It keeps coming back - anyone else having this problem? - please help

Hi

I just want to see if anyone else is having similar problems. I first needed a LLETZ when I was 21 - I'm now 31. Clearly for some reason my body is not clearing the HPV and therefore the abnormalities just keep coming back. I have had countless biopsies, 2 LLETZ and have never managed to go for more than a year without abnomalities cropping up. I had a LLETZ a year ago and once again it is back, I am booked in for a LLETZ, vagnial biopsies and a laparoscopy next month. I have asked for a Hysterectomy firstly because I am fed up of having this recurrent problem but also because my cervix doesn't heal too well. Following a smear 6 weeks ago I was in pain, bloated, and bleeding for 2 weeks. Since my last op I have only had the odd day when I am not in pain, sometimes the aching other times the stabbing pain. I feel like this condition has robbed me of part of my life, it damages my relationships too and I just want it over! My consultant told me that even if I had a hysterectomy the abnormalities could return anyway so now I feel like my 'final solution' has been taken away as well. Because my cervix no longer protrudes smears and biopsies are very difficult and my consultant believes they should be done under GA in the future.....

Has anyone had a similar experience?

Is anyone aware of any immunology referrals re: the immune system not kicking the virus?

Has anyone experienced abnormalities post hysterectomy?

 

Thanks

Hi Tilly,

 

What a journey of colposcopies, biopsies etc you've had. I'm not entirely in the same boat, but I've had a return of some CIN (and possibly VAIN) after 6 years of clear smears. I have a background in science and borderline OCD so have done a fair bit of reading on HPV!

One thing that would be good to know is the type of HPV you have and have had. Are you becoming infected with new strains or is it the same type that you've had since you were 21? I paid privately to find out what strain of HPV I had with my previously lletz (HPV 66) and have just paid to have it done again... if its the same type it probably means I never kicked the infection's butt in the first place, if its new it means I got it from my husband and is new. I met my husband shortly after my lletz.

Have you had the gardisil/cervarix shot? It won't clear up current lesions but can help prevent reinfection of some types of HPV. I was vaccinated just before my husband and found out he has a history of genital warts... as I was vaccinated with the Gardisil shot I never caught them, but if he had another type of hpv not in the vaccine I could have caught that.

 

I'm sorry, I can't be of more help. I have read that they are developing theraputic HPV vaccines which will be able to treat current infections. Just wish they would hurry up!

 

xxx

 

Hi Tilly,

I'm so sorry to hear of all you've been through. My situation isn't totally the same but I can totally relate to what you say about it robbing your life. I've had abnormal results since 2009 and no normal smear even after LLETZ. I'm HPV negative according to my last biospies so they don't seem bothered, whereas I'm thinking, "Hold on, abnormalities were showing 6 months after LLETZ when the margins were clear so surely that isn't good". I haven't been able to think of starting another relationship because I'm wondering what will happen if I get infected by a guy with HPV, particualry high risk HPV, as know condoms don't protect totally.

I don't know why some people can clear HPV and others can't. I've tried boosting my immunity with vitamins etc to try to help my body with the abnormalities. I do eat healthily anyway. I'm slim, don't smoke etc. If you smoke, that could be one way of helping your immune system, although it seems a lot of ladies with abnormalites don't smoke. 

I understand that after a hysterectomy ladies have what they call a vaginal vault smear because changes can show up there (so VAIN instead of CIN). I don't know much more than that though unfortuantely, and guess that for a lot of women this will help get rid of the abnormalities.

I wish you well for your appointment, let us know how you get on.

Take care x