Melanie

Age at interview: 52

Brief Outline:

Melanie experiences urinary tract infections (UTIs) associated with menopause and vaginal atrophy. She has found it difficult to receive consistent medical advice. Melanie is currently waiting to see if bladder instillations and a long-term antibiotic regimen help with her symptoms.

Background:

Melanie owns and runs a small business. She has a 12-year-old son. She is currently single but has been starting to date. She is White British.

Condition: UTI

More about me...

During her late 40s, Melanie started experiencing menopausal symptoms. She started having hot flushes and night sweats but gradually became a “production line of symptoms”. Initially, Melanie opposed hormone replacement therapy (HRT) because she thought it was “bad and scary and dangerous”. She continued to live with the symptoms for three years before seeking hormonal treatment. Melanie felt that menopause “really brought me to my knees” and regrets not going on HRT sooner.

As a result of her hormonal changes, Melanie developed vaginal atrophy, which placed her at higher risk for urinary tract infections (UTIs). She began to have frequent UTIs, which created frequent urges to urinate and pelvic pain. Her symptoms often flared up after taking a bath or going into a swimming pool. Melanie’s GP prescribed antibiotics, which Melanie needed every few months. Eventually, Melanie contracted a UTI that lasted for 14 weeks. She went to A&E but was only sent away with painkillers. Melanie saw a specialist privately, who confirmed that she had an infection via a broth culture test. The specialist recommended garlic tablets, D-Mannose, and long-term antibiotics. Melanie found this regimen successful but had to stop paying for private prescriptions because of financial strain.

Melanie continued to seek treatment through the NHS but received contradictory diagnoses. Melanie was diagnosed with interstitial cystitis on a phone consultation, but she considered this to be a guess since the doctor never examined her. This doctor prescribed bladder instillations, which involved having hyaluronic acid inserted into the bladder. Melanie is currently waiting to see if these improve her symptoms. Melanie also spoke with a pelvic health physiotherapist who told her that she may have an overly tight pelvic floor and should do exercises to loosen it. Through her GP, she received a smaller dosage of the private specialist’s long-term antibiotic regimen. She is currently managing her symptoms and pursuing these three strands of care offered.

Melanie’s symptoms of menopause have been “debilitating and soul destroying and confidence sapping”. She finds that they make work and daily life more challenging and that she constantly needs to “negotiate” with her body. Melanie is currently in the early stages of a romantic relationship but worries that her vaginal atrophy may make it difficult to engage in sexual activity. She has found avoiding water to be a “real source of sadness”, as she had previously found swimming to be therapeutic and felt she missed “special moments” on holidays with her son. Lifestyle additions like mindfulness and walking have been helpful with managing her symptoms and maintaining her mental health.

Melanie has been struck by the lack of medical knowledge and concern around menopause and its associated medical issues. When she was seeking care, Melanie felt dismissed because of her age. She has found that women become “invisible” once they are no longer considered young and beautiful and that older women are forced to “suffer in silence”. Melanie is glad to see people discuss menopause and women’s health. She hopes that healthcare providers will display more kindness in the future and consider menopause a crucial medical concern. To women with similar conditions, Melanie encourages joining social media groups and not taking medical advice “without questioning”. 

Melanie wishes she had known that menopause can contribute to urogynaecology conditions so that she could have sought help earlier.

I’ve been perimenopausal for five years and vaginal issues have been I don’t know, I’m quite sure how to quantify it, probably three years in maybe longer, longer I think, yeah I just wish I’d known more. I wish l because I think what my body was saying slowly was, you know, I need help particularly for the vagina vulva, it was slowly not functioning more and more, you know, it’s almost like more and more clues have been given to me and I haven’t, I haven’t responded to them, I haven’t taken heed and therefore I’m in quite a sorry state now, you know, it’s like an engine that’s just coming to an end, coming to a stop, to a halt more and more and you’re just not giving it what it needs.
 
Right.
 
You know, be it water or oil or whatever, what you’re not listening to it and you’re just, you’re just really taking it for granted and expecting it to work but also, you’re suffering in silence, you know, you’re suffering in silence.

 

Melanie experiences UTIs and has vaginal atrophy. She is starting a new relationship after menopause, but says “I don’t know even know how to begin to have that conversation”.

I’m sort of might be starting a relationship, well I’m seeing somebody. It’s very, very early days and I don’t know even know how to begin to have that conversation with them and say I’d like, I love the idea of starting it with, “Well you see the landscape’s changed” [laughs]. You know, you’ve got to feel, you’ve got to feel quite a level of trust and understanding and kindness. I mean I’m in my fifties, he’s in his fifties so it may well be that maybe his landscapes changed, you know, men have difficulties too but, you know, but I think back to my youth and you know how spontaneous and fun and yeah I think we all took our bodies for granted and just do whatever and now I’m having to almost negotiate with my body and oh I don’t know, it’s much harder now.

