Long term side effects of LLETZ

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For anyone dealing with long term side effects, I have started a support group after dealing with problems for 13 years. I thought I was the only person who had issues with this 'safe, minor' procedure, until I found stories of other women online. 

I've had problems with sexual pain, and orgasms, and there are now over 100 women in the group many dealing with similiar issues. 

If you feel like your doctor is not answering all your questions, or dismissing physical issues as being psychological or not related to the LLETZ then please join us! We are trying to raise awareness of the problems which most doctors are not aware of, and we are trying to figure out how to heal our bodies. 

if you go on facebook and search for Healing From LLETZ you will find it. 

 

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  • Posted

    Of course, most of these procedures were/are unnecessary and avoidable.

    Here in Australia we have a program that has seriously over-screened women for decades and we've also ignored long standing evidence. We screened far too early, far too often, inappropriately (during pregnancy, shortly after delivery etc) and for too long. Excess does not benefit women but greatly increases the risk of a false positive and over- treatment.

    Very few women gave their informed consent for the testing, the information provided, in my opinion, is so incomplete and biased in favour of screening, that's impossible. Many women gave no consent at all but were coerced, (to get the Pill) misled or pressured into testing.

    cervical cancer has always been a fairly rare cancer in the developed world so it's concerning to know that the lifetime risk of colposcopy and biopsy under our program is a huge and hidden 77%... the lifetime risk of the cancer is less than 1%

    The numbers who are put through cone biopsies and other treatments is harder to find, no one wants to know but the numbers would be high. There's endless funding to look at coverage and ways to get more women screened or looking at the so-called benefits of screening (usually greatly exaggerated) but very little on the harms of screening and those left worse off.

    i was one of the lucky ones, I knew something wasn't right, the aggression that women faced when they questioned or declined the test, supposedly an optional test, and so many young women having "treatments". I did my own research, was shocked at the evidence and made an informed decision not to screen, I was content with my near zero risk of cc. I found out some years later that hpv- women cannot benefit from Pap testing. (That's 95% of women between 30 to 60)

    Our program will change to hpv testing in Dec this year, but this is after decades of serious over-screening and over- treating. I believe the legal rights of women have been abused by these programs and that most of this damage was avoidable.

    The Netherlands is the country to watch, they follow the evidence, don't waste money or allow vested interests to control these programs, they offer 5 hpv tests or hpv self testing at 30,35,40,50 and 60 and only the roughly 5% who test hpv+ are offered a 5 yearly Pap test. This saves more lives, takes most women out of Pap testing and sees over-treatment rates plummet.

    My younger sister had an unnecessary cone biopsy, it was a nasty experience but it's dismissed as "minor" by these programs. No one wants to know about the women left with a damaged cervix, who are left with continuing health, obstetric and psych issues as a result of one of these treatments. Those who end up with cervical stenosis or cervical incompetence, endure high risk pregnancies, have premature babies, require c- sections. No one wants to know, you'll never see or hear about these women from an official source, it doesn't help them sell the screening story and the so-called success of these programs.

    In my opinion, censorship has been firmly in place, when you're giving women a whitewashed version of the evidence, you must hide anything that might properly inform women, only now are we seeing a bit more real information out there. I believe our program was forced to change as more women dropped out of the program and it was dangerous to continue with more informed women around...

    Our new program is excessive as well, we'll be testing from age 25, long standing evidence shows both Pap and hpv testing are not recommended before age 30, they don't help, just lead to over-investigation and over-treatment. We'll test every 5 years from 25 to mid 70s so again, test too often, and hpv self testing will be denied until women have declined the invasive hpv test for 6 years. The Dutch invented self testing device is very reliable and more women were obtaining it online and using it, more women now understand the significance of being hpv-... I now see online access to that device appears to have been shut down, I assume in the hope of forcing women into the program or back into the program. The option of hpv self testing with a reliable device should be available, many women find the speculum exam unacceptable or painful, esp. older women.

    We talk about the abuse of women but I believe these programs have violated the rights of women from the very beginning, women have been treated like targets, a screening herd, not as competent adults.

    Good luck with your support group, my heart goes out to all those harmed by this testing...and then just tossed aside. Your group would have been silenced up until recently, but thankfully, we're finally seeing more critical discussion out there.

