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

It's really not a big deal these days. I have a friend about your age, similar circumstances. She's doing really well.

Thanks BrokenGirl - out of interest, has she tried dating?

My impressions if this infection are that for younger people it is not such a big deal, but for those my age it is. I have to be grateful I guess that I was not born even earlier and it would have been better to have been born later.

There will not be a cure in my lifetime, but hopefully as more trials are done on injections given, say, every 2/6 months it will be easier than the pills taken daily

Just wanted to correct something that Totallypearshaped said about changing dentists etc, that really shouldn't be necessary for anyone with a virus such as hepatitis or HIV.
All dental surgeries should be practising universal cross infection control. Basically treat everyone as if they have everything. Some people may not know they have HIV etc, others may choose not to disclose. It's nice if someone does tell so if a sharps injury were to occur for the clinician they are aware of medical history etc but really unless you are unwell with your condition (for example needing specialist care) all dentists should treat you exactly the same.
And just to mention HIV is actually quite hard to catch from a sharps injury anyway. Hep B much easier to catch but all dentists etc are required to be vaccinated against hep b.
Just wanted to mention this as I've had patients come in who have been terrified of going to the dentist after being diagnosed as HIV positive as they were scared of being turned away etc and as a result have had their dental health decline a lot.

I was just coming on to mention what Montanajack has said much better than I could.
In addition the area I work in, we are now doing hiv as part of our routine testing with no particular counselling requirements. We do mention that it is part of the testing set, but that's it.
Part of the hope is that treating it as a routine test will help reduce the stigma.

Thank you Montana & Coldhands - exactly! There is no requirement to tell anyone - not your boss, not your GP, not your dentist, not anyone! It is down to personal choice. I have told my GP, simply because it will make life easier if I need other meds and any potential inter-actions. and yes, there is one HIV med that you cannot take certain antacids with, for example (not the one I'm on thought). There is also a website where anyone can check any inter-actions too: www.hiv-druginteractions.org.

I do not plan to tell my dentist. I am aware that my gums are somewhat white, which is probably due to very low ferritin (iron) levels due to seroconversion, for which I am taking tablets. This will be checked in due course. My consultant did say that i should have 6 monthly dental check ups, but I will play that one by ear. I already know that any general dental anaesthetic will not react with HIV meds.

It is actually regarded as discrimination to be turned away by a dentist, or to be given the last appointment of the day, due to the fact that they think they need to sterilise equipment extra carefully. there is no need.

That is brilliant that HIV is done as routine testing in some areas - makes me somewhat happier. I just wish that it was done in all areas.

I see, thanks for that, it must be different protocol in the uk from other countries.
In Ireland, there are lists of dentists available in the clinic for those who have contracted HIV.

We have a two tier health provision system: universal healthcare if your income is below a certain level, and health insurance for the rest of us.

Insurance premiums go up considerable with a hiv diagnosis, and there are lists of doctors and dental clinics who provide healthcare to those with viruses such as hep and HIV.

You do not need to disclose your viral status by law in Ireland, and hiv testing is included if required in a std clinic, or by a GP.

There is a mandatory universal HIV and syphillis testing for all pregnant women as part of their antenatal care.
Antiviral meds are administered to the mum to be to reduce her viral load, and to protect the foetus from infection, and breastfeeding advice is given as the virus can be transmitted that way to a baby. It is my understanding that a pregnant woman cannot legally refuse these medications if she is HIV positive.

Hth

Totallypearshaped it is a fact that in the UK about 13% of just over 100,000 people with HIV do not know they have it.

I do not wish to answer your questions about the person who infected me (other than to say that yes, of course I have told him) as it would detract from the point of this thread.

Suffice to say, when someone gets an STI, there is a practise of partner notification used by clinics, where anyone who might have been infected is notified by the clinic nurse - discreetly of course - and offered testing and treatment if need be.

If anyone is knowingly infected by someone, without being told that they are infectious, they can contact the Police Protection Unit. However, especially in England, these things rarely go to court, due to the proof needed and the stigma attached. As a matter of interest, in Scotland you do not even need to be infected, just have sex with someone who does not tell you that they are infectious.

If, like me, you are HIV pos but not infectious, there is no requirement to tell anyone you have sex with, as you CANNOT pass it on. However, I would have to tell, I couldn't not!

I don't think hiv infection has the same tombstone association as we all had with it in the eighties - of course it doesn't!! It is totally treatable now - just not curable

Yes, we are lucky that in this country that HIV treatment is free - not even prescription costs. It does seem somewhat unfair that it is not in other countries, and while this is the case, it will never be wiped out.

As a dental professional I would recommended you do tell your dentist about your HIV status (only recommending of course I totally respect your decision either way) only because there are certain oral condions that can be more common in people who are HIV positive. The dentist can then be more aware of looking for these and help with any problems that do occur. You could also request that it is not written on your notes as well and only mention verbally if you want.
I'm sure you have well researched all of this of course so I apologise if I sound patronising! Im just putting a point of view forward from a dental side. Not necessarily for you only just anyone that may read this in the future.
Again it's only advice I would give and it's totally your decision either way. And yes it's true what you say it is discrimination to turn someone away etc. The "last appointment of the day" should have been scrapped years ago but I know there are some old fashioned practices still around doing this which is totally out of order and ridiculous. Even as recently as 4 years ago I worked somewhere that sent me a message asking if I could see someone after official hours as the person needed to be booked last and there wasn't any space. On querying why it was only because they were HIV positive. They weren't happy when I told explained it wasn't necessary, but they grudgingly listened. I no longer work there now anyway.

