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Original poster

Getting back in the saddle and HIV

96 replies

HIVpos · 30/05/2017 20:04

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 posts:
wobblywonderwoman · 30/05/2017 22:35

Huge admiration for you op and wishing you health and happiness xxxx

Blushingm · 30/05/2017 22:42

I work in sexual health and we encourage everyone who comes in for sti screening to have a simple blood test which will test for hiv & syphilis as well as the urine test (as swabs for men who have sex with men) for men and the swabs for women. They are such simple tests but there is so much stigma and embarrassment surrounds my sexual health people do t do it

Ciaovenora · 30/05/2017 23:05

I wonder have you got your age wrong am i being really thick in thinking getting pregnant in your late 50s is far from the norm.

Obviously, am very sorry you're in this position as has being said all ready, being positive these days is now a managed health issue.

Ps; Have not trying to be mean by questioning your age I do think its a typo.

ivebeenanddoneit · 30/05/2017 23:05

Hi HIV - I am someone you are speaking to. Exactly your situation - mid 50s, no sex for longer than you, got together with someone I'd known for a while, he is lovely and very keen but all sensible thought went out of my head and we had unprotected sex about 3 weeks ago and once since. I have to deal with this now. Your post is very timely and much appreciated as I wouldn't talk about this in rl. I will talk to him and go to GUM. Thank you HIV - sending you my very best wishes in dealing with this. Flowers

Almahart · 30/05/2017 23:11

OP what a brave and generous woman you are for sharing this here. So sorry you are dealing with it Flowers

FuckitAndStartAgain · 30/05/2017 23:40

Ivebeenanddoneit, I suspect the OP is hoping for exactly that. Openness and education has to be the aim really doesn't it? Hope you testing goes well, and that ops treatment goes as well as anticipated. Tough times all round. 😞

FuckitAndStartAgain · 30/05/2017 23:45

Ciaovenora

If you have not gone through menopause in late 50s pregnancy is always a possibility. You are right it is rare but I suspect most of us would bear it in mind (I am mid 50s).

Ciaovenora · 31/05/2017 00:57

Oh, thanks much for explaining that AndStart.

ParmaViolets17 · 31/05/2017 01:27

Just in case there's anyone reading this who's wondering about getting tested themselves...

I've had the full shebang of tests several times (syphillis, gonorrhoea, hiv, chlamydia, prob others I've forgotten...) It's completely painless and if you use a sexual health clinic, you can be anonymous if you choose. You get your results very quickly, everyone is totally professional and there's never any shame or embarrassment about the whole process. Easier than smear tests, from a practical vp (ime).

Sorry to hijack your thread OP. I watched an old Stephen Fry documentary on YouTube a few weeks ago, where he talked to people who'd been infected. One was a teenage girl whose mum had passed it on to her, and one was a woman in her 50s whose partner had inadvertently passed it on. Both were incredibly brave and inspiring.

Wishing you much happiness and many many good days ahead Flowers

Whatsinausername10 · 31/05/2017 05:38

I am a bit younger than you, I'm now nearly 30 but I think there is still such a gap of thinking in my generation. When I was 19/20 I dated two men who told me they had caught an sti from a previous partner. Both had chlamydia which they had had cleared up with antibiotics but neither of them have followed up the diagnosis with a full sti check. Which really shocked me. I can remember the second one in particular, his reaction to me saying nothing physical would happen till he got full test including hiv was "oh gosh she wouldn't have that she wasn't like that". As if only a certain type of person could catch HIV. So many put themselves at risk because they don't have the confidence to even ask if their new partner has been tested. No one has ever asked me it's always been me asking them first.

Original poster
HIVpos · 31/05/2017 05:49

You are all very kind - and I don't feel very brave! This is just one of my was of "sorting it" and if it will stop just one other woman from getting it I will be made up

OP posts:
Original poster
HIVpos · 31/05/2017 06:07

Ciavenora - I am 57 - no typo! I've always had horrible periods, and yes they were getting sporadic and some hellishly heavy and I have used a mooncup for years. I thought the coil would sort it, and take care of any potential pregnancy issues at the same time. I now have no periods which is bliss, but also now won't know when I have gone through menopause.

Yes, I have some sweats (nothing major) and other symptoms, but then I had these when going through shitty 27 month long divorce, and they disappeared afterwards. A certain group on here were amazing on helping me through that, and they are still amazing now in their support.

Any symptoms I get now could be either stress, meno or meds related. I think the only new, meds related symptom is tingling in feet and calves, which I can cope with.

