Never in a million years did I imagine I would be in this position, let alone telling my intimate story on a public forum but unfortunately the time has come.
For the last 25 years I have lived with Social Anxiety Disorder, this is something I have managed through its ups and downs behind closed doors. Currently, with everything that has happened it is at its worst which makes putting my story out there for all to see even more challenging.
I lost my virginity at age 19. Despite the support of a very caring boyfriend sex was never easy for me and unfortunately during our time together it became impossible. Sadly, in my mid-20’s this contributed to the end of my relationship, which at the time was completely devastating.
I repeatedly approached my GP asking for help, she was always quite dismissive and after a gynaecologist advised there was nothing wrong with me physically, she refused to listen, deeming it psychological, even though I insisted it wasn’t.
On the last occasion I tried to get help from her, I walked into her room and was sobbing before I even sat down. I told her how this issue was affecting my life, causing me great distress. She said to me, “it’s not considered important on the NHS and I’ve got other patients to see.” I was stunned into silence. I walked out of the surgery in a daze, feeling completely alone, like I had nowhere else to turn.
The years rolled past, and I tried to embrace my single life, making jokes with friends about the length of time I had been unattached. I watched everyone around me get married and start families, all the while I felt unable to even entertain the idea of a relationship. It was heart-breaking. My body did not work properly, I was broken as a woman, defective. I felt that no man would want me.
In my late 20’s, early 30’s, I started getting back problems, thankfully I now had private health care through work. I saw the physio over a number of years and had trusted I was receiving the best treatment, but the pain got so bad I insisted on an MRI. It was a good job I did.
When the results came through, I didn’t need the surgeon to point out what was wrong, my lower disc had come out so far there was no way that sucker was going back in! The only option was an operation to cut the protruding section away.
A year after the operation in November 2011, my back was playing up again causing me pain. I made an appointment with a spinal specialist physio, my faith in the previous guy had been exhausted.
The treatment was vastly different this time, not so aggressive. There was no twisting and snapping and cracking me in half. He started the exam with me laying on my back, then he gently moved each knee towards my chest. My left knee did not get close and I joked with him “oh it doesn’t go any further.” I could tell by the look on his face that this was not a good thing. It was at this point he advised I will need an MRI scan because I have a severe impingement of my left hip. Completely shocked I chuckled and asked how severe it was? He replied, the worst he has ever seen, which really was not what I wanted to hear. He then explained to me this was causing my back pain as it was pushing out my posture. He was shocked my previous physio had missed it, he said it was glaringly obvious.
Suddenly alarm bells went off in my head!
I found it excruciating trying to get the words out but eventually asked the physio if this could be the reason for my difficulties with sex. He replied saying, the impingement was so severe he is amazed I was able to have sex at all. Ever.
At this point I burst into tears and just sobbed. It was not all in my head. It was not psychological; it was a physical problem. Basically, my legs don’t open very far because there’s bone in the way and because of this the muscles in my groin are short and tight making penetration at first difficult, then impossible. I couldn’t stop crying as I explained to the physio how difficult the last 10 years had been and how it had made me feel.
When I met with the surgeon to discuss my MRI results and he reconfirmed the severity of my hip impingement. He again stated it was not a psychological problem, it was physical. He too was amazed I had ever managed sexual penetration.
Again, I sobbed. I sobbed whilst detailing how my GP had treated me, whilst telling him it had been 10 years since my last relationship. I sobbed retelling how I had watched all my friends and family marry and have children. I told him how I longed to meet someone and have a full sexual relationship.
I cried a lot over the next few months. I felt a deep grief for the years lost and for the failure I had felt I was, however, there was now a but and it was a big but, there was now hope. I could think about dating again, I could see the future I wanted in front of me. Even though it would be difficult, I now understood sex would be possible.
My operation went ahead a few months later, the 8th February 2012 to be precise, I was now age 34.
A while after I came around, due to all the drugs in my system I threw up and not being in full control of all my bodily functions yet, accidentally pee-d. My timing was impeccable as ever, just as my sister and her boyfriend walked through the door. I immediately made a joke and yelled ‘don’t come in yet, I’ve just wet myself.’ I could hear them laughing as they about turned.
The nurse helped me tidy things up, but I got a bit of a shock when I dried myself, I nearly jumped through the roof. The pain in my clitoral region was absolutely excruciating.
As well as my sister, my parents were also at the hospital. When they came back in the room, I called my Mum over and whispered to her very awkwardly questioning why I would be in so much pain between my legs? Mum was also confused and concerned.
