Abnormal Pap Smear...

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TwinkleToes

TwinkleToes

Joined
May 21, 2011
Messages
158
Hi Everyone.

I guess I just need to vent/ask for support from everyone.

I went to my OB/GYN last month for my yearly, and my Pap Smear results came back abnormal. She told me that I have HPV, and I started to cry. Fast forward to today, i'm scheduled for a colposcopy on Tuesday, and i'm terrified. The nurse who told me I have HPV told me not to worry, that everything will be okay. However, when I read many stories online, they say that the HPV that does not cause genital warts are the worst, because there's a higher risk for cervical cancer.

I'm angry, frustrated, upset, confused, and ashamed. I have also been reading about treatments, and people who have Crohn's and HPV. I'm lucky to where I am not on medications for my Crohn's; however, I just don't know what the future has in store for me. Not to mention, I recently started a new relationship - and I don't know what to do. I recently told him about my Crohn's, and if this whole HPV thing is bad, I don't know what to do or how to proceed.

Earlier this year when I was diagnosed with Crohn's, I was actually relieved because the doctor thought I had HPV. When he told me that I have Crohn's, I felt like I had been given a 2nd chance. The thought of HPV scared me. Now that I have it, I don't know how to proceed.

I'm just remembering what the nurse said, and she told me not to worry. My Sister also goes to the same OB/GYN and said that if something was wrong, she would have called me in right away and things would be happening differently. I just want to know everything is okay. If anyone knows of someone dealing with the same situation or they themselves are going through the same thing, I could definitely use some support.

Thanks.
 
I had an abnormal pap 10 years ago and was told that I have High Risk HPV. You don't get warts from it just a have a higher risk of cervical cancer like you said. I have a pap done every year (have been since I was 15 and I'm 29 now) so I can get my birth control pills. Ever since that abnormal pap, all my other ones have been normal and one doctor told me that High Risk HPV can go away on its own. Men are not at risk for High Risk HPV but can become carriers and pass it onto other women. Like I said I haven't had any issues about it or heard anything about it since that abnormal pap 10 years ago. I was not put on any sort of treatment for it either cause it wasn't needed and honestly I don't think there is a way to treat it in the first place. It didn't affect my Crohn's and my Crohn's and Crohn's meds didn't affect it either. I was upset and scared at first too but haven't even thought about it till now cause its a non issue. Hope the same happens for you.
 
Crabby, Thank you! This is exactly what I needed to hear. I am worried that I have high-risk HPV, and wasn't sure what that entailed. I have the colposcopy today, so we will see what happens. Thank you again - this gave me much peace of mind.

Crabby said:
I had an abnormal pap 10 years ago and was told that I have High Risk HPV. You don't get warts from it just a have a higher risk of cervical cancer like you said. I have a pap done every year (have been since I was 15 and I'm 29 now) so I can get my birth control pills. Ever since that abnormal pap, all my other ones have been normal and one doctor told me that High Risk HPV can go away on its own. Men are not at risk for High Risk HPV but can become carriers and pass it onto other women. Like I said I haven't had any issues about it or heard anything about it since that abnormal pap 10 years ago. I was not put on any sort of treatment for it either cause it wasn't needed and honestly I don't think there is a way to treat it in the first place. It didn't affect my Crohn's and my Crohn's and Crohn's meds didn't affect it either. I was upset and scared at first too but haven't even thought about it till now cause its a non issue. Hope the same happens for you.
Click to expand...
 
HPV is very common and most people (both men and women) that are sexually active will develop at least one strain during their lifetime. The thing is most of the time the immune system will clear the virus within a few months.

I had an abnormal pap smear 25 years ago and it was HPV, I had the smear repeated after a couple of months and the virus was gone. I have had no issues since. I could well imagine that with your Crohns they are erring to caution and proceeding to the next step whereas without an autouimmune disorder they would probably do the standard and wait a couple of months and just repeat the smear.

