LymphUnited eNewsletter

Volume 2
January 2022

LymphUnited eNewsletter

Volume 2
January 2022

Volume 2 – January 2022

Welcome to the second LymphUnited eNewsletter, which focuses on the importance of uniting with others in the same boat, to share experiences and tips helping you to live better with lymphoedema.

It is often said that “Men don’t talk!”  We try and address this and encourage us fellas to open up a bit and even participate in medical research with Garry Cooper-Stanton.

Natalie Philips, Clinical Manager explains genital oedema, which shouldn’t be ignored by any of us, even though it can be uncomfortable and embarrassing to talk about.

We hope you find this interesting and informative.  Most importantly, we hope there will be something that you find beneficial to improve your quality of life.

We would welcome your feedback at Hello@lymphunited.com.

“Men don’t talk!” by Matt Hazledine

Speaking personally, I used to think that talking about lymphoedema with other people who didn’t have it was a complete waste of time.  They wouldn’t understand, would they?  After many years of burying my head in the sand and replying to any question about my health, with, “I’m fine!”, I began to open up about my lifelong condition.  To my surprise, the common response was that they knew someone with swollen limbs but didn’t know what it was called.

In my experience, the problems that I had were when I didn’t talk, and this started to affect my mental wellbeing.  “I’m fine!” was covering up how I was really feeling, and it wasn’t a nice place. I am a problem solver and through several methods I dragged myself out of this miserable hole. I write about this in my book How to Live Better with Lymphoedema and my fifty-year-old self would tell my forty-year-old self to talk to others who understand.  You are not alone…

According to the British Lymphology Society, there are around 450,000 people in the UK with lymphoedema and some experts think there are more.  Where are they all?  Well, some, like I used to, don’t wish to go public and keep their condition under wraps.  Some people join online support groups, which you can hide behind a pseudonym, alias, or unrelated image like a flower or cartoon character.  These forums enable you to chat online with others, sharing experiences and tips with people who really understand.

Lymphoedema can be such a burden and is life-changing for many of us.  The more people I talk to about this, the more I realise that it’s not just me, it affects us in similar ways, which oddly is comforting.  Of course, having lymphoedema doesn’t just affect us. It impacts on our family and love-ones who try to help but can take the brunt of our problems.  There are 40 tips in my book that have been helpful to me in coping and self-managing lymphoedema.  A couple of tips include focusing on the things I am grateful for and find more time for myself to connect with nature. Now, I’m just an ordinary fella, who would have shrugged this off as ‘not my bag’, but I reached a stage in my life where I was prepared to try anything.  My idea of nature was 18 holes of golf which usually meant searching for my ball in the trees!  I suppose as I got older and perhaps wiser, slowing my pace of life and actually looking at my surroundings, rather than rushing from one thing to the next, actually started to resonate with me and help me relax and come to terms with my lymphoedema. There is loads more about this subject in my book, if you are interested in buying a copy, there’s a link on the newsletter or just visit the home page of the website.

Getting back to us men and the fact that we don’t talk, I can give you an example of this. The first time I attended the Lymphoedema Support Network AGM and Patient Conference in London in 2015, I was one of four men with lymphoedema out of a total of around 100 people.  Now, through Lymphoedema United, I have been privileged to meet new people, notably men, who are happy to share with me, another man, their story.  Some of them have agreed to put their story on the Meet the Member’s section of my website.

I would welcome you to contact me via the Contact Us page of our website, especially if you are willing to post your experience on the Meet the Member’s section. www.lymphoedemaunited.com

Make a new year’s resolution to unite with others and share your experience and tips. As Bob Hoskins once said in a BT advert, “It’s good to talk!”

Men and Lymphoedema – Research by Garry Cooper-Stanton, Doctoral Researcher

We are pleased to welcome Garry to our panel of Experts. Garry is currently a doctoral researcher undertaking his PhD and the aim of his research is to explore the experiences of men diagnosed and living with non-cancer related lymphoedema, which is also known as chronic oedema.  This extends to how these experiences affect their ability to partake in the self-management of their long-term condition, and the perception not only of the support they receive, but also of themselves.  However, the swelling is only one part of a complex condition that can impact upon a person’s mental health, socially and occupationally, such as depression, recreational activities, and work.

He explains what is involved with the research and encourages men with lymphoedema to participate.  Matt Hazledine from Lymphoedema United has been through Garry’s research process and says “It gives men the opportunity to explain openly how lymphoedema affects their life, without judgement and with anonymity.  If my voice can help men who are diagnosed in the future, then I’m in!”. 

Garry writes: In the time that I have been a lymphoedema nurse specialist, I have assessed, diagnosed, and managed all kinds of variations of lymphoedema. However, what has been the most fundamental aspect is the way the person engages with their condition.

