Urogynaecological conditions: prolapse, bladder and pelvic floor problems
Medications
This section covers:
- Impact of medications on quality of life
- Finding the right approach with medicines
- Difficulties accessing medications
- Concerns about the interactions and side effects of medicines
In this section we use the terms:
Pelvic organ prolapse (prolapse) is a condition in which pelvic organs, like the bladder and uterus (sometimes called the womb), move down or slip out of place and may bulge into the vagina.
Urinary incontinence is the unintentional loss of wee/urine. There are other bladder symptoms that do not involve incontinence, such as needing to urinate a lot, getting up at night a lot for a wee, or difficulties emptying the bladder.
UTIs (Urinary Tract Infections) are when bacteria infect the system that stores urine (such as the bladder). There are other types of conditions that can involve bladder irritation and pain, such as interstitial cystitis (also called bladder pain syndrome).
Medications – such as painkillers, bladder anti-spasmodics (drugs that relax the bladder and prevent spasms), and antibiotics – can be used to help manage urogynaecological conditions. You can read more about dietary changes and supplements, including D-Mannose, in the section on management through lifestyle changes.
Dr. Sharon Dixon, a GP, describes the main medications available for the management of urge incontinence and the importance of considering the risks and benefits with your healthcare provider.
Dr. Sharon Dixon, a GP, describes the main medications available for the management of urge incontinence and the importance of considering the risks and benefits with your healthcare provider.
Broadly, most of the medicines that we use for-, so if we're thinking about urge incontinence, or that irritability, twitchiness of the-, of the bladder muscle, or mixed incontinence, the medicines that you would think about mostly act to try and tone that down a little bit, and calm it, and they mostly act through a pathway called the cholinergic pathway. So, broadly speaking they're anticholinergics. They're kind of newer ones and older ones, and lots of localities will have a kind of picklist or a guide about the way in which you might work through those. They can interact with other medicines, and actually if people are already on other medicines that act on that pathway, the side effects can add up a little bit, and that’s quite important to think about. Some of those side effects occur in the shorter term, so that’s-, can be things like constipation, or-, or a dry mouth, or sometimes affect the blood pressure, and you need to think about things like risk of falls, which can be important for some of the people you'll be supporting. Some of them also, taken over a very long time, might contribute to a risk of things like cognitive impairment, or memory, in the future, and that’s something that’s really important to some people. For other people the benefit of the symptoms or-, or used over a shorter term, that won’t be a priority, but again it’s about having those conversations and sometimes reflecting a bit of uncertainty there.
Dr. Matthew Izett-Kay, a consultant urogynaecologist, summarises some of the main medications used in treating and preventing urinary tract infections.
Dr. Matthew Izett-Kay, a consultant urogynaecologist, summarises some of the main medications used in treating and preventing urinary tract infections.
In terms of treatments, so if I focus on recurrent urinary tract infection, there are a number of options available to patients, so often what we’ll start with is trying to improve bladder function without antibiotics, and I’m sure a lot of people will be familiar with the concept of anti-microbial resistance which is where when a population uses lots of antibiotics, often inappropriately, we start to get super bugs or bacteria that do not respond. And as an individual that’s not generally a huge risk, but as a population basis individuals can pick up infections that are not treatable but can be life threatening. So we try and avoid unnecessary antibiotics. So when I see a patient with recurrent infection what I’m going to try and do is optimise bladder emptying, optimise fluids, maybe alter their hormonal levels if they’re post-menopausal or around the age of menopause. I may think about treating prolapse, often not surgically, but with things like pessaries to improve bladder function to try and find a way of avoiding the infections coming back without necessarily needing antibiotics. It may be that some patients start antibiotics by themselves, what we call self-start antibiotics and that might be because they get common infections, and it’s just easier to get on top of the infection quickly. Or it might be that they have very obvious triggers so common things like intercourse, or penetrative intercourse can cause infections so patients will take a small antibiotic after intercourse to prevent them getting an infection.