Good luck hun, I hope more than anything your results are normal...:hug:...and you are like Crabby and myself, a one off abnormality with a pap smear that never went anywhere!

Thinking of you, :heart:
Dusty. xxxxxxxx
 
My sister found out she had HPV from an abnormal pap. She ended up having cervical cancer. It was only stage one though. They lasered off half of her cervix and that's it! Hasn't come back since, and she's fine. I bawled when I found out, but she is doing great now, even some 8 yrs later. I'm so thankful that it was found early.

Hate to say it, but you should tell him about the HPV thing too. He could contract it, and pass it along to others.

Best wishes, and keep us posted :heart:
 
Thank you everyone for your support. I do not want to think I'm in the clear just yet; however, I do have faith that I can fight whatever this is. Like I said, it is my first abnormal pap, so we will see. It is nice to have support though, because this is new to me.

Jessica - When your Sister was diagnosed, did she have a pap every year prior to that? I am glad to hear that she is okay.
 
Mostly. She is known to miss a year here and there. But she was on Depo shots for a while, so she had to go to get them.
 
Ok. :) I'm on BCP's so I get my pap's annually. Like I said, this is my first, so we will see.

The appointment is in five hours. I will let everyone know how it goes.
 
Hey everyone, thank you again for your support and comments.

I had my procedure, and my Gyno explained everything to me. I felt pretty good this morning after reading the posts from everyone; however, this afternoon was rough and I started feeling nauseated.

Let me just start by saying that I have the best Doctor. She takes the time to talk with me and explained everything from the different levels of HPV to the different procedures if it comes back positive for a certain level. She told me that she was very surprised that mine came back at Level 2, since it was my first abnormal. I'm not sure why it came back so high either, so maybe something caused it to spike before my pap? Who knows.

Anyway, the procedure was over in about 10-15 minutes. They told me they will have the results back this Friday or coming up Monday. Either way, I know i'm in good hands and I am confident now that I can beat this thing.

Thank you again, everyone, for your support and kind words. :)
 
So just to be sure, you had the abnormal pap and then they did another test that's like a pap but they cut off a small bit of the cervix to see why its abnormal. The second test hurt like a mother and that's when they said it was high risk hpv. Only reason why I mention this is because you can easily have an abnormal pap and have nothing wrong. For instance having sex the day before your pap is a no no cause it could cause the test to be abnormal (happened to me all the time but they just retested and all was clear. They also told me to quit doing that :p).
 
Hey Crabby - Yep, they took some skin for the biopsy. She told me that they have Paps come back abnormal all the time. I knew not to have sex within 24 hours of the pap or the colposcopy - so we'll see what happens. :)
 
I used to work in an OB/Gyn office so I got to know the NP and Docs very well. When I had an abnormal pap they did a colpo and it came back as just benign "inflammation" which she said could be from my active crohns disease (having a flare-up).

One thing everyone needs to be aware of, and they are only now making docs aware of it is that men (and women) are starting to have HPV cancer lesions on their throats. So men can get cancer from HPV if the skin on their throats gets exposed to the virus, they are not immune. If you have HPV do let your partner know the risk and to be screened for throat lesions when they do their dental check-ups. It is still pretty rare but more common with the high-risk HPV strains.
 
TwinkleToes - What happened as a result of the biopsy?? Hope things turned out well for you.

I resurrected this thread because I just got word back from my gyno today that my 2nd pap smear came back abnormal again. Both times my results came back for atypical squamous cells which could be nothing, but now they want me to have a colposcopy done, which I am not thrilled about. I also showed to have a minor yeast infection, which I have to get cream for to clear anything up before my colposcopy.

I'm really hoping it's jst "benign inflammation" like sararay mentioned. I got a copy of the pap smear results the first time it came back atypical and it looks like they tested me for all the high risk strains of HPV and they all came back negative. So, I'm hoping that means this will turn out to be nothing.

