‘It’s all psychological’: dismissed in agony with pudendal neuralgia and vulvodynia

Guest post by Marion Jones

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MarionMy life has changed considerably since that day in August 2011 when I went under the knife at my local hospital. I had been diagnosed with a rectocele prolapse.

The consultant who performed the operation was Head of Obstetrics & Gynaecology, so I felt confident in his hands that everything would work out well.

At my outpatients appointment, before the operation, I was told that it was normal practice to perform a hysterectomy at the same time. Why? I’ve no idea, but I thought they knew best.

After coming round from the operation, I was told that I’d also needed a repair for a front prolapse – so basically three major operations in one hit. I struggled in the coming weeks with my recovery, and one night I ended up at A&E because I was in so much pain. There it was discovered that one of the stitches used at the entrance to the vagina hadn’t dissolved.

After being treated at A&E, the pain inside continued, and eventually I asked my GP to refer me to another hospital for a second opinion. Two weeks later, an appointment arrived for me to go to The City Hospital in Birmingham.

At that appointment the consultant examined me and found I had inflamed and infected Batholin Glands throbbing in the rear entrance. She would treat this using Botox, and I would also need a vestibulectomy. I was given an appointment date there and then, for ten days later.

After the operation I was told it had gone well, but that I would need to stay in overnight as I lived alone. A friend drove to Birmingham the next morning to pick me up, and my journey back home was spent laying down on the back seat.

I had several outpatients appointments following that operation, but still suffered pain at the entrance to my vagina and throbbing in the back entrance. My consultant was at a loss as to why I hadn’t improved, and called the vulva specialist to come and examine me.

It was at that point I was finally given a name for my condition: Pudendal Neuralgia (a type of chronic pelvic pain that originates from damage or irritation of the pudendal nerve in the pelvis) and Vulvodynia (persistent, unexplained pain in the vulva). The vulva consultant commented that it was more than likely caused by the very first operation I’d had.

For the next five years they tried everything to help me with the pain. I felt it every waking hour, with more pain when I was sitting down. I started searching for a cushion that could help me – one with a gap in the middle, so I could sit comfortably without anything coming into contact with my private parts. Needless to say I couldn’t find what I was looking for, so I set to and made one myself.

Since that day I have made more than 30 of these cushions for women who suffer from this same condition. I’d joined a Facebook support group for Pudendal Neuralgia, but found that most of the women were from the USA – and their medical procedures and medication were very different from the UK – so another lady suggested setting up our own group, for UK sufferers.

This group has gone from strength to strength, and helped to raise awareness of the condition, which women find so hard to get diagnosed. It quickly became apparent to me that the medical profession know very little about it, and students are not taught about this complex area in the pelvis, which is covered in nerve endings, at university.

Spring forward to December 2018, and I once again sought help for the pain. This time I attended a sexual health clinic, purely because I couldn’t get an appointment to see my GP for love nor money.

The doctor I saw there knew about Pudendal Neuralgia and examined me, but was more concerned about an old biopsy site that would start to bleed when touched. The biopsy had been taken over 18 months earlier, so she was concerned about why the site hadn’t healed over and wanted me to return to my local hospital for further investigations.

I began to think my life would be full of attending hospital appointments, and that I’d never work again.

I attended yet another outpatients appointment, where the consultant tried to insert a speculum into my vagina in order to give me a thorough examination. As soon as she touched me she knew from my reaction that I was in a hell of a lot of pain. She told me she thought she could feel lumps on the inside of the vagina, but was unable to examine me properly due to the pain.

Instead, therefore, she said she was going to arrange for me to have an investigation under general anaesthetic. Unfortunately for me, neither she nor the registrar made any notes on my file indicating that this was her decision.

Come the morning of procedure, I arrived at the hospital early and sat reading until the Day Case Unit was open. I tried to remain calm, along with all the other ladies who had been booked in that day.

I was seen by the anaesthetist and consultant to discuss the procedure, and at no point was I told that the consultant was going to examine me firstly without the general anaesthetic! It wasn’t until I was walking to theatre that the theatre nurse told me the consultant wanted a word with me before she started the procedure.