One of the difficulties that a lot of people find is that when they’ve had an infection if there’s a delay to treatment it can really get more deep set, it can go up to the kidneys and cause kidney infection, and the symptoms can take quite a long time to respond or resolve. So for some patients, quick access to antibiotics is really important. Often the first person people see is their GP, and your GP will be great at assessing your symptoms, often taking a urine sample, and hopefully if they feel it’s appropriate, giving you antibiotics. There will be a group of patients for whom antibiotics happen multiple times a year despite optimising all of these, and they’ll have a range of options. It might be that we some more invasive investigations, we might put a camera in the bladder to look for anatomical causes of infection, we may take biopsies of the bladder to look for infection. We might study the rest of the renal tract to look for causes of recurrent infection. If we can’t find anything obvious on those investigations we’ll often talk about prolonged courses of antibiotics in these types of patients, and that’s a controversial area. One of the reasons its controversial is there’s a not a lot of high-quality evidence about the role of long-term antibiotic courses and we’ve already talked about the fact that that may provoke resistance. But there’s an increasing body of evidence that shows that bacteria in the bladder, if they’re not treated properly can form little pods that sit in the bladder wall that then can flare up from a range of triggers. And then more and more we’re using non-antibiotic medications that are good at controlling bacterial infections, so two common things people will hear about is D-Mannose, and that’s an over-the-counter preparation that may come as a tablet or a syrup that prevents or helps prevent infection by making the bladder not a very nice place for bacteria to sit. And then there’s a medication called methenamine hippurate or Hiprex, now that’s another non-antibiotic medication that prevents bacteria. And that’s also got really high-quality evidence that shows that it’s as effective as long-term antibiotics. Now so some people will end up taking antibiotics of a small dose daily for many, many years, but there are a number of things we can try and do to avoid patients getting to that stage. But for some people the risk and benefit ratio means that that’s the right thing for them.
Impact of medications on quality of life
For some people we talked to with urinary and bladder symptoms, medications had been a ‘lifeline’ that greatly improved their quality of life. When medications worked well, it allowed the person to do more of the activities that their symptoms had made difficult.
Phyllis’s urinary tract infection (UTI) symptoms improved after starting on a long-term antibiotic. Since taking a long term course of antibiotics, Elizabeth now feels “fantastic”. Leah, who has chronic UTI, has found taking painkillers has given her a bit more of her life back. Vicky had bladder symptoms, including tingling, and eventually found had a “lightbulb” moment when she read on social media that it could be related to menopause. Using oestrogen pessaries and creams made a huge difference for her.
Clare asked her GP about going on hormonal replacement therapy to see if her urinary infections were related to menopause. She feels “life has gone back to normal” since starting the treatment.
Clare asked her GP about going on hormonal replacement therapy to see if her urinary infections were related to menopause. She feels “life has gone back to normal” since starting the treatment.
In the last two years, I’ve been doing some research myself. I’ve been on the Internet. I’ve found a couple of good websites. I’ve looked into the many effects of the menopause and the urogynae complications, was there, that was listed so armed with information now I’ve returned to the GP and explained that I feel, I feel this is part of the menopause. There are new types of HRT out now and these are the ones that I would like to try. She was fine with that, prescribed the HRT I’d asked for, and in the last year I feel as if my life has gone back to normal, so intercourse is no longer painful. I no longer have infections and there’s no discomfort or vaginal dryness. I don’t feel any side effects from the HRT apart from maybe breast tenderness and if anything, my libido has returned, so a result.
While finding effective medications could be life-changing, this often didn’t solve women’s problems completely, as they could still face future problems with supply issues, effectiveness, and knock-on health effects of the medication.
Some felt they had to ‘fight’ for antibiotic treatment. Jane and others had help from their partners or wider family to pick up their prescriptions from pharmacies. Mehar felt that she had needed to “spend my life in hospitals” trying to sort out her care and treatment. However others disliked taking pills and saw their medicines as a source of frustration or burden, not relief.
Finding the right approach with medicines
For the people we spoke to, finding the right medication or combinations was often a long and ongoing process. In some cases, there was not a clear end point where urogynaecological symptoms were fully managed. Finding the right medications often fitted into a broader ‘journey’ of learning to manage symptoms in the best way possible. Megan reflected that, “there’s not a right or wrong way of treatment, it’s just trial and error really and seeing what works best for you”.
The process of finding suitable medications could be drawn out and difficult. Healthcare professionals sometimes seemed to know little about the condition or complication (such as injury from mesh surgery) making it difficult to trust that they would offer the right treatment. Phoebe felt that her doctor was dismissing her as “neurotic” when he implied that prolapses weren’t painful and that she shouldn’t be taking pain medication.
