I had CIN level 2/3 which during a colposcopy appointment was removed using LLETZ.
For the following three weeks I continually bled and had severe cramps. I had extreme lower abdominal and cervical pain whilst standing, the only was to relieve the pain was to lie down. It felt like something was pulling my uterus down out of my vagina constantly and with shooting pains across my lower half and the top of my legs.
I visited my GP and gave her all of my symptoms and was eventually referred for an internal ultrasound, they found nothing unusual. I continued to feel all of those symptoms until my six month check up/smear. I was then told by the nurse that I had a ‘growth’ on my cervix. She attempted to do the smear anyways. It was extremely painful and bled heavily afterwards and for about a week after.
The results came back as unreadable because of the blood caused by the ‘growth’ being disturbed during the smear and I was told I could not have another smear for another six months. I was still experiencing lower cramping, stabbing pains, loss of libido, fatigue, dark brown spotting, very heavy and painful periods. I also developed bacterial vaginosis twice which just added to everything I was trying to live with.
I used to work 12 hour shifts with the majority of my shift standing. I was in constant pain and would spend my lunch hour on the toilet passing blood and clots on a regular basis. When I would return home the only relief I could find would be to lie flat. I would spend my days off in bed because I couldn’t face the pain and didn’t want to be too far from a bathroom in case I passed anything.
I attempted to have sex with my husband on a few occasions, it was very painful when his penis touched my cervix, like I was being stabbed internally. On one occasion I did manage to have an orgasm but it was like a load of razor blades exploding inside me.
The ongoing sexual problems I had, my inability to live my life on my days off and just my general feeling of going slowly mad led to the collapse of my marriage and sank me into a depression, which four years on I still suffer from.
I have insomnia, headaches, nausea, lower abdominal cramps, back ache, painful ovulation and many other symptoms that I never suffered before the LLETZ procedure.
I feel that despite seeking medical help throughout all the time after the procedure, I was made to feel like everything was in my head, I started to believe it. I distanced myself from everyone, I lost contact with many friends and feel like I had truly lost my way in life.
After my marriage ended I was in the darkest place I have ever been, I took voluntary redundancy from my job and moved from the uk to Ireland hoping that it would give me a fresh start. I had a smear test three years ago because I wanted to be on the Irish smear test ‘system’. The nurse told me that the results came back saying that there are changes in the cells but seeing as I didn’t have HPV then they were happy for me to wait the three years before I had another one.
I did start a new relationship last year, it was so difficult to be intimate. The painful intercourse, occasional bleeding after sex and the cramps for a few days after we’re just too much, it brought everything back and in the back of my head I just kept thinking ‘there are changes in the cells, I bet you’ve got CIN again, you’re gonna have to go through all this again’.
I drive myself crazy many many times reliving everything that happened. I feel that more awareness, support and counselling needs to be offered to women before they have the LLETZ procedure. I was still in the stirrups during my colposcopy appointment when I was told I would have to have the LLETZ. I wasn’t given any information other than there are pre cancerous cells and we have to get them out now.
It all happened so fast but nearly five years on I am still living with this. My next smear is due very soon and I am terrified of having it done because I know it will be so painful and then waiting for the results will just make my insomnia worse (if that’s possible!!)
I just wanted to thank you from the bottom of my heart for starting this group (Healing From LEEP/LLETZ), I read daily even though I don’t post but this has helped me more than anything else in just allowing me to know that I’m not crazy in all the pain and emotions that I’ve been going through.
I never thought going for a hospital appointment would lead to my marriage ending either but just with the physical pain and emotional distress I just wasn’t the person he married, I don’t blame him for anything that happened and it’s great to see the women posting within the group who are getting great support from their other half’s 🙂
But it also makes me angry and sad that there are so many women who have suffered and are continuing to suffer. You and everyone in the group are just brilliant, thank you so much once again.
Intact Cervix was started by two women; Kate and Asha who connected online after experienced devastating side effects from the LLETZ procedure, (known as LEEP in some countries).
We experienced problems with orgasm, low libido, painful sex, and loss of sense of self, and creativity.
The LLETZ is almost always described by doctors as being a simple, minor procedure that has very few side effects. (Here’s what the NHS has to say about LLETZ.)
Our experience and research tells us that for many women this is not the case. Not only are women experiencing sexual problems there are also many other ‘unofficial’ side effects.
When Asha’s problems were dismissed as being ‘all in her head’ she travelled to the US to meet sexual medicine doctor Irwin Goldstein who is one of the world’s leading experts on the cervix.
Dr. Goldstein confirmed what Asha had realised from researching her problems, that she had experienced nerve damage.
The cervix is actually a sexual, orgasmic organ. Dr. Barry Komisaruk has conducted research to show that it has neural connections to the vagus, pelvic and hypogastric nerves. He found that women with spinal cord paralysis, could still orgasm via the cervix. Clitoral orgasms go via the spinal cord.
The problem in medicine is that shockingly very few doctors have kept up to date with research about the cervix. Many doctors were taught in medical school that the cervix has no nerve endings. What this means is that when a doctor performs the LLETZ they may cut nerves that they don’t even acknowledge exist. It’s hard to imagine that in 2018 medicine can be so ignorant and blatantly disregard female sexuality, but actually when you dig deep into the sexism and patriarchal attitudes that have informed gynaecology it is sadly, unsurprising.
An Informed Choice For LLETZ
When LLETZ was first introduced there was no consideration of how it might effect sexual function. LLETZ has never been proven safe in terms of female sexuality. There have been a few small studies, that suggest that LLETZ can harm sexual function. Dr. Goldstein is now carrying out research into the side effects of the LLETZ.
From these small studies it looks as if problems with sexual function occur with 15% of women who have the LLETZ. So if you have cervical abnormalities there’s an 85% chance you will not experience the problems we have.
We believe that everyone should weigh up the evidence and decide for themselves. Look at the conventional medical sites, scientific research, but also listen to other women’s stories. Since these problems have not been researched in-depth, women’s stories are the best evidence we have for what is really going on with the LLETZ.
When you look at the evidence bear in mind however, that there is a culture of silence around these sexual issues. Many women do not realise that the problems with their sex lives were caused by the LLETZ, because any complaints are often brushed aside by doctors who do not understand them. When women try to speak up about what they have experienced they have been told to visit counsellors, had it suggested to them that they were sexually abused as children, or told to examine their relationship for issues, or ‘just take a painkiller and use some lubrication’. A lot of women don’t want to speak up because they feel like what happened to them is because they are ‘weird’ or ‘crazy.’ They don’t realise that there is something wrong with the procedure.
