Nysha
Nysha has suffered from recurrent thrush throughout her life. The condition has impacted her mental health and potential relationships. Online communities have helped Nysha feel confident speaking out about recurrent thrush.
Nysha (she/her) is a straight woman who is currently single. She is a retired teacher. Her ethnic background is Black Caribbean.
More about me...
Nysha has experienced recurrent thrush throughout her life, and found that it has become worse as she has aged. She feels that her body now “clings to infection”. When she turned 37, she had a coil inserted and her symptoms worsened for a year. She continues to experience recurrent thrush on a monthly basis.
Recurrent thrush impacts Nysha’s mental health, and increases her depression and anxiety. She says it knocks her confidence, and she feels the recurrence is “debilitating” and a “never-ending cycle of woe”. Her life was “put on hold” due to recurrent thrush as it negatively impacts her romantic relationships and sex life. She now worries about this lost time that she could have potentially spent meeting someone and starting a family. While symptomatic, she feels irritable and unable to socialise. Nysha often feels that other people do not understand. She has felt helpless and like recurrent thrush “took over her whole life”.
Nysha has sought out medical attention for her thrush. She finds it helpful when healthcare professionals are direct, but unhelpful when they lack empathy. She lives with other chronic health conditions like fibromyalgia and asthma, and found that recurrent thrush is not treated with the same level of respect as other health conditions. Her interactions with healthcare professionals were frustrating as she felt she had to keep going back without getting answers or helpful information.
In the past, Nysha had a swab taken which confirmed thrush, but also showed BV.These test results were initially lost and not reported to her for months.
A negative experience with a Consultant who was cold and dismissive led her to switch hospitals. However, she has had positive experiences with her GP practice’s advanced nurse practitioner who is always understanding and has helped her make treatment plans. She also uses the GP’s in-house pharmacist and feels comfortable asking for medication.
In terms of treatment, Nysha has found that pessaries in combination with creams have brought relief. Other self-management strategies include wearing cotton underwear, and not over-washing. She used to wash intimately but has stopped after learning it could potentially trigger thrush. While she has not tried oral medications, she has a friend who has and she would be open to trying them. Nysha now seeks out antifungal treatment before taking antibiotics. In her latest episode of recurrent thrush, she took antibiotics for a kidney infection and found that the thrush was also in her back passage which caused her distress. Nysha is eager to know what she can do to help with the condition and is unsure why it won’t go away.
Nysha has found support through online communities. These communities taught her about vulva anatomy and proper care. After feeling that GPs did not provide enough information, it was through her own online research that Nysha came to identify with having recurrent thrush. While thrush used to make her feel “dirty”, she now uses her experience to educate and empower others like her nieces and her mother. She encourages other patients to speak up and not be ashamed and for healthcare practitioners to be empathetic and truly listen.
Nysha said that she became very used to having swabs taken.
Nysha said that she became very used to having swabs taken.
Yeah, it was... I didn't... [sighs] I think at that... at this... because at that point I was used to having like smears done and things. I think... going off, side topic, I think around the age of 30 I just thought, ‘you know what, these are things that are going to have to happen, as a woman, these are things that I'm going to go through, and yeah, they can be uncomfortable but what you can do is just try and relax and just do it,’ but at the point where they were doing the swabs, you know you... I was just so desperate, I didn't care, I was like, ‘do what you've got to do, ’didn't bat an eyelid, and now I don't even... it doesn't faze me like having anyone... well, that sounds a bit random, but you know going for internal... it doesn't bother me, just if you've got to do it that’s fine, I'm not prudish about it anymore.
Nysha said recurrent thrush was a “never-ending cycle of woe”, which added to her anxiety and depression.
Nysha said recurrent thrush was a “never-ending cycle of woe”, which added to her anxiety and depression.
It also brought up my depression; I felt so low. I also... I'm not an optimist and I'm not a pessimist, I'm a realist, and I was... and that thinking of that I have of like, ‘OK, in a couple of weeks I'm going to be fine, I'm going to be over this part and I'm going to look back and reflect on it, learn from it, but move forward,’ it just felt like I was in a never-ending cycle of woe. Like I said to you, I stopped dating, I didn't want to be around or have any sort of... and sort of sexual contact with... with guys or anything, I... so I just literally shutdown and stopped going out as well because I was so uncomfortable at times, and trying to explain to people that... at the time it was just... I didn't want to go into why I was feeling so uncomfortable.
Nysha explained that a lack of sexual education meant that she only learned about her anatomy later in life.
Nysha explained that a lack of sexual education meant that she only learned about her anatomy later in life.