This can lead them to seeking all kinds of information and equipment to help them manage their condition, but in some cases to bring an element of order, or a framework to their lives. What it sometimes hides is the other impact the condition may have upon their lives, such as the emotional, family, work, and life in general. In the time that I have been nursing, men who form part of the patients I see, can be the ones that talk the least about what has happened to them since being diagnosed with lymphoedema. Yet they need as much support as my other patients. I am undertaking a PhD focusing upon the experiences of men diagnosed with non-cancer related lymphoedema. The reason is based upon the limited research in this area, which means that those that support men, do not know the full extent of what it is like for them. Men react to things differently, based upon research, and that this affects their view of things, such as ill health or even being diagnosed with a long-term condition. This can make men feel vulnerable, as shown within existing research and even my own research. However, these are the men who have been willing to talk to researcher and myself about what is has been like for them.

There are many men that have yet to add to the conversation about their own experiences. To date 18 men have taken part in the online survey, with 10 who have completed the diary and the online interview. When men have talked about their situation, this has proven to be helpful. As they are able to look at what happened, how they managed things, but also how they want to go forward. The ability to talk releases what has been going through their mind for years, and all the emotions attached to those experiences. This ranges from gratitude for those that helped them, to anger and frustration at how others reacted to their new condition. What has been shown in my research is the journey men take from receiving a diagnosis to where they are now. This is not straight forward and is filled with twists and turns. Despite, these twists, and turns, what they would have liked, and some did have access to this level of support, was someone to talk to. Partners, friends and even support groups were the places that provided a space for them to talk. Otherwise, if it remained contained within themselves, led them to facing a condition alone and with so many questions. To talk to others is not to be vulnerable but takes a great amount of strength and courage. I would always advocate that men seek an avenue to talk to others, such as friends, but even organisations, such as the lymphoedema support network. By talking we not only help ourselves, but we also help others to understand, and that way we can all move forward.

I wish to know more about the journey of men in this area, and I am actively recruiting men for the survey with an aim of getting 100 men, and up to 15 men for the diaries and online interviews. If you would like to know more, or to be a participant within the research study, please click here. This will take you to the online survey, which contains a video about the research, with a deadline for the study being the 1st June 2022. Alternatively, please email me on grc912@student.bham.ac.uk.

Garry has presented his initial results from his systematic review at national and international conferences. If you can, please contact Garry and help him to help men get their voices heard.

We are pleased to announce that Garry has joined the ‘Meet the Experts’ panel of our website. Please visit his page and log in to the member’s section for more information.  https://lymphoedemaunited.com/meet-the-experts/garry-cooper-stanton

Raising awareness of genital odema & how to approach your lymphoedema therapist by Natalie Phillips, Clinical Manager Haddenham Healthcare

You may have been seen by a lymphoedema therapist who will routinely assess your legs and the extent of the swelling but how many of you have actually been asked or assessed to see if you have genital oedema?

This is quite a sensitive topic for you and the clinicians who may be involved in your care. When it comes to lower limbs, as a rule nurses /therapists are good at checking how far up the leg oedema extends to but may not be as confident extending physical examinations to include the genital area.

If you are too embarrassed to admit to or deny there is a problem when asked it may sometimes be get missed as your clinician may not press your further, rather than asking you if you mind if they can check anyway, just to make sure there isn’t a problem.

Some professionals may have their own issues concerning gender, age or culture and may feel uncomfortable talking to you about genital oedema. However, all clinicians should understand that they owe it to you to portray a confident manner enabling you to feel safe and trust that they understand this is difficult and are able to offer help to relieve the oedema.

Genital oedema can present in various ways, some more obvious than others, to the extent some patients may not be aware of it, are too embarrassed to mention it or have accepted it is a consequence of treatment. Symptoms can include fullness in the area above the genitals, known as the pubic region. Fullness or heaviness to the labia or scrotum and penis. Sometimes patients can experience internal oedema within the vagina which causes discomfort. Symptoms can be mild and variable or as they progress may become apparent as skin changes start to occur, such as the appearance of lymphatic blisters (Lymphangion’s) or you may experience leakage which can often be mistaken as urinary incontinence.

Quite often these symptoms may not have been mentioned previously and your clinical team should hopefully have recognised the importance of explaining to you these signs and symptoms of genital oedema, they should also have explained that assessing for any genital oedema early and will help to determine the cause of the oedema to ensure that you receive the most appropriate treatment. For those who feel they may be at risk of genital oedema or are not sure if they have it, Lymphofluroscopy, lymphatic mapping has proved useful in determining both. Unfortunately, this imaging is not routinely available under the NHS and as it stands Lymph Vision is the only UK clinic that offers this assessment as part of their overall lymphoedema screening service.

If you feel unable to broach the subject of genital oedema then a tool such as the one devised by Dr Rhian Noble – Jones, may help you if you are a gentleman with genital oedema, as it gives you the opportunity to highlight where the oedema is & how it affects you. This can then be sent to your lymphoedema therapist or taken with you to your appointment.

