Hi! I recently had an abnormal smear, and a colposcopy confirmed CIN2 and HPV (not 16 or 18 though). They sent me information about the LLETZ procedure and asked me to come in to chat about whether to do the procedure or just do another colposcopy in 6 months. Throughout the process, everyone has gone out of their way to stress that I shouldn't panic, this likely wouldn't turn into cancer for years but better to catch it early, etc. etc. All fine, I was (mostly) calm.
I read everything I could find about the procedure, and since I'm 33 and haven't had children yet, I was very concerned about any potential risks to future pregnancies. I also found a lot of horror stories about permanent emotional and sexual side effects that the medical community doesn't seem to take seriously... obviously a minority, but all in all it seemed like an invasive procedure that I don't want unless I really need it. I also found some recent studies showing that CIN2 resolves itself in more cases than previously thought, potentially 40-50% depending on age and HPV strain.
When I saw the doctor, though, she was really pushing me to do the LLETZ now. She kept saying that the risks were minimal and much less than the chance of it getting worse, and that while unlikely, it could even become cancerous in 6 months. She said we could chat again in a couple of weeks. I'm obviously not a doctor, and I'm really uncomfortable overruling my doctor's recommendations for treatment, but I just feel like based on all the statistics I've seen I would like to make some lifestyle changes, go off hormonal birth control, etc. and give my body a fighting chance to heal itself before permanently slicing off and cauterizing a delicate part of my anatomy.
Am I just being way too blasé about CIN2?? Has anyone over 30 had it regress in 6 months, or has anyone had drastic changes in the other direction in that time? I'm really stressing about this now! Thanks in advance! :-)
I can't say whether you are being blase about cin2, I just went straight in at cin3. But what I can say is that i've had 2 lletz procedures and although the immediate 4 weeks after the procedure is a bit rubbish there have been no long term effects either emotional or sexual.
I don't want to offend anyone but I have seen a few websites that put about some very unscientific mumbo jumbo about sexual/emotional effects of lettz. I myself question the motive of the people who put this stuff on the internet. I would avoid such sites as they show a very polarized point of view. You will get a much more balanced repsonse from the ladies on this site.
I'm 35 with two children. We would like a third child asap so I decided to have a lletz done for cin2 before it got any worse.
My doctor said that he took such a little piece that it shouldn't affect any future pregnancies. I've also had no long term side effects from the procedure either and I'm glad it's gone now
I’m one of the women who got sexual side effects from the lletz. We are in the minority, and a lot of women do report being fine, but it is happening. There is ongoing research about these sexual side effects being done in the US by a leading sexual medicine doctor, and they have been written about in New Scientist. Our side effects were also the subject of a Jo’s Trust Survey to find out more about them as a possible call to research for more investigation.
Not exactly ‘mambo jumbo!’ I’m afraid. I really wish they were!
If you are watching and waiting you might want to look into possible lifestyle changes that can help with clearing hpv, there are a few helpful fb groups for advice on this. Send me a pm if you’d like info.
Hi :) I'm currently watching and waiting for CIN2 at the mo and have my next appointment at the end of March. I'm a little younger than you (29) but I've done a lot of reading...studies say that CIN2 has a 50% regression rate over 2 years and 60% for those under 30. When I rang up the secretary for the doctor she said that there is no chance that CIN2 will go away by itself and I must have the treatment asap. I've already decided to give my body the 2 years and see if it will clear, if not or it gets worse I will then have treatment but I don't like the way they seem to try to bully you into it.
I can't believe they said that to you on the phone Purple Elephant! A secretary should not be giving medical advice, especially not when it's totally inaccurate. There is so much misinformation out there about CIN.
Yeh I was very unimpressed with her she was really off with me and hung up and got the actual doctor to ring back, who was a lot nicer! When I go for my next appointment I'm going to complain about her!
Thanks all for responding! CatherineB that's good to hear! There is definitely a part of me that wants to get it over with and move on. I hope all goes well with the next baby! :-)
Katkin I'm so sorry to hear that! I never thought it was mumbo jumbo - no one has any reason to make these things up, it's just really hard to know how common it is. It seems like it hasn't really been studied much so doctors fall back on "there is no evidence." :-/ I'm definitely trying to eat better and exercise and sleep more. I've been pretty stressed about other things over the past couple of years so I haven't been giving my body the easiest time! Hopefully taking better care of myself will help.
