ASHA STI Message Board
It is currently Wed Apr 23, 2014 3:19 pm

All times are UTC - 5 hours


 

National Cervical Cancer Coalition


Forum locked This topic is locked, you cannot edit posts or make further replies.  [ 7 posts ] 
Author Message
PostPosted: Tue Mar 10, 2009 2:39 pm 

Joined: Wed Nov 19, 2008 4:23 pm
Posts: 21
I was here last year having had a smear that showed up mild abnormalities. I have just had the result back from my six-month repeat and it's the same, but they are not taking any action... just recommending another six-month repeat. I only got the results an hour ago and still can't stop crying.

I am so worried not just for me but for my boyfriend. We had been intimate (including oral sex) before I found out about the original smear, but now I don't know what I should be doing to protect him or help myself. I went back on the pill just before Christmas because it was much more convenient and my doctor was not concerned about the risk. I even plucked up courage and talked to her about oral sex, but she was very reassuring about the risks of this. The thing is, I have no idea what my HPV status is, since this is not part of the testing in the UK, and I have no real idea the extent of lesioning or otherwise to my cervix. The letters I have had refer to "a mild inflammation". It was only when I queried this originally that I found out it was mild abnormality.

I don't know what to do. The thought that I might be putting the man I love at risk for any kind of cancer just horrifies me, but I don't know how careful I should or can be at this stage. Should I be putting everything on hold - for a year or more - until I get a clear smear or a curative treatment?

Please help... I feel awful right now.


Top
   
 
 Post subject:
PostPosted: Wed Mar 11, 2009 9:35 am 

Joined: Wed Nov 19, 2008 4:23 pm
Posts: 21
Once again I am going mad about this and reading around the internet waaaay too much. I found a source saying that women with mild dysplasia were most active shedders of the virus and this was the most infectious state to be in. I had not read this anywhere else and find it concerning.

The writer also cited a "comprehensive study published on June 22, 2006 in the New England Journal of Medicine has shown that condoms are about 70% effective in preventing the spread of the virus. However, they seem to be near 100% effective in preventing the virus from forming lesions (which are pre-cancerous, and the start of cervical cancer.)" At the moment, I am in a monogamous relationship and not considering any other partners. Given that we had had sex before I knew about the dysplasia, and only used condoms some of the time, I don't know whether there is value in condom use from now on. I don't know if it would be likely to prevent further lesions developing. My doctor was completely unconcerned about my *not* using them, so long as I was using other birth control. Basically, I'm getting more confused.

I hate this. I can't work and my head is going round and round.


Top
   
 
 Post subject:
PostPosted: Fri Mar 13, 2009 5:10 am 

Joined: Wed Nov 19, 2008 4:23 pm
Posts: 21
Still posting here because I'm panicking and I don't know what else to do.

The system for smears and hpv tests seems to be very different in the UK than elsewhere. To begin with, women are generally only called every three years for smears. I was two years late on my last smear because I didn't get called and for lots of reasons, it kept not happening. So although I scold myself for not chasing up on that, the abnormalities I'm seeing now might not have shown up then, and then I wouldn't be scheduled for another smear until later this year. HPV tests are not done at all, except in a few pilot schemes in individual health authorities. If I want an HPV test, it will cost me over £150 to have it done privately.

I'm still going back to the letters I've been sent. They simply refer to "a mild inflammation", which could indicate a bad sample or a genuine inflammatory result. It was only when I queried this before that I found out the clinical report was of mild dysplasia/dyskaryosis. And I have been reading around this board about recommendations for what not to do while cell changes are present, but if I had simply gone by what the letter told me and booked a repeat smear in six months, I would not have known about the abnormal cells and just carried on as normal. I would imagine they do this to avoid worry (which massively backfired in my case)... and given my current mental state, I don't know if it would have been better to remain in blissful ignorance. It's just hard to know what to do when the medical establishment is so unspecific in its communication and recommendations.

The official "Dealing with your Abnormal Smear" leaflet that gets sent out in the UK takes the line that having sex cannot make make your abnormality worse and it cannot be passed on. Which may be true but is a bit disingenuous considering that it is probably the result of a transmissable virus. I don't think official bodies in the UK or US tend to make recommendations about oral sex at all (possibly their recommendations amount to "Ack! Just don't do it. Ever!") which forces people to go looking for informal advice. Which is a bit unsatisfactory.

I'm rambling now. Sorry. This whole thing is making me confused, desperate and emotional. This is the first major health worry I've had other than depression. Have suffered from major clinical depression since I was 17, and things like this feed right into it. That creeping feeling that you could and should have prevented this, that being a healthy, happy, functioning person can never be for you, that you are destined only to hurt yourself and other people and really you should just go home and wait to die. And I know that that is extreme and irrational, but it's definitely a thought that's lurking at the moment.


Top
   
 
 Post subject:
PostPosted: Fri Mar 13, 2009 8:40 am 
Site Admin

Joined: Wed Oct 04, 2006 4:08 pm
Posts: 2122
Location: North Carolina
Hi UK Girl,

Welcome back! It's good to hear from you, although you probably don't feel so good about it, considering the reason you stopped by to post!

I'm sorry this is so difficult, dear girl. I don't think you're unusual in feeling upset and tremendously anxious about this; that sort of reaction seems to be pretty common with anything to do with HPV. You're right, too, in that there's way too much information online, but much of it really doesn't give you firm guidance or direct answers. Heck, I often don't give direct answers!

