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05-23-2016, 07:21 AM   #1
sleepallday
Ladies: Cervical changes

Hi everyone,

I have received an abnormal pap smear result that revealed low grade SIL. Today I went to have a colposcopy done (which included about 3 biopsies which stung like hell - boys, be happy you're boys).
When the specialist looked at my cervix she remarked "there are DEFINITELY epithelial changes here due to a virus, are you on immunosuppressants?!".

This has made me freak out entirely, as I am only in my early 20's and am worried that the worst is possible.

Has anyone had this happen to them? If it turns out that the lesions are positive, will I have to cease the immunosuppressive therapy?

I feel like I can't win and this stupid disease is finding ways to destroy me physically and mentally!
05-23-2016, 06:11 PM   #2
Ships
 
Join Date: May 2016

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A couple months after I got diagnosed in 2012 I had my first abnormal papsmear, I had HPV. Every pap from them until my last one like 6 months ago has been abnormal due to HPV, and they found abnormal cells outside my cervix as well.

I had to have paps every 3-4 months which were always followed by colpos. I don't know if that helps or not? And yes colpos are awful, the cramps after are killer!

I don't know if this helps or not, I'm sorry you are going through this!
06-13-2016, 01:58 AM   #3
4peace
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Join Date: Sep 2010
Location: California

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Yes! This same thing happened to me. I was on Cimzia and Aza for 2 years. Had an abnormal pap but was fine. A year later.... My next pap turned into a colposcopy which came back CIN3! Pre-cancer. I opted for a hysterectomy (I have a kiddo so I was ok with this decision and my mom died at 52 from cervical cancer so I didn't want to take chances).
I took myself off my biologics (they were also killing my gums to the point where I was going to start loosing my teeth )
A year later... My gums have COMPLETELY healed and I feel that FOR ME, discontinuing immunosuppressants was the right choice. Yes, based on fear but..... I'm not suggesting you go off your meds however, start researching. I feel like my body could not fight infection because of those meds. Cervical Cancer is supposed to be a slow growing cancer and within one year I went from abnormal screen but fine, to CIN3. Coincidence? Not sure but I feel good about my decision. My GI is not happy with me and my guts aren't either. Sucks that we have to choose a no win sometimes. I don't want to scare you lol but I do think that researching and asking ALL of your doctors not just your GI for their opinion is important. Best of luck to you
08-16-2016, 03:58 PM   #4
eleanor_rigby
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Join Date: Aug 2012
Location: Cheshire, England, United Kingdom

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Hello, sorry I am responding to this late but I wanted to share my experience.

I have had borderline abnormal cell changes for several years and a positive HPV result. In 2014 I had a colposcopy, which I didn't actually find bad to be honest - not much different to a smear. This came back as HPV+ but changes were small/insignificant so I was discharged for my next smear to be in three years time (April 2017). I started on aza for the first time in April 2016. I went to my GP worried but she said she will not smear me any earlier so I just have to wait until 2017. Please note these results would not mean you need to cease immune suppressive therapy it would just mean you need the cells monitoring/removing at some point. Often they will just laser them off, which is a simple procedure.

I did contact a specialist about this and they said:

"A slightly impaired immune system can lead to persistent infection with the HPV. However the degree of immunosuppression conveyed by steroids and Azathioprine is relatively modest and is not an indication to have more frequent smears. We cannot treat a HPV infection, we can only treat the cell abnormalities it causes."
08-17-2016, 04:30 PM   #5
Missfitz
 
Join Date: Aug 2015
Location: Brooklyn, New York

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Hey same thing kinda happened to me. Been on humira since last October. In April had a pap came back abnormal HPV got a colpo and biopsy came back normal whatever that means. I have to get paps now every three months. Definitely has sometime to do with the humira. Any immunosuppressant I believe would act similarly. fortunately I didn't think the biopsy was too painful but it sure did feel like I was violated lol. Good luck keep us posted and keep going for the paps!
08-31-2016, 09:22 AM   #6
kikig
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Join Date: Mar 2015
Location: Germany

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@sleepallday - gosh I know the feeling, if its not one thing its another.

But we'll fight on!!!

I have a very low immune system, and managed to get HPV13 or HPV16 - whichever sort is the precursor for cervical cancer. Anyway, all my pap smears come back CIN 1 (indicates something abnormal) due to the presence of HPV. Recently the pap and colposcopy came back with CIN IV which indicates cancerous cells. They are continuing to monitor as it is still not a definite diagnosis - my CTs are coming back without remarks in this region.

Anyway, my point is not to panic, just make sure you are under regular 3 mth checks. In this area, your best defence is a good offence! There are lots of treatment options so please don't get panicked
__________________
Diagnosis: Milroy's Disease (malabsorption due to lymphangiectasia), primary immunodeficiency (IGG), primary lymphoedema

Regular Medication: Mixed diuretics, 1000mg Calcium, 10,000i.u VitD, 125 ug L-Thyroxin, IV iron and IV albumin, lowfat high protein diet

DLBCL aka Non Hodgkins Lymphoma - 2003 (RCHOP) and 2016 (RICE plus stem cell transplant)
08-14-2017, 08:19 AM   #7
Missfitz
 
Join Date: Aug 2015
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Hi, I went on Humira in Oct 2015 and had my first abnormal pap shortly there after 4/16 and then a colposcopy that came back fine. But when I went for my pap 4/17 my pap came back normal. I freaked out too but try not to. I am still on the humira and it appears to have cleared up. I have a feeling it may come and go, but as long as you get checked annually everything should be ok.
08-14-2017, 10:12 AM   #8
eleanor_rigby
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Join Date: Aug 2012
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My smear in March 2017 came back normal as well despite being on aza a year. I get my next one after 12 months. I will just go as regular as they allow.
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