We know this information is scary, but we don’t believe sugar-coating advice about side effects and saying everything will be fine is helpful. The mainstream medical advice about LLETZ is utterly dishonest and completely unrepresentative of what women are going through after the procedure.
LLETZ is constantly downplayed. Doctors use euphemisms such as saying it’s ‘just a few cells’ or it’s ‘just like having a mole removed’ to deceive women into thinking the procedure is no big deal. In reality it can be huge, and can effects us like a sexual trauma. Women shouldn’t be made to feel bad because they physically or emotionally can’t handle an extremely invasive procedure on a sexual organ.
The 15% are not just an inconvenient side effect. We are real people who run into the thousands, and every day there will be more of us. We matter.
If your doctors has told you that you need LLETZ then weigh up your options. Some women have decided that after informing themselves they still want to go for the quick, conventional option and just have the LLETZ.
Some women have asked their doctors about other alternatives like laser and cryosurgery which may be less invasive, (we are not sure on this, but there seems to be less anecdotal evidence of their harm, although this may be because they are less common procedures).
Some women are healing cervical dysplasia naturally by consulting with a naturopath and making dietary changes, using suppositories and supplements. Studies have shown that even CIN 3 can reverse itself in some cases, and it seems that making these life style changes may boost the immune system to increase the likelihood of the body clearing it naturally.
Whatever you decide, we wish you a quick and painfree healing. If you need any more support, feel free to contact us.
You can also find us in our Healing From LLETZ facebook group where we support women who are dealing with these long term side effects
Here are some other helpful facebook groups where women share their stories and experiences, and come together to support each other through the challenges of dealing with cervical dysplasia.
Teal Ladies Pre Cancer group – Conventional, mainly ‘pro LLETZ’ advice.
I went for my first smear test when I was 27. I had given birth fairly recently and was still breastfeeding. (I find this interesting, now, as after all my experiences with the LLETZ I have read that the hormones after birth and breastfeeding can alter smear test results.)
The smear came back as abnormal so I was sent for a colposcopy, where they thought it was either CIN 2- CIN 3. They took a few biopsies, and also told me I had high risk HPV.
I had to have the LLETZ and was told it’s a very common and minor procedure and that the main risks are infection and bleeding but that most women recover absolutely fine. It was all portrayed as not being a big deal, and a preventative way to stop women from getting cancer.
The actual LLETZ procedure didn’t go very well. it was more complicated than normal. I remember the doctor trapping my skin in the speculum when he tightened it and it made me bleed. That made me feel tense right away, as did the anaesthetic which sent my heart racing, because of the adrenalin.
The doctor talked to me as he was doing the procedure, and told me that it was more complicated than normal because I bled more than people normally bled. He struggled to get the bleeding under control. But eventually he managed but he told me he had to use a lot more Silver Nitrate solution than he normally would, and that he had to use it for longer. At one point he said that if he didn’t get it under control he would have to do something else.
Then he got really cross with me, and said ‘’if you don’t stop moving, I’m going to have to put you to sleep.’’ So I was like, okay, I better stay still. Eventually when it was over and done with he told me I’d had quite a lot of bleeding, and he showed me his thumb and he said he’d removed a piece of my cervix.
He sent me away, and from the beginning things did not going well. The first week after the LLETZ was okay although I was in a lot of pain. The second week I felt like I had a temperature, and I started getting excruciating pain in my cervical area. When I say excruciating, it was 10 times worse than the LLETZ procedure and or the pain during the first week. I was on my hands and knees, the pain was so bad. The Out of Hours doctor told me to keep an eye on it overnight.
Then I started bleeding although it wasn’t the correct time for my period. It wasn’t period blood, and it t wasn’t period pain. The pain was much stronger, not like dull cramps but a sharp pain. The bleeding was getting heavier and heavier.
The next morning I called 111 because the pain was so overwhelming I wasn’t even able to look after my children. They sent an ambulance for me, and the paramedics had to get my partner out of bed to look after the kids. In the ambulance I had gas and air, it was that painful.
It turned out I had an infection on the cervix. A scab had come off from where the doctor had cauterised the wound with the Silver Nitrate, and now the wound was open.
I had a trainee doctor, and some other trainees, and they were really busy. I had loads of people looking at me and prodding me. They applied more Silver Nitrate to stop the bleeding. They told me that it was a lot. They sent me home with a course of antibiotics, and they told me to keep an eye on it in case there was any more bleeding or pain.
At the time I was on a contraception implant but I was having periods although sometimes I missed a month, I had periods most of the time. So I was waiting for a period, as I hadn’t had one since the LLETZ, and the bleeding I’d had was from an infection, not period blood.
After two months I still hadn’t had a period so I went to my GP. He said not to worry about it, that sometimes women can miss a period after the LLETZ.
Another 3 months went by and I went to the nurse for something unrelated, and I told her I still hadn’t had a period. She said that it was absolutely fine, and not to worry about it, and that my body would have a period when it was ready.
By this time I’d got the results back from my biopsy and it turned out that it wasn’t CIN2/3 it was CIN 1 so he taken a big chunk away from my cervix, without a good reason. (I’ve since read, this can happen, and is quite common).
Anyway I just tried to get on with life, although by this time I hadn’t had a period in 5 months.
Then gradually I noticed I was getting signs that I was coming onto my period, PMT stuff like a headache and bloating. My stomach started to swell and I got mild cramps but no actual period.
I spoke to my doctor and again he said to me, ‘’Well you know what do you want us to do? Your period will come when it’s ready.’’
By this time it was six months after the LLETZ. Then I started getting contraction pains. At first they were sporadic. The first week I had them it was a couple times a day. They were really painful for a moment, and then they just went away. I knew something wasn’t right. I just didn’t feel well. My stomach was swollen. I was tired, and nauseas.
Then the contraction pains got really really bad. I’ve had three children, and two were home births, and it was like being in labour. I was instinctively moving into all the positions, that I’d been in while I was in labour to try and keep comfortable. It was difficult to walk because my stomach felt so heavy. I was becoming really unwell to the point where it was difficult to function and walk. When contraction pain, came I couldn’t focus on anything else other than the contraction.
I went to the GP who urgently referred me to a gynaecologists since I was in agony, and hadn’t had a period in six months.
Meanwhile I did my own research and came up with uterine cervical stenosis. it sounded horrendous and the treatment sounded horrendous, and I just knew. They saw me in gynaecology and they examined my uterus.
