Medications for urogynaecological conditions

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.

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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.

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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.

Alice found oxybutynin, a medication for overactive bladder, made a “big difference” as it led to better sleep and overall quality of life.

I started oxybutynin in the new year, and that was life changing. I know it sounds really stupid, but as a woman of 28 it was just within a couple of weeks, I was getting a full night’s sleep, I wasn’t waking up and going to the toilet. In the daytime, I was, my capacity was much, much greater.
 
And okay, it’s not saving my life, but it’s life-changing, it’s making a big difference to my life. And yeah, so they changed it, my consultant changed it, I started that at the end of last week, so I’m just getting used to it.

 

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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.

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.

 

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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.

Cynthia struggled to feel like her usual active self when taking a lot of medications.

I think like I was always very kind of fit, active, didn’t have any medical problems. And so I think my perception of myself has changed, really. And I suppose just kind of being. I mean, it’s interesting as well isn’t it ‘cos post-partum you have that in a way you sort of have this like realisation of your own mortality just going through that experience. And then, y'know, suddenly from being kind of fit and well to being anaemic and on painkillers and on laxatives and, you know, just like suddenly this stack of medication and that, I think that does have an impact on the way you view yourself.

 

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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.

Georgina was frustrated by the amount of medications she needed to take and that there was no foreseeable end to taking them.

So, all that’s been done is really offered drugs to try and reduce some of the symptoms, and my drug regime now is as restrictive as anything. Because I take, these are not all for the prolapse and bladder and bowel problems, but on waking I take three lots of tablets, and then I will mention the drugs that are related to the prolapse, and then just before breakfast I take Laxido, which is a laxative tablet, it’s a powder actually you have to drink. And then I take I do things like evening primrose oil, cranberry juice as well, and food supplements as well. I still have to take Senna around mid-afternoon, it takes at least 18 hours to work for me, so that’s why I take it not in the evening. I was put on Laxido as an evening dose as well, but I found that was had really undesirable effects, taking two doses of it in so much as I was so explosive, I actually developed thrush as well, to add to the misery.

 

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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.

Laura had a difficult time finding the right medications. She thinks she probably has a “long way to go” in finding the right approach but feels much better than before.

You’re sort of treating one part of your body but you’re concerned that other parts are getting damaged and, and not being looked at either. So, yeah, it, it’s a whole patchwork of trying to piece together, together your own health. And I think if you’re not able to do so, either ‘cos you don’t have the resources to be able to access online information or, or whatever it may be. I think you’re going-, you would end up lost very quickly in in amongst everything and would be quite despairing of it all, quite honestly.
 
I’m not certainly not perfect yet. I think, you know, my medication has probably got a long way to go. But I can live most days a relatively normal life and have a social life again and can start to do sport and can, you know, I have a quality of life that is, is okay it’s not as high as it was before all this started, but it’s [much better].

 

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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.

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.
 

 

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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.

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.

 

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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”.

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.
 

 

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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”.

Elizabeth struggled to get access to antibiotics when her dipstick tests didn’t show signs of infection.

But I never had any problem with them prescribing on symptoms for three-day courses, it’s just you go back and you’d say, “It’s not gone.” “Really? Not gone? There’s nothing-, you know, the dipsticks coming back clear, you don’t need anything.” And certainly when I came out of hospital with the sickness, the GP then was so reluctant to give me any antibiotics for months because he said, “The dipsticks clear. So you might have symptoms but you haven’t got an infection,” he said. So and that was also when I went to A&E and they quoted me interstitial cystitis, you know, and they said, “No, we can’t give you anything, and there’s no cure for it, you just have to take paracetamol,” which didn’t do anything, you know.

 

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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.

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.”

 

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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.

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.

 

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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.

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.

 

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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.

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.

 

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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.