Ella

Age at interview: 50

Brief Outline:

Ella has experienced two prolonged phases of recurrent thrush – the first during their 20s, and the second ongoing since having other gynaecological health problems in the last 10 years. They have found online communities helpful for learning about self-management strategies which seem to help.

Background:

Ella is a bisexual non-binary person, is currently in a relationship and has a child who is 20 years old. Ella is on sick leave from work at the moment, and their background is white British.

More about me...

Ella has experienced two phases of recurrent thrush in their life. The first was during their 20s when they experienced thrush a couple of times a year. The second was within the last 10 years, during which time they have had several other gynaecological health issues including endometriosis and a full hysterectomy in 2016 which led to surgical menopause and HRT. In March 2022, Ella was diagnosed with lichen sclerosus, a chronic inflammatory skin condition, alongside thrush.

Ella’s thrush symptoms include itching, soreness, “little tears”, and stinging. This led them to feel frustrated and to avoid sex. They described a psychological impact from recurrent thrush as it leads them to be more “irritable, grumpy, and cross”.

When Ella first began having problems with thrush 30 years ago, it was not common to have swabs tested at labs. They feel that most patients were told it was thrush and to “go away and get on with it”. Whilst Ella feels that the GPs they have seen more recently still hold attitudes of “it’s just thrush” and “here’s the medication, go away”, they have found nurses more sympathetic and validating on the whole.

Currently, Ella visits the chemist to get medication over the counter for thrush and will only see a GP when symptoms get “too bad”. Ella has used the eConsult service to get prescriptions which, whilst offering “more autonomy”, can feel “quite laborious” - especially as Ella estimates they have submitted “50 to 100 [requests] over the last couple of years”. Further, the consultation forms ask for pictures which is not feasible, but without them, Ella worries it is difficult to make an appropriate diagnosis. In terms of treatment, Ella has tried pessaries and creams such as clotrimazole which offer temporary relief but as a “band-aid” solution. They have also used lidocaine to numb particularly painful areas. Ella had not heard of oral antifungal options.

As they have gotten older, Ella has recognised that their thrush symptoms are “cyclical” and notices early warning signs. In their 20s, Ella remembers not taking the best care of themself and not knowing how to tend to recurrent thrush. Currently, self-care feels “like a job” as it affects their daily routine. For self-management, Ella checks their vulva in a mirror every day to notice changes. Other self-care strategies include using diluted organic apple cider vinegar to wash themselves after going to the toilet. They try to reduce sugars in their diet and consume probiotic foods like kefir and kombucha. Ella also no longer wears pants or underwear, but, as a non-binary person, not wearing trousers and instead wearing dresses and skirts feels “inauthentic” to Ella. Regarding upcoming appointments, Ella has asked the doctor for a candida test but was refused. They have an ongoing referral to a vulval health specialist but, because of waiting lists, knows that they may not be seen for another year.

Ella has found community in social media groups that share “woman’s wisdom” and offer a “smorgasbord of little tools and tricks” for vulval and vaginal health. These groups have been a “lifeline” for Ella. Ella also visited in-person support groups for vulva pain where they felt supported. Ella stresses to others that recurrent thrush is not their fault, and encourages healthcare professionals to take this condition seriously and not “brush it off”.

Ella experienced improvements from hormone replacement therapy (HRT) to their vulval skin which reduced the problems with thrush. They wondered what the situation might be like in older age too.

I have HRT twice a week and I notice a difference before I take my next dose, you know there’s all sorts of subtle differences, and it feels like the... when... you know it feels like the thrush is more susceptible when that flesh is more kind of wrinkled, smaller, tighter, got more folds in the skin I guess, and what I notice is the kind of plumper and better sort of moisturised it is, the less folds it has, I think the less it seems to be getting infections.

So, it kind of feels like that, and it just feels like I'm going to be working with that forever, and presumably at different points as my skin changes again as I get older, then I guess it’ll change again. I don't know if older women suffer with thrush. Like I suppose I think of it as a young woman’s problem, but I'm 51 now, so obviously it’s not quite true.

Ella found it could be difficult to be honest with others about the emotional impact of thrush.

So, I'm also interested in when you've got any kind of dis-ease within such an intimate part of your body, I'm also quite interesting in, ‘well, what’s the effect psychologically of that as well,’ because it’s not then something you can just openly talk to your friends about. You know and your friends say, ‘how are you?’ Like 90% of you might be fine, but you've got this 10% that’s burning, itching, making... you know it doesn't... it doesn't ever... you know you can't stop thinking about it, whatever, and I'm also interested in that whole kind of... the mental health side of it really because I think it’s... I think it... and I think it’s really tough to live with actually all of this.

I quite often think, ‘oh God, wouldn't a broken wrist be easier?’ you know on some level people would be like, ‘oh, that looks sore and how... and where did it happen?’ you know you have some kind of conversation, but there’s no acknowledgement of a burning sensation down there because you... unless you're with a close buddy, you're just not going to bring it up, so you're just standing there talking to somebody with this... all this pain going on, which... [laughs] you know and it’s like you... your dishonouring your experience you know most the... most of the day you're in the public domain, you're dishonouring your experience, and I think that has a really big effect on your psychology you know because you're not able to kind of own it, you know and just be... be like, yeah, it’s shit, but it’s OK, but I... you know but it’s... I'd rather tell people, but obviously you have to be very mindful of who you tell and when and all of that, you know.

Ella explained how talking openly about recurrent thrush would help explain what was going on in her life to others.