They told me I needed an ultrasound of my uterus, but they were busy so they kept me waiting for hours. Then they said they couldn’t do it that day. I told them, I feel like my period is trapped, my uterus is full, and they sent me home even though I was in pain, and they still don’t know what was wrong.
The next day I called my parents as I was on my hands and knees in pain, so they took me back to Gynaecology. A few more gynaecologists examined me, and at this point they said that my uterus was distended and swollen. They could see inside that there was a pocket of blood poking out of my cervix, and a cyst.to the side of the cervix, and this meant that they couldn’t actually see my cervix at all.
All the times they saw my cervix, they seemed completely confused and concerned because they couldn’t see my cervix. It was so scarred from the LLETZ that it looked like a tiny pinprick.
Then I waited for my scan. I was in the acute triage gynaecology ward which was in a main hallway, very public. There were lots of very poorly women coming in, I felt so swollen as if I was 9 months pregnant. It was too uncomfortable to sit.
I said to my mum, ‘’something’s wrong, something’s going to happen.’’
Then, all of a sudden I felt this little pop and I just haemorrhaged everywhere. The scar tissue broke itself open and I flooded my clothes and the floor with blood. It was like an out of body thing. I felt like I was dying. The floor was covered in blood, my shoes were soaked. It was horrendous, everybody came running. They got me a wheelchair, and wheeled me to a bed. There was blood everywhere, all over the floor up my back, because it was six months of period blood. There had been so much pressure, that it just broke open that scar tissue.
This incident caused me a lot of trauma. I was diagnosed with PTSD and period trauma. I think because it’s such a shock to feel as if you are dying, and how concerned all the medical staff were in that moment. It was horrible. I actually started a medical negligence claim because of how it had been dealt with, and how they had missed my problem.
The treatment after the blood came away was not very good. After the bleeding slowed down they sent me home. They didn’t tell me anything. They just said keep an eye on it, and they said if you stop getting periods you’ll know what it is again, and I was really shocked, that I had been through all that and they offered me nothing in the way of treatment.
Stenosis is very difficult to treat as there is a high rate of re-scarring, and the cervix closing up again. They told me that they could insert a catheter with a balloon on the end of it, to deal with the cervical stenosis, but they said the success rate for that was not very good.
They didn’t do the catheter but they said I would need to come to see a gynaecologist every week, to have my cervix dilated. This was an incredibly painful procedure that was done without pain relief. They then wanted to see if I had periods or not, and if my cervix would reclose again. By this time I was already retrauamtised at the sight of blood and the thought of it happening again.
Then, they wanted to do a smear, to see if my cells were normal. Because of all my complications the gynaecologist did the smear rather than the GP. At the same time the gynaecologist would view my cervix, and see if he could dilate it and open it.
He had a look got down there with the camera, and he said it was still very tight and scarred. He told me he would try and dilate it, as he wasn’t sure he could get the smear stick in. It was so painful. He couldn’t dilate it, because I was screaming so much. he had to stop.
He said he would try and get as many cells a possible for the smear but that it might come back as inconclusive as it was so scarred. He said, to wait for the results, and to see if I carried on getting periods, and that he hoped I wouldn’t close up again, but he didn’t really know. By then I’d had one light period.
This was years ago, and I although I did carry on having periods, they haven’t ever gone back to normal. Before I see any blood I get at least three days of pain. My cervix is so tiny like a pinprick so my periods have this tiny hole to get out of. I also get horrendous PMDD and period cramps.
The doctors weren’t really bothered that I was suffering as long as the blood was coming away, and the only solution they had was the risky catheter procedure. They saw me a couple of times to check that there was no collection of blood in the uterus, and that was it.
There was another procedure they could do which involved lasering off the scar tissue, but there was no specialist in my area who could do it, and by this time I was so traumatised, that I was trying to avoid being touched.
Because of my period phobia I would constantly check myself down below for signs of blood, and check my body for any sensations to see if I might start bleeding. I would have panic attacks and flashbacks if I saw any blood, and thought I would bleed to death. I couldn’t go into supermarkets because the white floors triggered flashbacks of the hospital floor covered with blood. I felt really unwell physically and mentally, and would lie down in bed a lot of the time, avoiding any sexual contact.
I had EMDR therapy which is amazing. It helped me massively. What helped me even more was getting back in touch with my body again. I found the Red Tent movement and Mizan Abdominal therapy. I used castor oil packs on my womb, and yoni steaming to try and heal the scarring.
As I connected with my cycle and my body again, my periods got slightly easier.
At the time I was taking the mini pill, but I knew instinctively that I was pregnant even with a scarred cervix. A test showed two bold lines every early on, which I thought was strange as my previous pregnancy test had been very faint. I felt like to fall pregnant despite the cervical stenosis and taking the mini pill must be fate. I remembered during the Mizan abdominal therapy I had put the intention of love into my womb, and now here it was. I found out I was expecting twins!
I was scared thought about my health and concerned about the stability of my relationship with their dad.
My pregnancy symptoms were much stronger than normal, especially the nausea which all day and became worse as the day progressed. It was really hard, but I kept reminding myself that I had done this many times before, and was counting the weeks till the nausea would normally ease.
At the time my youngest daughter Lola was experiencing difficulties at nursery and she was find the transition of me and her dad seperately particularly hard. The nursery phoned me one afternoon and asked me to vome into the office. Lola had had a meltdown and hit a member of staff, so they were withdrawing her place at nursery.
Anger bubbled inside me and sadness and disapointment in myself and what a terrible mother I must be! Thoughts were swimming in my head. I blamed myself completely for her behaviour – that it was because her and my dad were seperating. I went home from the nursery sobbing. My partner came home and I went to the toilet and I discovered blood. The first thing I thought, was that I’d come so far with the period phobia I was worried it would trigger me again to see the miscarriage.
I was booked in for a scan at the early pregnancy unit. She said they were measuring small and she couldn’t find any heart beats. She asked me to return in another 14 days for another scan as it may just be that my dates were wrong. Unfortunately I was told that they hadn’t fown, still no heartbeats and their sacs had started to shrink. I had lost them both.
The doctor asked me if I would like to have a natural miscarriage or an operation. Everything scared me. I was still had a phobia of the blood from the trauma of my stenosis. I did’t think I could cope well with passing the twins at home especially with three children to care for, and I didn’t think my cervix would be able to pass them.
