sex and the stoma stigma
I’m Sue Lennon and I’m a psychosexual therapist (sex therapist for short). I always smile when I say that because it sounds like some kind of confession doesn’t it…like at AA!
Psychosexual therapy helps people to overcome sexual challenges that may be physical, psychological or (most often) a mixture of both. In sex therapy we see people with no libido, men with erection problems, with pain on penetration or premature ejaculation. We meet women who can’t have vaginal penetration – no matter how aroused they are (it’s called vaginismus) and couples struggling to come to terms with their bodies and the changes they have experienced, or to communicate their needs. Sex therapy helps people to meet their own goals for sexual recovery, manage practical matters, reconnect with their partners, talk about what they want or don’t want, overcome fears, find curiosity and discover satisfaction…whatever that means to them.
Before I became a sex therapist, I was a Macmillan Nurse, working in the Urology speciality and this was my introduction to the world of ostomy. I worked very closely with a fabulous Stoma Care Nurse who sat one desk along from me and over the course of 14 years, I learned lots from her, from the company reps that visited her with various products and learning opportunities, and of course, from the patients that we shared. I loved this work…but…
In the early days (almost 20 years ago…how time flies!) I recognised that there were conversations had with patients about the sexual impact of their illness or their treatment, but very few follow-up conversations and no service devoted to the sexual rehabilitation of patients afterwards. I determined to do something about that and set out on a whole new path that has led me around the world, speaking at conferences, talking to staff about the need to assess and address the sexual needs of their patients and talking to ostomates themselves, hearing their experiences (both good and bad) and learning what is important to them. You might think that our difficulty regarding talking about sex is because we are British…. Oh, how wrong you would be. This is a global issue!
Anyway – I qualified as a sex therapist and set up a rehab service in my hospital, sharing my time between the two roles for a while. I also set up a private practice which I continue to run online, across the miles. I specialise in sex after ostomy, cancer and spinal injury, though I also see people with other challenges too.
Some things have changed a lot in the last 12 years. Client stories are very confidential but I could tell you lots of funny moments from conferences, including the one about the Italian nurse who….no, I’ll leave that for another day. What I will share instead are my top 10 tips.
- LOTS of people find it hard to talk about real sex and real sexual problems. There is so much embarrassment that patients want the healthcare staff to raise the sex issue…and healthcare staff want the patient to ask. My advice? If you have an unaddressed sexual problem – speak out. Choose the staff member that you like the best, the one you feel most comfortable with. If you can’t say the words, write them down and hand over the piece of paper. And remember that there is no such thing as a daft question.
- If you have physical symptoms of tightness or pain in your pelvis, find out if there is a pelvic health physiotherapist in your hospital and what they might have to offer you. These amazing people do great work with folks suffering with anything from incontinence to vaginal spasm and painful sex. If they feel that you (and your partner if you have one) would benefit from sex therapy, they will tell you.
- Coming to terms with your changed body often takes time. How much time depends on lots of factors. You do not have to bare your belly to your partner. There is no point at which you ‘should’ be doing a photoshoot in your smalls. If you want to – fine. If you don’t, that’s also fine.
- There are loads of products on the market and you do not have to stick with what you were given when you left hospital. Ask for free samples, find what suits you and your skin best. If you feel secure with your pouch and your skin doesn’t hurt, then you have removed 2 worries right away! There’s more besides…if you want extra security then a belt might help. There are crotchless undies, pretty teddies, lots of stuff you never even imagined. Be curious.
- Read good patient information. Dansac have an excellent booklet to get you started and I’d advise if you are a couple, you read it together and talk about what you have read. You can find the booklet here – https://www.dansac.com/-/media/files/dansac/uk/qp-2845-your-sexual-self-booklet-digital.ashx
- Join online forums but do not measure yourself against others. You are unique. Be proud to know that only you can be you. If you need advice, ask but be aware that what comes back may not be true and may not suit you. Invest in your relationship with your Stoma Care Nurse and check things out with them.
- If you identify as LGBTQ+ let your healthcare staff know…help them to understand your needs and those of your partner/s. Help them to get it right.
- Before your surgery make sure that these 3 topics are discussed if they are relevant to you…. Function, Fertility and Fun. What is the risk to your sexual function and what can be done about it? What is the risk to your fertility, and do you need to do anything now? What services are available to support your sex life after treatment should you need help? These questions are worth asking even if your treatment is not surgical. Lots of the drugs you may be prescribed can interfere with your love-life too.
- Be a good ally for other future ostomates and pass on my advice!
- If you or they are stuck with sexual side effects and cannot find a way forward, take a look at my website and drop me an email. suelennon.com