Later, when the surgeon visited my bedside, I was utterly mortified to ask him why I was in so much pain in my clitoral region, especially when the operation was keyhole through the outside of my left hip? He shouted at me “I TOLD YOU THERE’D BE BRUISING!!!” I was so shocked and taken back I didn’t say anything. He hadn’t told me this at all.
Over the next few months the bruising went down, the pain went away, and everything seemed to go back to normal, although I was still having physio for a while after.
Being single and alone for 10 years I knew my own body very well. It was not long after I had healed, I realised something was very wrong. I had always reached intense orgasm, via my clitoris. Suddenly, at the point of no return, my body would cut out, like a light switch being turned off. Dead.
I could not go to my GP, because of course I knew I would be told it is all in my head. That is the cruel reality you see, if the medical world cannot find an answer, they’ll insist it’s psychological, which really is the most despicable thing to do to a person. I knew with absolute certainty that this was not the case, it wasn’t in my head and I was not going back to a GP to be treated with such disdain.
Over the next 2 years I struggled in silence, searching the internet on and off for answers, nothing made sense.
Finally, by chance, I put in the right search. I found out that during a hip arthroscopy a piece of equipment called the perineal post is used as traction to open the hip joint. The post is positioned between the patient’s legs, heavy weights are then put on the patient’s feet thereby pulling the genitals against the post. I read on my heart now racing. The document said that the perineal post is known to cause damage to the pudendal nerve. I had no idea what this nerve was so carried on reading. I felt sick. I then read the words that confirmed my worst fears. It said the pudendal nerve carries sexual sensation from the clitoris. I sat there shaking and breathless as my world crashed down around me.
My genitals had been crushed against the post!
My pudendal nerve had been crushed!
I had been castrated!
I felt emotionally and physically broken as it sank in what had happened to me. My body had been mutilated. I felt violated. I contacted the surgeon straight away to ask if this is what had happened to me, if he had used this post on me. It was and he had.
I have since found out that, apparently, due to my hip impingement I was at higher risk of damage and should have been warned of the risk before my operation. I wasn’t!
I also discovered that as soon as I reported the pain and bruising to him, I should have been given ice to reduce the swelling and compression. I wasn’t!
I was completely horrified to find out that I could have also been left in permanent pain and incontinent front and back. I would say luckily, I was only left with sexual dysfunction, except I don’t feel very lucky.
I am completely devastated that I will never again feel that beautiful sensation throughout my body, either alone or with a partner. The thought that I can never share that physical intimate connection with another person is unbearable to me and something I just cannot come to terms with. I am permanently sexually frustrated, I still try alone, and my body cuts out at the same point each time, like a light switch, dead, and every time it makes me cry.
I once again feel broken, defective, unable to entertain the idea of a relationship. I feel like no man will want me because I don’t work properly.
If I were to meet someone. I could easily give my heart away. I would not think twice at risking heartbreak for the chance of love but…… to be vulnerable with my body, to trust someone intimately, to face rejection because my body is defective. I just don’t know.
I have been dealing with all this for such a long time now that I can talk about it without the extreme embarrassment I once felt. My clitoris is part of my body and I will not feel shame discussing it or telling my story.
I have been in an ongoing complaint against the surgeon and numerous medical bodies for the last 6, soon to be 7 years, which has been incredibly difficult. The complaints system is not set up to protect the patient although its outward formal complaints guidance will have you believe otherwise. Like all powerful bodies it is bias and will close its ranks to protect itself, twisting and manipulating the facts to suit its own stance.
It is shocking how I have been treated, how the surgeon neglected to update my medical notes, has lied, refuses to answer my questions and now fails to acknowledge my existence, I am just an annoyance to him. He and the rest of the medical world think I will just disappear, fade into obscurity. They think ignoring me will eventually lead to me giving up. They fail to understand how the injustice I have experienced provokes a fire inside of me that will not just burn out.
When power, money and reputation are involved justice is extremely hard to find and it seems is only available to those who can afford it.
Living with such injustice has at times taken me to the darkest of places. I cannot express enough the irrevocable damage it does to a person having the truth covered up and denied to you because the Surgeon, the Political Leader, the Company Vice President, the Multi-Millionaire, the Movie Mogul are simply believed due to who they are, because of their hierarchy, their status, their friends in high places.
Injustice is soul destroying, gut wrenching. It makes you feel sick to the pit of your stomach and unable to catch your breath. It is a mental torture that is enough to drive a person crazy reading the lies produced in defence of the indefensible.
I do not know how to walk away from this, I cannot just move on, so I will continue to fight until I am heard, until there is change, until there is justice. I had the right to be told of the risks to my body, we should all have that right.