I decided to do the operation. I was really worried about my cervical stenosis would effect it. I was booked in for a D&C to remove the twins, and told them all about my history of having been born with brain and spine conditions, and the cervical stenosis, and they said it would be fine.
Surgery day came, I waited all day for a slot in theatre to become available. I was an absolute mess, my PTSD and health anxiety were on high. I was physically shaking and having panic attacks.
They inserted misoprostal tables into my vagina to soften and open my cervix and to bring on further contractions. I again expressed my concerns about cervical stenosis.
They woke me up after the operation, and I was in absolute agony. I was sure it must of been completeed because of the amount of pain I was in. The doctors came in with grave faces. They explained that three different gynaecologists had to gain access to my cervix but that it was so scarred they couldn’t get in. They didn’t want to risk creating a ‘false passage’ and rupturing the bowel or bladded, so they had abandoned the operation. They told me that my cervix was so scarred it was impossible to view properly and it was completely closed.
My dead babies were still inside me because of my scarred cervix. At that point I was beyond grief and fear. How on earht would my cervix pass those twins? How could they leave me like this? What about infections? All these questions.
They suggested to me that because of the situation I try to pass them yself but stay in hopsital. They suggested misoprostal again but this time 4 tablets taken orally which would make my womb contract strongly.
I was already in agony and shaking from head to toe. It was as if they didn’t even think about the fact that I had PTSD and was drowning in anxiety. My doula friend came to the hospital and we did some EFT (tapping) and some healing work.
I took the misoprostal. And my gosh I have nevr felt pain like this. It was far worse than any childbirth. It felt like my womb was being squeezed like a tight fist. I wondered how it would contract so hard and fast without rupturing. My poor cervix was fightin against scar tissue to try and open to pass these twins. So every contraction felt beyond any pain I had experienced beore. The nurses were lovely and gave me gas and air, and my own room, but I just lay curled up in the fetal position, knowing it wasn’t working.
After 24 hours I was still bleeding but doctors and nurses explained that I hadn’t pass the twins yet, and that I should probably go home for a few weeks and try to miscarry at home.
I was miscarrying constantly for six weeks. My cervix was so scarred I couldn’t pass them so I was in on and off miscarriage for six weeks
It was the most horrendous thing ever. I can’t tell you the pain. It was worse than the labours because my cervix was so small now. I would get the most mighty contractions just to pass small clots. Now instead of wanting to hide from the blood I wanted to see my twisn. I would sit on the toilet with a plastic bowl next to me, and inspect everything I lost. I learnt to tell the difference between clots and tissue. I passed one twin at home with difficulty.
One one occassion I felt contractions coming again and a rising feeling of urgency or doome. I knew this was my cervix opening. I called my mum and begged her to come and look after the kids so I coud have some privacy and my partner rushed home from work. Just as he walked into the bathroom I passed a huge blood clot and piece of placenta. We went to the hospital to have me checked over.
My miscarriage still wasn’t complete. I was booked in the next week for another can to see how it was progressing. Just as I thought, they confirmed that I had passed one twin at home but the other twin remained high up in my womb with lots of clots, and ‘product’s as they called it. Because of the size of my cervix, they weren’t able to pass the things that needed to come away. They sent me home again.
They booked me in to have a second operation; using a hysteroscopic resectoscope for repeat evacuation of retained products of conception. Basically a more complicated version of the first operation but this time with a tiny camera and tiny instruments that would hopefully safely open my cervix.
They told me that only two gynaecologists in the area were experienced enough to do this oeration so again it would take weeks to arrange. The doctor who did my operation was trained in gaining access to difficult cervixes, so her expertise was normally in women who were post menopausal, because their cervixes can be more difficult than women of my age.
She had special equipment like a really small microscope so that she could make sure she was viewing my cervix, and not a false passage, because apparently when the cervix is like a pin prick there could be a few points of entry and you could get the wrong one, and if you do you could risk rupturing someone’s bowel.
Surgery dady came and I wrote out intentions on a piece of paper to let the doctor and her team gain accss to my cervix, and to let her help me release the second twin from my womb. I thanked the twins for their messages for me. For if it wasn’t for them or the stenosis I wouldn’t of overcome my period trauma and began to love my womb again. I comforted myself by writing that my twin souls had passed into the spirit world and now it was time to let their physical bodies go and to let my physical body rest.
The gynaecologist managed to gain access and removed the second twin and the rest of the products. She said that she had opened it up quite easily despite the fact that it was scarred and tiny.
That must have been my intention setting!
Because she had dilated my cervix my periods were actually easier for a few months after that, although now they are gong back to how they used to be, when I would go for days and days of pain before I would actually see any blood. I’m going to have to go back for a few sessions of Mayan.
In a way, I feel like, should I think it was worth it because it stopped me from getting cancer? Yet it’s had such an impact on every aspect of my life. They took away a large piece of cervix, and then on top of that I had massive complications. Then to have the biopsy coming back to show that perhaps it never needed to be taken away.
Because of the way my side effects were handled I made a medical negligence case. One of the things I complained about was the waiting area in the corridor where I’d been when I hemorrhaged. They agreed with me that it was not an appropriate waiting area, for women who are in pain, because it’s a place for women are bleeding in early pregnancy, uncomfortable in pain, not an appropriate waiting area, and because of my complaint they move it into a separate room
Another change is that they listed cervical stenosis as one of the risk on the literature as it wasn’t listed before.
That LLETZ has had the biggest impact on my life, more than anything else, and it still impacts my health on a daily basis. I get very painful ovulation since the LLETZ. I get PMDD and have so much pain, and heaviness before my period. For the first three days I have intense hormonal migraines, nausea, backpain, anxiety and depression. I never had any of this before the LLETZ.
Since the LLETZ I’ve developed neurological conditions. I have widespread numbness in my legs spreading up to my stomach and above my belly button. I have bladder problems; pain in my urethra, and have been partially diagnosed with interstitial cystitis (white cells in my blood which suggest infection, even though I don’t have an infection).
I’ve seen you posting about the sexual side of things on the Healing From LEEP/LLETZ facebook group, and it’s really interesting because I was focused on all the other trauma that was going on that I wasn’t focused on it. But I’ve had those problems too. It sounds strange, but it’s almost like I’ve had to learn it all again. Nothing was the same afterwards. My sensation, libido and orgasms are not the same as they were before.
The physical and the mental are very intertwined, and I feel different on a physical and emotional level. It’s interesting learning about how the vagus nerves connects directly from the cervix to the brain. After I felt that pop sensation, and hemorrhaged, and felt like I was dying, I did a bit of googling afterwards and read about the vagus nerve. I felt kind of sure, that this had disturbed my vagus nerve, and that’s where the intense fear and trauma had come from.
