Recurring BV - it's really getting me down now

[MilliesMum1]

Morning all, LONG POST ALERT !!
I've been suffering from BV for years now, and it appears to be getting more frequent now, to the point that it's really getting me down. I've had it 3 times this year already.
I'm 62, and went straight into menopause aged 40 after having had my ovaries removed as part of treatment for oestrogen dependent Breast Cancer.

So I can't have traditional HRT. The most the GP would prescribe was Vagifem (the mini tablets you pop up with an applicator) but they've now told me to stop taking this as the advice for ex Breast Cancer patients is that it's not safe any longer.
She's now prescribed YES vaginal moisturiser which I've been using for 2 weeks but I've just started another bout of BV so I'm not that hopeful of the moisturizer being that helpful.
Whenever I have a swab or pee test at the GP for BV it's always negative until about 2 weeks after symptoms start, by which time the pain is unbearable.
Metronidazole makes me feel shit but is about the only thing that clears it. I've had to buy this myself online as the GP wouldn't prescribe it without a positive test result (although lately they've actually taken my word for my symptoms).
My symptoms aren't the classic ones either - no discharge or smell, but grossly swollen abdomen, "bubbly" bloated feeling, severe (and sudden) lower back pain, period type cramps, nausea, increased peeing, diarrhoea and generally feeling weepy and worthless.

I've been married for 38 years and we still have aex, but the episodes aren't always linked to sexual activity - the last 2 came out of the blue when there'd been no activity for at least a month prior.
Sorry for the long post but I feel so down, worthless, and as (perhaps worst of all) that I'm letting my hubby down, as I don't feel "clean" - we're very close and loving as a couple (we've been through a lot together) but I'm scared now about sex in case it sets off another episode.
It usually takes at least 10 days, and often 2 weeks to clear up (including the 7 days of metronidazole).
I haven't tried any food/vitamin supplements, but am open to literally anything you've tried.
I'd also love to hear from anyone who has similar symptoms/experience

There’s some new research which shows men carry the bacteria that sets off B.V. - so might your partner need treating?

Your symptoms are totally different to what I had when I was getting recurring BV. I did have the bubbly abdomen thing, but then it would be followed by a foamy smelly discharge.
Have you tried boric acid pessaries? After trying everything, that’s what cleared it for me. Happy to give more info if needed.

Thanks for that. I've read a few other people suggesting those too. Are they painful to use ? Where do you get them ? Can you use them long term ?

X

Thanks for that, yes I've read a few reports about that too. Thing is, I can get episodes of it when we've not had sex for months, so I'm not convinced :/

Hi. I didn’t experience pain with them. I got empty vegetarian capsules, a jar of pure coconut oil, and food grade boric acid. Filled the capsules myself with 2/3 boric acid and 1/3 coconut oil to moisturise. This also prevents any spotting. I inserted a capsule into the vagina once or twice a day for about a week, and after that I would just use them for a couple of days if I sensed a return of the symptoms. After a while I stopped needing them. It was more effective than anything else I’d tried, including metronidazole and metrogel.
I think I got the boric acid from Amazon, although I believe they don’t sell it anymore.

Thanks so much for this. Practical help is what I'm after !
X

You could also try fluomizin as this is also a strong antiseptic treatment like boric acid. You can get them from online pharmacy services. You could also ask NHS GP but I think these are more expensive so they may not prescribe as antibiotics are cheaper.

If you do go down this route take oral probiotics at the same time e.g. Optibac for women.

I hope you find a solution. It sounds horrible. Xxxx

Hi, I get these exact symptoms too, did you figure this out, can you dm me?

Sorry to hear you're getting these symptoms too. I've had a couple more long chats with my GP, who's new and is really sympathetic. He's now prescribed fluomazin (dequalinium chloride) instead of metronidazole, although I've yet to use it. He's also prescribed Hyalofemme vaginal moisturiser instead of Vagifem. It's not an HRT and he's happy for me to use it as often as I like, and also as a lube for sex. I've been using it initially every night and then switched to every other night. It comes with an applicator which I rinse out with boiling water each time after use. The gel isn't runny and I have had any dribbles with it.
I really hope you get some answers and relief from it soon - it's the most miserable thing. X

https://www.superdrug.com/health/womens-intimate-health-care/bacterial-vaginosis/balance-activ-bv-gel-7-x-5ml/p/512533

add these to the list of things to try.
They come in a little tube that you squeeze in. They work brilliantly for me.

Thank you! You’re the only other person I e ever seen get the same symptoms as me from it, I’ve had gps tell me it’s not usually linked to stomach pain, needing to pee etc etc.

Just wondering why we suffer so badly with it when other people get mild symptoms? Not sure if we will ever get that answer

Thanks for the suggestion - I've used those initially before it became more of a problem. I do find them very dribble though even at night time. X

I have only used them at night with a pad on. I hope you find a solution.
I wonder if probiotics would help. I took a cool shallow bath with apple cider vinegar (diluted)
When I was desperate before and it definitely helped.

How are your symptoms? I had what I think was BV( but no smell) for the first time last year aged 53. Loads of watery discharge was the main symptom and sore vulva. It started after a weekend away with DH with more than usual sexual activity. I got rid of it with those gel pessaries ( bio something) but then 4 days later it would return. Eventually after much Googling I decided it was a hormonal shift changing my ph so I got vaginal oestrogen and it fixed it after 6 weeks of on and off with the bio gels. Has kept it at bay since. I am NOT on other hrt and my understanding is that vaginal oestrogen is so low dose that it doesn’t affect breast cancer risk.

Hi, I don't want to jinx anything, but the Hyalofemme seems to be helping, although I do find it makes things feel very warm (almost but not quite a burning sensation) every time I use it - even though the guide notes say that should stop after the first few applications.
The GP won't entertain the idea of local/topical HRT as he maintains that the risk is not worth it, so that's where I am for now.
Sorry to hear you've had it too, but glad you've managed to get some relief. It's frustrating that we have to do so much research ourselves, and have to really push and persist before the medics will listen and take us seriously
X

Ah that’s good. It’s been gone 18 months now so I do think it was the estriol cream. I think your gp is behind the times.Even some systemic hrt can even be taken by bc survivors. The vaginal cream is only absorbed locally and is not just good for ph but also for avoiding atrophy. I use it twice a week after initial daily dose. Good luck!

I was going to agree about the estriol. I bought it from an online pharmacy.