Blog

A Cut In The Brain By Kate Orson

A Cut in the Brain 2

What do you know about the cervix? Maybe you have a vague idea that it’s involved in childbirth, and that it can become cancerous. Or perhaps you are already aware of its orgasmic nature.

Kate Orson learnt about the cervix the hard way, when a common medical procedure called LLETZ, which removes abnormal cells from the cervix, caused her to lose her sexual function.

Sex became painful. She lost her libido, and her ability to orgasm. She was too scared to go back to the doctor.

Twelve years later, still traumatised by what had happened, Kate found out that she was not alone. In an article, a woman named Asha wrote about experiencing the same problems, and also more intangible side effects to her creativity, her thinking, and her very perception of being a human being existing in a sensual world.

Kate and Asha, with the help of the American sexuality expert Dr. Irwin Goldstein, discovered that there are very few doctors who are aware of the up to date research about the cervix, and so they are cutting into a part of the body they do not understand. Could there be thousands more women, living in silence, and being told their symptoms are ‘all in your head’?

A Cut In The Brain is a memoir about discovering the truth about what lies behind gynaecology; that there has never been any full anatomy done of the female sexual organs, and every gynaecological procedure is a literal ‘stab in the dark’.

It’s about two women; one who runs from the medical system and tries to heal herself with alternative medicine, and another who stays to fight. It’s about the power of friendship to transcend the darkness of our sexist culture. It’s about the growing circle of women who are standing up to the harm caused by gynaecology.

This book is for anyone who has ever had a smear test, or who wants to support their partners and friends in a world where women’s health is still built upon an outdated patriarchal system. It’s also for those who’ve ever wondered if there’s something ‘more’ to sex.

Support the crowdfunding campaign for A Cut in The Brain today.

It’s Not Just The LEEP/LLETZ

dreamstime_xxl_103771074.jpg

Following the publication of this article in Cosmopolitan I have been contact by women who have sexual side effects not just from the LEEP procedure but from other gynaecological procedures.

To date women have reported issues after

  • caesarean
  • abortion (D&C)
  • induction (with a balloon catheter)
  • endometrial ablation
  • insertion of IUD
  • hysterectomy

The scale of this issue is much wider than I thought. But really, it’s not surprising. Gynaecologists do not study pelvic neurology as part of the curriculum. That means that all gynaecological procedures are introduced without any understanding of how they will effect pelvic nerves, and sexual function.

All of these procedures have a risk of damaging cervical and uterine nerves. There is no informed consent. Generations of us have been harmed, and continue to be harmed on a daily basis.

We need to have these conversations with our friends, and share what we know. They may be suffering in silence too.

Trauma after LEEP/LLETZ

 

sharon.png

Are you feeling traumatised since your LEEP/LLETZ procedure? Or are you in chronic pain? I have been working to release pain and tension in my cervix and pelvic region that I have had for 13 years.

For a few years while living in Vietnam I went to an amazing masseuse who was able to help me release tension in my pelvis, and at that time I never knew that what I really needed existed – some way to touch the cervix, and to release tension and pain in the cervix.

Now as I’m working with Olivia Bryant to create a version of Self:Cervix for LEEP recovery a whole new world is opening up to me. I’m learning about bodyworkers, and Arvigo therapy, and all kinds of things I wish I had known about 13 years ago.

I live in Switzerland where these kinds of therapies are pricey, so I’m grateful that I have my own private practise that I can do to work through the physical pain and tension, as well as the emotional baggage, and trauma that my body has been holding through all these years.

I was just chatting yesterday with my friend Asha who has been working with a pelvic osteopath for the last year, and how it’s a bit like the layers of an onion, that as we work and release one layer of tension, there is another one waiting there.

So while there’s no quick-fix miracle for restoring our body to how it was before the LEEP, there are things you can do, and I’m learning a lot on this journey.

Yesterday I spoke to Gemini Adams, who is trained in Somatic Experiencing and TRE (Trauma and Tensions release exercise). She happened to mention the Psoas muscle, which connects the upper torso with the pelvis and is located in the lower back. As soon as she mentioned where the muscle was, I realised that mine was clenched tight, and full of tension. What’s interesting is that the Psoas is known as the ‘fight or flight’ muscle – the muscles contract, when we are under threat. And for the 13 years since my LEEP, my body has still felt under threat.

Our conversation made me think about how trauma causes pain, and how often when I’m practising de-armouring (the Self:Cervix technique) I often feel like my body is ‘choosing’ to hold onto the pain and tension, and that as I try to release it, it’s a whole body/mind experience trying to let my body know that it’s safe now, it’s okay to release what I’ve been carrying.