Despite the trauma I’ve been through I really try to connect with my body and my cycle, and welcome the bleed every month as much as I can. I do everything I can to try and make it easy on myself with essential oils, and massage.
I believe passionately is that our womb is like our energy centre, and it’s like a gift to us. I really see that ‘blood speaks.’ That my period is connected to what’s going on in my life, and how I’m feeling. For example a monthly bleed is like a release of anything that no longer serves us. I like the idea that if we have a particuarly heavy or painful period one month, then maybe we have a lot to process or let go of.
It’s like she…our womb space…is in sync with us completely and talks to us through our blood in a symblic way. For example when my womb held onto six months of blood I was in a relationship that I wanted to leave. I was ignoring my needs, storing anger, and I hadn’t processed the previous trauma of abusive relationships.
I felt that the miscarriage of the twins was hugely symbolic too. I held onto them in my womb for six weeks. The time of the miscarriage synced up with the same time of year that my cervical stenosis presented itself. And again, when I was miscarrying. I was in an abusive relationship. ‘She’ was speaking to me!
So now, every month, I try to listen to the messages I’m getting from my blood but it’s still hard and debilitating with all the physical and emotional symptoms I get.
You know it’s weird but before having the LLETZ I didn’t pay much attention to my cycle. Sometimes I think that maybe this is was sign, it’s like a massive wake up call to pay attention. Now that I’ve had the LLETZ I have no choice but to pay attention to my cycle.
It’s funny but despite what’s happened I wouldn’t change it in a way. It’s changed me, it’s brought people into my life, it’s given me this awareness of my body.
However at the same time I feel the need to let other women know that they are not crazy, and they are not silly. Women need to make proper informed choices. You can’t make proper informed choices, unless you’ve got all of the information and all of the facts, and if people aren’t aware of other people’s experiences you can’t make a proper choice.
I’ve had another smear since, which was normal. I don’t know what I’d do, if it was ever abnormal again. I’ve read so much since about how the cells of your cervix are changing all the time, and that there’s a really high chance of false readings. I just worry about whether all these LLETZ procedures are really necessary.
Then there’s the whole thing, with the HPV vaccine side effects which is just horrendous. I wonder why we aren’t educating our young children about what HPV is and telling our children how to protect themselves with safe sex to reduce the risk.
I would never give my daughter the HPV vaccine and I have already spoken to her about HPV and about safe sex. I think that’s the best way to protect her. I just hope to educate my daughters about their cycles so they are aware of them.
A note on the photo that accompanies this blog; Katrina says ”this was a red tent that a small group of my friends did for me to bless the passing of the twins. The twins are in that box which is wrapped in my red scarf.
I feel like the photo is appropriate as it is womb sisters holding space for each other – which is what you have done by listening to me and writing my story
In April 2006 my stomach kept bloating up and when I went to my GP he told me I was a due a smear. It came back abnormal and I went to get the LLETZ done. They told me that the cells were very high up in my cervix so I needed to get it done with a general anaesthetic.
I felt fine after the procedure, until that evening. I remember that I didn’t go to the toilet for a pee for a long time, even though I’d been drinking quite a lot of liquid, and my stomach felt really bloated. The next day my stomach felt really bloated, so I contacted the gynaecologist where I’d had it done, and they told me that there was no way my symptoms could be due to the LLETZ and told me to contact my GP. So I went to my GP a week after the procedure who also said that my symptoms had nothing to do with the LLETZ. However he could see that my stomach was really bloated. I had also put on weight, two pounds within a week. He referred me to a urologist who did some tests. They found that I had white cells in my urine although my bloods and kidney function were fine so they discharged me.
I kept going back and forth to the doctor and the hospital over the next few months. I found out I had b12 deficiency so I started having b12 injections. I was gaining so much weight. I think I put on two stone in two months, even though I had lost my appetite and was hardly eating anything. Nobody could figure out what was wrong.
In January of the following year I started getting tingly sensations in my feet. I was sent for some tests. A few months later I couldn’t feel my legs from the thighs down. They were completely numb as if I’d damaged a nerve. Two years later the tingling also started in my hands, and arms up to my elbows. I also began having problems with my eyesight and had to give up driving because I could hardly see. I was getting out of breath really easily and having trouble walking.
I had nerve conduction tests on my hands and legs. I went back every six months to see the specialist. He told me that the only explanation for the numbness and tingling was b12 deficiency. However by this time my b12 levels were completely fine, and when I’d actually had the deficiency I’d never had numbness, so that explanation didn’t make sense to me, and he was a bit confused about it too, and sent me for brain scans.
A few months later I was diagnosed with a rare form of mitochondrial disease. I was given B2 tablets and at that point I started to get better. My eyesight improved and one day I even walked half a mile. I thought okay, I’m cured, but then I started to deteriorate again, and the problems with swelling and water retention remained. I’ve got a really high heart rate but all my tests are coming back normal. I don’t know what’s causing all the swelling and bloating all since the day I had these cancer cells removed..
I kept going back to the GP who referred me to various specialists for my problems. I’ve gone downhill since the day I’ve had the LLLETZ done. I’ve not been right since. In the last six months, I’ve now got tingling in my hands,
I go to the GP and they’ve got no idea and they just send me here and there. I don’t know how many times I’ve been to the doctors. At one point I went to a different specialist about my nerve damage, baffled at first he thought I had MS, and he was just so confused and I remember them having meetings about me because they didn’t know what was wrong with me,
I went to my GP a few months ago as I got really bad. My stomach and legs swelled up. I was out of breath, and I could hardly walk. The GP told me, ‘’oh it must be down to your mitochondrial disease. You better contact your specialist.’’
I contacted my specialist again, and she’s always said to me ‘’half your symptoms are not down to the mitochondrial disease. You need to go to your GP, because you have another condition and I genuinely don’t know what it is.’’
My specialist did tell me that this mitochondrial disease, can come on after having a general anaesthetic, but this doesn’t explain the nerve damage, swelling and water retention which are not due to mitochondrial disease. Doctors have never been able to explain to me what’s going on with that but it all started the day I had the LLETZ.
