Getting back in the saddle and HIV

[HIVpos]

I have recently been diagnosed as HIV positive. I am sharing this in an effort to try to help prevent anyone from being in the same situation as me, which is why I have posted in Relationships.

I have obviously nc for this, but have been on MN for a long time. I am late 50s and was married 23 years, mostly unhappily but 2 lovely DDs. After my divorce I took a year to “be me” but when the opportunity arose at the end of last year I dated. We had “the talk”. I explained I hadn’t had sex for 10 years (yes it was truly a crap marriage!) and he explained he had been recently tested for STIs at the local GP as part of a full medical. I know now that some local GPs do not like to actually test for HIV and this should really be normalised along with other STIs. I knew this guy, I know his family – he wasn’t a total stranger.

So we had sex – with a condom initially as I explained I could still get pregnant. He offered to get the snip – he was hoping for something long term, whereas for me, to begin with anyway, it was just a bit of fun with no expectations. I elected to get fitted with the Mirena coil, which would also help with the periods. After this we had unprotected sex.

In January I had an awful sick bug, lasting 10 days during which I could not eat or drink and lost 12 lb. I now know this was seroconversion, which can happen about 1-2 months after becoming infected and normally takes the form of bad flu and/or rash. In March I finished with him and due to dryness/soreness went to get tested. This was diagnosed as Atrophic Vaginitis, normal for women my age, easily treatable, but, please note, can make women more susceptible to becoming infected due to thinning of the vaginal wall. I had STI tests done while I was there and heard just before Easter that I was HIV positive.

I am now on meds (2 weeks) and will be for the rest of my life. I know this will keep it supressed and non infectious and I can lead a normal life, but it is not yet curable. This has totally floored me when I thought my life was starting again, and I have been an emotional wreck. However I have had great support from lovely friends. It has been a very steep learning curve, and I hope to soon stop feeling that this is what defines me and continue with my life. However, in any new relationship I have, I will always have to have “that talk” and for guys in my age group that will be tough.

I would urge anyone thinking of starting a relationship to both go get tested, and be aware there is a window period of about 1 month between being infected and it showing up on any test

OP, this is very brave of you and has encouraged me to be open too (although I have namechanged, I have been on Mumsnet for about 7 years and have often thought of posting about it).

I was diagnosed HIV positive 15 years ago about 6 months after getting married when going for ivf treatment. DH was (and is) HIV negative. I can't be sure, but think I got it from my previous boyfriend. I had had five sexual partners in my life including DH, all medium to long term partners). I thought I was really low risk.

It was a hideous shock at the time. I thought my life was over. I got good advice to really limit who I told (DH and my sisters know, that's all) and really good medical support as I had to go on meds straight away. I got some really helpful counselling from Terence Higgins Trust.

Since diagnosis, I have had two children with DH (both neg), am really healthy with a strong immune system. No side effects from the meds and no illness, just a bit more care during pregnancy and a few extra scans etc if my consultant thinks they are appropriate. I don't really think twice about it from one six month appointment to the next. It truly doesn't define me.

So to answer surferjet, yes the stigma is much worse than the disease, I don't tell anyone as they might define me by it. Also, having young children, I wouldn't want them to be affected by it if people gossiped about me or rejected them because of me.

I wish it wasn't like that, I wish I was braver as it could help normalise it, but I am not and that 80's death sentence stigma is still there and I am not brave. I wish that fear of the stigma could be removed.

I like a quote from a sexual health nurse I talked to when first diagnosed and I talked about how ashamed I was. She said "I wish we could get rid of the shame from STIs, it's ridiculous, nearly everyone had sex, so why feel ashamed". I try to remember that.

OP, you sound like you are doing fine, but if I can ever help, please PM me.

HIVtoo thank you so much for posting - so I am not alone (half wondering if HIV3 might turn up but hope not!!!). That must have been tough for you so soon after getting married, but great that you got treated and your kids are neg. Makes you think - you get offered HIV test when pregnant and some people refuse because of the stigma - so silly really!

No, I don't feel ashamed. I don't actually feel I did anything wrong and I asked the right questions at the time.

I have told a few friends, and haven't discovered or heard of anyone the same as I live in a small village right in the south, and I guess no one would say anyway. You are right, there is good online help.

I know as more and more generics come on the market as patents expire meds get changed to reduce costs to the NHS. Have you had yours changed that much?

Hi, sorry, I was running around half term with the kids and DH away.

I had to change meds when I wanted to try ivf again as some are vaguely linked to foetal abnormality (they aren't sure as obviously you can't run clinical trials, but obviously wanted to reduce risk) which was a complete pain as it was six pills a day. After I decided two was enough, they moved me to a three a day regime and then as generics have become available I have switched to two a day.

Never any problem, I haven't had any side effects except some nausea if I ever took them without food. So I don't. Never had any blip with test results, CD4 has been really high for years, I test undetectable, liver function and cholesterol fine. i genuinely don't give it any thought or fear the future.