I often think about why my body has held onto this story for 13 years, how some women have LEEP and seem to recover fine, and how my body wouldn’t let me ignore what happened to me. I think of this pain, as a story that my body wanted to tell but couldn’t because up until the last few years, I didn’t really understand what had happened to me, and all the problems with LEEP, and the medical community not admitting what they are doing to us.

As much as the healing happens on a physical level, I think it also happens through telling my story, writing, and talking with others, who help me feel safe and understood.

Today as I practised some de-armouring in the morning I was aware of my Psoas muscle, and worked consciously to relax and let go of the tension.

As part of our working making this special Self:Cervix course, I’m talking with experts, and arranging interviews that I will record and share on the course, and it’s interesting how much this work is effecting my own tension and pain. As I gather knowledge I have more awareness of what I need to heal and recover, and I’m noticing that I’m going deeper into my own Self;Cervix practise. I look forward to sharing more of what I learn on the journey.

Olivia and I will have a free webinar coming up soon, where she’ll be sharing the basic de-armouring practise. We hope you’ll join us, and be inspired to come along on this healing journey too!

Emily’s Story: The devastating consequences of coercive smear tests

Normal_PAP_(Cervical)_Smear.jpg

I was forced to have yearly pap smears from 18-23.  Being so young I wasn’t aware that the test was elective and that I had a right to refuse.  My attempts to revoke consent were unsuccessful and I was told that it wasn’t optional and that I needed to cooperate.  I’m still ashamed that I didn’t get dressed and walk out of the office but I can’t describe my level of fear.  I felt as if I was trying to get away with doing something illegal by resisting.

I was born with a condition and that I need daily medication for. These paps were taken opportunistically when I would go to the GP to get the medication I needed.

I’m now 32 and all this time later I still feel hollow and unwell within myself.  It feels like I’m carrying around a body that I have no ownership of and yet, it is a daily liability to my psychology. By forcing me into exams I didn’t consent to they took me away from myself and inserted themselves as the new owners.  Those years of coercion have also destroyed my sexuality and made me asexual, viewing my body as only an object.

If it wasn’t for my medical condition I would stop going to the GP. Women who have chronic conditions are especially at risk of opportunistic and coercive pap smears.

For more information about coercive pap smears, visit For Women’s Eyes Only, a fantastic resource for women dealing with trauma after smear tests without consent.

This is what happens when you mention Cervical Neurology on Twitter

file (2).png

I happened to mention cervical neurology on Twitter today, and got accused of ‘joking’ by a Colposcopist and cancer surgeon. When I questioned what he meant he deleted his tweet and then promptly blocked me.

These are the kind of doctors that women are trusting with their cervixes, and it’s depressing and horrifying.

There are still many doctors out there who think the cervix has no nerves, and it’s important to note that this is an assumption, it’s not based on any good medical research.

The top doctors know that the cervix has nerves. When I questioned Dr. David Goldmeier, a top London sexual medicine about why doctors don’t understand the cervix has nerves he told me ”I think I was taught at medical school (1966-1971!!) that there the cervix is not innervated. So the answer to your question is “ignorance” and not looking at latest literature.”

So if you’re a doctor out there on Twitter thinking that you can ridicule lay people, you might want to check you’re up to date on the latest literature first.

 

While women suffer, men get state of the art surgery to save their sex lives

weareequal.png

“There is a strong rationale to do  everything we can to spare the nerves when safe to do so, particularly where patients are so young and have got a lot to lose.

“We know that nerve-sparing works. The more nerve tissue is left behind, the greater a man’s chances of being potent after surgery. If we can’t leave the nerves at all, they’re extremely unlikely to be potent, even with Viagra.”

New Prostrate Cancer Operation Can Help To Save Men’s Sex Lives 

Contrast this with the state of women’s health where our nerves haven’t even been properly studied or acknowledged.

Men are actually refusing surgery when they have cancer because they are worried about how treatment will impact their sex lives. Perhaps this gives an indication of how vital, and central our sexuality is to our being.

This refusal is resulting in changes in medical treatment to meet the demand for safer procedures that preserve sexual function.

Perhaps women too, would refuse treatment at much higher rates if they understood the role the cervix played in sexual function. Despite society’s conditioning to the contrary we are just as sexual as men, and our sexuality is just as vital and important.

 

Fiona’s story

 

depression-1250897_960_720</

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.

LLETZ (LEEP): How to make an informed choice

cropped-cervix.jpg

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.

Cervical Health Dysplasia and HPV

Empower and Shine: A support group for managing HPV

Curing Cervical Dysplasia Naturally UK

 

Katrina’s Story

35426475_10216775206842167_2453786632352956416_n.jpg

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 ❤❤
Thankyou.”