Recently I’ve had tests, and they say there’s a lot of changes with my nerves and I’m getting worse. My lungs have been tested and I have very bad lung function. I can’t walk far as I get very breathless. I’ve got really bad balance, I can’t walk downstairs without holding on for dear life as my balance is really awful. Sometimes people must think I’m drunk because my balance is really bad. Recently I began to get a pain in my hip that I thought might be connected to my ovary. I’ve put on 5 stone since the LLETZ even though my appetite is extremely poor. I have had problems with constipation, and so I had a test on my bowel done, but they all came back clear. To this day I still have trouble passing water and issues with mild incontinence. I can’t work because of these symptoms.
I don’t think I’ll ever get better. I’ve had nerve damage. I’ve been completely numb in my legs for ten and a half years, and it just didn’t go away, my legs feel like lead, very very heavy.
I need help, but I just get passed from one doctor to the other. I worry that I’ll get worse, or even pass away. I feel that bad some days.
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.
In Vagina Naomi Wolf writes about a fundamental vagina-brain connection, that became severed for her when an old injury temporarily cut off the neural pathways between her vagina and brain.
Wolf started to notice that her orgasms began losing their intensity; that although she still felt physical pleasure, it wasn’t as strong. She had a short moment of pleasure without the long afterglow she was used to. She also noticed changes in her wellbeing, and relationship to the sensual world. Colours seemed less bright, and her creativity was effected too.
The book was ridiculed in the press. It was criticised as being too heterosexual, and too unscientific. Laurie Penny, writing in the New Statesman dismissed this vagina-brain connection as being no more mystical than the brain-elbow connection or the brain-toe connection.
It was interesting to me to read these reviews, because in their rush to criticise the books they seemed to not even be interested in what was really fascinating about Wolf was saying. Wolf described her subjective experience of what she lost when she was injured, and how it was mended instantly again after surgery. She was describing how sex can be a profound, transcendent experience.
She may not have the science accurately down on paper. She could of written the book in a more inclusive way. But she had the subjective experience of a vagina-brain connection, being severed and then fixed. Why were reviewers so quick to dismiss this?
The thing is when I read Wolf’s book I knew that everything she said was right, because I have been there. I’ve had the neural pathways between my vagina and brain severed and I can tell you it is exactly as Wolf describes it.
After my LEEP procedure I assumed that there was some emotional reason why I struggled with my creativity, gave up writing novels, and struggled to read them too. I also lost my passion for listening to music. I still listened to it from time time but I just didn’t feel that bothered.
I tried to write novels, but I had to give up because every time I started my brain felt like it was going to explode. I started a memoir that I never finished which I called ‘A Stone in my head’ because that’s what it felt like, as if I had this heavy stone in my head that was getting in the way of my thinking.
It was eerie when I heard Asha, my partner in the Intact Cervix campaign, describe what she felt as a dark shadow in our head. As I spoke to her I realised that what we are describing are metaphors for brain-injury .
The fact is that the relationship between the vagina and the brain isn’t fully understood yet. Those neural pathways and connections, haven’t been fully mapped and researched. It’s easy to be ‘pro-science,’ to dismiss this kind of talk as mystical, but this is a black hole where there is no science.
Instead of dismissing a woman’s subjective experience, we need to listen to her. A woman experiences a fundamental vagina-brain connection? Okay, lets research it to fully understand the scientific basis for this subjective perception. Then we can make sure medical procedures don’t damage it.
A woman’s right to an Intact Cervix is not just about our sex lives, it’s about our entire lives, our entire vibrancy, and existence in the sensual world.
I’m lucky that through these twelve years, I have chipped away at the stone in my head. I’ve got back my relationship to creativity, and music. Yoga, meditation, and actively fighting for my creativity every day, have helped me heal, and regrow those pathways. Day by day, I return a little more embodied into the sensual world.
But I still gravitate towards non-fiction books rather than escaping into an imaginary world. I rarely watch a film And I still dream that one day I’ll be able to write a novel without feeling like my head is about to explode.
Naomi Wolf describes how thousands of years ago, the Vagina was revered as sacred. It was worshipped in temples. In literature in the past, women write about orgasms as being an intense, spiritual experience. In our modern capitalist world, we’ve stripped sex of spirituality and made it all about the clitoris. This is a lie, and a social construct, and it’s time we returned to what sex, and life itself, is really about.
Vagina is essential reading for anyone who wants to connect deeply, with our vibrant, empowered sexual selves.
The LEEP procedure risks damaging the nerves in the cervix that contribute to orgasm function. Some women seem to be completely fine afterwards. But there is a significant proportion of women, whose orgasms become much less intense afterwards, and in some cases practically non-existent. And we are not just talking about women losing their ability to have an internal vaginal orgasm. The clitoris can also go numb too.
Anatomy of a women’s sexual organs is still in it’s infancy, so we don’t have a full understanding yet of how the LEEP damages the nerves or causes numbness. Many doctors performing it don’t even realise that the cervix has nerves! So the potential for healing from LEEP is even less certain.
All I can talk about is my own experience. I cannot say for sure that what I have done will help other women, because each woman who sustains damage from the LEEP is an individual, and science just doesn’t understand enough about this yet.
In my own experience I have recovered my orgasm function. I also have learnt how to have a deeper relationship with my sexuality than before my LEEP, and I have actually had better, longer, and more intense orgasms since having the LEEP. I am not completely healed, as I still have lots of pain/tension/discomfort in my cervix, but being some way on the journey to mending my sexuality, gives me hope.
How did I do it? What I had to learn was to completely slow down. Regular sex is a race to orgasm. Often we desperately want to get there, and our body contracts with more and more tension, until we finally get to that moment of tension release. For someone whose pelvic region is completely tensed up, physically traumatised, and suffering from nerve damage, the body just can’t take any more tension.
The practise of tantra based on cultivating relaxation, deep breathing, and slowing down. Instead of the race to orgasm we relax more and more, opening up to pleasure and allowing orgasms to happen, rather than desperately trying to reach our destination.
The way we have sex in our culture, lots of fast, thrusting movements, as we try to get nearer and nearer orgasm, can hurt and bruise the cervix, even in healthy women who haven’t had the LEEP. For some women who have had the LEEP and have experienced nerve damage, this kind of sex can actually leave them in pain, and discomfort for days, or even weeks afterwards.
What happens when we slow down, is instead of building more tension, we release tension, so that we are actually healing the body, to get rid of knots, and tightness. Sex or self-pleasure using tantric principles can actually be like a form of internal massage, healing the body from emotional and physical trauma. The pelvic area is vulnerable to holding tension, whether or not we have experienced sexual trauma so this is of benefit to everyone!
