Dina’s Story: Gaslighted by the Medical System
I was a passionate woman; always in love, or lust. There was always someone important in my life, whether that was a literal person, or more often an unrequited fantasy about a man I was attracted to.
Just before the LLETZ I was in a short relationship, let’s call him (A) who I was incredibly attracted to. It was like my whole body was completely in love with him. When our fling ended, I couldn’t let go. At night I would summon up memories of our sexual experiences and recreate them while imagining his touch. Throughout my adult life I had a rich, inner world of fantasy. I could imagine that my hands weren’t my own, but were someone elses.
My imagination helped me get over not just this break-up, but many others. During long periods of my life when I was single, my sexual fantasy was what helped me feel connected to life and the world. I considered this normal and my sexual right.
I would have loved to have found the right man to settle down with but it felt like this was my journey to work through, before the right one came along.
In 2010 I got a letter from the doctor about how they had found ‘a few’ abnormal cells’ on my cervix that needed to be removed with the LLETZ procedure. The letter said there’s nothing to worry about, but I got this weird feeling, like if there’s nothing to worry about then why would you even tell me there’s nothing to worry about. It made me question it.
I went online, and read official medical sites that said it a routine, minor procedure, that involves removing just a few surface cells.
Then I read a comment on one page that said, ‘’things were never the same again.’’ Later I tried to go back and find that comment but I couldn’t. All I could see was medical websites saying how harmless it was.
One of the first things that struck me about the gynaecologist was how absolutely cold she was. She did not look at me, and had this attitude like ‘’don’t you dare ask me a question, can’t you see how busy I am?’’
At first, I didn’t really realise anything was wrong, except for feelings of fragility inside. A week or ten days later, I started seeing somebody new. I knew I couldn’t have sex till four weeks after the LLETZ so we ended up having a kissing session. I expected to get turned on inside, but something wasn’t right.
I couldn’t feel anything sexually except for a very tiny area of my clitoral region. The sensation was nowhere else and not spreading up inside to any other sensory regions of my body.
I then had what should have been an orgasm. But again, it was only a brief, single pulse, in my clitoris, without the usual waves of pleasure I was used to experiencing spreading into my body. My orgasms had previously felt deeply connected to my womb and mind and deep sensations and emotions would release. This just felt like a tiny sneeze.
In the end it didn’t work out with the guy. I can remember one night lying in bed thinking, well that’s over, now I needed someone else to ignite my feelings again.
My mind went back to (A), and I realised that since the surgery I hadn’t thought about him at all. This surprised me, considering how previously I’d been so infatuated with him. I tried to bring back sexual memories of him, but strangely I couldn’t access any of them. It was as if my thoughts and sensory memory had completely shut down.
Then I tried to touch myself and I felt my vagina. I thought, that’s weird, it didn’t feel like my vagina anymore. It felt as if it had physiologically changed. It felt dry and rough and numb, instead of it’s usual sensual softness and smoothness. My outer labia, which also used to be super sensitive to touch, was also practically numb. Touching this part of my body felt as meaningless as if I was just touching my arm, and the fantasy element of it being someone else’s touch had completely gone.
Six months after the LLETZ I was due to go back for a check-up. I told the Gynaecologist that something was very wrong.
‘’What’s that?’’ she said, not even looking up from her papers.
‘’I can’t feel anything down there,’’ I said. ‘’It’s like I’ve changed sexually. I’ve lost all feeling, I can’t experience being sexual anymore.’’
She didn’t even look up, I saw her write on her paperwork, ‘low libido’, and then she just said ‘’Anything else?’’
When I tried to ask more questions she practically shooed me out of the room.
Nothing changed, and so I went to my GP to ask for a referral to a gynaecologist. This time it was a different specialist Gynaecology department and when I told her that I couldn’t feel anything anymore, she said, ‘’oh yes there are women who have had problems with LLETZ.’’
I was shocked. I said, ‘’What? The doctor didn’t tell me that!, the doctor said it was totally safe. what do you mean?’’
I knew in my heart that it wasn’t safe because my symptoms were so severe. She said that women were coming forward with symptoms. I said, ‘’what kind of symptoms?’’
‘’Oh nothing, you know, just some scarring. Don’t worry. We’ll have a look at you.’’
‘’So these other women,’’ I asked. ‘’What happened to them?
