Unspoken Dangers of LEEP Procedures

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LEEP Side Effects

Dyscariosis and the Threat of Cervical Cancer

I was 33. I was in love, although more realistically heartbroken and pining.  This wasn’t unusual for me, I was never very good at choosing a partner, I was fiery and volatile in my lifestyle, and had gone through a series of painful and passionate relationships in my late 20s and early thirties. My addiction to love was always to my detriment. When I fell, I fell hard, and always with the wrong ones. But yet somehow despite the pain, in this wild messy state, I thrived. It drove me forward. It was part of me. I was addicted to life and love.

I saw myself growing old, laughing. I loved to dance, to flirt, to draw and create characters in my mind and in my work. I used to cry, laugh and make jokes. I was employed in a creative job and was passionate and truly alive.

In August 2010, after a routine cervical smear I was informed, that I had a small cellular change in my cervix, known as mild dyscariosis that threatened cancer if left untreated, and that I would have to undergo a minor procedure to remove these cells.  The procedure is called a Loop Electrosurgical Excision Procedure, or LEEP. It is also known as LETZ in the US, and is similar to a Cone Biopsy.

No Nerve Endings in the Cervix?

I was slightly worried, but reassured by my doctor that there was nothing to even consider as a side effect with the LEEP procedure. There was no risk at all, she said, as (which you may also have been told), there are apparently ‘NO’ nerve endings in the cervix.

I was surprised and dubious at this statement, having not only experienced pretty much all my pleasure and emotional pain from precisely that region, but also been used to very intense cervical contractions, both though orgasm, and the dull aches of menstruation.

I went online, and even more surprising found nothing to explain this part of the body neurologically, at all.

Nervously I agreed to the procedure and endured it without complaint.

Post LEEP Nerve Damage

On returning home however, things soon began to feel very different. After a few days, possibly a week, I was suddenly struck with a dark, eerie hollow emptiness. I knew I had been cut into, and was therefore injured, and so put it down the possible fragility of healing. But it wasn’t long before I shared my first sexual contact, and then things then became very real.

Where once there had been a rush of blood and sensation, there was nothing. No electricity, warmth or change in my body.  I was even more shocked, however when the orgasm I was expecting, had virtually vanished into thin air. Like the muscle had literally been cut out of my body. I felt hollow inside.

As the horror set in silently, as I suddenly faced the realization that this wasn’t just a fragility, or a healing problem, something I could run away from and escape. This was very serious. A deep and disturbing deadness inside, that as I explored further seemed to become emptier and more upsetting.

I tried to fantasize, to escape. I asked myself, who I could bring to mind for comfort. Something that would previously always entertain and distract me from a discomforting moment of loneliness or boredom, and would easily generate a feeling of hope and love and a rush of desire. But nothing happened.

Damage to Those Nerves Affects Everything

A black hole had appeared in my mind, shrouding the imagery I craved, my past memories and lovers, had vanished and lost all meaning. I literally wasn’t able to visualize or feel. I went to bed, and the room suddenly felt more real, solitary and isolating than it had ever done before. Even loneliness, and the painful ache for another had completely gone.

It felt that in my womb, something had been cut. As though a strong elastic band that held me together in my middle, that resonated and warmed me, and joined my mind and body with the sparks and excitement of life, had been severed.

My creativity soon also turned to a dismissal grey around me, I could see it, but wasn’t able to respond. I couldn’t feel expressions, connections, vibrations or meanings.  As if life itself became fake and tacky, like I was watching a play or performance. I was looking at the actors but could see the ropes being pulled backstage, just waiting for the end of the show. My world had lost its meaning and its colour.

As I seemed no different on the outside, I managed to I hide this for a while at work, but my job was creative, and I knew it would not be long before I would have to leave. Previously I had always felt like I was waiting for my big moment, the next big thing, anticipation that one day my magical hidden talents would be discovered, that I had something amazing to give the world. But now all that was gone. I felt tired, old, and like my cells couldn’t grow or re-generate.

Post – LEEP Side Effects Ignored

I returned to my doctor straight away. But was told to wait. After six months I returned again and persuaded them I wanted a gynecology referral. This however also did not provide any explanation or acknowledgement of the changes in sexual or sensory function I had complained about.

This became the beginning of the nightmare cycle of denial, rejection, and disbelief, which made me realize there was something very wrong in the system that needed addressing.

I went back, time after time, in the hope that there might be some kind of seed of understanding or explanation or support, but I was left searching on my own for many years that pushed me into a deep despair.