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    • Posted

      First of all, I'd like to say "thank you" for bringing this to the forefront.  I've felt as you do for some time about how women are treated with regards to this testing process and the procedures associated with a positive finding.  I believe I was a "victim" of overuse in this regard.  I had regularly seen my obgyn for fifteen years on a yearly basis in order to keep up with my birth control pills until my husband got a vasectomy.  All paps had been neg except for two which were just redone and diagnosed as metaplastic changes.  My then doc retired and I decided a few years after to get a pap and found another doc.  First visit with her yielded a phone call and "severe dysplasia" after all that  time and a prompt demand of a colposcopy.  It threw me for a loop, no pun intended!  She was persistent and insistent so I had it performed with a four punch biopsy and ECC which were both negative and a huge shrug from the doc.  She admitted I didn't fit the risk profile so had asked the lab to test it again.  But since the pap showed moderate to severe dysplastic cells (which by the way, metaplastic cells look very similar) and the biopsies showed nothing, a leep "cone" was the way to go.  It all happened so fast that I didn't have much time to question it and her sense of urgency frightened me.  So I scheduled the procedure but called another obgyn office and they questioned the whole thing as I did and invited me to come to them.  But instead of doing that and putting myself through all of that again, I went ahead with this common outpatient, in office procedure and almost bled to death!  She couldn't stop the bleeding and I was scared out of my wits!  Then after all of that, the only finding she came up with was a small area of CIN1 with clean margins and and another shrug and a "Oh by the way, you have hpv."  I didn't even know what that was at the time and she said, "It's common, it's normally called "genital warts".  I said, "I don't have any warts!"  She then said, "Oh, it's not the kind you can see."  She gave me no hpv number or any other info other than put a pamphlet in my hand and send me on my way.  I saw her for the frequent follow-up checks the first year after then she was gone, moved to another city.  I really think she was using this procedure to pad her pockets before she moved to another practice in another state.  Just my opinion.  And I suffered through this nightmare of terror and probably a needless procedure.  I haven't been able to even find this doc anywhere.  I've thought about doing some research and maybe finding some other patients of hers that went through this same scenario and suing her if in fact she was using our ignorance and fear to make some extra money. 

      We as women have known so little about our health care with regards to the pap and how often false positives can happen because we're so focused on the false negs but living in fear based societies seems to be the norm in order to sell product and fatten the bottom line more than for the good of health care. 

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  • Posted

    thank you Eliz! I agree with you. Nobody is being honest about the harm being caused by screening, and we are not given informed choice. 

    The problems I had were to do with sexuality. I lost my ability to orgasm properly, sex became painful and my desire disappeared almost completely. Before that I really enjoyed my sex life, and had a high level of desire. 

    At the time I thought I was having some kind of freak reaction. Since everything online said this was safe, and minor, I blamed my own body. 

    12 years on I read an article online and realised that what happened to me was not a one off, it is happening to literally thousands of women. The woman I connected with Asha, went searching for answers and found a doctor in the US who is now researching the harm that has happened to us. 

    The problem with LLETZ is that the cervix is a sexual organ. There has been research to show it has 3 pairs of nerves, and is important for orgasm. It has more nerves than the clitoris! 

    Yet most of the medical community ignores this up to date research about the cervix, so they just don't acknowledge the cervix as being sexual. 

    Women are experiencing nerve damage but it is being treated as psychological simply because doctors are not up to date on their research. 

    I have a blog and campaign with a facebook page called Intact Cervix. I interviewed one woman who developed PTSD after the LLETZ. She saw a top sexual medicine specialist in the UK who told her that her sexual numbness was due to the PTSD. He just would not acknowledge that having a knife cut a piece out of her cervix could cause sexual numbness, and that that experienced caused PTSD! 

    Doctors have been getting away with this for decades because female sexuality is treated as if it doesn't exist. There are still articles about the 'mysterious g-spot' because we haven't got the anatomy to prove it exists. This leads women vulnerable to harm. They've been getting away with it for decades. Maybe because having a happy, healthy sexuality has never been a right for women. But I hope that through coming together with the other women harmed we can fight for informed choice and for this to change. 

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