 

Melanie gave up swimming because she thinks it is a trigger for her urinary infections. As a result, she feels she misses out on spending time with her son on holidays.

So whereby I’d go on holiday with my son and for me that would be quite a lot of money and, you know, we, we’ve only sort of been, I’ve been trying to do one of those and things for the last few years because he’s growing up so quickly, he’s nearly thirteen so but then I wasn’t being able to go in the pool with him and I felt so sad about that because, you know, these are special moments. So, I remember a couple of times having to sit outside the pool throw the ball to him or just sort of engage with him and not be able to get in the pool. If we go to the sea, you know, I’d just splash my feet and that was it and I love water, I think water is therapy, baths I love, I can’t do it anymore. So for me that’s a real source of sadness.

 

Melanie was first diagnosed with embedded UTI by a private specialist, then with interstitial cystitis by her NHS urogynaecologist. She feels unsettled about the uncertainty, and thinks the best approach is to accept both sets of help.

So [sighs] he said, “So what we’re gonna do is we’re going to-, I’m going to refer you to my registrar and she will have a chat with you at another time but I think it’s interstitial cystitis,” so I was very polite and respectful and thought ‘Well do you know what, maybe what I do is let the private and their theory and practice run along with the NHS and their theory and practice. Maybe I just accept all the help and see what works rather than say you’re contradicting each other.’
 
I think the answer is I feel very unsettled because, I think I find it very unsettling because I think, you’ve got two camps and they’re both specialists and they’re both very sort of esteemed, you know, they’ve done all their years of study and they know what they’re talking about and yet they’re saying two different things so that is unsettling as a I say, you know, I respect them both and I don’t wanna create waves but [sigh] I’m just in the middle of trying to get well so I just thought I’ll take all the help I can get as long as one camp’s work doesn’t contradict another other camp’s work, I will take all the help.

 

Melanie is having regular bladder instillations to treat her bladder symptoms and give her a more ‘useful bladder’.

A bladder instillation is where they put a catheter into your urethra, wee hole, that’s me being medical knowledgeable and they basically put hyaluronic acid into your bladder so I’ve got a VIP bladder and vagina I thought, it’s getting so much attention [laughs]. So they’re putting that in and that’s weekly for about eight weeks and then I think they space it out to, to a month and then one more month and they see if it’s worked. So apparently what it does is this hyaluronic acid which is what women put on their face just to plump it up I believe, the hyaluronic acid thickens the bladder, and she says, “It’s almost like if you stretch a bag, you see sort of little parts where it’s thinned out,” she said, “That’s what we think your bladder’s doing.” She said, “So if we give it the hyalauron-,“ I’m struggling with it, “—the hyaluronic acid that will thicken it, make it healthier, make it more robust.” So it’s almost like they’re, you know, kind of giving me a more useful bladder.

 

Melanie appreciates that her GP has been receptive to the treatment recommendations from a private UTI specialist.

So my doctor has kind of stuck her neck out and said, “Okay let’s do this,” because normally with antibiotics it’s very hard for them to get them authorised because it’s, you know, the whole thing with antibiotics but she said “We’re not going to do quite as much as she said” because she said, “That’s an awful lot of antibiotics,” she said, “that will impact on your body.” I said, “I know, I know.” So she said, “We’re going to do it slightly less,” then she said, “rather than every five days we’re going to say once a week, you can have your Monuril and we’ll do the Hiprex and we’ll just review this monthly” so we’re on the second month with that. So that’s one thing, so this is where private menopause urogynae has crossed with NHS and because I’ve got a lovely doctor, she’s stuck her neck out. Probably most GPs, NHS GPs would not do that.

 

Melanie encourages others to do research and to not always trust what the doctor tells you about UTI.

Don’t always trust and take without questioning your doctor’s advice or words. I think this is a big one because it’s almost like a child respecting an adult and coming from a place that the adult knows more than me and I have to trust that adult. Equally, women trusting the doctor and saying “That doctor knows more than me and I accept what the doctor tells me, and I trust what the doctor says”, well actually I know this is awful, I’m not trying to be, you know, too, too outrageous here, but don’t. What you need to do is research, you need to find the right information, you need to find evidence-based information on menopause, HRT, urinary issues, gynae issues. Read up, read up, read up.
 

 

Melanie says self-care, self-love, and self-value are important.

For us, we suffer, we suffer, we suffer, we suffer in silence, get on with it, get on with it, you know. So I think we, maybe don’t value ourselves enough. For some reason we’re just not and also we’re busy, we have children, or we have parents, elderly parents in that sort of age group so I think they call them the sandwich, the sandwich generation, you kind of have your children, maybe teenage children, your parents, so that would be the case for a lot of women and they’re working so they’re just so busy doing the usual multi-tasking, multitasking, you don’t have time. I think as a mum I’ve always put my child’s health first and his wellbeing and his clothes and new clothes and haircuts and it’s all about him. It’s always been about my child but actually now, now that I’m sort of, I’ve only done this recently self-care, self-care, self-love, self-value.