Though I have to admit, despite all the pain and agony I've experienced with Crohn's, the thought of a potential biopsy in my lady parts creeps the heck out of me!
 
Hey Dream - Well, after my biopsy I was told that I had to go in for a LEEP procedure. They went in and the procedure itself only took about 10 minutes. It was a little uncomfortable, but I thankfully have a great doctor. When they got back to me with the results, they said that the one section was just inflamed, but the other section was abnormal. So, assuming they took off the "abnormal" section, I should be good to go.

I have my follow up pap in May, and i'm definitely nervous. If it comes back okay, then I do another one in another 6 months, and do them until it comes back clear for 2 years. I'm not going to lie, it hangs like a weight over my head sometimes, but I deal with it. I know the body's immune system should help clear it up, but I worry about mine sometimes.

I've been taking really good care of myself - taking vitamins A, D3, B12, B Complex and E. I find that they have helped my immune system, and that with my flu shot have kept me ridiculously healthy during this nasty cold/flu season.

Just to let you know, my strain of HPV is high risk so I don't have warts, but I do have a higher risk of cervical cancer. Thankfully, I've never missed a Pap in my life - and this whole rodeo was my first experience with an abnormal one. I think back though to my Gyno before the one I go to now, and they were kind of careless...makes me wonder if I had an abnormal pap before and they didn't tell me? Who knows. Either way, i'm doing the best I can now.

I'll keep you in my thoughts and prayers, and I wish you the best with your biopsy. Please let me know how it goes.

dreamintwilight said:
TwinkleToes - What happened as a result of the biopsy?? Hope things turned out well for you.

I resurrected this thread because I just got word back from my gyno today that my 2nd pap smear came back abnormal again. Both times my results came back for atypical squamous cells which could be nothing, but now they want me to have a colposcopy done, which I am not thrilled about. I also showed to have a minor yeast infection, which I have to get cream for to clear anything up before my colposcopy.

I'm really hoping it's jst "benign inflammation" like sararay mentioned. I got a copy of the pap smear results the first time it came back atypical and it looks like they tested me for all the high risk strains of HPV and they all came back negative. So, I'm hoping that means this will turn out to be nothing.

Though I have to admit, despite all the pain and agony I've experienced with Crohn's, the thought of a potential biopsy in my lady parts creeps the heck out of me!
Click to expand...
 
Hi Everyone,
Boy am I glad this thread was resurrected!
I just got a letter through today saying that I had an abnormal smear test and have moderate dyskaryosis.
As you will all have experienced my heart sank and I felt so sick. I'm so sick of being ill and don't want any thing else to do with it!
Have just been doing a little bit of research and apparently women with IBD can be more susceptible to getting abnormal genes. Partly I think to be drugs we have to take.
Here's a link to an article I found: http://onlinelibrary.wiley.com/stor...-14+GMT+(06-10+EDT)+for+essential+maintenance
I've got my colposcopy in a few weeks and I am so nervous but the comments above have at least put my mind at rest a little...
Thanks again
Sam
 
TwinkleToes - Glad to hear the actual colposcopy wasn't too bad. How long did it take? Was it painful? I am trying not to read too many horror stories online that might freak me out. I'm just confused as to what my "abnormal" results mean. They specified it was both times from "atypical squamous cells," which from what I've read can sometimes not be explained by anything of much significance, but of course 2 "abnormal" paps in a row will make me nervous. I haven't experienced any genital warts or anything strange other than the test results. So, I'm not even sure if I have any type of HPV. None of my results indicated that. It's all so confusing.

Sam - Sorry to hear you are going through something similar. I, too, had read similar stories about women with Crohn's being more susceptible to abnormal paps, especially if they are on any immune-supressing drugs. I am on both Imuran and Humira and I hadn't had an abnormal pap until my Imuran dose was bumped up last year. I can't help but think that may be the cause of all of this. I asked my gastro if he noticed any of his female patients mentioning abnormal paps and he said he hadn't heard anything, but I suspect a lot of women probably don't link it to their Crohn's and maybe don't mention it.