I felt like it was neither accepted, talked about, nor considered a medical issue. There was no interest or understanding.

A Culture of Silence in Women’s Sexual Health

There is a culture of silence about women’s sexual health that has shocked me. There are many I have spoken to who have found it so hard to understand why any of this matters, or are too embarrassed, or think that this it is just about the act of having sex, but it isn’t.

The womb, and the vagina-brain connection is a sensory organ, a barometer for so many of our emotions and sensations. From fear, to passion, love, excitement, trust, feeling, hearing music, and of course drive, attraction and sex. If it is damaged, the effects span throughout your whole life and can affect your entire sense of perception.

My Symptoms Are Not Unique

I eventually discovered that the symptoms I was experiencing were not unique to me, and were not, as I had begun to accept, a form of madness that needed desperately to be concealed.

They were not only real, but well documented, and not uncommon in women who have undergone total hysterectomy. The removal of not only the womb but the cervix as well.

Although no doctor had at any stage revealed this to me.

I chilled further when I learned that practitioners now commonly avoid the cervix in order to preserve a woman’s health, sanity, and sexuality.

It seemed unbelievable that they could they be still cutting away at it, seemingly at random in other operations. Young women. Potentially being completely shut down. Without any warning of the statistics, or what is at stake.

How was it they were not making the obvious connection and trying to keep us safe and intact too?

Since this happened, the shame of having lost that sacred sense of feminine, seemed to lurk around every social interaction.

I could no longer get excited about the prospect of a social event, in my neutered state I was no longer a player in the game, or felt of value to anyone.

I felt unarmed, vulnerable and an outsider.

I could no longer command, or desire attention through that unspoken physical energy. An instinctive movement of my hips, or a raised head or glance through a crowd was a lost language. Direct eye contact confused me. I no longer could read or translate these bodies.

Having always known instinctively, and successfully, how to use my body to communicate and to express and perform, meant I now had become terrified of bumping into old friends or having to explain anything.

I felt like I had been hit round the head and had forgotten who I was. For a long time the shame of this affected my entire existence. Something that I have learned every day to try and fight with all the strength I have.

Recovery Post LEEP

At times I think I am getting better, tolerating my body in a new way, and thinking that I have created this whole thing in my mind. But then at other times I am floored again upon realizing it is real.

I am not sure of the facts about neurological re-growth or brain plasticity to heal. But I know this is a good start for a positive outlook. Or perhaps just after such a long time the hope that I will eventually just get used to living in a different mind and body. Learning new ways to live, feel, and accept what I have.

We Are Not Alone

It was such a relief to learn I was not alone out there. I finally found others, and medical practitioners who were also as passionate about this subject as me.

I found within some medical papers online, the names of neurologists specializing in the field of sexual health, and in my search I soon became a point of contact for their work.

This has become the beginning of the collaborative effort to bring this out of the shadows, and into a period of new research, progress and change.

The science behind this could take many years, however this collaboration is making steps that could protect many women from surgical damage in the future.

The threat of cervical cancer is something that must not ever be ignored. We all need to know the facts, but there are less invasive treatments. We need to be given a choice and made aware of the risks.

I have decided to write about my experience in the hope that, whatever the true neurological explanation, our experiences as women will eventually be taken seriously by the medical industry.

We need more women to support us, and we want to help bring this from online to the real world where these issues can be addressed.

More Information about LEEP Side Effects

For more information about problems with LEEP, Cone Biopsy, TVT/Transvaginal Mesh, Labiaplasty or a similar vaginal or pelvic surgery, I found the physicians and researchers at San Diego Sexual Medicine to be very helpful, in particular Dr. Irwin Goldstein.

Web and Reading Resources that Provided Solace and Support

Inspire Health and Wellness

Hormones Matter

HERS Foundation

Books

Vagina, by Naomi Wolf

The Science of Orgasm, by Barry R Komisaruk, Carlos Beyer-Flores, Beverley Whipple

The Brain that Changes Itself, by Norman Doidge

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15 Comments

  1. Hi again Asha, I also wanted to add, that I am a writer, and have thought for a long time about writing something about what happened. I wondered if you’d be interested in being interviewed for an article about this?

  2. I am literally in tears now. I have been alone up until last month when I got a boyfriend. I mean I was having sex with him until I had the LEEP procedure in 11/2016 and it has been horrible since then
    I love him so much. But after reading this, Ima just have to gone head twll him to find another girlfriend because my feelings down there aint never coming back. I think I might sue my doc as well for malpractice for neglecting to tell me this could possibly happen and not giving me any options.