Once a diagnosis has been reached & an acute cause dismissed, treatment options & management of the oedema can be addressed. Again, your therapist should take time to listen to you and ensure they take into account your concerns and formulate a joint plan on how you can manage your genital swelling. Treatment tends to be similar to oedema in other areas of the body in that you should ensure good skin care, exercises, using the pelvic floor, alongside physical therapies such as MLD & Kinesio taping, genital oedema management also requires a degree of compression therapy. Depending on the extent of the oedema and the availability at the clinic, your therapist may suggest other treatments such as Photobiomodulation (Light/Laser therapy), Pneumatic compression therapy or deep oscillation. Regardless of what is suggested, treatment will focus on a period of reduction therapy, if required, followed by maintenance therapy.

To reduce the oedema, especially where there is scrotal or penile swelling your therapist may show you how to perform self-bandaging. Or they may suggest using compression products such as shorts, male or female (Image 1 & 2), or scrotal supports (image 3). Each can be combined with a selection of foams (image 4) with the aim to add localised pressure to the area to reduce the oedema.

These Compression products often form part of the maintenance phase and are used long term, however many of the products used may not be available on prescription and are either purchased by your clinic or if not you may be encouraged to purchase them yourself.  This is also apparent with other treatments, in that there are patient units available to purchase privately should you choose to continue with this treatment outside of your clinic.

By broaching the subject of genital oedema with your therapist not only enables you to be given options for the appropriate treatments but often the therapist will be able to offer or guide you in the direction of support with the psychological aspects of living with lymphoedema of the genitals. They will also be able to sign post you to other clinical specialists who may be able to help you manage issues with sexual or urinary function.  Early identification of genital oedema will minimise the risk of complications such as leakage, infection and skin changes and will ensure that you are able to maintain your quality of life, so please do not be worried about mentioning this to your therapist, we all want you to receive the best care possible.

Useful links:

Individual Lymphatic imaging: www.lymphvision.com

International Lymphoedema Framework: Genital oedema pocket medic videos. http://www.medic.video/ilf-lymph

Male genital oedema screening tool: pdf

Compression products for genital oedema: www.lymphshop.com

Please click on the following links to access the video of both interviews between Natalie Phillips (Haddenham Healthcare) and Mark Pearson (St George’s Hospital) discussing genital oedema and Eto compression garments:

The short video is available here: https://www.youtube.com/watch?v=VpZHqpUx0ig

The full interview is here: https://www.youtube.com/watch?v=jmk68NaeDZw

Image 1

Image 2

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Image 4

Do it for George’s

For so many, the new year gives the opportunity for a whole new version of self and whilst the Covid-19 Pandemic continues to provide us with some uncertainty, why not make one thing certain in 2022 and Do it for George’s?

Kickstart 2022 with us and do something amazing this year to support St George’s Hospital Charity and of course your funds can go towards the Lymphoedema Research Fund. Whether it’s running, cycling, abseiling or jumping out of a plane, we have a challenge for you!

If 2022 is the year that you decide to do anything, then do it for George’s – click here to find out more!

Bitesize News

Available Now

Top Tip

Connect with other people with lymphoedema by joining online forums, attending focus or support groups, visit patient-based websites for information about events. Talk about it!

Lymphoedema Research Fund

Target: £250,000

Raised: £99,869

Date: 31st December 2021

Available Now

Top Tip

Connect with other people with lymphoedema by joining online forums, attending focus or support groups, visit patient-based websites for information about events. Talk about it!

Lymphoedema Research Fund

Target: £250,000

Raised: £99,869

Date: 31st December 2021

Follow us on:

www.lymphoedemaunited.com

Helping you to LIVE BETTER with LYMPHOEDEMA

How to LIVE BETTER with LYMPHOEDEMA

The new book by Matt Hazledine is available to buy NOW!

25% of pre-tax profits from book sales will be donated to the lymphoedema Research Fund.

Become a member

Sign up as a Free Member to receive Exclusive Benefits, including access to Articles and Videos from the Experts, a Unique Discount Code from the Suppliers, Members’ Offers and a Quarterly eNewsletter with the latest news from the lymphoedema community.

How to LIVE BETTER with LYMPHOEDEMA

The new book by Matt Hazledine is available to buy NOW!

25% of pre-tax profits from book sales will be donated to the lymphoedema Research Fund.

Become a member

Sign up as a Free Member to receive Exclusive Benefits, including access to Articles and Videos from the Experts, a Unique Discount Code from the Suppliers, Members’ Offers and a Quarterly eNewsletter with the latest news from the lymphoedema community.

Medical Advice Disclaimer

DISCLAIMER: THIS WEBSITE DOES NOT PROVIDE MEDICAL ADVICE

All material on this website is for informational purposes only and is not a substitute for professional medical advice, diagnosis or treatment.

Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition or treatment and before undertaking a new health care regime and never disregard professional medical advice or delay in seeking it because of something you have read on this website.

Reliance on any information provided on this website, by our employees and others appearing on the website is solely at your own risk.

For the avoidance of any doubt, Matt Hazledine has lymphoedema and is not a medical professional.