Montana no you are not patronising in the slightest and I value your opinion. HIV is not at all common where I live and I had to explain to my GP about viral load, CD4 etc. I just don't want to have to do the same thing with the dentist, and I don't know how much training they get in this or how much they retain. I am also aware of time constraints of NHS dental appointments.

Some professionals/bosses, I have discovered, don't employ the discretion needed, and it's a pretty small place where I live. It's not so much that I don't want people knowing, it's more that I don't want people talking behind my back and me not knowing that they know.

My immune system from first test (before meds started) has been that of a negative person, so I would only have had about 3-4 months of it possibly being lower, so hopefully not much damage done compared to those who don't know or get treatment later.

That's actually a good point I guess about time constraints and individual dentists. I guess I view things from how I work and my current practice which is lovely. I do know there are places out there that are much more rushed and not as up to date.
Dentists would definitely have been taught about CD4 counts and viral load etc at uni (I was as a hygienist so I'm sure they were) but whether they still remember what the were taught if they have never actually come across it in practice before is another story I guess.

When I met DH, i asked him to do the HIV test. It was really a normal thing to do in my own country and seen as a sign that you did care about the other person. It's also done only when relationhsip was more 'secure' so at least a few months after starting seeing each other.

DH said yes but was very worried about the effect it could have on mortgage etc... He ended up giving blood instead, on the advice of his GP.

Sure enough when we applied for a mortgage a couple of years later, they did asked us if any of us ever did the test

I'm happy that we have moved in from these times.

Well my GP is getting on a bit so I guess it's a need to know basis as he had only One other HIV patient who is long term infected. My dentist is somewhat younger at least, but I doubt, even with knowledge of HIV, that he would be up to date on, say, the current campaign .

CantFind that is horrendous that you even have to answer such a question. Thank God times have moved on, as you say. I understand quite a few jobs require annual testing, which is actually a good thing

Thank you for posting OP. All the best to you.

Well best of luck to you positive, you do sound like you're doing everything you can to stay healthy, and as you say the assocations with HIV and AIDS have changed tremendously since those tombstone ads of the 80s. Times have changed.

I'm sorry if I upset you with wondering about your x partner's motivations. Of course you don't have to discuss it here!
Where I am you can bring a wilful endangerment charge against someone who has the virus and has unprotected sex with you. (I'm not in the uk) indeed the Julian Assange rape case hinged on him not using a condom and then refusing a HIV test.

It's shocking and ethically wrong that anti HIV viral medications have to be paid for, and that there is still a financial knock on effect and stigma in even getting a test.
It's a puritanical hang up, (because the virus can be sexually transmitted) and of course pharmaceutical company greed, as they have patented the chemicals.

I think the recent public testing by your prince Harry has done wonders for accecptance of testing as a normal occurrence in a day to day setting. (Not that he'd need a mortgage approval) of course his mum Diana did wonders for a public volte face when she hugged a positive patient in hospital without gloves or a mask.. remember? I think up till them everyone had the pre antiviral "isolation ward" association. She really changed the world with her hands on positivity.

If all jobs required annual testing and there were free medications, the virus would die out. Like the polio one is almost gone with universal vaccinations, and the smallpox one has been eradicated.
In Ireland we have mandatory HIV status testing for all pregnant women and free treatment. Imagine if everyone had a free test and treatment was free. Hiv would cease to be, as no one would be able to transmit it.

Hugs

Thanks Totallypearshaped - no you didn't upset me with the questions and if was you i would be wondering the same thing. In the UK it is regarded as GBH to have unprotected sex if you are HIVpos, infectious, and don't tell.

Ye, Prince Harry has done a good job of continuing what his Mum started.

Unfortunately there are always going to be certain countries where there will be pos men forcing girls into sex. And some countries will not allow anyone in who is HIV pos - makes it difficult for those who already live there and become infected .

i just think if I can do my (tiny) bit to help reduce stigma and educate it might help

HIVpos You are doing wonders here so thank you for posting. I do wonder whether it would be a good idea to have HIV, and other STD, information on site? So many of us are likely to be in one of the most vulnerable populations as middle aged women?

Regarding dentists - I would tell, if only so the dentist can check you more carefully for some of the oral problems than can be associated with HIV/AIDS/Medications etc. If your dentist is not sufficiently up to date to be able to understand about viral load and UD status then they bloody well should be.

Having said that I totally understand your need to have some control about who knows etc. Tough call. If you posting here saves one life then it is totally worthwhile. As there are always more readers than posters I reckon you will have reached a large audience due to your willingness to initiate the thread and then your candid responses.

Thank you

Thanks Fuckit - and all those who have posted. It's easy to post incognito I guess - the beauty of MN, and also I feel comfortable in that I have been a member on here on and off almost from the start.

I will see how I feel re the dentist as will probably cry. It's not till September anyway.

No problem. Yes she has, she has a lovely second DH now

Awww thanks for replying Broken11Girl that's lovely to know

metro.co.uk/2017/06/29/mother-with-hiv-says-modern-treatment-is-so-good-you-cant-pass-it-on-6740355/

I was just wondering how you are! Has the Coronation Street storyline helped to initiate conversation about HIV?