At times, Leah and Vicky felt that a prescription was being used instead of finding the root cause. Vicky found this “so frustrating” and worried that her medications were “more of a sticking plaster than treating the cause”. Mehar and Laura felt frustrated that their medications were only targeted at specific symptoms or conditions, rather than at their overall medical needs.
At times, people felt their doctors gave prescriptions too willingly and without much thought about the harms. Elizabeth suggested, “all they [doctors] want to do is give you antidepressants; that’s not what I need”.
Katy felt like her doctors would just “throw painkillers” at her regardless of the side effects.
Katy felt like her doctors would just “throw painkillers” at her regardless of the side effects.
The trouble is they just throw painkillers at you all the time. Here, have painkillers. But the trouble with a lot of these Pregabalin and other things that morphine and things like that that you get given is they just completely wipe you out. And it’s, you know, I just find that I can’t, I just cannot take them. If I take them that’s the rest of my life gone because I just literally am just lying on the sofa, doing nothing, ‘cos I feel sick all the time. So, I take Zapain I take amitriptyline and every now and again, I’ll have a few glasses of wine just to self-medicate [laughs]. But I try not to take as much, you know. I’ve got a cupboard full of all different prescriptions that I’ve had over the year or so, but, I try really hard not to take them.
Sue X had been taking medication for urinary urgency for many years. She doesn’t know what would happen if she stopped. Amy wasn’t sure that her medication was working, so she requested other options. Holly, Clare, and Anna decided to do their own research through support groups and NHS webpages. Jan felt unsure why she had been prescribed certain medications and didn’t feel like her doctors explained enough.
Hope wondered why oestrogen cream hadn’t been brought up as an option earlier.
Hope wondered why oestrogen cream hadn’t been brought up as an option earlier.
I kind of wish my healthcare provider had mentioned more options the first time it was, it’s so called diagnosed over the phone and I thought it would have done no harm to have mentioned the oestrogen ointment because that’s, as I understand it, completely safe to take and really because after menopause that has such an effect, lack of oestrogen has quite a lot of effect I think on the, in that region, in the pelvic floor region, in the organs there so I think there’s be no harm in offering that kind of almost routinely to someone who have, who mentioned prolapse but that wasn’t mentioned to me, I had to bring it up and ask for it. So, perhaps if they were, it was suggested to healthcare providers that they could mention a, a range of options to patients and that could be one of the options perhaps.
Antibiotics can be used to treat UTIs in different ways: as a prophylactic (or preventative, to stop a person developing an episode of UTI), a short course (for an episode of UTI), or on a longer-term basis (for embedded or chronic UTI). For those with recurrent, embedded or chronic UTI, finding the right course of treatment could be especially difficult. A three-day course of nitrofurantoin was often the first option. For Elizabeth and others, this was often unsuccessful in treating the symptoms, meaning they ended up taking a three-day course of different antibiotics again and again. Anna described this as a “whack-a-mole” approach, where she felt that more infections would keep popping up again because the first wasn’t treated fully.
Some people were offered or requested antibiotics on a prophylactic (preventative) basis. This meant taking antibiotics after a potential trigger, like having sex. For Jane and Phyllis, this approach helped to prevent new UTIs from developing, which Phyllis said, “gave me a life”. This approach worked for Leah for a while, but stopped being effective after a few years and she thinks it led to her having an embedded UTI. Melanie had been prescribed a six-month course of preventative antibiotics by her private urogynaecologist but it was expensive. Her NHS GP agreed to prescribe a lower dose of preventative antibiotics.
Leah thinks that using antibiotics to prevent the chance of getting a UTI for so long may have been a “mistake”.
Leah thinks that using antibiotics to prevent the chance of getting a UTI for so long may have been a “mistake”.
And I think now when I, when I look back at the letter I think he had said to me as well, when I’ve looked at the letter as well in the past that, that if it carried on happening, if I-, to do that five times and then for it, if it then carried on after that then I should go back to him but he hoped that it would settle. And I think I was at a stage of my life where I was like ‘Oh well it’s working,’ and so I kept-, you know, I would, I had sex and then it’d work and then I got into a long, a kind of a long-term relationship and it seemed okay. I would have sex, I’d take the tablet and I thought ‘Okay well there’s no, it’s working for me, there’s no reason for me to do anything differently, I don’t need to go back’. And I had in my head, I thought, ‘Okay well once I’d been with this partner for a while it will settle down and I won’t get them anymore.’