In Teach Us To Sit Still author Tim Parks talks about his experience with chronic prostatitis, a pelvic condition in men that often has no organic course. He learnt about how our genitals tend to go into armouring mode, as if they are sensing danger and retract as a form of protection. It’s a survival mechanism designed to protect us, but the long term tension it can cause can be extremely painful.
What I noticed is that after I had my LEEP my entire pelvic region was tensed and in pain. When we have LEEP we may be told by the doctor that what’s happening is safe, and minor. We are given an anaesthetic so that we don’t feel physical pain. But under that numbness our body does experience pain that we are not consciously aware of. Our body tenses up, after a huge physical trauma of losing a piece of what is one of the most important parts of the body.
The practise of relaxing the pelvic area, which I have done through, yoga meditation, and some tantric exercises has helped to release this armouring. So I no longer experience pain or tension everywhere, but more localised in my vagina and cervix. As I become more aware of the source of the tension, I can use my mind to consciously try to relax as much as possible. And when the muscles aren’t contracting as much, it’s possible to feel pleasure.
I tried all these approaches in the first 6 years after my LEEP. I wasn’t completely successful and I realise that one of the problems is that I was missing information about what had happened to me. During this time, I didn’t know there were other women who had this problem, and so I assumed it was a freak reaction of my own body, almost like it was my own fault. I assumed that it was entirely something I could heal and wasn’t aware of the fact that actually the LEEP causes physical damage to the nerves, and removes a much larger piece than I realised.
Discovering this was devastating, but in some ways vital to my healing process, because I suddenly realised that my cervix has spent these last 12 years being in a state of constant fight, flight or flee, wondering what on earth had happened to it. Now I’m not only focusing on relaxing and healing, but also on expressing those feelings, that my body felt, that I’d been ignoring. Huge anger at a medical system that can do this. And huge grief that something was taken away from me without informed consent. It’s been essential to be able release these feelings with a supportive listener.
One of the things that has helped me most in recent weeks is an amazing online course called Self-Cervix. Self-Cervix is 21 day journey of discovery for women who want to get in touch with their cervixes and release numbness. The founder, sexologist Olivia Bryant explains that many women have numbness in their cervixes that can get in the way of sexual pleasure, which can come from uncomfortable sexual experiences, pap smears and also the LEEP.
. In one of the course videos Olivia interviews Dr. Barry Komisaruk, one of the doctors who is involved with the research with Dr. Irwin Goldstein on the effect of the LEEP on women’s orgasm function. Dr. Komisaruk, talks about some research on rats when the pelvic nerve in the cervix was cut. The pelvic nerve is one of a pair, and what was found, is that when the rats were vaginally stimulated each day, their other nerve grew extra nerve endings! This points to the possibility of our bodies amazing healing capacity, not to just to release the trauma from the LEEP, but even work around the physical damage that is sustained.
I am not sure if it’s possible to completely recover and to be the same as before, or whether this will work for every woman. The damage that LEEP does to our physical, emotional and spiritual health is a complex tangle of trauma that very few people fully understand. But the Self-Cervix course gives me hope.
I like it because it’s something you can do to heal yourself. For someone who’s been through the LEEP, a lot of the time it can be threatening to have sex with someone else, and spending time healing your own body can give you a safe space to to let go without an agenda. As we get to know our bodies again, and heal the trauma, it may become possible to slowly think about involving a partner in sex again.
One book that helped me a lot was Slow Love: A Polynesian Pillow Book, by James N. Powell. Powell spent time on a Polynesian island learning about the Polynesian art of lovemaking and how it involves slowing down to experience deeper pleasure. I like this book because you don’t need to be a tantric guru to follow the ideas! He introduces some very simple principles that can result in more pleasure for you and your partner.
I hope these suggestions offer you a bit of hope and the possibility of healing. For more support you can join my online facebook support group Healing From LEEP. And if you liked what you’ve read, then please like and support my Intact Cervix campaign for celebrating our wonderful cervixes, and giving women informed choice about cervical procedures.
12 years ago I underwent a procedure called LEEP (Or LLETZ) for removing abnormal pre-cancerous cells from my cervix. These are the kind of cells that could turn into cancer years later.
Everything that I’d heard about the procedure led me to believe it would be completely minor. I’d bleed for a while and wouldn’t be able to have sex for four weeks, but after that I’d be back to normal, using tampons, swimming etc. I was nervous, and also confused about why at the age of 25 my cells were already abnormal, but the doctor had reassured me this was a minor procedure that would be performed in under 20 minutes with a local anaesthetic.
A week or so after the LEEP I started bleeding non-stop and went to the hospital and was given antibiotics for an infection. When six weeks after that it still felt sore, and my stomach muscles felt barely able to hold my body in a sitting position, I assumed that this was because I was just taking extra long to heal from the infection.
Except it never did really heal. The first time I tried having sex it was painful. There was also something wrong with my ability to orgasm, it felt really weak compared to what it had been like before. My sex drive had also completely disappeared. I just had no desire to have sex, but as I was in a new relationship where previously the sex had been really good, I persevered, hoping it would get back to normal.
I returned to the doctor and was told that perhaps it was a bit of scarring. She told me she’d examine me on my next visit. Perhaps this was a mistake but I went home and started googling ‘scarring after LEEP’. I found a webpage, that told me it could be burnt off, using the same procedure I’d just underwent.
At this point my gut instincts kicked in. There was just no way I was undergoing the same procedure that had caused the problem to solve the problem. Perhaps the doctor would have suggested some completely different treatment, but fear, trauma, and mistrust made me decide the safest thing to do was not go back.
In the past I’d had success curing health issues with alternative methods. In my early twenties I’d had chronic fatigue syndrome, and recovered completely when I began practising yoga everyday. A few years later while studying for exams I had a backache where I couldn’t sit down for more than 15 minutes at a time. When a chiropractor and osteopath only fixed the problem temporarily, I took the advice of a friend and started meditating while lying on my back, focusing on the tension I felt and trying to relax it. I did this and within a few months of long meditation sessions, I could sit down long enough to watch a film at the cinema, and even go on a 7 hour train journey.
At the time I couldn’t allow myself to grieve for my lost sexuality. Instead I operated with a kind of blind faith that I could heal myself. I started meditating for hours each day, practising yoga, and belly dancing, to help release the tension I felt in my hips since the LEEP.