Imagine the scene: I am laying on a theatre bed, feeling vulnerable, when the consultant announces she wants to examine me before I’m anaesthetised. I told her I was in so much pain down there, which was why it had been decided at the outpatients appointment that I should have it all done under general anaesthetic. She just said: “Don’t worry, it will just be like a smear test or an outpatients appointment.”

It was at that point she tried to put the speculum into me. I tensed up in pain and grabbed the sides of the bed. “You can’t be in pain, I have used the smallest speculum,” she commented – to which I replied: “But I am, and that’s the reason why I’m here today to have it done under general anaesthetic.” Her next few words will stay with me forever:

“I think your problem is that it’s all psychological.”

Once recovered, I felt my anger at what she’d said to me starting to simmer. I didn’t want those words ever to be said to any other woman who suffers from this condition. I wrote a letter of complaint to the hospital, copying in my local MP.

I had suffered more than enough pain in these eight years, and there was no way I was going to accept what she had said. But it made me question: did other people think the same? I asked friends and family who had been there for me all the way through; they all said they could see the pain written on my face every day, and they wished they could help me.

I have now had a response to my complaint, in which the consultant apologised for her “choice of words” if they had “caused distress”. Her main aim, she said, was not to upset me but rather to show empathy and manage my condition appropriately!

I have written back to the hospital, requesting a face-to-face appointment to discuss this response. If the Gynaecology department do not know what Pudendal Neuralgia and Vulvodynia are, they soon will do by the time I have finished with them.

All I want is for this never to happen to any other woman again.


UPDATE, 31 MAY:

My day started off with a train trip to the University Birmingham for Pelvic physio. I’m sure she expects me to be swinging from a lamp shade in a few months! Soon an hour was up and I was back on the train to Hereford for my meeting with the clinical lead, the service manager of the Gynaecology Department, and the head of PALS (Patient Advice and Liaison Service). It was meeting I was dreading, but I knew it had to be done – not only for myself but for hundreds if not thousands of other women who are suffering from pudendal neuralgia and vulvodynia and not believed or helped.

It had been four months since I had the procedure during which I was told “It’s all psychological”. I was angry and upset, and I couldn’t let this statement pass by, which steered me on to make a complaint against that consultant. Communication between myself and the hospital took place, and I also asked my local MP Jesse Norman for his support, which I am pleased to say I received.

I had asked for a response in writing to my complaint, but I also wanted a face-to-face meeting to discuss how I felt and what I wanted. And now here I was. It wasn’t about money. I wanted certain things to change in the NHS. I accepted the consultant’s apology, and then told them what outcome I wanted from my complaint: I simply wanted that phrase never to be uttered again in that department. The clinical lead said he would speak with everyone, and assured me it won’t be happening again. He was pleased I had taken the time and effort to complain, without which he wouldn’t have known this kind of thing was going on.

I then went on to talk about the training of students at medical school. Very little time is spent teaching medical students about nerves and the pelvic area, especially that of a female. I want to get that changed. The clinical lead admitted he knew very little about either pudendal neuralgia or vulvodynia. His service manager knew nothing about the conditions and had never heard of them. He agreed to arrange for a team talk, where a doctor will research the conditions and then give a presentation to the department.

Lastly I had prepared well for the meeting and printed out several leaflets, which I actually wanted to be handed to the consultant. The service manager took responsibility for these and said she would take copies of them to be handed out to staff, put up on notice boards, and left in the outpatients department for patients to read. I hope this may help some patients to possibly identify symptoms that haven’t been diagnosed by their doctor or consultants!

Now what? Do I relax and think job done? No not by a long chalk. Members in my Facebook support group have not only encouraged me all the way on this journey but now want give those leaflets to their doctor, surgery and hospital. With over 600 members that covers a lot of the country and I hope they get the same response as me. Next I want to get my story out there in the media, so I can say it’s not a taboo subject, it’s not psychological, it’s REAL pain.

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