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National Cervical Cancer Coalition


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 Post subject: I need some hope!
PostPosted: Fri Oct 23, 2009 3:17 am 

Joined: Mon May 04, 2009 6:42 pm
Posts: 25
Hi everyone,

Well I found a bump that went wierd and wartlike about 6 months ago, got it froze off, my fiance panicked, found some bumps, and thought the worst. Her doc said no dont worry its nothing, but now months later they grew and its confirmed they are what we feared.

Anyway I've posted on here before and Fredo has been a good source of info and hope.

But the doctors who have spoken to us aren't - they are very contradictory and their advice is not in any way encouraging - I don't know if they are misinformed, or realists and maybe we are misinformed..

The doc says there is no way to get rid of it, they also said it can be passed on via semen, and that rest is crucial. My gf now says no sex ever again, and will only work 4 days a week as rest is important. She also doesn't want to risk children, we know the risk is supposedly very small but if there is any risk at all we don't want to ever make a child have to bear this burden...

I feel responsible, for ruining her life. How do you cope with hearing the person you love the most on the earth, tell you she doesn't care about life anymore. I do not know how to cope with this. If it was just me with this virus, I would happily take it from her so she didn't have to suffer.

I pray and pray and pray but I see no sign of hope. If this is so common how come its so bloody bad and there isn't a cure yet god, please someone make a cure :!)

Sorry for ranting, I'm just in a rut.

Thanks for listening.


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 Post subject:
PostPosted: Fri Oct 23, 2009 12:45 pm 
Site Admin

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

Man, I'm sorry things are so difficult right now. I really feel for you and your girlfriend.

Couples who share HPV are at little if any risk of making things "worse" by continuing to be sexually active with each other. There's no common recommendation of which I'm aware that a couple abstain from sex due to an HPV diagnosis, certainly not as far as reinfection goes.

HPV has been detected in semen but I don't know if this well documented as a likely means of transmission. The literature still refers to skin to skin contact as the mechanism of transmission, and this is certainly all that would be common.

There is very, very little risk regarding genital warts and pregnancy, so much so that women who have warts present at the time of delivery are almost always encouraged to deliver naturally.

Pal, believe me, no one's life has been ruined. It might seem that way, though! Cut yourself a little slack here, and I hope your GF can do the same soon enough.

Post anytime and come here for support as often as you need it!

Best,
Fredo

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 Post subject:
PostPosted: Fri Oct 23, 2009 7:49 pm 

Joined: Mon May 04, 2009 6:42 pm
Posts: 25
Thanks Fredo,

I'll be here a lot then because this is one hell of a struggle. I've told my gf we gotta face this as best we can, and we can get through it, but she believes the doc over me.

Her doc said you never beat this, it comes back whenever your immune system is challenged, and is harder later in life as you get older.

I hate this doctor for taking away her hope! The doc wouldn't cryo the warts and would only prescribe aldara.... and then said aldara will make you have open sores and you need to treat it for 5 months at a time. I thought this doctor was going to give encouragement not cause this kind of loss of hope!

Fredo you've got heaps of experience with hpv right? what's your background can I ask?

Cheers


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 Post subject:
PostPosted: Fri Oct 23, 2009 9:47 pm 

Joined: Mon May 04, 2009 6:42 pm
Posts: 25
I am sorry to put this out there its just such a burden, my gf now says she is furious and hates me, we've been through this for months now but the doctors advice has brought it all back - is Aldara really so horrible and does it have to be used over a whole 5 months?

I just truly don't know how to handle having her ask me if i can let her go so she can finish it... its truly devestating.

She blames me and it is most likely my fault, so I will carry this guilt accordingly.

Having to try and live a normal life for appearance's sake is very difficult - and seeking help is hard in a small community where confidentiality is by no means guaranteed also presents a challenge.

I am grateful for your support.