‘’We don’t really know.’’
‘’When you say you don’t know, are you saying that I’m a guinea pig?’’
She said, ‘’oh nononnono.’’ She kind of shut me up. That was the first time I thought, this is really bad. I am actually a guinea pig.
She examined me, and she said, ‘’well you look fine. You’re really lucky.’’
I was like, I’ve lost everything. How am I lucky?
She continued, ‘’There’s no scarring, it seems to have healed very nicely!. You know ‘it’s a nice round shape.’’
I wish I’d said at the time ‘I don’t care how it looks! I’m not entering it into a beauty pageant.’ Why would I care how it looks when I had lost all my sexual sensation.
As the reality sank in I became depressed. I was a broken shell of a person, and I thought that life was not worth living. Every night when I lay in bed, I tried to find a connection to myself, my passion, but I couldn’t. I felt terrified, my mind completely separated from my body. Since I couldn’t perceive sex and physical love anymore, I felt incredibly lonely, as if I was already dead.
For the first few years I think I was in shock. Then the permanence of the situation sunk in and I began to feel incredibly depressed. I didn’t know how I could bear a lifetime of this.
Instead of having sexual or romantic fantasies I would fantasise instead about the possibility of ending my life. There was what I can only describe as a black hole in my mind. The previously comforting imagery and the sense of human connection no longer existed. It felt like there was no hope. I admit I considered ending it, and thought of options like getting hold of a gun or perhaps other ways out. But the violence terrified me and I knew I would never be able to do it. It wasn’t that I really wanted to die, but I just desperately wanted to be alive again.
At the time I was working as a graphic designer, but immediately after the LLETZ I lost my passion for the work, and found it hard to think up new, creative ideas. I started to feel that all design, and even art was pointless. I couldn’t think or draw as well anymore, and in the same way that I couldn’t fantasise, I couldn’t conjure up imagery easily, and my creative ideas just didn’t have the same quality anymore.
I also felt completely in shock and fearful all the time socially, which made it almost impossible to concentrate. I became isolated and stopped having lunch with colleagues and avoided social scenarios.
Since I kept going back to the doctor and wasn’t getting any help, I began to search on the internet for any information about what had happened to me. I read about hysterectomies and how they are a kind of castration or amputation.
I read that if the cervix gets removed during hysterectomy then this can cause nerve damage and the orgasm reflex can be lost. There were women who felt like their whole soul and sense of wellbeing was gone. Without my sensory imagination I could relate to that. I felt like I was in a version of life where I was backstage, seeing how it all worked and was put together, and feeling like all the magic and illusion was gone.
I ended up getting a referral to a sexual health specialist. I explained everything, I described the numbness and daily discomfort inside and said ‘’I’ve had nerve damage. Please look into this.’’
He told me that he would, and that I should come back next week. When I returned he told me that he’d looked into the LLETZ and that everything he’d read said it was completely safe, and that nobody had ever heard about anything like this happening. He said that there must be another reason for my numbness and discomfort; that perhaps it was psychological.
I felt like I was living in a kind of parallel universe. It was like they were covering something up, all refusing to listen to me.
His suggestions were things like, ‘’well, have you tried meditation?’’ ‘’Have you tried relaxing with a candle lit bath, being kind to yourself?
I do meditate, but the implication that this was enough to heal me of physiological damage demonstrated how he just wouldn’t accept the depth of my story, and was implying it was all in my head.
I was like ‘’Yes I have, I’ve tried everything, I need you to take this seriously, and recognise this for what it is. This is dangerous. You as a doctor are recommending hundreds of women for the LLETZ every week. You are not listening to me.’’
He eventually referred me to a neurologist who poked my labia with an implement and asked if I could feel it. I said yes, and then he said, ‘’well then there’s nothing wrong with you. Your pudendal nerve is working fine.’’
I asked about the hypogastric and vagus nerves (the other nerves that I’d learnt connect to the cervix) and he said, ‘’oh I can see you’ve done your homework.’’
I said, ‘’yes, but you should be doing my homework!, This is your job and this is important, you’re the best in the country, and you’re not telling me the truth.’’
The neurologist wrote a letter to my GP saying Dina seems to know alot about this, but sadly, we can’t explain, and there’s no test yet to define, the symptoms she’s discussing.’’