My colposcopy is in a few weeks too - April 11th. I think what's driving me crazy is that both paps I've had now that have come back atypical/abnormal haven't had any specific reasons for the abnormality. Maybe that's a good thing? I don't know. But the lack of knowing is driving me crazy.

I found this article explaining atypical squamous cells and more details about colposcopies:

http://www.uptodate.com/contents/pa...ntraepithelial-lesions-lsil-beyond-the-basics
 
Avoided the worst outcome

Hello! First, a large percentage of women get HPV and are able to fight it off without repercussions. I was immunosuppressed on Crohn's meds however. I had two Leep procedures and two cold-knife cone biopsies. I was then told that I still had adenocarcinoma in situ (pre cancer) of the cervix and that I needed a hysterectomy. I was 27.
Always get a SECOND opinion! I had two doctors tell me I needed a hysterectomy. Then I went to Dr. Rutherford at Yale. He is a Gyn/Onc doctor. Amazing. All of my tests have come back negative so far after my surgery with him. No hysterectomy.
I wish you the best of luck! If you have any questions, please ask. Keep your head up, girl!
 
Dreamintwilight - thanks for your post and link. Lots of info.
I got another letter through on Saturday saying that my colposcopy is this Wednesday. That's a quick turnaround! I'm pleased it's happening so quickly but I'm also worried by the fact that the appointment is so quick. Of course that's just my negative mind working and thinking "it must be bad if they're seeing me so quickly!"
I apparently have cin2 which is moderate.
I'll be able to let you know how it goes on Wednesday and prepare you for it!

Head_above_water - thanks for the info. I'm so glad that you are doing well now. What a story! What were the procedures like? I'm really wanting to know how painful it all is!! Hate the thought of them prodding and poking down there!
 
Hi Bushy -
My turnaround was within a week as well. I highly doubt they think it's horrible, and just want to get you in quickly to get it looked at. If it were bad, I'm sure they would tell you.

On another note, I'm so thankful this thread was resurrected, because it's nice to have the support and know you're not the only one. It's never easy being told you have an STD, especially one that can cause Cancer. But, I believe with the support of everyone on here and being able to talk about your story makes it a little less traumatic.
 
Hello Bushydougie,
The procedures were not that bad. If you can deal with the pain of IBD...I'm sure you can deal with almost anything. They put me under for the Cone biopsies. They put a substance on your cervix afterward that you will shed (for lack of a better term) for days...it looks like coffee grounds (I know, very hot). The most painful thing that they did by far was taking a uterine sample. That was the worst! Otherwise, I was just relieved to not have to have a hysterectomy. I really wish you the best.
 
head_above_water - That's crazy! So glad you got another opinion and didn't have to get a hysterectomy!! I am 27 too and haven't had any children yet. I can't imagine being told that. Thanks for the advice (hopefully it won't come to that).

Bushy - I agree with others about getting you in quickly just to get things taken care of. I don't think that it necessarily means anything is bad because they would probably need ti inform you if it was that serious. Definitely keep me informed!! I will be thinking about you tomorrow - wishing you best of luck!

TwinkleToes - It is great to have this forum! I took a break from the forum since my Crohn's has been under control, but I know I can always find the support I need here! It's really nice to have people who understand what you're going through along with having Crohn's!
 
Well, today is the day for me. I go in for my colposcopy at 3pm (Central time). I am very nervous. I'm not sure how I will be able to concentrate at work until I have to leave. Had a bit of a freak out last night and had a good cry. Hope everything turns out alright! Please send prayers, positive thoughts, etc. my way! I could sure use the extra support to calm my nerves!
 
Hey Dreamintwighlight!