PurpleElephant that is AWFUL! A secretary definitely shouldn't be giving out medical advice, not to mention false information!! I think we read the same study! :-) The regression rate was also a lot higher for HPV strains other than 16, which gives me some hope. It's good to know that someone else is in the same boat. I think I'm going to stand my ground and wait, and if it stays the same or gets worse I'll obviously have the treatment. Good luck with your next appointment!!
Taking care of yourself sounds like a good option. Anecdotally a lot of women seem to have emotional stress at the time of their dysplasia, and I know women who are watchiing and waiting who find help for this, and see it as key to their healing and recovery. If only this was researched more, it would be easier to know what to do and how to help yourself!
There are some small studies about sexual changes after LLETZ. Because they are small they haven't been recognised by the medical community as a whole, but this shows an estimate of around 15% of women having sexual problems after LLETZ. That seems about right to me, (though can't say for sure) as many women report being fine, but there are a significant number effected. I should say that some women who have issues do recover with time, others don't.
It's a complicated decision, and I wish you all the best with your healing. I hope one day they'll be less invasive ways of treating CIN. I heard of one clinical trial involving HIV antivirals.
If I didn't want to have another baby soon I probably would have watched and waited for a bit..
I decided to have the Leep done quickly as I didn't want to take the risk of the cells progressing and then later down the line needing a Leep and then having to wait to recover before trying to conceive. Also if I had waited I was scared that the Leep would be more more extensive as more cells may have needed to be removed.. It's a difficult decision..
Just to put this in to perspective. They dont offer a lettz uneccessarily. They offer it as a treatment, but don't forget it is also a biopsy.
I think it depends what kind of person you are. I'd always rather know as much as I can about what i'm dealing with. If you have a lletz with clear margins and it only shows cin2 then thats great. But without wanting to alarm anyone, a lletz can show things that your smear and punch biopsy may miss.
So glad I found this thread. I am also 29 and have been advised I need LLETZ under local for CIN 1 and 2 but I have asked if I can have active monitoring as I've heard about the regression figures. I have so many concers about treatment, but mostly as a sexual assault victim I have found the smears and colposcopies so traumatic that I don't know if I can emotionally get in the stirrups again! I would love to know more about how I can make lifestyle changes to help my body to get rid of this naturally!
Hm89, so sorry to hear of your traumatic experiences. One of the things I would really like to see changed is recognition of just how traumatic these procedures are. It says something about our cultural attitudes to women's health that we are expected to have a sexual organ poked and prodded, and pieces of it removed, as if it's no big deal, and won't effect us.
I've spoken to women who have had full on PTSD from the LLETZ procedure, but doctors won't acnowledge how invasive it is. I bet it would be different if it were men having pieces of their penis removed. But I reckon if that happened they would have developed a less invasive treatment.
I wish you all the best in your lifestyle changes, and hope that you manage to recover well.
I've been watchin and waiting for about 10 years with abnormal Paps w/HPV. Sometimes it would clear. Sometimes it would be back. It is possible I have gien my bf HPV which is why it hasn't gone away. In 2017, it went from cin 1 to cin 2. I'm in the states so my health care is crap, so even thought they wanted the LLETZ (we call it LOOP), my insurance changed and I didn't have a doctor I could trust. I finally got a new doctor and still had an abnormal pap. Had the col. last Monday. Today I found out it is still at cin 2 two years later, and need to schedule the procedure. I honestly am terrified. I have friends who say yes it is uncomfortable, but they are extremely happy with the end results.
Meraud, in regard to biopsies for prostrate cancer, I don't think that they are done on quite the mass scale as biopsies and LLETZ are with women, or with the same lack of regard for the side effects.
Also with men, they tend to do more research, and be a bit more aware of the effects of procedures on sexual function. Men are given more of an informed choice about things.
Plus, there are state of the art procedures being developed to allow men to have treatment for prostrate cancer, while preserving sexual function wherever possible.
Contrast that with most doctors not even realising that the cervix plays a role in pleasure during orgasm, and not even able to agree amongst themselves as to whether the cervix has nerves or not!
Of course medicine for both men and women, is invasive, painful, and can lead to lifelong side effects, but being men in a sexist society they do get a slightly better deal!!
I had my second colposcopy today to see if you cin 2 regressed. I decided to watch and wait. I will find out next week. She said its hard to tell until biopsys come in. I am praying it regressed to cin 1. I will let you know. I am 25 years old with Cin 1 and Cin 2.
