20 seconds of courage: talking about genital oedema in adults
By Dr Rhian Nobel-Jones and Dr Melanie Thomas
This article is taken from the Summer 2021 issue of LymphLine, the LSN’s quarterly newsletter available to all LSN members. For details of how to become a member, click here.
Dr Rhian Nobel-Jones Dr Melanie Thomas
Every culture across the world has its own concept of what is rude or embarrassing in terms of exposure of body parts or what counts as intimate conversation. Sociologists and psychologists, overall, seem to agree that we are not born with a shame of nudity. Instead, we learn it, as an important behavioural code that allows us to operate in human society. In the UK alone, children grow up with a plethora of different words for the private parts of their bodies, e.g. nini, winkie, willy, fairy, which can cause hilarious confusion to visiting aunties or cousins, accompanied by hurried translation and blushes by the parents or guardians. However, these early social interactions can leave deep impressions and guttural feelings of shame when adults later have health problems with their genitals, such as soreness, skin eruptions or lymphoedema and wonder what words they should use.
“You know, sometimes all you need is 20 seconds of insane courage, just literally 20 seconds of embarrassing bravery, and I promise you something great will come of it.” – Benjamin Mee – (film) We bought a zoo.
When someone presents a swollen arm to experienced lymphoedema therapists/ nurses, they will always check whether the swelling extends to the back and the breast. Patients tell us that even though they have exposed their breast several times over a cancer treatment journey, those first few seconds of undressing and being examined can still be embarrassing. Similarly, even health care professionals are embarrassed when learning Manual Lymphatic Drainage and they have to undress to their knickers. So when we consider patients who have genital oedema, we can see that it can feel even more challenging for a number of reasons. One is that the cause of the oedema might not be in the genitals at all, but deeper in the pelvis, so they might not have asked any medical professionals to examine the genitals previously. Another is that they may have been referred to the lymphoedema clinic with swelling of their legs and not even mentioned (or perhaps noticed) that the swelling extends into their pelvis and genitals. Other patients have oedema in the genitals alone, but cannot bring themselves to ask their doctor/nurse/therapist to look at what concerns them as they are too embarrassed.
“If children feel safe, they can take risks, ask questions, make mistakes, learn to trust, share their feelings, and grow.” – Alfie Kohn.
Adults, like children, need to feel safe and trust that the health professional in front of them understands that this is difficult and is knowledgeable, or at least knows who to ask. The problem is that, unlike children, adults can have all sorts of limiting misconceptions about what they should (and should not) talk about with certain people, and make paralysing assumptions about how they will react. The famous ‘British reserve’ aside, the gender, age, culture, profession or even manner of the health professional in front of us, can make us feel that we cannot open up to that person.
Breaking the silence on genital oedema requires the health professional, or the patient, to find their 20 seconds of courage. This can be helped by using a third object as a conversational stepping-stone. A brief questionnaire (with a body diagram) given to a patient at their GP practice, urology/gynaecology or lymphoedema clinic, can start a conversational flow that might otherwise have seemed too intimidating to begin. The Lower Limb and Genital Lymphoedema Questionnaire (LLGLQ) is a self-completed, simple 2-sided form, which is being used in many countries around the world but started here in the UK. It is available for men or women and anyone can receive a copy of the form by emailing Rhian.Noble-Jones@wales.nhs.uk You can complete the form in your own time and privacy and take it to your own GP or lymphoedema clinic for discussion with your therapist/nurse/doctor. So be brave and don’t suffer alone if you have lymphoedema in your penis, scrotum, testicles, vagina, labia (or any other names you use for your genitals). Sometimes using the anatomical/medical words above can seem less daunting and more direct than just saying ‘down there.’
Figure 1. Stepping stones image from www.geograph.org.uk
Getting an assessment of genital oedema is important because there are so many different causes, some of which can require medical or surgical treatment so we would encourage you not to ignore it. Once evaluated as being lymphoedema with no other underlying problem, the management is a well-informed adaption of the principles of lymphoedema care in any part of the body.
| Skin care | For some people, the skin of the genitals can be prone to repeated infection (cellulitis). Do not be tempted to wash with strong soaps or astringents. An emollient designed to be used as a wash is better. Antibiotics are needed to resolve cellulitis and if cellulitis occurs frequently, your specialist or doctor may recommend prophylactic low dose antibiotics for you. If the skin is too dry, e.g. of the labia, a lubricant can be useful to prevent friction damage; if however skin creases are too moist then a barrier cream can be useful. The key is to avoid breaks in the skin. |
| Support or compression | There are specialist products designed for genital oedema. However, sometimes men may find cycle shorts or other lycra type briefs, jock straps, or speedo swimming briefs beneficial. Importantly – loose boxers are not useful nor is any garment that digs into the skin. Similarly, for women lycra/ ‘hold me in’ girdle underwear or even bikini bottoms if firm, sometimes with additional padding over the swollen labia or pubic area, can be useful. If the oedema is restricting functions such as being able to pee (urinate) in a straight line then you might find it useful to set aside a towel for a short burst of compression by pulling up the towel between your legs in a sitting position (see figure 3) |
| Exercise | As with other types of lymphoedema, exercise is beneficial but may need consideration in terms of how it’s performed, e.g. good genital compression/support for running, a change of saddle on a bike and cycle shorts (see point above regarding lubrication as necessary). Keeping the muscles of the legs, buttocks, back and abdomen strong and pumping will help the lymphatics. Doing exercises in a swimming pool (or even deep bath) uses water pressure to support the genitals while you exercise the hip area. However, it may be sensible to cover any areas of broken skin with a waterproof dressing or garment. Do discuss with your lymphoedema specialist or doctor if you are unsure. Generally speaking, both men and women benefit from doing daily pelvic floor exercise too, and there are simple medically approved apps for mobile phones and laptops, that can instruct and remind you daily e.g. Squeezy app for men. |
| Simple Lymphatic Drainage (massage) | Many people would feel embarrassed at the thought of massage in this area, however it can make the world of difference when the swelling is restricting normal functions such as urinating. Your lymphoedema specialist will teach you this. |
| Clinic intervention | It may be that initially genital oedema requires intervention that is more intensive. This may be a short period of bandaging, manual lymphatic drainage, use of machines, such as deep oscillation or laser, or consideration of surgery. Where it is suspected that the cause of the genital oedema is more complex, some patients may also need a referral to another medical speciality, e.g. dermatology, gastroenterology. All children with genital oedema should see a lymphoedema specialist/doctor with specific paediatric experience and have a thorough medical assessment. |
Figure 2. Useful tips for managing genital oedema
Figure 3. A few minutes compression before going to the toilet can ease genital oedema
Although you may feel like the only person who has genital oedema it is not as rare as people seem to think but finding that you have it can initially be frightening and/or embarrassing. Every presentation of genital oedema is somewhat unique and will need a unique combination of solutions, but it does not mean you are alone in having it. The key is finding a knowledgeable and confident lymphoedema specialist who can guide you through the treatment options, direct you to suitable advice and support you in finding your own unique solutions. So, we all need to be brave and find our 20 seconds of courage to talk about our genitals.
Always remember you are absolutely unique; just like everybody else – Margaret Mead.
About the authors:
Dr Rhian Noble-Jones is a National Lymphoedema Researcher for Lymphoedema Network Wales and has been conducting research into genital oedema the last decade. She is currently Chair of the Scientific Committee of the British Lymphology Society.
Dr Melanie Thomas is the National Clinical Lead and Associate Director for Lymphoedema in Wales and a member of the Board of the International Lymphoedema Framework.
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