So, I sort of self-medicated looking back on it which is a regret I think really but at the time I never even knew that chronic UTI existed, so I never knew that it was possible for something to turn from a recurrent UTI to chronic UTI. And I suppose, I don’t know if it would have been managed any differently if I’d have gone back at the time because I’m not sure whether he would have been able to manage the condition differently or prescribe what I needed on the NHS at that point. And I don’t like to beat myself up about it, but yeah I think it probably was a mistake to just carry on using the medication in that way but I was just so happy it was enabling me to have sex without getting the UTIs that I just carried on with it at the time.
Others were given a supply of self-start antibiotics which they could use as soon as they felt early signs of a UTI beginning. Rebecca found that having a supply of self-start antibiotics allowed her to “actually get on with my life”. For Rowan, it’s been “a relief” to go on holiday abroad and not worry about having a UTI because she takes self-start antibiotics with her.
Difficulties of accessing medications
Getting medications from a GP or pharmacist could be stressful and frustrating for some. When Anna asked for help from a pharmacist, she was told they can only deal with one-off (rather than ongoing problems with) UTIs.
Chasing up medications could be particularly unpleasant during flare ups of UTIs. Jane typically considers herself good at advocating for herself, but has found that: “when you’re completely vulnerable laying on the bathroom floor, incontinent, in agony, you cannot argue for yourself”. Having to wait to collect a prescription could mean a longer time with these symptoms and disruption in everyday life.
Using antibiotics in high dosages or for extended periods of time can lead to antibiotic resistance, which occurs when bacteria adapt and are no longer responsive to antibiotics. Because of this, some women said that accessing antibiotics felt like an “uphill battle” of trying to overcome doctor’s concerns about antibiotic over-use. Anna, Kerry, and Rowan had found it increasingly difficult to get antibiotics for their UTIs and felt that doctors were “gatekeeping” to stop antibiotics being used too often. Rebecca felt that her GP had become a “dispensing machine” for antibiotics which made for a “tricky relationship”. Anna felt “guilty” about needing to call her doctor so often, and noted that “I can just tell that some people would have a hard time having to constantly ring the doctor to get antibiotics”.
For those on long-term, prophylactic, or high-dose antibiotics, having prescriptions cut off was a significant source of anxiety. Holly found that controlling chronic UTI required “dogged persistence”, when missing even a day of antibiotics potentially sending you “back to square one”.
Gwen’s GP flagged up concerns that she had been on antibiotics for too long.
Gwen’s GP flagged up concerns that she had been on antibiotics for too long.
So that’s how I was going on until maybe two or three years ago I got called into the surgery by another GP, and he said he had grave concerns about me being on these antibiotics and wanted to stop prescribing them. And I think I went into shock because I’d been, all the time I was having those low dose antibiotics I was having no UTI’s and I thought they’re taking away the only thing that’s helped me. And he, you know he explained about becoming resistant to antibiotics and I kept saying, actually if it shortens my life I’m not bothered, it’s quality of life really that I’m interested in. Well he said “I can’t really let you carry on, so you’re gonna have to wean off them.” He said, “But I promise you I won’t leave you ever in pain.” So I thought, “Well I’ll just see how this works.”
Access to strong prescription painkillers could also be difficult for women. Susan encountered problems when her pharmacist lowered her dosage without warning, which resulted in withdrawal symptoms.
Getting hold of medications could be especially difficult while on holiday, which caused some people to avoid travelling or to bring back-up prescriptions with them. Sarah opted to stow away a prescribed supply so she could be certain she would have it if she needed it.
Supply issues were a concern for Alice, who had to stop taking oxybutynin because it was unavailable in the UK at one point. She found this experience “more stressful than the condition itself”. After experiencing delays or resistance from their NHS doctors, Laura chose to pay for medication privately and Kerry bought some from a pharmacy.
Concerns about the interactions and side effects of medicines
There were also concerns about potential problems from taking medication long-term and what it might do to their bodies.
Rowan worried about the impact of long-term antibiotics on her immune system, especially as she got older. Others worried about their gut health. Laura worries about what she will do about UTI medication if she has a baby in the future. However, for Phyllis, Leah, and others with chronic UTI, life without antibiotics was seen as “just not viable”. Though she knew antimicrobial resistance is important, Leah didn’t think it was right that patients with UTI should be a “sacrificial lamb” and their infections left untreated.
Helen takes high dose antibiotics prescribed by a specialist NHS unit. She hopes to come off antibiotics at some point, but worries about her quality of life.