Does make sense to test in early pregnancy, not least because if you are they can treat you so it does not get passed onto the baby. Most if not all fertility clinics require hiv testing before they will treat you. Makes sense, but a bit of a hideous way to find out.

I just wanted to add to everybody else, what a brave and heartfelt post and what courage and stoicism you have shown. In post-divorce life re-building, we are ALL at risk, that is very clear. I didn't realise how much I had been put at risk prior to divorce by my ex-h's widespread adultery. You have been terribly unlucky, but because of you, I have learned a whole lot I didn't know about HIV. I was a teenager when it first became a "thing" and remember how it struck fear into everybody and also how the gay community were blamed and ostracised as a result. Thank goodness we have a more knowledgable and tolerant society these days and also much better drugs in order to treat this thing.

I wish you nothing but happiness in the future OP, this DOES NOT define you, it will hopefully just become part of the background of your life and something you just deal with as you go along.

HIVtoo. That was also an incredibly informative and reassuring post. Maybe MN could think about disseminating these stories? Something needs to be done to address the lack of general knowledge in the post tombstone years.

Thanks for replying HIVtoo. Yes it is amazing how much you get looked after - NHS at it's finest! And it's so wonderful that you can continue to have a normal life with no babies infected.If tests weren't offered when going on ifv or getting pregnant who know how it would turn out, and some people refuse to test as they think people might assume stuff!!

I'm on 3 pills a day - Raltregravir & Kivexa and the only side affect so far has been tingling in my legs and hands which is not a big deal, though stressful at first. I feel it will be a lot better when Raltegravir bring out their one a day pill so I only need to take 2 pills in the evening. I hate having to take one in the morning as it becomes the first thing i think about.

My VL is 474 which is good as really low, I know, (probably because caught early) and I hope to be UD after my first blood test. My CD4% is 40% so that of a negative person which is reassuring.

That does sound good pos. I wasn't caught early (had been with DH for six years so dated at least prior to that), so my CD4 was non-existent and VL really really high - they couldn't understand how I hadn't been ill and it was a bit of a panic. Still I went undetectable in three months of treatment, so i hope you do too. They don't test my CD4 every time now, so I can't quite remember my number (that's how little Thought I give it), and I don't get mine as a percentage, just a number, but it always 1000 to 1200, I think anything over 500 is considered normal.

I wish more people knew that it wasn't a death sentence these days. I wish people knew the chance of passing it on to a child is very very low if treated (or obviously I wouldn't have tried to have children) and they suspect the very very few cases where it is passed on are where the patient doesn't follow treatment advice. Research and drugs are improving all the time.

I remember being quite surprised when it was on the news a few weeks ago saying hiv patients can now live as long as 'normal' people. My consultant has told me that for the past 15 years.

You sound very level headed about it OP, but if you do have a wobble, then there is help out there. A conversation with a helpline worker at Terence Higgins Trust completely saved me at one very low point early on.

My good friend is hiv+, he's nearly 60 now and was diagnosed late 80's. He takes a bucketful of pills everyday but is fit and happy and married to a lovely guy (also hiv+).

I'm just saying this as so many people think of hiv as a death sentence but if caught early it really isn't.

He also recently moved to a very rural area and said all the doctors get so excited when they see him as there are so few hiv patients in the area. He told me the first time he went into the local hospital for a procedure they'd done it up like a scene from Dexter and almost every doctor in the building came to watch.

HIVtoo
Thank you for sharing your story.
I suppose the taboo aspect of hiv will never disappear completely - much as any other STI. I mean, no one casually drops into the conversation that they're being treated for syphilis or gonorrhoea do they
So there's only so far you can go iyswim?
I've met a couple of people who are hiv+ and it's nothing really, I just said 'oh, ok' - 20 years ago I probably would have run out of the room screaming so great progress has been made on how you actually get hiv.
. But it's brilliant that the treatment is so good now, & I'm really confident a cure is on the horizon.

Thank you for sharing this, wonderful

I'm amazed at the ignorance of some people I met a guy recently who said he didn't need to get tested as he'd had 'lots of blood tests at the GP and nothing had ever been picked up'

There are some great clinics out there where you can be anonymous and even text you the results

I've instilled my love of testing with dd who also goes for yearly testing even though she's in a relationship, and also encourages her friends to go - most of whom have never even considered it

WildNights - good for your friend. I guess, especially being in a supportive relationship, he is more comfortable with things and people knowing.
I had to educate my GP as when I told him my results he just looked at me blankly. I will also direct him to the webpage of any potential interr-action between my meds and anything he might prescribe if it comes to it. With some meds you can't even take certain ant-acids, but I can take most things with mine I think

Mozzchops - exactly as you said. Thank you for that

Can I ask if you told the guy who infected you and his reaction?
Thank you for sharing your story. I do believe many people don't think of these things when starting new relationships after divorce in later life.
I think you are very brave

Scribbles it was one of utter disbelief and shock. He had no idea. However clinics offer very good counselling pre and post testing, and there is a wealth of help online.

