Pelvic Pain Q&A Series
I am delighted to bring you this Pelvic Pain Q&A with Meg Burgess, specialist cancer nurse at Prostate Cancer UK. The Prostate Cancer Charity was founded in 1996 by Professor Jonathan Waxman. Initially there were only 5 members of staff and a helpline in a small room in Hammersmith hospital, working one day per week. In 2012 they merged with Prostate Action and rebranded to form Prostate Cancer UK. You will recognise many of their campaigns from ‘Who’s the man‘ to ‘Men United‘ and the small ‘Man of Men’ badge that SO many people are now wearing to raise the awareness of Prostate Cancer
I first met Meg back in 2017. I was invited to run a chronic pelvic pain syndrome and chronic prostatitis workshop for the Prostate Cancer Specialist nurse team at their HQ in London Bridge. Since then we stay in regular contact, keeping each other abreast of developments. I want to say thank you once again to Meg and the team for being involved with this mini Q&A series. It is much appreciated
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Who are the Specialist Nurse team at Prostate Cancer UK and what do they do?
We have a team of 12 Specialist Nurses at Prostate Cancer UK. We all have specialist knowledge of prostate problems and between us we have a wealth of experience from urology, oncology and mental health to palliative care and education. I have been a nurse for 30 years and my experience has been in urology, palliative care and I have been working at Prostate Cancer UK for over 10 years.
The Specialist Nurse Team provide support and information via our telephone, email and Live Chat services. We talk to anyone with concerns about prostate cancer or a prostate problem.
As well as delivering the Specialist Nurse services, we are also involved in a range of work that goes on across Prostate Cancer UK. This includes reviewing written information, writing articles, speaking at education or awareness-raising events, media work and involvement in fundraising events.
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Do men with chronic pelvic pain get in touch?
Yes. Last year the Specialist Nurse team received over 15,000 enquiries in total. Although about half of the people who get in touch have received a diagnosis of prostate cancer, many people get in contact because they have been diagnosed with a benign prostate problem or are worried about symptoms they have.
Some men who get in contact have been diagnosed with chronic pelvic pain syndrome (CPPS). Others may have read our online information and recognise the symptoms of prostatitis.
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What is chronic pelvic pain syndrome (CPPS)?
Chronic pelvic pain syndrome (CPPS) is the most common type of prostatitis. It can go on for a long time – chronic means long-lasting. Men with CPPS usually have symptoms for three months or longer. The symptoms vary but it usually causes pain in the pelvic area.
Nobody knows for certain what causes CPPS – unlike the other types of prostatitis, it’s not caused by a bacterial infection. There could be a number of causes, which makes it difficult to diagnose and treat. Possible causes include urine getting into the prostate gland, an infection which doesn’t show up in tests, and problems with the nerves around the prostate.
Some research shows a connection between high levels of stress and anxiety and CPPS. Feeling stressed or depressed may cause physical symptoms that trigger CPPS or make it worse.
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How is chronic pelvic pain syndrome CPPS diagnosed?
There is no single test to diagnose CPPS. Therefore tests are often used to rule out other possible causes of symptoms before making a diagnosis of CPPS.
Tests are likely to include:
- a urine test to check for sign of infection
- a blood test
- a physical examination of the abdomen (tummy area)
- a physical examination of the prostate called a digital rectal examination (DRE), to feel for anything that’s unusual, and to check its size
- a prostate specific antigen (PSA) blood test.
- Where appropriate, testing for sexually transmitted infections.
The GP can perform these tests but a referral may be made to a hospital specialist (urologist) when symptoms are severe or there is uncertainty of the cause of pain.
Further hospital tests or scans may be used to look at the urinary tract or prostate in more detail.
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What are the sorts of questions or concerns men with chronic pelvic pain syndrome ask you?
CPPS is a complex condition and it often takes time to reach a diagnosis. Men will often contact us not knowing what’s causing their symptoms and before a diagnosis has been made. And of course, any sort of uncertainty can be really worrying.
Men often worry that symptoms might be due to cancer or that they have been wrongly diagnosed.
After a diagnosis of CPPS has been made, many men fear it will never get better. Although it can be difficult to treat, symptoms often improve or resolve with time.
Men may want information about treatments or the best way to treat CPPS. But because symptoms of CPPS can be so varied, treatments will be individualised and may involve a multi-disciplinary approach. For example, if pain is hard to manage, a pain specialist may be involved in care.
Sometimes men ask us about the weird and wonderful ‘cures’ they have read about on the internet. We may be able to de-bunk some of the myths and signpost to more reliable sites for information.
It is not uncommon for men to feel frustrated by a lack of understanding and information about their condition.
The Specialist Nurses at Prostate Cancer UK may help men with questions to ask their doctor and we can provide information and support as men go through investigation and treatment. We support men diagnosed with CPPS to explore ways to manage symptoms and can usually offer a little more time than our colleagues in the NHS.
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What sort of impact does chronic pelvic pain have on the men you speak to?
Living with pain affects all aspects of daily life. From your ability to work and socialise to the impact on your mood, relationships and family life.
Sometimes it is helpful to talk about the impact to someone outside immediate family and friends. It can be difficult for loved ones to know how to help or to understand the impact pain and symptoms can have. Men tell us it can feel very isolating when others don’t understand, or they find it difficult or embarrassing to talk about.
We can spend time talking about both the physical and emotional impact of pelvic pain. We may suggest other sources of ongoing specialist support or strategies for coping.
Because we know that stress may make symptoms of CPPS worse and symptoms often result in stress; conversations will often include self-care, ways to relax and access support.
Coping with any chronic condition can be hard but there are lots of things that can help. Our online guide, How to manage your chronic prostatitis has been especially helpful to men I’ve spoken to. It looks at triggers, treatments and includes experiences of others and their coping strategies. It allows men to track symptoms and make a plan, helping them to take more control over their situation.
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How can men suffering with Chronic Pelvic Pain Syndrome get in touch with the Specialist Nurses at Prostate Cancer UK?
You can find out more about the Specialist Nurses services here. We usually find we can help most by talking on the phone. We are available on 0800 074 8383 (Monday-Friday 9am-6pm, Wednesday 10am-8pm).
I want to thank Meg and the team at Prostate Cancer for al the good work their dedication to raising awareness and providing support for men and mens health.
PELVIC PAIN Q&A SERIES:
Sandy Hilton, Dr of Physiotherapy. Pelvic health expert
Nick Woods, clinical psychologist and sufferer of pelvic pain
Robert Wells, author of ‘Back, Sack and Crack (and Brain)’ and sufferer of pelvic pain
Jiva Masheder, mindfulness instructor
Tim Parks, author of “Teach us to sit still’ and pelvic pain sufferer
Meg Burgess, specialist nurse at Prostate Cancer UK
Bert Messelink, vice chairman of the European association of urology
Carl Giardinazzo, former director of the Pelvic Pain Foundation Australia and pelvic pain sufferer
Read my interview with Laura Rathbone on Acceptance and Commitment Therapy here