Sorry for my delayed response.
I had my coposcopy 3 weeks ago now. The examination was fine (never pleasant having your legs spread like that though). The doctor confirmed that I had cin2 and asked if I wanted to have the procedure to have it removed there and then (Lletz) or at a later date. I decided it was best to get it over and done with!
The nurse was fantastic and kept talking to me through all the procedure. She explained that it took longer to set up than to actually have the bad cells removed. They had to put a pad on my leg which earthed me as they use an electical current! The doc gave me an anesthetic in my cervix and then performed the Lletz. It was quite uncomfortable and seemed to rise up my stomach but it was not really painful.
I had to lie down for a while afterwards and when I got up had to put on a sanitary towel (not my fav). The nurse said there might be a pool of blood but there was only a small smear when I wiped myself clean.
Afterwards I felt pretty wiped out and quite emotional and spent the rest of the day relaxing.
I went back to work the next day but felt absolutely awful.
I took the next day (Friday) off work and decided to get my toothache that I'd had since Monday checked out (I'd tried to put it off with having to have the coposcopy it paled into insignficance, more fool me!) I then found out I had an abcess on my gum and was given antibiotics. So I don't know if it was this, the Lletz or the combo that made me feel so ill. Come Sunday night I was woken by a fever so I saw my GP on Monday. He was unsure if I had an internal infection but gave me another course of antibiotics just to make sure. Phew! I felt unwell and exhausted until I returned to work on the Thursday.
3 weeks on I am still having to wear pads. At first I leaked quite a bit of colourless liquid which made me feel like I was weeing myself (nice). Then I started to bleed about a week later (could have been my period I'm unsure). The stomach cramps were really bad especially as my periods are normally light. Now I just get a tiny bit of discharge
Now I'm just waiting for the results of the biopsy. They think they got rid of it all but they have to check. Results take 6 weeks...
Gosh that was a lot of info. I hope that helps you even though my case was a little different to normal ;)
Good luck today. I am sure it will go fine and they will help to sort you out
x
 
Well, poo! I am home now. I left work about 45 minutes ago to head to my appointment and got a call from the doctor's office. My doc got called into emergency surgery (she's a high-risk OB) and they had to reschedule my appointment.

They offered to get me in for the same time at a different location with a different doctor, but I declined as the doc they suggested was the first doc I saw at this new practice and I did NOT like her at all. I wasn't about to trust her with this type of procedure.

So, I have to wait another week to see my doc next week, same time on Wednesday the 18th. More waiting! Hopefully nothing goes wrong because my husband and I are scheduled to fly to New York Thursday the 19th!

Bushy - Thanks for sharing your story! Glad to hear both procedures weren't too bad. I'm sure my imagination is getting myself all worked up for nothing. Trying to be optimistic about the results, but also trying to stay prepared for getting not so great news so I don't feel duped! 6 weeks for results?? Crazy. I guess you're halfway through the waiting period since it's been 3 weeks already since you had it done. Keep us updated!

This may be a silly question, but what it cin2? So far I have not been given any reasons for my atypical results, so I am not familiar with what that term means.
 
Hey Dreamin
How awful for you. To build yourself up and then have to wait another week. Don't blame you for avoiding the other doctor though!

Cin2 is the level of precancerous cells. It means there's a moderate amount of them (I think it equates to 2/3 of the cervix having them). It starts with cin1 and goes up to 3. Wih all of the levels though they are precancerous cells and they take many years to turn into cervical cancer. Apparently if you have cin1 you can just leave them as they often return to normal but anything above that and you need to get them removed as they will not go away by themselves. Hence me having the Lletz procedure.
Btw I learnt most of this through the wonders of the internet and Wikipedia!!

To hopefully put your mind at rest some more the whole procedure from the colonoscopy (now theres a Crohns related Freudian slip! Of course I meant colposcopy!) to the Lletz lasted in total half an hour. If they do find something like they did with me you may well get the opportunity to have the treatment at a different time and could have it after you've been away? Just a thought.
Please don't worry about it too much (easier said than done). At least they are examining you in full and they will be able to treat you if any problem cells are found.
Please take care of yourself until next Wednesday.
x
 
Thanks, Bushy! I Googled CIN grading on the way to dinner. Some of it put my mind at ease a bit. It's nice to know at least that if I have to get any precancerous cells removed (if they find any) it's not too bad of a procedure to go through.
 
