Living with Pudendal Neuralgia

Read about the author Samantha Evans

Have you ever heard of Pudendal Neuralgia? Even though I have a nursing background, neither had I until I was invited to join a Facebook group.

What is Pudendal Neuralgia?

Pudendal neuralgia, sometimes called pudendal nerve entrapment or Alcock canal syndrome, is long-term pelvic pain that originates from damage or irritation of the pudendal nerve – a main nerve in the pelvis. The pudendal nerve supplies areas including the: lower buttocks area between the buttocks and genitals (perineum) area around the anus and rectum. Your pudendal nerve runs from your lower back, along your pelvic floor muscles, out to your perineum (the skin between your pubic bone and your tail bone). It leads to pain in the clitoris/penis, vulva/scrotum, perineum, and rectum, especially when sitting.

Other symptoms include numbness and pins and needles in the pelvic area, increased sensitivity to pain, even a light touch or wearing clothes, a feeling as if there is a swelling in your perineum, needing to urinate more often or urgency, pain during sex, difficulty reaching orgasm and erectile dysfunction in men ( NHS.UK 2019)

How prevalent is it?

The prevalence of pudendal neuralgia is unknown, although some have estimated a prevalence of 1/100,000 people. Spinosa et al ( Rev Medical Suisse 2006) documented an incidence of 1% in the general population, affecting women more than men.

What causes it?

Sometimes no reason can be found, but these are the common causes:

• Prolonged sitting, cycling, horse riding or constipation (usually for months or years)
• A broken bone in the pelvis
• Damage to the pudendal nerve during childbirth – this may improve after a few months
• Sexual Abuse
• Vaginal Hysterectomy
• Rectocele & Anterior Prolapse
• Repair of the Perineum
• Trauma from Surgery
• Car Accident
• A Fall

Can it be treated?

Not all the possible treatments are widely available on the NHS, but these treatments can help:

• Avoiding things that make the pain worse, such as cycling, constipation or prolonged sitting – it may help to use a special cushion with a gap down the middle when sitting and try constipation treatments
• Medicines to alter the pain – these will normally be special medicines for nerve pain, rather than ordinary painkillers like paracetamol
• Physiotherapy – a pelvic health physiotherapist can teach you exercises to relax your pelvic floor muscles and other muscles that can irritate the pudendal nerve
• Painkilling injections – injections of local anaesthetic and steroid medication may relieve the pain for a few months at a time
• Decompression surgery – if something is pressing on the pudendal nerve, such as a piece of tissue, surgery to move it away from the nerve may help improve your pain
• Nerve stimulation – a small device is surgically implanted under the skin to deliver mild electrical impulses to the nerve and interrupt pain signals sent to the brain
• You can also be referred to a specialist NHS pain management team or pain management programme for support and advice about treatment. ( NHS.UK 2019)

If you need a pelvic examination or cervical screening test, speak to your GP/nurse/gynaecologist and tell them about your concerns. These useful tips may help too.

Marion Jones’ story

Marion Jones is a remarkable inspirational woman who had kindly shared her experience of this condition that is little researched or even known about in the medical world. Despite living in constant pain every day, she is a tireless passionate campaigner raising awareness to educate and inform the general public and healthcare professionals. This is her story.

I am Marion Jones, a 65-year-old lady, born in West Sussex and have spent most of my working life in a high street bank and then at my local hospital in Human Resources.

Whilst working at the hospital I found out that I had a rectocele prolapse which needed surgery. A rectocele prolapse, also known as a posterior vaginal prolapse, occurs when the wall of fibrous tissue that separates the rectum from the vagina weakens, which allows the rectum to bulge into the vagina.

My consultant gynaecologist said that they would do a vaginal hysterectomy (whereby the womb and cervix are removed through an incision made in the top of the vagina) at the same time as the repair. As he was the Head Consultant in Womans Health, who was I to question that?

Following the operation, I felt a tremendous amount of pain both in the vagina and anus. When I questioned it, I was told it was early days and it would soon settle down, but this was the beginning of my journey to find out what was wrong with me as I was still suffering immense pain every waking minute.

I couldn’t sit down or wear underwear. It hurt too much, throbbing, burning and stabbing in both the vagina and anus. I wanted this pain to just go. It was debilitating, but I needed to get back to work. The thought of living like this was heartbreaking after leading an active life, travelling, meeting friends for meals and going to concerts and the cinema. Sadly, all these things came to a standstill.

I asked my doctor about a second opinion, and she referred me to Birmingham City Hospital where I was operated on within 2 weeks for a vestibulectomy – this is a procedure which removes the tender areas of the skin within the vestibule (the area between the lower vagina and just within the vulva), botox to the anus ( this helps to relax the muscles) and Bartholin glands ( these are two pea sized compound alveolar glands located slightly posterior and to the left and right of the opening of the vagina, which secrete mucus to lubricate the vagina) were infected. Unfortunately, all this did not help the pain.