Before all this had happened I’d once had an intense sexual experience in which I had an orgasm that seemed otherworldly. The sense of pleasure I felt didn’t seem to come from my own body, but was like something that whooshed through the air, and was planted inside of me. I joked about it being an ‘orgasm from god’ (although I’m not religious but spiritual), because it felt exactly like that!
But this sexual experience, had planted a seed inside of me, and before the LEEP I had been reading books about Taoist and Tantric sexuality and become interested in the idea of a relationship between sexuality and spirituality. This gave me the hope that even though my body felt sore and damaged there was a way of healing by tapping into this sexual energy which the books told me was universal spiritual energy.
Over time I did heal myself to a great extent. With the help of some massage techniques I learnt at a tantric workshop, I was able to to relax my body enough to enjoy sex again, and have better orgasms. I found that getting in the mood took a lot of effort, but once I got there it was enjoyable. My sex drive didn’t return to what it was, but I did at least come to a deeper understanding of sexuality, which felt like a gift out of all of the pain.
A few years later I was pregnant and something amazing happened. During the whole 9 months of my pregnancy my sex drive was completely restored. I have no idea why, and after the birth I did return to having a low sex drive again, but this experience gave me faith that there was nothing seriously wrong with my body, and that it could in time be healed.
Being a mother took over for pretty much the next five years of my life. Sex was much better than before the pregnancy, but I still didn’t have much of a sex drive. I found myself ignoring the problem, telling myself it was normal to be tired and not in the mood for sex, because I was a tired parent now, but deep down, I knew that my issue went much deeper.
From time to time through these years, I’d always wondered if this had ever happened to another woman. I’d googled from time to time, and since I never read of anyone else experiencing this I assumed it was just a ‘freak’ reaction of my own body. But one day I discovered a story that read so much like mine I was in complete shock.
What was most shocking and quite amazing to me, was that the woman described changes in her creativity, and in her very sense of perception of the sensory world around her. These were all symptoms I had experienced, but it was almost like there was no way I could grasp how a ‘minor’ treatment on my cervix could have caused all of these.
I read the comments in the article and discovered other women had been dealing with painful sex for years. I began to hone my google search and discovered more and more women who were dealing with the long term side effects of LEEP.
After reading about all of these women my perception completely shifted. Before I’d kept pretty quiet about my experience. It was like I couldn’t find the voice to tell my story because I thought I was the only one. And I couldn’t see the point in telling my story since I didn’t want to put women off having smear tests.
Now as I research more I have heard anecdotally from some women that another procedure called LASER seems to come with less side-effects. If you are going through this at the moment you might want to ask your doctor about it.
I am also finding there are good, scientifically- based reasons why some women may wish to avoid having smear tests completely. Dr. Margaret McCartney explains that despite some of the devastating stories we hear, cervical cancer is a rare disease. Because of the emotional anxiety testing causes, and the side effects of intervention, the risks do often outweigh the benefits. In her book The Patient Paradox: Why Sexed Up Medicine is Bad for Your Health she explains why each woman must make an informed choice and weigh up the risks for themselves before deciding to go for regular testing.
There are the risks of LEEP that were never mentioned to my young, naive, 25 year old self. The risk of cervical stenosis, of having a miscarriage, or a baby born prematurely. And there is this risk that seem completely unspoken; the destruction of a woman’s sexual self.
Asha, the author of the Unspoken Dangers Of LEEP article I linked to above was told by her doctor that she didn’t need to worry since there are no nerve endings in the cervix. However my tantric research led me to discover that women actually have three different kind of orgasms, clitoral, g-spot and cervical.
Feminist Naomi Wolf went through a similar experience to me and Asha, (though for different reasons) which she documents in her book Vagina. She visited a doctor who explained to her that each woman has a slight different arrangement of nerve endings in her cervix, g-spot, and clitoris. This solves the age-old argument of whether the g-spot exists or not. Sexual sensation is slightly different for every woman and not all about the clitoris.
When Wolf temporarily lost her sexual sensation, She also notices she loses her creativity, a sense of transcendence and the brightness and colour that she normally perceived in the world. From this experience she learns that in a sense our cervix, vagina and clitoris are actually an extension of our brain.
It was learning this that made me understand many strange aspects of my life since the LEEP. I have had difficulty remembering dreams and also with my creative thinking. I have also struggled with feeling like I am really connected to things. For years I struggled with having the physical strength to do everyday tasks and to really ‘be’ in the world. These are all things that seem quite intangible and difficult to articulate, but when you have been in touch with your sexuality and creativity, losing it is like losing your self.
As I read Wolf’s words and heard from other women, I have completely reframed my experience. It’s not a weird side effect that my body had, it’s a perfectly understandably reaction to having my body cut into. I am shocked that this is considered an acceptable way to treat women’s bodies.
I am also beginning to realise that what happened to me was an act of violence. Immediately after the treatment, I remembered experiencing a pretty constant state of extreme fear, but I felt that there was nothing I could pin my fears onto. My job was stress-free, and life had been good. I have also had screaming episodes in my sleep for years that started around the time of the LEEP. I never remembered what was happening in the dreams, but this symptom also mysteriously disappeared while I was pregnant and for the first two years of my daughter’s life. Ever since I discovered that other women were effected like me I have found myself shaking as I read and research cervical smear tests, and the LEEP. Having read the work of trauma expert Peter Levine, I know that this shaking is a natural way in which the body releases stress after trauma.
It’s as if finally after all these years my mind has caught up with what my body always knew – that this ‘medical procedure’ was an act of sexual violence. It is based on an archaic understanding of how women’s body’s work and a gross disrespect of the relationship between body, mind, creativity and sexuality. I do not understand why doctors are doing this to women’s bodies. Is it because they do not understand what happens to us? If it took me 12 years to speak up I assume there are other women like me, who are silenced and traumatised by an act of violence that they cannot name.
To my 25 year old self, orgasms were pretty high up on my priority list. If a doctor had told me that there was a risk to my sex drive from the procedure I know I’d have walked out. I don’t have smear tests these days and I’m not worried about abnormal cervical cells (in most cases they don’t turn into cancer). Real symptoms are something to address and take seriously, but I never had cancer. I didn’t have symptoms. This preventative treatment, at least for me, is far more damaging than it’s benefits. Having a life with depression caused by sexual dysfunction, or an increased rate of heart disease due to lack of orgasms are health threats too. I’m doing well at rebuilding my sex life, and I don’t want to risk that. I’m in complete agreement with Dr McCartney, the risks of treatment for abnormal cells far outweigh the benefits.
Have you side effects from LEEP or from other routine medical procedures? Were you informed of the risks?
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