Helen takes high dose antibiotics prescribed by a specialist NHS unit. She hopes to come off antibiotics at some point, but worries about her quality of life.
They obviously are a very specialist unit and they’re operating slightly outside of standard procedures because the concept of you having, y'know, an embedded or chronic infection is not that widely accepted. I mean, for me, I feel really comfortable that it, I am being treated on the NHS because I know, you know, sometimes I worry with some of the private doctors, there, it’s in their interest to carry on treating you. I know that sounds bad. But you do pay them. So, but with this, I know that it’s on the NHS it must be, y'know, they’re not going to do it if it’s wildly different. But they, they, they are following different protocol because they, they keep you on high dose antibiotics pretty long term until all your symptoms have gone. So I am on, I don’t want to be, but I am on antibiotics that I’ve been on for nine months and y'know, I desperately hope that I can get off them at some point, but y'know, when I started this, I y'know, I was struggling to live any form of daily life and now, whilst I’m uncomfortable a lot of the time, y'know, I’m working, looking after the kids and exercising every, most days. So, the difference is enormous.
The side effects of medications could be disruptive and, at times, worse than the urogynaecological symptoms being treated. Side effects described by the people we talked to included nausea, brain fog, and an upset stomach. Leah worried about weight gain as a side effect and the impact on her mental health. Liz worried that inserting oestrogen pessaries and cream could damage her vagina.
Leah worried about amitriptyline’s side effects like weight gain, but found that her body balanced out after being on it for a while.
Leah worried about amitriptyline’s side effects like weight gain, but found that her body balanced out after being on it for a while.
I think first and foremost it was, it was around weight gain so I read amitriptyline can make you put weight on, it has lots of not very [nice] side effects, makes you have a dry mouth. It makes you drowsy, so it kind of, you know, limits you in the evening in terms of what you can do and it makes you groggy in the morning. All of those symptoms though, the longer you’re on it, they do improve. And actually, sorry I’m jumping around a bit, but actually getting to the point where I’d taken enough amitriptyline that I had been able to start walking, start swimming, I’ve actually then been able to manage the weight gain better. So, the fears that I had to start, yeah, I mean I have put, I did put weight on definitely, I put quite a lot of weight on. But I suppose over the last year since I’ve been able to start walking and then more recently start swimming, I’ve been able to manage that a lot more and have very healthily, very slowly been, been able to lose some weight in a safe way. So yeah I suppose no-, no one really kind of really talked me through it, I just had, I kind of came to that realisation.
Taking strong painkillers could be hard on the body. Several women had problems with side effects or drug interactions. Medication left some feeling “dazed”. Jackie, who has severe pain after mesh surgery, has tried a variety of pain medications, including amitriptyline, morphine, and codeine, but hasn’t found anything that helps. She struggles with dizziness as a side effect of her medications, which leaves her feeling like “a sickly zombie in pain”. Pain medication had also caused constipation for Georgina and others who then had to take other medications, like laxatives, to counteract it.
Susan and others worried about what would happen if they ever stopped taking painkillers or if their prescriptions were cut off. Susan and Fran, who were mesh injured, were concerned that they were taking too many painkillers or on too high dosage. Fran preferred staying on a low dose to avoid being “doped up”. Katy found painkillers ineffective because of the side effects she experienced and says, “every now and again I’ll have a couple of glasses of wine just to self-medicate”.
Susan felt ill after being prescribed a “cocktail” of multiple painkillers at once.
Susan felt ill after being prescribed a “cocktail” of multiple painkillers at once.
She was seeing me every two weeks, every fortnight, which was fine. Keeping an eye on, changing drugs because the drugs were making me so ill because I was on such a cocktail of them. I, I mean I, altogether I was on gabapentin, tramadol, amitriptyline, and codeine. So I was on all of those drugs at once. And they made me so ill, so ill that I mean I was just green, I was vomiting, diarrhoea, I, the pain from the back was horrendous, so I was trying to cope with everything and every time that I wanted to be sick or think I had to get up to go to the toilet.
Some women like Leah and Melanie were concerned and frustrated about pain medication masking their symptoms without fixing the actual problem, especially when it felt like pain medication was being used as an excuse to not look for the root issue. Long-term issues like kidney problems or pain medications losing their effectiveness were a concern.
You can read more in this section about experiences of decision-making for treatments.
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