Lydia
Lydia had recurrent thrush for one year. She has other vulva pain conditions that made it difficult to recognise her symptoms. After multiple tests and treatments, Lydia tested positive for a rare type of thrush that is resistant to typical medications. Lydia found support in online communities and is testing negative for thrush.
Lydia (she/her) is a straight woman. She works as an assistant practitioner. Her background is white British.
More about me...
Lydia had recurrent thrush for about a year. She lives with vulvodynia and vulva dermatitis. Lydia says that she is “uncomfortable anyway” and therefore it was difficult for her to identify thrush. During a dermatology appointment for her other conditions, a swab was taken and returned positive for thrush. Lydia said that she is “so used” to having diagnoses and labels that it “goes straight through you”, but that she also felt frustrated to have another thing to cope with and resolve.
Lydia says that she has a “lack of trust” with primary care professionals to know about thrush because in her experience they have less training in vulval pain. Once while getting a swab, Lydia explained to the nurse that she had vulvodynia. The nurse brushed Lydia off, and when Lydia inquired if she knew what vulvodynia was, she did not which violated Lydia’s trust. When visiting the GP, Lydia prefers self-testing, but she is not always given this option.
Four years ago, Lydia put together a hospital team to manage her vulval health conditions including a dermatologist, gynaecologist, pain specialist and physiotherapist. Lydia rarely sees her GP as she found them less helpful, but acknowledges that it was a GP who referred her to the hospital to get support. She acknowledges that she had to fight to get the team together.
Recurrent thrush impacted Lydia’s ability to continue other healthcare treatments. Her physiotherapist would not work with her during this time as she worried about teaching the body and brain to tolerate the thrush. However, Lydia’s psychosexual therapist continued to work with her.
For treatment, Lydia was prescribed antifungal medication (fluconazole) for a few weeks. When this was not effective, she was given another course.
The dermatologist tested which type of thrush was affecting Lydia. However, the laboratory did not follow instructions the first time. Lydia did another swab and discovered she had a rarer type of thrush (Candida Glabrata) that fluconazole is unable to treat. Lydia was then prescribed nystatin pessaries for two weeks and then a course of treatment for six months. Lydia found the pessaries difficult to use as they flared up her vulvodynia and did not come with an applicator. Lydia missed two weeks of the six-month treatment as the pessaries caused pain.
Lydia’s partner was also treated with fluconazole, and she coached her partner through his appointment to not get “fobbed off” and be given the nystatin cream.
After the six-month course, Lydia tested negative for thrush which was a “big relief”. When Lydia asked if she should continue testing for thrush, as the symptoms overlap with her other vulva pain conditions, she was told no. Despite her negative test, Lydia worries about it coming back.
To manage recurrent thrush and her other vulva health conditions, Lydia washes with an emollient, wears lose clothing, takes daily probiotics and uses icepacks in her underwear when symptomatic. She also finds antihistamines helpful to take every day. When she was younger, she tried using yogurt and salt baths. She has also used steroid cream to manage vulval dermatitis which causes itchiness as well.
Lydia has found support online and runs social media pages and a group chat for people with vulvodynia where they also discuss thrush. Her mum has also been very supportive throughout the entire experience. Lydia found there was a lack of in-person support groups, and she had to travel a long way to find one which was expensive. While at the support group. Lydia found that the majority of the support group participants were older than her which made it hard to relate.
Lydia advises healthcare professionals to let patients perform their own swabs, discuss the different types of thrush and medication options, and to not be afraid to ask patients clarifying questions. She wants other patients to not be afraid to talk about recurrent thrush because “the more noise we make- the more stigma we will break”.
Lydia took her own swab after learning that the nurse was unfamiliar with vulvovaginal pain conditions.
Lydia took her own swab after learning that the nurse was unfamiliar with vulvovaginal pain conditions.