    1. Hi Krissy,
      Im so sorry for the delay in my reply. I saw your message and it has broken my heart to read. I have been thinking about you a lot and I just want you to know I am here, I hear you and understand.
      I also have tried to take legal action, but discovered sadly that it is very difficult as a woman to do so. it seems there is still very little monetary value for any legal case, as it is (only??) our sexual being that is being destroyed by these surgeries, not our fertility.
      Sadly, according to the medical industry..Men have sexual organs, we have ‘reproductive’ ones.

      We are living in the wrong century.

      I hope so so much that your journey is different. Its only been a few months right? There is every chance that you might be one of the lucky ones. You might heal. It might be short term damage.
      I also feel strongly that you are going to need support. I lost both my parents, my job and a lot of friends around the same time this was happening, I withdrew so much with the shock of it. I felt alien in myself. It took a lot to stay sane.
      I know how it feels going from being passionate and intimate, where you own and value your body and can give and receive love.. to being unable to maintain a relationship or even be close, but if your boyfriend has worked through this with you so far, can you try to keep him with you? I have no idea how that advice sounds, I just know how hard it is do do this alone. I would love to speak more to you.

      Im not sure if you have read the below posts but I am keen to get these situations properly documented. There is a team of medical researchers I am in contact with working on stopping this happening. If you would speak to them it would make a huge difference. The system needs to change but unless we speak out, no one will listen. Please let me know if you are willing.
      I am with you every step. You did not deserve this.

  3. Asha,

    Can we speak? I was just given the news that I have ASC-H and the biopsy shows HSIL. My doctor will probably tell me on Monday to go ahead with the LEEP. I want to be fully aware of my options before agreeing to anything.

    Please e-mail me.

    1. Hi,

      It is rare to have the severe symptoms as the ones I have from this, but as you can see from any online search, and the comments below, it happens. The numbers are significant enough to take seriously.

      I have found out its actually about 11%, which considering is a permanent life changing loss, should be reported. No man would ever have to go through a surgical clipping of any part of their sexual body.

      Loss of feeling in for women just isnt written into the medical books. they don’t care. We are still living in the dark ages, so until they do, you have the right to defend yourself from risks.

      And spread the word!! show them this page, show them a google search for sex after leep! There are so many people out there who have been castrated and neutralised by this. Gyne’s need to start to respect it.

      I would recommend having a treatment, but ask for lazer or cryo.. and if you have to go back more times, thats nothing in the long run to losing your one chance at love and intimacy.

      That is my advice. I can only say how I would do things if I had another shot at life!! I hope whichever road you take you recover and are healthy soon.

      Please let me know if I can help in any way further.
      Asha

      1. HI Asha, I just read your post while crying. Thank you so much for writing this. It’s taken me ten years, to even be able to google search to see if there are other people who suffered what I have. Do you know of any support group online for people who have gone through this? I have felt like the only one for so long.

  4. I had been left on a high dose birth pill for 17 years, had a cone biopsy and 4 days later, suffered a thrombosis in my left calf.
    Put on warfarin, I was then rushed into a hysterectomy only a few weeks later. Six days after this major op. I suffered a massive haemorrhage, on a Sunday night (No surgeons in the hospital). – a major artery had not been stitched up properly; after several hours, the bleeding would not stop – too much warfarin and heparin had been given! – all vital signs were diminishing fast, had blood transfusion, oxygen etc. I’ll spare you more horrendous details.
    It took almost 2 years to recover from this and I’ve always felt weakened since that horrendous year.
    This was all 35 years ago; somehow I survived. Since then I have had another DVT, and other times when my blood gets thick. My GP denies this and I paid for private tests -that showed blood clotting inappropriately within the vessels.
    I have learned not to rely on any doctor for my health, but to be aware of my own symptoms.
    If my blood gets thick again (I wake every hour and a half through the night and have this strong urge to massage calves and walk about)
    Now I recognise this and take ginger, garlic and fish oils. It works.
    Keep away from doctors and hospitals as much as possible. They are dangerous places.

  5. May I also suggest another website that supports naturalistic healing through vitamins and nutrition. It’s a great source of information and HOPE to anyone who has received scary news. Do not be convinced my popular medical advice that gives no other option but surgery. You DO have other options and you have been gifted with a beautiful body that has indescribable means of curing itself when given the proper nutrition.

    http://flowingfree.org/how-to-heal-cervical-dysplasia-naturally/

  6. I was just told today that I need a LEEP procedure and was scared out of my mind. The doctors told me the same thing you ladies heard… it’s not a big deal and has no major side effects. I’ve been praying for healing for over 6 months and KNEW the doctor’s advice was wrong but didn’t know why. I’ve looked into alternative healing with vitamins and bought the Ty Bollinger series a few weeks back, but hadn’t watched the episode on cervical cancers.

