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Long Term Side Effects From LLETZ (LEEP)

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Katkin
Long Term Side Effects From LLETZ (LEEP)

Hi everyone, 

I had the LLLETZ 12 years ago, and suffered really extreme side effects. I ended up losing my sex drive, sex became painful, and I had all sorts of other side effects. 12 years later I'm still trying to recover. 

I used to think LLLETZ was a minor procedure. I'd met loads of women who had it and were completely fine afterwards. Then I met another woman online who had similiar side effects as me. i found out through her that the LLETZ was introduced before any anatomical research was done on the cervix. Doctors were literally cutting into a part of the body without knowing if it had nerves in or not!

Now the up to date research shows that there six very important nerves connected to the cervix but shockingly, a lot of doctors still don't know this. Through talking with an expert who is doing research on side effects of the LLLETZ we learnt that LLETZ can cause damage to orgasm and sexual function by cutting into the nerves. Doctors performing LLETZ don't even consider this. 

Myself and the other woman were told that LLETZ involved removing 'just a few cells' from our cervixes, but I've since learnt that the LLETZ actually removes up to 2cm. We feel completely betrayed and misled by the medical system.  We understand that LLETZ treatment helps to save a small amount of lives, but we are deeply concerned at the stories we are hearing from women suffering from loss of their sex lives, chronic pain, and even premature menopause. We know that we wish we had been informed of these risks beforehand so we could make an informed choice about treatment options. 

We started a support group for women on facebook. If you are going through long term issues after LLETZ, and would like to join please send me a pm. thanks. 

Lisajoy

Hi Katkin I also have had so many problems since I had my LLETZ in May 2016. Please would you add me to the Facebook page you mention? Please let me know what info you need. Best wishes, Lisajoy

I feel exactly the same. Lletz in 2015 infection instantly after. Severe lower back pain during periods. Heavier periods to the point im unable to leave the house for 10 days!

Low sex drive. I am soooo sick of it all.

No one told me it would be like this im 29 and literally feel in a rutt. X 

Ritard81

I would love to be able to join your group on Facebook. Please  let me know how I can join. I would love to be able to speak with other people who are going through the long term effects from a leep. It's been 8 years since mine and I'm still dealing with the sexual side effects from it.

Loulou1980

I would love to join your group as I had my lletz done in January and haven't been able to get my sex drive back since it's causing so many problems in my relationship... I never thought it would affect me so much I feel useless 

Cocoa

Hi I just had it. I was practically sold this procedure as it’s best treatment for cin2 and that there are no side effects. I got infection straight after my entire body writhing in agony on my second lots of antiobiotics and been told to go to hospital if this carries on. I’m absolutely fuming and wish I had been explained everything. The procedure happened on Friday which I tried to make during week in case of complications to get to doctor and they wouldn’t budge! Please can I have the Facebook group xx

A smile is contagious 

Tinkerbell001

I had my Lletz procedure on January the 2nd. I'm bleeding after sex which is embarrassing and depressing. Also my periods are awful. So heavy and painful. They were a breeze before. They are also irregular now. I'm glad my CIN 3 was removed though. Got my 6 month check up and re smear in June, so will chat to the nurse about it all then. Praying it all settles down and goes away!! So glad this site is here it's reassuring to not be alone. 

Lm1984

I had a lletz in April and haven't been the same since, despite always being so regular with monthlys and having literally zero symptoms since my smear and colposcopy. Felt so anxious ever since at every sign of irregular discharge and I've bled after sex too which has got me even more nervous about cervical cancer. It's awful. Only reading these has put my mind more at ease to know there are others going though it! Due my 6mths smear in about 8 weeks and weirdly- cannot wait! Would also like details of this Facebook group please, thank you x

Jojobirdie

Hi, Just come across your forum now that I am facing a 2nd Lletz. Had one 7 years ago for CIN3 cells and they showed me the piece of cervix they removed and it was around 2cm round. Ever since periods that are so painful painkillers don't touch it and I can't do anything for 2 days plus heavy bleeding that I have to visit a toilet every hour for 2 days and have to set an alarm twice in the night to change. Went right off sex and it hasn't come back and now am pre menopausal at 44. 

GP  tells me there are absolutely no side effects to a Lletz but if you read the small amount of medical research they don't actually know what the side affects are but suspect they are all of the above! 

I would love to join your Facebook page please 

Many thanks x

Rosiebird

It's nearly 2 years since I had my 2nd LLETZ and my hormones are all over the place and I'm struggling to cope with life, looking after my 2 children etc. I would love to be part of the fb group, could I have details please?

Rosie

Tazzy151

Hi everyone, just looking for some advice. I had a lletz procedure in september after my smear showed HPV, CIN2 and CIN3. The procedure itself was quite traumatic as my cervix never behaves itself.  It took 2 male nurses to attempt to clamp my cervix for half an hour which was extremely painful. 

Results came back that they had got everything out during the procedure. I had an infection after and felt awful for about a week, exhausted. However just over 4 months on and my periods are extremely painful and all over the place. Its sounds gross, but around 5 days before when I wipe its a little pink, then I have thick almost black discharge, which is quite clumpy and stringy right up until the blood changes to bright red. Presumably this is the start of my period. 