This just added to my suspicion that nobody knew if the LLETZ was even safe, and that if they didn’t know, and didn’t have the necessary research, then they had breached my trust and my safety.
The sexual health specialist said that the symptoms I was showing were severe PTSD and he kept telling me how concerned he was about me, and to come back again the following week. The telling and retelling of my story to someone who did not understand the depth or the nature of the damage by body had experienced was extremely re-traumatising.
It just felt like he was humouring me. He’d sit me down, and ask, ‘’how are you this time?’’
I’d say, ‘’you know how I am, I’m the same as last time. I’ve had nerve damage, because of this operation. I need answers, I need you to validate it, take it seriously and tell me what’s happening. if you don’t know what’s happening, can you please help me find someone who does.’’ By this time my mum had become ill with cancer, and was dying. It was already a relentless and brutal battle managing it. To have to keep coming to speak to him over again, as well without solution or acceptance, felt like it was pushing me over the edge.
He told me that he’d seen people who had come out of war zones and that my symptoms were extreme. He asked me about the possibility that there was something in my childhood that was unresolved, like some childhood abuse.
He referred me to therapy knowing I had this small time I had left with my Mum, which led me to question every single aspect of my life. I didn’t have the strength, but for a while I went down the road that I must have been traumatised in my childhood without understanding how. I analysed my childhood, my parents, my mental health. I tried so hard, but it was all re-trautmatising because what I needed most was for someone to simply acknowledge that I had been harmed by the LLETZ. In the end I thought, this is ridiculous. I knew it was caused by the LLETZ
Over the years my pelvic muscles felt like they had begun to deteriorate. I found myself becoming increasingly uncomfortable and dry. Urinating and then the act of wiping was distressing, as was riding a bicycle. As any pressure on the fragility of this part of my body created discomfort and therefore a deep sadness. In 2015 I realised the weakening of muscle had extended into my bowel and it was becoming increasingly difficult to have a normal function. It felt like I couldn’t push or clench strongly. It felt like my perineum was also paperlike and seemed to have shrunk.
I had changed so much, where once I had enjoyed hours of merely kissing and falling into a dreamlike state, now this too was just an awkward act. On the rare occasions I did find a partner and try to have penetrative sex. It was painful, like my vagina was too short, and the vagina walls too weak, like I could break at the back through to my womb.
One night I needed to break out and let go. I met some friends and went out to a bar. After a few drinks I started dancing, something I’d always loved, and I noticed something really weird. My body felt stiff, and awkward, and I just couldn’t seem to catch the rhythm.
It was the same with live music. I went to a few gigs, and just felt like an alien. Like I was so far away from what everyone else was experiencing and my eyes were just glazed over. My body just couldn’t move like it used to.
I think that because doctors couldn’t name or give me an answer for what was wrong with me other people didn’t understand either. It was easier for them to comprehend it by insisting it was because my mum was sick, but I knew the problems had started right after the LLETZ. Long before she became ill.
I had this sense that music, dancing, life should have been a means of the escape from the situation with my mum, as they are for many people in times of crisis. But this possibility was unreachable to me.
I found some support in a neighbour who lent me a book called Vagina By Naomi Wolf, in which she explains how having an injury to her nervous system that not only effected her orgasm and sexual function, but also changes in her creativity, imagination, and relationship to the sensory world.
That’s when I pieced it all together and realised, that the LLETZ and the nerve damage I had experienced had actually injured a complete neural pathway.
Something that had actually shut down those sensory areas in my brain.
Armed with this new knowledge I returned to my GP a few more times to try and see if I could finally get some help. They would ask me to tell my story again, and I told them to have a look in my notes. By then I had been there many times, as well as to referrals, but every time I visited they never seemed to have any record or knowledge, or be able to find it in my history.
I began to wonder how much the doctors were actually writing down. I even started to wonder if they deliberately not recording what I was saying, and were covering it up on purpose.
I got another referral, this time to the head of gynaecology at a London hospital. She was late, so a junior doctor brought me in and I told her my story. I told her that I knew about hysterectomy, and that nowadays they try to avoid removing the cervix if possible. I said that I felt that that cervical operations also need to be looked at because I’m experiencing the same symptoms as hysterectomy.’’
She was shocked and said, ‘’wow, this is unbelievable.’’
Then there was knock on the door, and the head of gynaecology came in. The junior doctor then got relegated to the back of the room. I told the main doctor my story.