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 Post subject:
PostPosted: Tue Oct 27, 2009 9:12 am 
Site Admin

Joined: Wed Oct 04, 2006 4:08 pm
Posts: 2122
Location: North Carolina
Quote:
...is Aldara really so horrible and does it have to be used over a whole 5 months?


Aldara is typically used for up to 16 weeks, although warts often respond sooner. Even when Aldara doesn't remove all the warts, it can reduce them in size so that removal by another method is easier.

The skin irritation caused by Aldara is typically described as mild, but some report that it was very uncomfortable and they stopped treatment for awhile. There's a whole range of responses here, as you might imagine, usually not too bad but the irritation is more pronounced for some. I've never heard of anyone using the cream regularly for five months, and expect that doing so would greatly increase the odds of severe skin reactions.

It's true that experts don't know if HPV is totally cleared or if small, undetectable amounts remain hidden in the skin cells. Some people do have warts come back years later, but I think this is most often observed in someone with a very badly compromised immune system (chemo, organ transplant, major illness). Long-term recurrences are not a normal pattern, but there are exceptions.

I hope this helps!
Fredo

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 Post subject:
PostPosted: Sun Nov 08, 2009 9:08 pm 

Joined: Mon May 04, 2009 6:42 pm
Posts: 25
Still doing it very tough, this is going to take a long time to come to terms with. I am struggling, have considered online counselling but can't find a good one (I submitted an initial consultation thing for one and didn't get a reply - huh the counsellors don't want to touch this one), and am struggling with my fiance's and my own depression and suicidal thoughts on this, still cannot access any local support and online answers are contradictory about hopes for clearing this virus, and/or having healthy (non-infected) children which is my fiance's one goal in life now...

How could I be so stupid. I ask myself this question at least 50 times a day. Why was I so nieve until now. Why does God let this happen, why wouldn't he help, why won't he even answer me when i ask for help, what can I do to fix this, so helpless its killing me.

I don't know how you all cope, I really am not. Thanks for listening though.


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 Post subject:
PostPosted: Mon Nov 09, 2009 7:57 am 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
Your gf needs to seek out a therapist to deal with her own issues and you need face to face therapy yourself, not online therapy for this. You can only help her so much and you also have to help yourself and not let her bring you down too.

I also encourage her to seek out a 2nd opinion from a different gyn so that she can hear that her doctor is blowing things completely out of proportion and giving her anxiety needlessly. 1 out of every 3 adults has or has had genital hpv. It's incredibly common and obviously 1/3 of us haven't stopped having sex, children etc. Your gf is having an uncommon reaction to the news about hpv and needs to seek out better professional help than she has gotten so far.

External genital warts aren't really a health risk for the most part ( there are a few types that can be but mostly it's all cosmetic issues ). For the vast majority of folks they are treated and go away. The hpv vaccine is also now available for males and females so that you can help prevent the most common cancer associated forms of it too. It is not a death sentence by no means and isn't worth the changes in your lives that your gf has decided to make.

betsy

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 Post subject:
PostPosted: Tue Nov 10, 2009 9:28 pm 

Joined: Mon May 04, 2009 6:42 pm
Posts: 25
Thanks for your reply Betsy,

Unfortunately, face to face counselling is not an option for us here, where we live in a very small community the whole concept of confidentiality isn't what it should be.

I too believe this isn't the end of our lives, but to help my fiance understand this, and to fully accept this myself, is going to take time and hopefully support from places such as this forum, to accomplish.

Hence why I've asked questions such as I have on here, understanding now that the moderators have more experience than the misinformed doctor giving my fiance the anxiety she now has.

It is just hard to explain that a forum on the net has more experience than a doctor - I believe this place is better than a misinformed doctor myself, but the logic of it is a struggle sometimes.

There is constant humiliation in going to a doctor about this, then having to go to a chemist (have to go to a different town for this as its just too smaller a place), then what about being pregnant when we do decide to have children - having to tell the doctor again about it. So much shame and embarassment!

Anyway thanks again, I appreciate the support.


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