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2 lletz, no clear margins, persistent HPV and no children

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AEV
2 lletz, no clear margins, persistent HPV and no children

Hi everyone.

Not sure where the right place to post this is so I’ve actually posted it two places as it is for several different things.

As you can see by reading at the bottom about my journey I’ve been through a lot of with messing with my cervix for what is almost a year in January. I have a lot of concerns and have a really hard time dealing with the effects and reality of all this and I constantly feel stressed and anxious.

I just got the results from my second surgery, stating no clear borders and confirming cin 3. I have high risk hpv so this worries me a lot. I talked to a doctor from the hospital which told me that, they might not be able to do another lletz but in some cases they were able to do a “special” one just reaching the area where it needs. She said that if I had finished my family by now they would have advised a hysterectomy. This freaks me out!!! My biggest dream is to have a family, and my boyfriend and I are more then ready to start but have not had the green light from the hospital just yet.
The doctor also said that when I get the green light it would be advisable to finish my family as fast as possible.

All of this makes me think that the hospital also thinks of the worst. I’m worried because I am so young and this has been such a stressful experience. I know some of you deal with a lot worse than this and you have my deepest respect. I don’t know if I am able to handle anything worse by now with the constant worrying.

Beside this I have been offered to get a scan to possible have an abdominal cerclage. Have any of you had any experience with this?

And have any been in the position where you where might not able to receive another lletz? I’m so worried that this suddenly will develop into cancer because I’ve had it for so long and it is still there and so “wide spread”.

I appreciate any advice and any experiences shared.

25 years old
  • 08/01-2019 1st smear - HSIL
  • 08/04-2019 Colposcopy and punch biopsy - CIN3
  • 21/05-2019 Lletz cone biopsy - no clear margins, confirm cin3
  • 22/07-2019 smear because of bleeding + HPV test - High risk HPV other than 16 and 18 and HSIL
  • 03/09-2019 Colposcopy and punch biopsy - cin3
  • 24/10-2019 lletz cone biopsy - cin3 again, no clear margins
Waiting for smear and new HPV test at 14/01-2020 and measuring of my cervix for maybe putting in an abdominal cerclage. I have no children yet.
Scout

Hey love,

Firstly, I'm sorry you're having a hard time of it. I know first hand how much anxiety and fear surrounds these procedures. 

I know there are people here dealing with bigger issues, but pain is relative and it's totally OK for you to feel scared and panicky about what's going on. 

I don't have exact experience of what you're going through, but there are some similarities. I also had an abnormal result from my first ever smear, had a couple biopsies, a few retest smears, and persistent HPV. They put me back on 3-yearly screening so I guess they're not so concerned as I got a complete excision from my LLETZ. 

The last nurse I saw who did my smear said something which has been the most comforting thing I've heard from any medical personell throughout this whole experience. She told me that everything would be fine as long as I keep attending my screening appointments. I know that sounds silly but, in so much uncertainty, it was so lovely for someone to actually reassure me. 

I get where you're coming from on the child front, too. I'm nearly 30 and have no children but want at least one. People keep telling me I'm still young and there's still time but there's a prominent history of fertility problems in my family, with many of my close female relatives having to have full hysterectomies. However, they all already had kids much younger than me. 

It really freaks me out because, on top of the likelihood that I'll have fertility problems, I'm also thinking about how having LLETZ can sometimes increase the chance of problems carrying pregnancies to term, or even getting pregnant in the first place. 

I really don't know what to suggest to help you through this because I understand how distressing it is, especially if you've dreamed of having kids. I hope that knowing there are lots of people going through similar things is at least a little bit comforting for you. 

I think, if you feel able to, it might be worth talking to someone in a position to help with the stress and worry you're feeling now so that you can continue on through this process. At some point, you'll get some info which will help you decide when it's good to start trying to get pregnant. Only when you have all the information can you really weigh up all your options and decide what's best for you going forward. 

I think what I'm trying to say is that it's helped me to just think of the next step ahead, which is my next smear. Until I know what that shows, and until I actually start trying to get pregnant, I don't know the impact all this may have had on my fertility. It's hard not to worry about it, but I'm trying to tell myself now (after a long time of totally freaking out, justifiably!) that I can just deal with whatever comes up, as it comes up. 

I may not end up in my ideal scenario, family-wise or health-wise, but I will do what I need to do to be able to make the best of it. Even if it feels really crap and unfair for a while! 

 

Sending you so much love! I really hope things start to look up for you soon. 

xx

Feb 16: first smear, HPV positive, no cell abnormalities

May-Aug 16: several GP visits for cc symptoms

Oct 16: hospital referral, colposcopy, punch biopsy

Oct 16: CIN2

Nov 16: LLETZ

Dec 16: Confirmed CIN1/2 and complete excision

May 17: 6 month follow up. 2 smears required due to admin error. 

Nov 17: smear re-test shows no abnormality but persistent HPV. Released back to 3-yearly screening.

Nov 20: who knows!

Heathbell10

Hey AEV,

I'm in a very similar boat as you... I've had 2 LEEP procedures with unclear margins, high risk HPV, presence of carcinoma and CIN 3. I took the past 6 months to heal myself naturally (with supplements, meditation, affirmations, etc.). Needless to say the all natural way did not work (some women's persitent HPV has nothing to do with a weak immune system and is actually due to unpredictable cell mutation that avoid even a healthy immune system,which is something I can give you more details on if you'd like). After failing my most recent PAP in early March I am again being advised by my oncologist to have a hysterectomy. I do have a child but my partner and I were not ready to deal with the prospect of not having any more children. 

The best advice that I can give to you is that HPV- and cervical cancer take YEARS to develop. The first solution for all doctors who see high risk HPV with CIN 3 is always surgery and the more persistent the cells are, the more drastic the surgeries will be. They do this because many women get scared of their diagnosis and stop going to appointments. I was first diagnosed with HPV in 2010 and I ignored the probelm until my pregnancy in 2017 because until then I had no insurance and didn't realize the extent of my diagnosis. It's 2020 now and my next step will be the hysterocetomy but you should talk seriously with your doctor and tell them that you want to have a family. From my experience family planning is always a priority and doctors understand that the surgeries are mostly preventive and can wait at least a year.  

HSIL pap 2017

LEEP 1  August 2018 with HSIL CIN 3 carcinoma with unclear margins

PAP on follow up found HSIL CIN3 

LEEP 2 February 2019

PAP 9/11/2019- HSIL and currently waiting for third LEEP

More Information

Living with the side effects of cervical cancer