Because I went to a Catholic school, so we didn't even learn about sexual education, we got taught the life cycle of frog, I don't know how that relates to a... you know there was never anyone talking to us about periods, and like you say, like thrush and things like that, these were never things... maybe it’s probably because of the time I was growing up, I don't know, but I know they don't really talk about it that much now and it... it’s really important that these conversations start from a young age, so young women, girls, know what to expect. Also, like people that are transitioning and you know are aware exactly what can happen and various other things.
Nysha said that in their Caribbean family, anything “below the neck” was considered a taboo subject.
Nysha said that in their Caribbean family, anything “below the neck” was considered a taboo subject.
In the culture that I'm from, my family are Caribbean, so anything below the neck is considered like a taboo subject, and it was trying to understand what was going on, and so I'd reach out to friends and go, “This is what’s going on, I'm so embarrassed,” I was really, really embarrassed, my friends were like, “You've got nothing to be embarrassed about, it happens to me too.” And that kind of then started a conversation between us all of what was going on in relation to our vaginas, vulvas, everything, just understanding why our body’s react the same, thinking... I think it was taking away the stigma that it’s just you and that... also like I said, I also had this feeling that I'm not a dirty per... that was all... all that was in my head was, ‘I'm not a dirty person, why does this keep happening to me?’
Nysha wanted more explanation from healthcare professionals.
Nysha wanted more explanation from healthcare professionals.
Yeah, I’m at a different hospital, but I... I had to keep going back to my ANP because she was the only one that seemed to listen and understand. I think... [sighs] I don’t want to sound like I’m needy, it wasn’t that... it was just that you get to a point where you’re just so frustrated because you’re trying to do all the right things and no one is explaining anything to you, and it’s just... I’m just like, ‘can you just tell me what we can do,’ and I don’t mind taking ownership of my health, that’s not a problem, ‘but what I need you to do, as the professional, is explain and try and help me get to that point where I don’t have to keep coming back to you for the... for the same thing.’
Nysha was unsure why the thrush would not “shift” despite her lifestyle changes.
Nysha was unsure why the thrush would not “shift” despite her lifestyle changes.
It wouldn't shift it and I was thinking, ‘why is it still holding on to it when we're trying to treat it?’ and, like I said, in my head I'm thinking ‘I'm doing everything I can, I've switched and I've literally stopped wearing thongs and anything like that’, and just went to good old practical, as we like to call them ‘granny panties’ and just kept it simple, I thought, ‘well, I'm not using any soap in any intimate areas, I'm not using...’ Femfresh, that’s what I was thinking of, ‘I'm not using the Femfresh wash anymore, I'm simply using water, I'm changing my towel a lot more frequently than I was,’ because I was just trying to do as much as I could just to try and eliminate it.
Nysha found pessaries helpful.
Nysha found pessaries helpful.
It’s always been the... the main... the one thing that’s always helped is the pessary for me, the... that you take at night-time, I found that really useful. Initially the pessary on its own was... that’s all I needed, but over time I've... I now know that I need the cream as well to continue on with, just to make sure it completely goes, without that then I'm having to go back and say, “You need to give me the tablet and the cream or else I'm going to be back here.” Like I said I've tried like things like Vagisil, is it Vagisil? Yeah, I tried Vagisil which was OK for a little while but it doesn't completely get rid of it. I don't... I don't... Canesten or whatever the... sorry, Canesten’s the only brand name I know, that... the pessary and the cream for me are the two things that will always work, go hand in hand and that’s what I found useful.
Nysha said that social media accounts helped her learn about her anatomy and vulval health.
Nysha said that social media accounts helped her learn about her anatomy and vulval health.
But it’s only this year that I found online groups, like I said, Eve Appeal, Medical Herstory, and it’s seeing that... like see the information. Like I didn't... fully... I said even though I... please I don't... I don't want this to come across wrong and I'm not trying to be offensive to anyone, I was born a female and so you kind of take for granted that you know your body and your anatomy, but not knowing the vagina, like the difference between the vagina and vulva, and all that not knowing the difference, it was like an online community taught me that.
Nysha urged healthcare professionals to actively listen to patients.
Nysha urged healthcare professionals to actively listen to patients.
Listen to what we're saying. We're not saying this because it’s a mild inconvenience, we're saying it because it’s... it’s affecting a lot of things in our lives. Listen to what we're saying. If you can, try and be empathetic, but the key thing is to listen and take on board what is being said to you, and also to be mindful that it takes a lot for some people to come forward and say, ‘well, this is an issue,’ so when they come forward not to dismiss them, just listen, and like... the key... the one thing I'd say is to listen, listen and listen. Where possible probe as well, ask a bit more questions, I know that’s difficult for certain people because they don't want to explain... but go back to your training and like what... trying to get the root of the issue, and also please don't say, ‘well, what do you want us to do?’ or have... because we're coming to you asking you to help us: if we knew what we needed to get done, we would do it ourselves.