.

Again pursuing treatment for my condition and relief for my pain, this new gynaecologist admitted me for an unguided pudendal nerve block.  This eliminated my pain for 12 hours, indicating that my pain was definitely coming from the nerve. I was then referred to a team of doctors led by Professor Robert, a doctor in Nantes, France that specializes in the treatment of pudendal neuralgia and pudendal nerve entrapment.   I travelled to Nantes in June, 2004 and had a Pudendal Nerve Motor Latency Test (PNMLT) and a CT Guided Nerve Block. After reviewing my symptoms (which were disabling at this stage), test results and previous medical history, Professor Robert and his team concluded that I had indeed a severe entrapment of the pudendal nerve with evidence of major nerve damage to the axonal and myelin sheath at Alcock’s Canal.  Also, I was diagnosed with meralgia paresthetica of the lateral cutaneous nerve of the thigh.

I returned to Nantes in September, 2004, and had bi-lateral transgluteal surgery and also a decompression of the lateral cutaneous nerve of the thigh. This showed that all branches of my pudendal nerve were severely damaged and entrapped in several locations. The lateral cutaneous nerve was also badly trapped and damaged.

My symptoms eased a little after surgery, however my urinary function regressed and continence became an issue for me. By 3 months following my decompression surgery, all of my symptoms continued and my pain level in these areas had increased.  I also developed CRPS. Hypersensitivity had spread to all areas of the pelvis and I was forced to use painkillers and ice routinely to try to get some relief. I am unable to drive my car as sitting caused such spasms, and every movement shot through me like a knife.

I returned to Nantes in December, 2004, and had a follow up nerve block. This did not relieve any of my symptoms for more than a brief period.  I returned again in February, 2005, and had another nerve block which contained medication to try to calm the hypersensitivity in the whole pelvic region.  By the summer of 2005, my symptoms were disabling and I again consulted the doctors in Nantes.  In August, they admitted me into the hospital and I had a 5 day continuous caudal epidural and also an infusion of ketamine to try to ease my symptoms. At the time, this treatment gave me great relief, however, this relief was short lived.

In January, 2006, I returned to Nantes and was hospitalized again.  This time, I was in the hospital for 5 days with a Ketamine infusion as well as intra-thecal administration of many medications, including Ketamine, Zylocaine and Morphine.  This was injected directly into the area surrounding the nerve via the Alcocks Canal. This greatly reduced my pain (from 8 out of 10 to 2 out of 10). It felt great, but my pain increased once again after the treatment was completed.  While there, I also had urodynamic testing which proved that I do not have Interstitial Cystitis and that the hypersensitivity in my bladder is as a result of dysfunction of the pudendal nerve. 

At this stage it was recommended that I try the spinal stimulator at the S2 / S3 branch of the pudendal nerve to see if this would ease some of my pain and also the bladder irritation. If the trial worked, I was to have a stimulator permanently implanted. If it does not work, Professor Robert recommended that I had a retrograde stimulator implanted into the S1 through S4 roots of the nerve. This procedure I hoped would be carried out in Nantes but this was not to be the case. After more researching and several visits to my Pain Specialist in Ireland I was finally referred to see Dr Jean Pierre Van Buyten in Belgium for a consultation regarding stimulation. This happened in January 2006 and I met with this doctor and team many more times for testing and evaluation. In May 2007 I finally had a trial of a retrograde neurostimulator which lasted for 6 weeks, the results were very helpful to my condition so I decided to go ahead with the implantation in July 2007. I was implanted with a Medtronic Restore Ultra Neurostimulator and while it was tough to recover from this surgery the results are very good and continued to this day. This treatment is not a cure or a miracle but it certainly does help me and I would not like to be without it. It has disadvantages due to recharging and when you travel with an implanted device it can cause for a lot of tension at airports etc.

Professor Robert and his team of wonderful doctors have been steadfast in their efforts to help me control this pain.  They are a very caring group of doctors who are genuinely interested in the after care of their patients. They have given me hope of some relief without guarantees of a total cure.  They are treating me with new therapies all the time and for this I am grateful.

Dr Van Buyten and his team are fantastic as they generally see the results of many failed surgeries and they have to pick up the pieces to try to help patients like me who had failed attempts at many treatments. I am now a lifelong patient of this team as I have to travel to Belgium regularly to have my neurostimulator checked out.

The one benefit of having this condition is that I have met so many wonderful people via the forums who truly do understand what I am going through.  These people are a great source of comfort to me and I try to help others as much as I can.  I remember clearly the frustration of I had in being diagnosed with and learning about pudendal neuralgia.

I remain in pain every minute of every day, with continuous bladder irritability, pain in the vaginal, anal and vulval areas, and I still cannot sit for any length of time. Bowel movements cause severe pain if constipation is an issue, so I have to carefully monitor my diet accordingly.  I have heightened sensitivity in the whole pelvic region such that clothing and water cause very unpleasant sensations.

Before I had pudendal nerve entrapment, I was a vibrant 39 year-old, active mother of two daughters; however due to the stress I have now lost my marriage and my vitality due to having to rest often and use ice a lot to try to soothe my pain.