I have read some threads and have seen similar and was wondering if anyone can provide any information. I have been referred to my GP for another smear 6 months after the procedure, but I honestly don't think my cervix will be healed by then.

Does this situation get any better? 

Many thanks x

Lainee87

Tazzy151 

I am in the same situation almost I have had 3 rounds of Lettz treatment I have constant bleeding every time I have sex it's like a murder scene iv have high grade cells I still don't understand why they keep chopping at me the 3rd round I could feel everything was the most painful one yet I'm 33 and have near no feeling down there absolutely no sex drive I really am concerned and feeling less of a woman we are trying for a baby also which all this bleeding is not comforting I have no children my doctor doesn't seem any bit concerned feeling scared and confused to the point where I can't sleep Googling everything which doesn't help the case anyone any similar experiences that could help ease my mind please and thank you 

Elaine 

laurenhill14

Hi Katkin,

I'm so grateful to have found your post, even if it's from 4 years ago! I had the surgery at 24 years old, my first ever smear due to high grade abnormal cells. I then came off the Depo injection to start preparing my body for having children to find out a year or so later that I was in fact having huge problems with my periods. The surgeron took a large amount away from my cervix which led to extreme scarring meaning I was having a period each month but this wasn't able to pass through my cervix. The pain from this can only be described as what I imagine contractions feel like - it would floor me, make me feel sick and I couldn't eat. This went on for 8 months until anyone took me seriously after repeatedly hearing 'just wait for them to restart love, it's just you stressing and your body's response'.

 

Eventually I got sent for an ultrasound which confirmed my uterus was full of blood from mensturating each month. I had a hysteroscopy to drain this and reopen the cervix. This didn't work. I waited another 6-12 months for more ultrasounds and moved hospitals due to them just wanting to put me back on birth control as the only option. I then had a second hysteroscopy where the gynaecologist told me my cervix is very short and may be incompetent for carrying children. I had to have to coil fitted for 6 months to allow me to menstruate each month. I have now had this removed and I am seeing a specialist in fertility and gynaecology tomorrow. This all started 4 years ago and it's just been a rollercoaster of pain, conflicting opinions, embarrassment and the constant not knowing if I will now ever have children. The best thing I did was get a second opinion from the gynaecologist who was a lady thank god!! She has never seen this severity before of scarring from the surgery and has referred me to someone who can help. It's taken a year to see the specialist but really hoping for some positive results tomorrow. Sorry for the lengthy message, I just can't believe that one 'minor' surgery could lead to so much complications - the 2 page leaflet didn't state any of these side effects! Could you please send me the link to the Facebook group if it's still running? 

laurenhill14

Hi Katkin,

I'm so grateful to have found your post, even if it's from 4 years ago! I had the surgery at 24 years old, my first ever smear due to high grade abnormal cells. I then came off the Depo injection to start preparing my body for having children to find out a year or so later that I was in fact having huge problems with my periods. The surgeron took a large amount away from my cervix which led to extreme scarring meaning I was having a period each month but this wasn't able to pass through my cervix. The pain from this can only be described as what I imagine contractions feel like - it would floor me, make me feel sick and I couldn't eat. This went on for 8 months until anyone took me seriously after repeatedly hearing 'just wait for them to restart love, it's just you stressing and your body's response'.

 

Eventually I got sent for an ultrasound which confirmed my uterus was full of blood from mensturating each month. I had a hysteroscopy to drain this and reopen the cervix. This didn't work. I waited another 6-12 months for more ultrasounds and moved hospitals due to them just wanting to put me back on birth control as the only option. I then had a second hysteroscopy where the gynaecologist told me my cervix is very short and may be incompetent for carrying children. I had to have to coil fitted for 6 months to allow me to menstruate each month. I have now had this removed and I am seeing a specialist in fertility and gynaecology tomorrow. This all started 4 years ago and it's just been a rollercoaster of pain, conflicting opinions, embarrassment and the constant not knowing if I will now ever have children. The best thing I did was get a second opinion from the gynaecologist who was a lady thank god!! She has never seen this severity before of scarring from the surgery and has referred me to someone who can help. It's taken a year to see the specialist but really hoping for some positive results tomorrow.

Bethany23

Hi there, I've been thinking for a while about posting on here, I've been looking for answers to my situation.

I had lletz nearly 2 years ago after my first smear showed high grade changes, since then I have had literally little to no labido, dryness, itching, discomfort and stomach aches. I don't have periods as I'm on the depo and haven't for a long time. When I did they were extremely heavy. 
gp referred me to some psycho sexual lady as the gp thought it was in my head after swabs came back all clear, no thrush etc either. 
I am trying to get back into the gp as it is continuing, I have changed wash powder and spun washing out again and don't use conditioner, bath stuff I have tried not using anything at all just water but the issues still persist. I'm 28 and stuck on what to do, I understand the situation with covid but not getting any further. I do get extreme stomach ache lower down like period pain, ibuprofen takes this off only slightly with a hot water bottle on top on that and go to bed early. I am trying to get tested for endometriosis but again no further with that. 
if anyone has any advice and can say there's a light at the end of the tunnel please do .

More Information

Abnormal cervical cells and treatment

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