    I AM SO THANKFUL that you wrote this article and shared your painful story. Because of you, I will refuse to have the LEEP procedure and will go forth with my natural healing approach with confidence!

    God can do miracles. The power of prayer is the greatest gift he has given us. “Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; the one who seeks finds; and to the one who knocks, the door will be opened.” –Matthew 7:7

  7. I am happy you have written this. I am post leep 6 years . My sex life was fantastic until leep..i can no longer have sex because it is too painful..wrecking my marriage and left me desolate. 11 years prior to leep I had had cryo surgery which if I had to choose again I would certainly choose the cryo. I had no complications with the leep healing..but it left me desolated and when i say sex hurts I mean it..its like razor blades..so I cant..literally. i no longer go to the doc who did the leep..he was totally heartless and pretty much said guess you will be sexless. I am now considering malpractice. I am now going to another doc who does care and is trying to help..but yet to no avail. So guess i will be alone the rest of my days..lets face it.a partner needs intimacy and i cant have that now..thank you for making people aware of the dangers of leep.

    1. Wow, I am so sorry, this is like hearing my own story. Its hard to put the loss of intimacy into words. Losing intimacy, whether alone or not. Has been utter devastation for me. People think Im lonely.. but its a completely different type of emptiness. I have also been managing with this for just over 6 horrible years. Holding on by the skin of my teeth.
      I would have done anything to have someone understand. So it means a lot that you have also reached out.
      Thankyou.
      I went to see a research team last year as I mentioned in my original post, who are picking up on this,and there have been comparisons to the effects of hysterectomy.. again, something so savage no one will understand unless its been experienced.

      I have been written as part of a case study they are doing to try and highlight the risks to the global gaenacolgy practice, and they are also doing a study of the nerves in this part of the body. (This hasnt been done before believe it or not!!!) Would you be willing to speak to them? It could be over the phone and anonymously, and each of our voices being heard means more doctors learning.

      I hear your pain completely and will be thinking of you
      x

    2. HI,
      I hope you are ok.
      Have you had a chance to think about what I said in my previous response? About helping by challenging the system and becoming an anonymous case study? The contacts I have are the best in the field and are making really big steps to highlight women’s health risks. It wouldn’t take long to put you in touch and could push research in the right direction.

      Making people aware online is one thing.. making doctors aware and challenging the system is what will eventually make a difference!
      X best wishes.
      A

  8. Thank you so much for writing this. I am almost three weeks post leep and feel a wreck. The margins of the biopsy were positive so the doctor potentially wants to amputate more of my cervix in 2 months. I feel like shit and cant stop crying. This article made me feel less alone, thank you.

    1. Hi J,

      Thankyou for writing and sharing this. I am so sorry you are going through this. I want to help, I am doing as much as I can to highlight that there is a risk to this procedure, why and how much is still completely unknown which is why we all need to speak out.. otherwise the doctors and the system will just assume its safe and just continue.
      Can I ask if you are so upset because they are removing a part of you and you are scared? or are you struggling with actual lost sensation and nerve damage? A friend of mine was recently called in for a leep and I urged her to ask and ask about other options. She ended up having a newer type of treatment. laser/ or laser vaporisation?..and is fine. Im not saying thats the answer but look into it! Doctors wont discuss options unless you ask as its probably more expensive for them and you may have to go back a few times.
      If I could reverse time, I would do 100 alternative treatments if it meant feeling those feelings again.
      Ive also not heard of anyone having long term sexual damage from cryo treatment so mabee ask about that too. I dont know but could assume that it doent cut so deep so allows more potential for healing?.. Please let me know more about your symptoms if you can face it.
      Another thing to remember, is that there is a lot of information now on how to blast your body full of nutrients, certain supplements, and natural products, if taken seriously have been known to do things to reverse cell changes that medical industry will take a long time to catch up on. I dont want to preach about this as its a personal choice, but you should definately look into it.. I have no doubt that our cells need nourishment not chemicles and toxins to heal. Especially in this toxic world.
      Ty bollinger has a lot of information that I found really interesting, that can be used alongside conventional methods to clear your body.
      I really hope you dont have to go back, and that you are not one of the statistics.
      xxx

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