I said that there are hundreds of incidents recorded online of women who have experienced the same as me.
She said bluntly, well, I’ve performed hundreds of hysterectomies and I’ve never heard of that being a problem.’’
I said. ‘’Please. I have nerve damage. I need help.’’
She then said ‘’well if it is nerve damage, there’s not a lot we can do since nerve damage is permanent. So is there anything else I can help you with?
I returned to the sexual health specialist for a few more visits still searching, and at one point he said. We’ve got a trauma therapist Agnes, would you like to speak to her?’’
I agreed and the next time she attended the meeting with us. He asked me to repeat my story yet again, and she quietly listened as I explained, ‘’I’ve got nerve damage. this procedure is dangerous, there’s tens of thousands of women who are going through this all over the world. It’s not safe, and it feels like a cover up.’’
My specialist then looked at her and said, ‘’Agnes, please realise, Dina has also experienced some childhood difficulties, and has some past issues she needs to address further in therapy.’’
But she ignored him, and looked at me directly in the eye, and said,
‘’Well, if that’s the case, we have to listen to what you are saying and do something about this.’’
This was the first time that anyone had ever acknowledged me. This was April 2015, five years since the operation, and five years of being passed around the system.
I didn’t ever get to see Agnes as a therapist, but the fact that she said what she did helped me enormously.
I went to Bali at this stage to try to find an emotional healing retreat but during this time I vowed to commit all my energy to finding the truth and learning to speak out.
What had happened to me should not be happening to any woman.
While away, I emailed Agnes once more, to ask if there was anything she knew of that could help me further. She mentioned that there was a very senior sexual health doctor in the US called Dr. Irwin Goldstein and so I emailed him. I had also recently contacted Dr. Barry Komisaruk, a neurologist who had done research into the nerves in the cervix.
Literally at the same time both Dr. Komisaruk and Dr. Goldstein answered my emails. I had this feeling of being caught in mid-air, that this was the beginning of someone actually beginning to hear me and investigate the real problem.
I visited Dr. Goldstein in the US. He started asking me all these questions, and was much more in-depth than anyone I’d seen previously. He spoke really openly about the statistics of women harmed by LLETZ, something no-one had ever done before.
I had an examination and they did nerve testing that showed results that were consistent with nerve damage. They also said that I had what they called ‘vaginal reabsorption’, which means that 30% of my labia and clitoris, and most of my female prostate, or G-spot tissue, had been reabsorbed back into my body.
Basically my body had stopped realising that this was a sexual organ. This is something that usually happens to women many years after menopause.
I felt utterly heartbroken.
At the moment there are no treatments for what I have been through, but Dr. Goldstein and his team are researching the neurology of women’s sexual anatomy (which shockingly has never been done before), as well as the harm these supposedly minor surgeries can do.
I wanted to tell this story, because after all this I want nothing more than for women’s sexual health be understood, demystified, and respected. The cutting of a woman’s body should be a last resort, in very extreme cases, not ever as a routine, or preventative means. And never without a full understanding of the potential of nerve damage. If there are genuine health dangers then all alternative options should be made available and considered.
The term pre-cancer is used to frighten women , as it did me. But I feel we should ask the question first, does this merit the kind of amputation of life and sexuality that I experienced? Only science can truly answer this question. The push for further research is something I am deeply passionate about.
I never thought I would get past this, however I have lately felt with this year a sense of recovery. Both physical and psychological repair. I’ve had positive sexual changes after a pregnancy, which sadly ended in miscarriage.
Since then though, I have felt a regeneration and some life return back to me. I again have the beginnings of intimate feelings, passion, sexuality and identity. The relief and gratitude for this is immense.
After doing some research I think that healing through stem cells in pregnancy holds an important key into understanding how powerful our bodies are. I am not better by any means, the trauma of those years will leave me forever changed, but I am well enough to begin to feel who I am again, and to think about how to use my experience to bring about awareness and positive change. I have begun once again to feel like a woman, and strong on the inside.
Names have been changed to protect anonymity.
If you are worried about the LLETZ procedure (also known as LEEP) you can find information in our Healing From LLETZ Facebook community. You can find sensible accurate statistics on the risk of cervical screening and informed choice in the book The Patient Paradox, by Dr. Margaret McCartney.