As for HPV testing: Only your health professional can figure out if that's anything that is helpful for your specific case, of course, but I can tell you that with a Pap test result that indicated mild dysplasia/dyskaryosis, HPV testing generally isn't seen as very helpful. This is because Paps with that reading most often do involve HPV, and in those cases the test usually doesn't give the clinic much helpful info in terms of managing your case.

I even plucked up courage and talked to her about oral sex, but she was very reassuring about the risks of this.

I am very proud of you. That wasn't easy to do. You can probably take her reassurances to heart, as head and neck diseases aren't all that common, and those related to HPV are especially rare.

I don't know what to do. The thought that I might be putting the man I love at risk for any kind of cancer just horrifies me...

Rest easy on this one. No realistic risk to him here.

Keep posting, even if you just need to vent. That's part of the reason we started this forum! You'll always be warmly welcomed.

Best to you always,
Fredo

_________________
ASHA Moderator


Top
   
 
 Post subject:
PostPosted: Fri Mar 13, 2009 7:56 pm 

Joined: Tue Jan 20, 2009 5:40 pm
Posts: 17
Hi ukgirl. I'm sorry this has been so rough for you, but I can definitely relate to the anxiety of an HPV/abnormal cells diagnosis. I had a hard time suppressing my anxiety for a while. Honestly, trying NOT to read too much online was one of the most helpful things in me pushing HPV from my mind. I wasted more time than I care to admit reading about stats and stories and research. My advice, from someone who's been there, is to read only the credible, monitored (by a person knowledgeable on the subject) sites, take what information is helpful/comforting to you, and copy/paste it into a word document. Then just open up that document and reread it whenever you're feeling stressed or need re-reassurance from the stats. I found many sites, especially forums, contained a lot of worst case scenarios and unclear information that just added to my anxiety. This site/forum were good though, as it's straightforward, positive, and well moderated, hence why I'm still here posting!

As far as worrying about your significant other... I was in a similar situation as you, i.e. having already had unprotected sex with my partner for almost a year before receiving my diagnosis. My doctor told me that she it was pretty much 100% certain we were both carrying the virus at this point and that we shouldn't take any further precautions (i.e. start using condoms or not having oral sex) just because HPV was confirmed. It sounds a little grim to say 'what's done is done', but in some ways for me it was better to just move forward and try to keep life as normal as possible. I didn't feel we were putting each other at any further risk at that point since the exposure had already happened. In all reality, the overwhelming majority of the risk with HPV is for us women, and even then the vast majority of otherwise healthy women will eventually clear the virus ourselves (though I think we all wish it were faster). That said, it's definitely all about your (and his) comfort zone. We personally chose to use condoms for the first 6 months after my abnormal PAP only because I had read condoms may help speed virus clearance by reducing the cervix's viral load. After my last colpo/PAP looked more normal, we decided to stop using them, hoping my immune system has built up its antibodies and/or he's cleared the virus too.

I hope this gets easier for you. It's a shame such an impersonal virus has such an emotional impact on so many of us. I hope you're able to find some strategies that help with the watching and waiting process!


Top
   
 
 Post subject:
PostPosted: Mon Mar 16, 2009 7:09 am 

Joined: Wed Nov 19, 2008 4:23 pm
Posts: 21
First of all, *huge hugs* to Fredo. Thank you for being such a warm and reassuring presence on these boards. And *bear hugs* to thebear. Thank you for good and sensible advice.

I have just been to see my doctor, and it turns out that my most recent smear was borderline. "Occasional koilocytes with borderline nuclear change." So this is somewhat more hopeful. My doctor phoned the lab to check whether they recommended colposcopy, but it seems that they are satisfied for the moment that my results are improving. If they were still borderline or worse next time, I would be sent for colposcopy then, but I think it is standard for that to happen after three borderline smears rather than two mildly abnormal ones.

So I feel a bit better for the moment. I still think I need to take better care of my health and my immune system, which, judging from persistent sore throats, colds and coughs, is not at its best right now. I think using condoms for a while might be a good idea, to give my system the best possible chance. I may go and get checked out for HPV as part of a full sexual health screen, but I think that would be as much part of trying to take better care of my health generally. I also feel very lucky in that my boyfriend has been incredibly patient and supportive over the whole issue, and that helps a lot.

Any further insight into the technicalities of my results would be appreciated. And thank you again to Fredo and thebear for their kind words. This board is a very good place for the confused, scared and generally wobbly.


Top
   
 
 Post subject:
PostPosted: Mon Mar 16, 2009 9:19 am 
Site Admin

Joined: Wed Oct 04, 2006 4:08 pm
Posts: 2122
Location: North Carolina
Occasional koilocytes with borderline nuclear change

HPV can cause irregularities in the growth pattern of cells. It's not uncommon to observe a larger cell nucleus, for example, or a boost in production of cellular proteins that make fluid in the cell spread out into a balloon-like appearance. Such cells are known as koilocytes.

Keep us posted, will you? And check in even if you don't have a specific update, just so we'll know how you are.

:wink: Fredo

_________________
ASHA Moderator


Top
   
 
Display posts from previous:  Sort by  
Forum locked This topic is locked, you cannot edit posts or make further replies.  [ 7 posts ] 

All times are UTC - 5 hours


Who is online

Users browsing this forum: No registered users and 1 guest


You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
cron
Powered by phpBB® Forum Software © phpBB Group