Personally, my own GP during this period when I went in to have a thrush test, I think maybe it was one of the times that they hadn’t given me my... they hadn’t given me my own kit, so I had gone in to see a nurse, I arrived and I started speaking to the nurse and I said during the initial conversation, “I'd like you to know that I have vulvodynia, so please can you just be aware of that.” Instead of saying, ‘can you talk more about that?’ or, ‘I don't know what that is,’ the nurse sort of looked at me and said, “Oh, OK:” I could tell something was up, so when I got onto the bed in the GP room, I just... so... so I just knew that something was a little bit up, so I just said to her...you know, which I felt quite proud of, I just said, “Do you... do you know what I've just said?” “Er, er, is it something to do with the vagina maybe?” Now for me I think that is absolute negligence. You were about to touch me with a swab and you don't understand what I have just said to you – it’s extremely negligent. I'm... I don't... I'm an open person and, yes, that professional might not know that, but I would much rather you say to me, ‘I don't know what that is, would you mind just taking the time to explain that to me?’ I will never judge someone with that. I'm fully aware of the fact that my condition is not something that’s talked about, it’s got a lot of stigma around, it’s very under-researched. As much as I don't like that, I understand that that’s the case, and I'm happy to help that and change that as much possible. But if you... if you just pretend to know what I've said, but you don't, then that’s not fair, and that’s not doing your job right as a professional.
So, I then explained to her what it... what it was, and I also then did the swab; I took the swab and I did it myself. So, I think that’s an experience that is really worrying, because number one) it’s worrying that you were about to do something that involves a woman’s vagina and vulva and you don't know about vulval pain conditions. And number two) you would rather say that you know to avoid embarrassment or an issue or you just want to get the appointment done, or that sort of thing.
After learning she had an unusual strain of thrush; Lydia was frustrated for the lost time and ineffective treatment she had been prescribed.
After learning she had an unusual strain of thrush; Lydia was frustrated for the lost time and ineffective treatment she had been prescribed.
Yeah, so I believe I did this... this one at home and I then sent it off and they did the... they did the test and they found out that I have quite a rare type of thrush and that fluconazole it isn’t able, or, and never was able to treat it. So, I think that was difficult at the time because I had taken quite a lot of fluconazole, so when you sort of were told that actually none of that was ever going to make any difference – it’s quite a difficult thing to hear really, because it’s time and especially when you...like me when you've got a lot of other health problems.
Lydia explained how she used emollients as a soap substitute and barrier cream.
Lydia explained how she used emollients as a soap substitute and barrier cream.
Around the vulva area I've always been quite sensitive and always avoided any sort of soaps, so that’s sort of when I... when I was younger. I... now I wash with the Hydromol ointment that I've washed with for years, probably six, seven years now I've washed with that and I find that that helps me, and there’s lots of things I do in order to reduce irritations: so I wear cotton knickers, a lot of them being white; I don't have any baths; I use Hydromol, I put Hydromol on first as a sort of ...to act as a barrier before I wash my hair, and soap is going down my body.
Lydia highlighted the key role her mum played in offering support.
Lydia highlighted the key role her mum played in offering support.
Yeah, so I haven't... my mum is my main... I would say my mum has very much been my main support system with all of my health problems. She’s... especially when I was a bit younger, she came to all my appointments. I'll talk to her about everything. As soon as I sort of have a... have a hospital appointment, when I get out, I'm usually sending her a voice note – this is what’s happened. When I've wanted to travel places to access support, she’s travelled with me. She’s just my main support system in that way, and yeah, I speak with her about it a lot.
Lydia encouraged healthcare professionals to recommend further support for patients with recurrent thrush.
Lydia encouraged healthcare professionals to recommend further support for patients with recurrent thrush.
Provide information about it in your GP surg... I'd love, you know, to see some leaflets. I mean this is something I really have had on my mind to do myself really and talk to my surgery about it, but I don't see any leaflets in my surgery about vulval pain or thrush: have something on... have something on the wall or something online on the website that you can access. It would be great if... if health professionals could refer to things like online support groups or research programmes or that sort of thing. I think... I think that’s a kind of a big shame as well, because me personally I would... I am always up for anything like that, but yet every time I go to my hospital appointment, it’s me telling my professionals what I'm doing, what I found. So I think a lot of people would actually be interested in doing studies like this one, but they don't know anything about it, they just don't know what’s out there, and it would be amazing if kind of health professionals could know more about that in order to kind of provide information really.