Where someone has been tested positive, the clinics work on "Partner Notification", whereby they encourage the infected person to tell anyone they have had sex with and indeed anyone else at risk. If they do not want to do this then they will make contact for them on an anonymous basis and offer counselling and testing. It is a delicate balance between respecting privacy and duty of care. Of course this is true, I believe, of other STIs in the way they are handled.

Any person who has been told then has the choice to go for treatment. A lot go into denial and, in my clinic nurse's words, run for the hills! It takes time to get your head round, but the important thing is not to pass it on and the clinics do what they can to help

Hello, especially to Too and POS. I am also positive, and have been for over 10 years. I'm now in my very late 50s and when I found out I really thought my life was over. Luckily, I have supportive family and the care I get (thank you nhs) is second to none. I'm on two pills a day, go to the hospital every six months. My viral load is undetectable now. I live a normal life, just about. The only thing not normal is feeling confidant enough to disclose my status. (I've even nc here)I can't wait for that day.

Oh and I think I read that, apart from gay men, women in their late 40s and 50s are the biggest group of newly diagnosed.

Whomever, thank you for posting. Yes, the NHS are amazing. And yes, we are, I believe, the biggest group of newly diagnosed. I think finding a cure would certainly help, and, as my DDs have indicated, it is not as big a deal for them, so things are changing. However it will be so difficult telling any potential partner for me.

Re telling people, I have told about 20 people so far and received nothing but support. I don't think I will be telling anyone else though

Ha - and of course I've told you lot

New campaign started today in an effort to get people to share to raise awareness that this is not a life sentence any more

www.tht.org.uk/sexual-health/About-HIV/Can_apos_t-Pass-It-On

Hi

Just found this thread, thank you for sharing all of you. My husband is HIV+, is on a cocktail of drugs but generally we live a normal life. We've had 2 kids together (both neg) and couldn't ask for much more.

There is a life to be had after diagnosis

Good on you for posting this OP. It could happen to anyone, thanks for sharing. I hope you keep well

I worry about a friend of mine, he's in his fifties, fairly promiscuous and never uses condoms. How he's not managed to catch the virus already I don't know.

Interesting to hear that they don't usually test for it as part of an STI a screening. I went for the full works once, many years ago, after I found out my then partner had had a ONS. I really had to push for an HIV test. My doctor's argument was that 'they' didn't like doing it without counselling (which I can understand, but wasn't offered, though she, the doctor, knew I was seeing a counsellor anyway, but this didn't count). My response was that I would rather know either way, rather than spend my life worrying. So I got the test.

SimonNeilshair, thank you for sharing, and it's wonderful that even with one HIV pos partner that kids can be born neg.

I would dearly like to have a relationship in the future, but for people my age I feel the HIV thing is going to be such an enormous obstacle. Stephen Fry is supporting the campaign and there are a couple of right twats posting to say they would never have sex with someone who has HIV. Others have responded "so you'd rather have sex with someone who hadn't been tested rather than someone who is HIV and non infectious?".

For the record, after 1 month on meds I am now not infectious any longer, which is great. However even if I were to consider dating, I'm not sure how to go about it...date for a while and when it comes down to it admit my status? Not sure I could I don't actually have to tell, as I can't infect anyone, but couldn't not do so. Go on an HIV dating site? Small gene pool, especially near me. It's tough, and upsetting even to contemplate. Tbh I still cry daily over this. Why me?

Dude, thanks for another confirmation that GPs don't like to do HIV testing, for the reasons you have stated. I get why, but people, especially older people who have never felt the need before, do not like the idea of going to an STI clinic for testing.

Thanks for posting positive. I know a lot of women who post divorce are getting infected by serial lotharios. It's a huge problem in Hong Kong where hiv infected wives jump out of high rises when their husband infects them after a china mainland trip where they used infected sex workers without condoms.

Are you sure your partner didn't know?
I'd sue him as a civil suit if I could find out where he had his std testing, and whether this included hiv testing. He must have known.

Have you contacted him? He must be infectious if he gave this to you? Is he still dating?

There are many cases against vectors who deliberately infect people. Have you thought that he might have deliberately infected you? I hope not. It's a horrible thought, but it needs asking.

I'm so glad you're positive about this and your VL is negligible. The meds can cause liver damage and complications with other meds, so hopefully you wont have to be hospitalised like my friend was when all her meds started to interact badly and she had side effects.

Also you must tell your dentist. There are lists of dentists and hygienists for hepatitis and hiv pos patients, your clinic will have that.
You may have to change your dentist, but the care is the same.

I don't think hiv infection has the same tombstone association as we all had with it in the eighties, but it's still a very raw deal.
It's incredulous to think some women refuse testing when pregnant. It's so treatable.

It's outrageous that hiv antiviral meds are expensive in Africa and India, when so many babies and children are infected and orphaned. They should be free.
It's really outrageous that governments like china can stick their heads in the sand and lie about their national hiv stats. claiming it's close to zero!
Amazing too that women are so ashamed of the infection their positive husbands give them they jump to their deaths with shame and embarrassment rather than buy meds and ltb.

You're doing very well.

Thanks, this was a good time for me to get a reminder. I'll book a test soon, before I sleep with anyone new.