Take 2 on my colposcopy tomorrow! Hopefully this time it doesn't get canceled. Hopefully everything goes as planned because Thursday morning we're flying to New York for a short va-cay!
 
Best of luck today Dreamin. I am sure you will be fine. I won't lie and say that I will be great but it should be over with quickly and your mind will then be at rest and you can enjoy your holiday! :)
Take care
x
 
Thanks Bushy!

The exam went well. I wouldn't describe it as painful at all. Just uncomfortable and lots of pressure. They took a small biopsy though she said everything looked basically normally. There was a small portion of my cervix that looked inflamed so that was where she took the biopsy. Both pap smear results that showed up abnormal for atypical squamous cells were run for high risk HPV and both came back negative. So, she is pretty confident that I do not have any strains of high risk HPV. She also said it is very rare for biopsies to come back as precancerous when HPV results come back negative, but of course she can't 100% guarantee that since there's always a chance.

She really did not seem to be concerned at all. She said I could just have cervicitis, which is inflammation of the cervix. So, we shall see. I think I can rest easy for now until the results come back. She said I should get results in about a week. So, now I can enjoy our little vacation to New York!
 
That's great news! So pleased to hear that it went ok. Hopefully your results will come back negative and you can put it all behind you.
Hope you have a great trip!
 
Well, I just got the results back from my biopsy. The biopsy came back normal, but I also tested positive for HPV???

I am so confused. I had 2 pap smears that were tested for high-risk HOW and both came back negative and now it comes back positive?

All the PA said I needed was a follow-up in 6 months, so I assume it can't be that concerning. I guess I am relieved my biopsy is normal, but wondering how both pap smears could be negative for HPV and than all of a sudden it's positive. And she didn't mention if it was a high risk strain or not.

I am going to call tomorrow to see if I can get a copy of the results, but I have had trouble getting copies without having to submit authorization for them to release it to me...not sure why! So, we'll see. Just kind of confused.
 
Hey everyone, just wanted to give a short update. My last Pap smear came back abnormal again. I was very disappointed. I had another colposcopy done, and thankfully it came back negative so I don't have to see my OB/GYN for another year. It's a relief. I obviously still have the HPV, and while this may not be my last battle with it, I am staying positive about the whole thing.
 
That's great that it was all clear TwinkleToes! Like I said before, mine was abnormal 10 or so years ago and has been normal every time since. Plus I was told that it can go away on its own so hopefully its gone for me and you too and everyone else.
 
Crabby - Yeah, I'm hoping this is the end. I just worry with my crohn's and having a lowered immune system, but I'm now hopeful for the future!
 
I realize I never popped in for an update on whether I had HPV or not based on my last post.

Turns out the PA that gave me the results of my colposcopy and told me I was positive for HPV misspoke. When I saw my gyno at the 6 month follow-up after my colpo, so rolled her eyes when I told her the PA said I tested positive for HPV. She said the PA probably just saw I got an abnormal result and assumed it was because I had HPV, even though they tested me for it and it was negative. She said she would specifically write a note in my file that if I got another ASCUS result, the follow-up would just be a yearly pap, as long as it didn't progress further than ASCUS.

My results did still come back as ASCUS in 2013 and then my husband and I moved to another state, so I get to start the whole process over with a new doctor now. Yuck. Just had my annual done a few weeks ago and got another ASCUS result. I am hoping (because I brought my previous records and spoke about it with my new doc) that despite having a history of ASCUS results, since I have never tested positive for HPV and had a negative biopsy from my colpo, I'll only be required to have paps done every 6-12 month paps to monitor. I'd rather not have to get colpos done every time!
 

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