The consultant then referred me to the Vulva specialist, who diagnosed me with Pudendal Neuralgia from touching the sides of the vagina walls. He not only gave me a name for my agonising pain, but he also told me he was sure that this was caused by the original operation. I was under his care for a few years, trying different medication and nerve blocks until he told me there was nothing else he could do for me.

I then was transferred to the Pain Management Department at the Queen Elizabeth Hospital in Birmingham where I was told I had tried everything possible but the University College London Hospital had a good reputation for dealing with nerve pain, so I grabbed the chance of going there as a last resort.

Whilst waiting for my first appointment, I discovered that an old biopsy site had got bigger and would bleed when wiped, so I was again referred back to my local hospital for investigation. I had the outpatients’ appointment, but the consultant was unable to touch me due to the pain, so she decided to admit me and do the procedure under General Anaesthetic.

I tried to keep calm on the day of the procedure, I had all the necessary tests and was kitted out ready for theatre when a nurse came and informed me that the Consultant wanted to exam me before I went under. I told her this wasn’t what was agreed, and she said I would need to have a talk with the consultant. I arrived at theatre and the consultant came to me and said, “I just want to give you an examination before we put you under General Anaesthetic”. I protested that this would cause me immense pain, but her reply was “It will all be fine, just like an outpatients department appointment, it won’t hurt at all” I saw she had a speculum in her hand which she then proceeded to push into the vagina. I grabbed hold of the sides of the theatre bed and screamed……

She looked at me and said, “It can’t possibly hurt, I have used the smallest speculum” By this time, rage was building up inside me, and I was shaking with fear. I protested again, saying that this was not what I had agreed to. She then came up beside me and said, “I think all this pain is psychological”!!!

It was at that moment I decided I was going to make a formal complaint against her. I had suffered 8 years of this pain and how dare she say it was all in my head. I made my complaint and was pleased with the outcome as I had educated one hospital about the condition Pudendal Neuralgia.

My appointment for University College London Hospital arrived, and I set off on the train with a friend ( I needed to be accompanied because I am registered partially sighted). I saw a friendly and sympathetic consultant who didn’t want to exam me due to the pain I would be in when travelling home, but she did.

She booked me in for more nerve blocks which failed to work at all, not even for a day, so she then prescribed me a drug called Tapendrol. In order to take this drug, I needed to come off Duloxetine which is a muscle relaxant/antidepressant. I did this but found that the Tapendrol gave me side effects such as constant itching all over the body and insomnia. After trying antihistamines, my doctor decided I should come off the drug.

A few days later, I sat with nearly 300 pills in front of me, ready to take. I had no reserves left in my body to cope with the pain any more. I wanted out, gone…..

My neighbour messaged me to see how I was, which was unusual for her, but thankfully she did, and she came and sat with me and called 111. The paramedics arrived, and I went to A & E where I had to sit (due to lack of beds) for over 10 hours before a lady from the Crisis Team came and talked to me. I was under their care for 2 weeks, then I received counselling to ensure it didn’t happen again.

What now?

This is the end of the road for me. I have been everywhere except overseas, tried everything, and I still have no relief from the pain. I was put back on Duloxetine to bring my mood back to where it was before. I am in as much pain now as I was when I was taking all the drugs prescribed so what’s the point?

I just live with it now, no more chasing cures, I am going to live the rest of my life the best I can but without being drugged up to the nines.

Since my mental breakdown, I have actively campaigned for more awareness, research and training in the NHS for this condition. There are nearly 800 men and women in a face book group suffering from this condition. It may take a while to achieve, but I won’t give up. The medical profession needs to be taught more about the pelvic area during their medical school because nobody should suffer pain like this

Pudendal means “To be ashamed” in Latin. I am not ashamed to talk about this condition. It is not a Taboo subject.

Thank you

I want to say a huge thank you to Marion for sharing her harrowing experience, she is one of the bravest people I have met since I started writing and talking about sexual health, intimacy and pleasure. She is using her experience to educate, inform and encourage more research into this less well-known condition which is life changing for many people. I hope by reading Marion’s story, someone who has these symptoms seeks medical advice.

The more we can raise awareness, the more medical professionals will hopefully listen, learn and never ever say “it’s all in your head” a phrase so many women have been told when there seems to be no reason for their pain!

I really hope that Marion does find an effective treatment, but until then, we will continue to raise awareness with her, wherever we can, to help educate the world about Pudendal Neuralgia

Credit to Emma Norman, founder of lichenssclerosusawareness for the image

Marion has written a brilliant book called Bits & Butts : An A-Z of Pudendal Neuralgia available on Amazon. This book is an excellent resource for anyone working in pelvic health, gynaecology, obstetrics and urology in addition to anyone living with the condition

Useful websites
Vulval Pain Society: www.vulvalpainsociety.org
Royal College of Obstetricians and Gynaecologists: www.rcog.org.uk
Pelvic, Obstetric and Gynaecology Physiotherapy : https://pogp.csp.org.uk
Chartered Society of Physiotherapy: www.csp.org.uk
College of Sexual and Relationship Therapists : www.cosrt.org.uk