HIV care is such that they suggest things at the drop of a hat - brilliant for hypochondriacs I guess. I have had an endometrial scan offered ( re memo) a colonoscopy (low ferritin) and a 24 hr ambulatory monitor (high BP). I'm not doing any of that atm.

OP posts:
hellokittymania · 31/05/2017 06:11

Thank you so much for sharing this. Flowers

Deathraystare · 31/05/2017 10:32

I know this might sound patronising but it's important. People coming out of long relationships in their 50s and older are a very fast growing group for STIs because they don't get tested or insist on partners getting tested before new sexual partners.

Yes I read this too. Thank you HIV for posting. It must have taken some thought and guts to write it.

kittybiscuits · 31/05/2017 10:39

Thanks for posting OP. Hope you have joyful times to come Flowers

XxStefxX · 31/05/2017 10:43

Thankyou for posting OP, wishing you lots of happiness xx

Offred · 31/05/2017 11:11

Ah you are brave!!! I was diagnosed with MS in November and I totally relate to you saying you feel you are defined by the diagnosis ATM. I've been out of work, trapped for various reasons with DC for 12 years and had been working on my degree for 5 years, graduated, days later diagnosis... I also felt the new life I was starting had been stolen.

I think really these are very normal feelings when you have a diagnosis like this. You will probably have to learn who you are now, work out how you deal with things, who to tell what, when and why, worry about how others will see you, deal with new systems you have never had contact with before. It is a lot to deal with and a lot of it is in your head, is not just dealing with meds/appointments etc

Whilst I think it is totally wonderful that you are have posted here to help others like this - it is so important, I am learning the hard way, to make yourself the strong foundation on which everything else can be built. Make sure you make yourself and processing your feelings a priority right now.

I am introverted by nature and have found great benefits to withdrawing from the world to think. My processing has gone from 'I'd rather be dead than use a stick to walk at 32' - defining myself as the disability, to I am a person living with a disability in that time so progress.

Flowers
Original poster
HIVpos · 31/05/2017 11:44

Deathraystare - that is exactly why I wrote this.

Offred - that must have been a shock for you. I get what you mean about it defining you. I feel that at the moment but hope for it to lessen over time. I do think a lot, and luckily I am a positive person by nature, which helps greatly.

OP posts:
MinkowskisButterfly · 31/05/2017 11:51

I just want to say thank you for sharing. You are very brave Flowers

ALaughAMinute · 31/05/2017 12:01

Thank you for sharing. Flowers

WellWhoKnew · 31/05/2017 12:58

I watched that "The Truth about HIV" recently, and hadn't realised just how much medicine had advanced with treating it. That said it must have been a tremendous shock for you. All I knew of HIV (until the programme) was pretty much the messages from the 80s/90s - which were stark and terrifying. If that's all I knew, you're right to fear that others are also in the dark ages.

I think because I'd been married for a long time, my head has always been in the 'sex is safe' mode as long as you're in a committed, monogamous relationship. Given I'd been married to a cheating, lying, bastard I really should stop being so naive.

And despite that, I assumed that I was in the "low risk category" but clearly not! Clearly not! What a reality check your post is. Thank you ever so much for bringing it home to me.

WellWhoKnew · 31/05/2017 12:58

Oh, and best wishes to you. You're amazing.

surferjet · 31/05/2017 13:06

Hi op, many thanks for sharing your story.
May I ask a question?
Do you feel the stigma surrounding hiv is worse than the virus itself? ( if that makes sense? )
I know hiv was a death sentence 30 years ago, but it's a very treatable condition now, yet it's still very stigmatised - do you see that ever changing?

Original poster
HIVpos · 31/05/2017 13:58

Thanks WWK - means a lot xx

Surferjet - yes definitely the stigma is worse than the the virus. I actually hope to be non infectious in a matter of weeks (might even be so now after 2 weeks on the pills) and as long as I keep taking the pills will continue to be so - could even have unprotected sex without passing it on.

I will give an example - it happened just now. My boss phoned and asked me to come into work. She is also a friend about my age. I do not actually have to disclose to my boss (regarded as discrimination) but considering the clinic appointments I sort of told her, in a roundabout way. She said, when I said one of the worst STIs, "not the A one?". Her reaction is exactly the one I would have had if someone had told me, and she will be somebody else I will have to educate. I have directed her to the BBC1 documentary "Living with HIV" as I have others.

Now my DDs think differently. It is not such a big stigma. It's just an STI, and shitty to get at my age. for that reason, if this is how the younger generation see it, then hopefully the stigma will reduce - just not for my age groups unless there is more awareness

OP posts:
surferjet · 31/05/2017 14:02

Flowers much love to you op.
Thank you for replying.