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cherryade 12-12-2011 07:48 AM

cin, ain, vin and vain...

I wanted to see if I could get in touch with women who are as unfortunate as me to have been diagnosed with practically every h-darn-pv strain there is out there!

Ive been told that I will need to be monitored closely throughout my lifetime which is great someone is finally taking my concerns seriously; but rubbish in that before I was diagnosed I had no symptoms at all and was planning to start a family with my long term bf.... :(

I am only 33, this is all a bit of a shock andthe only way im getting through is planning for the worst.... Some success stories would really help and some co-hpv fighting buddies to share this journey with would also be good...please get in touch. :)

circus*of*life 04-18-2012 06:24 AM

Re: cin, ain, vin and vain...
Hi, I see you posted a while back, and I wish I'd been onto this site sooner! Have you had luck with your treatment? I'm in a very similar boat. At 29, I had CIN III with conization. I was borderline cervical cancer, the pathology of tissue was worse than expected. 5 years later, a hemorrhoid removal led to the discovery of AIN III. I've now had 3 procedures, and at 40, am now facing more. AIN has a poor response to treatment. I've been married 20 years, and was, despite losing a good deal of cervix at 29, able to have a baby without difficulty 2 years ago. I feel like i live in fear of which 'IN' they'll find on me next, and share your pain. I hope you're doing well. Don't give up hope for a child.

cherryade 04-29-2012 02:22 AM

Re: cin, ain, vin and vain...

Thanks for your post. We do seem to have similar histories, which is bad because I would not wish these hpv problems on my anyone, but good in that We are not alone.

Unfortunately, I've not started my treatment for AIN. My colorectal surgeon has opted for a wait and see approach as my partner and I were trying for a baby. Since my post I am now pregnant which scares me, as I've researched that pregnancy is an environment where hpv loves to thrive due to the body's lowered immune system to allow baby to grow. Added problem for me is that my pregnancy is a complicated one which may involve me taking steroid. A double whammy for hpv, they love steroids! So I am scared but I am trying not to stress over it as there is nothing I can do. Even if worst care the AIN turned into anal cancer, I couldn't do anything about it until my baby arrives.

Prior to becoming pregnant my colorectal surgeon recommended immiquiod (I think thats how you spell it) it is the drug used for genital warts but has proved some use is AIN warts rescinding (I read somewhere it had a moderate success rate) have you tried this? I have researched into possible treatment, I would prefer to have the abnormal cells lazered out completely, but I now the down side to that is stenosis which I am already suffering from due to hemorrectomies and also you don't have any tissue for pathology. So I think it's more difficult to see if they have got rid of all the abnormal cells. Plus my colorectal surgeon didnt entertain such talk as i think he prefers the gradual approach to treatment whereas i am very much for i dont care how much it hurts i just want it gone.... What have you tried so far?

Please get back in touch...

circus*of*life 04-29-2012 06:14 AM

Re: cin, ain, vin and vain...
Congratulations to you!!! When is your baby due? Boy or girl? I'm sorry to hear you're going through all the hpv issues and steroid possibilities, though. Hope you're doing ok!
I just went through a bad day Friday with our buddy AIN. I'm really concerned now. I live in Massachusetts and am lucky there's an onco doc here who does research in this field and has high resolution equipment, but my colorectal doc was supposed to make the referral 1 1/2 years ago, didn't, then I got busy with the baby (and maybe some denial), before noticing some skin tag changes and went back for eval). He sent me to this new doc, who did the staining procedure (had this done with laser 5 years ago also). I lit up like a Christmas tree, new lesions everywhere. She took multiple biopsies, then found an ulceration higher up as well, that the colo doc will have to evaluate. She's ordered imiquomod and I'm supposed to start today. Ive heard it hurts and burns horribly, but I'm willing to do what I can to get this dealt with. If it's even possible. I admit I'm scared to death waiting for the biopsy results. She kept assuring me it isn't cancer...yet. I just can't fight this off, and am sorry you're going through it as well. It's nice to know we're not alone, but as you said, I wouldn't wish this on anyone. I'm hating this waiting right now, and mad at myself I didn't get in sooner.

cherryade 04-29-2012 08:17 AM

Re: cin, ain, vin and vain...
Thanks for you well wishes. Its too early to know what sex yet... and because my life obviously isnt exciting and stressful enough with hpv and worrying about developing cervical or anal cancer etc, my pregnancy is categorised as rare and high risk, so I'm warned that The further along I get in my pregnancy the more likely I'm going to miscarry... Just my luck.... Still dont get me wrong, my bf an I have been waiting for this for years so i'll take everyday of worrying if it means we can have Family! :) I'm trying not to fret and enjoy the pregnancy...

AIN is a nightmare isn't. I completely understand. Don't be hard on yourself about delaying going to see your consultant... It's very hard to sometimes and I am often in denial myself. I have already declined further screening while I am pregnant even though I have a gut feeling that my symptoms are getting worse...

I've had biopsies and an anal mapping, is that what you mean when you say 'staining' procedure to find the lesions? You mentioned lazers in your post was this to try and treat the ain first time around? Let me know how you get on withthe immiquiod, ive researched theside effects I.e the burning. But try to keep positive,the burning is possibly destroying the abnormal cells which could harm you... My colo surgeon has said he has had relative success with his patients when using this... If it gets too bad I think they schedule a short break to recover half way through the treatment. But hey we've had hemorrectomies which they say is worse than childbirth (would you agree with that statements now you have a child?' :) so I'm sure you will handle the treatment just fine.

Some days I am scared too and it's really hard to explain to people what's wrong. I am glad you contacted me I really am. Please stay in touch.

cherryade 05-15-2012 02:41 AM

Re: cin, ain, vin and vain...
Hi circus of life.... Wondered how you are and how the immiquiod treatment was going?

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