I think that hiding and shame is a... is not good for anybody.

You know give us a kind of... give us an environment where we feel we can just say, ‘I don’t want to go on about it, but me bits are sore and I’m... you know I haven’t slept again and I’m just hacked off,’ you know just to be able to at least bring it into the room rather than this constant trying to leave everything outside the door, because then it means you... your... there’s less and less of you, you know, that you’re more disconnected from yourself, and I think that’s... that’s so bad for mental health and for ability to be present for whatever it is you’re trying to deal... you know work, with a project: how can you can you be fully present if you’ve had to deny this experience, that experience, and the other experience and leave them outside the door, you know because you’ve got all this effort trying to just keep them outside the door because you’re burning and you want to just say to someone, ‘for God’s sake, make this stop,’ you know and it’s... you can’t... it’s too much conflict, it’s conflict, it’s that conflict of, ‘I’m sore but I can’t tell you I’m sore.’

Ella emphasised the importance of receiving sympathy in healthcare appointments.

Yeah, so I think generally I'd say... generally I would say that the local doctors were more sort of, ‘oh, it’s just thrush,’ you know, ‘here’s the medication, go away,’ kind of thing, where I would have said that the nurses that I saw, usually within the doctor’s practice, seem to have more of a sympathetic attitude, and actually I think I've now come to realise that sympathy with something like... like recurrent thrush is actually really important for me, because apart from anything else I needed that validation that, ‘yes, I am actually suffering enough for it to need treatment and help,’ because there’s so much of the... in my experience, there’s so much of the female experience that is just, ‘get on with it,’ you know, ‘take some medication and get on with it.

Ella found remote care was difficult for conditions that affect the genitals.

And also you know they ask for photographs or imagery of the relevant area, and obviously when it’s genital stuff, you can't send that, and yet at the same time that’s pretty crucial for appropriate diagnosis, and I understand why we can't send it, and I don't particularly want to send it, but at the same time it’s a bit like, ‘OK, so you're giving me the stuff and you haven't got a clue what’s going on, you haven't actually seen what the state of my skin or whatever,’ so yeah, it’s a mixed bag I'd say, but I understand, and I've got lots of friends who are GPs here and I understand why they've gone down that route and you know it’s... it’s kind of OK.

Ella found clothing adjustments helped physically but were difficult emotionally.

So, I use a lot of preventative stuff: I think my main kind of daily stuff that I do to prevent thrush coming on is that I now no longer wear pants or underwear at all, and I no longer wear trousers at all, which for me is really weird. I've been very tomboy-ish all my life, so it’s been a very painful thing to realise that I don't really have a choice, because even with my bamboo underwear, which I've been using for years, I still have... I still get it, I still get thrush. So, I just decided to abandon underwear all together on the basis that we know that moulds, yeasts, whatever, like warm, sweaty, dark, you know all that, so I just... I'm trying to go with quite... quite common-sense kind of attitude of, ‘right, abandon the underwear,’ and spent a fortune on dresses and skirts, I feel like... I don't feel like myself in dresses and skirts but I feel like it’s that or the... the suffering really, so that’s kind of... those are some of my major changes that I've done.

Ella found that applying apple cider vinegar topically helped reduce symptoms.

And also I use raw apple cider vinegar, organic apple cider vinegar which has... if you've not heard of it, it’s got something called the ‘mother’ in it, which is another... the mother is part of what ferments the vinegar initially, so that’s another kind of live bacteria, and I use that diluted, and I have a cup of that next to my toilet, so every time I use the toilet I then kind of wash with that, I kind of dab with that to just keep the area super, super clean, and that’s very dilute, that’s probably like, I don't know, a teaspoon or two teaspoons full in a normal size mug of kind of hot water and then I let that cool down. That, I think that makes a really big difference.

So yeah, I would... I would say that the... the organic apple cider vinegar with the mother, which is the live bacteria, I would say that is probably my most helpful daily tool that I use that I couldn't imagine life without, and I probably wouldn't have tried it if I hadn’t heard it through sort of women’s wisdom in the past and then had it corroborated by the... the Facebook group, you know so many women saying... for some of them, they found that really helpful, I thought, ‘well it’s worth... it’s so worth a try,’ isn't it?

Ella said online support groups were a “lifeline” and valued the sense of connection and invaluable advice.

Anyway, and that was the first time I actually got to sort of live chat with other women, there was only five of us, and it was really... the women did just... you know which is unlike... it’s not usual for British women, they did just dive straight in and were just very kind of like, ‘this is what’s happening,’ and I when I mentioned clothes, you know, another woman in the group was like, “Oh my God, yes, I've... I've always worn trousers, it drives me up the wall, I have to wear skirts and dresses now,” I think that what the doctor gives is like... it feels like five percent and what I’m getting in these groups is... the rest is the 95, which is how it is, I'm just super grateful and I'm... you know so I talk about it, so... but anyway, but it’s... it’s... it’s good to... it’s good to... it’s really important to have those groups; they're a lifeline.

Ella encouraged speaking openly about recurrent thrush and turning to others for advice.

You know and I wouldn't... I wouldn't hide it totally from people, obviously choose who you speak to but... you know it’s... I think when we hide these things, I don't think that really helps, I think it is better to just kind of own up to the soreness and see what can be done and see what could be done in the future to make it come back less. So, it’s kind of like that thing of, yes, it may be a part of life for I guess a lot of people, I don't know what the percentages are, but actually there are a bunch of things you can do to make it happen less, or less kind of viciously, you know? Yeah, that’s enough.