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