Getting back into sex after womb cancer, aged 24

Lydia Brain has written an honest blog about how being diagnosed with womb cancer at 24 impacted upon her sex life after having a hysterectomy. In this article she shares her advice as to how she overcame these issues to enjoy sexual intimacy and pleasure

At the end of 2016, at 24 years old, I was diagnosed with a rare form of endometrial (womb) cancer. It has been a long old year that has changed my life in insurmountable ways. There have been ups and downs (predominantly downs!), but now I am post treatment and slowly trying to rebuild my life and adjust to the ‘new normal’ (whatever that is).

Initially I was put on a hormone treatment, Zoladex, in hope the starvation of oestogen would shrink my tumour. This treatment put me into an induced menopause, which came with a whole ream of side effects. I suffered most from low mood, but also hot flushes and vaginal dryness. I was on Zoladex for four months until it was found my tumour was still growing and the treatment had been unsuccessful. At this point it was decided the only option I had left was a total hysterectomy.

In June 2017 I went for my surgery. The hysterectomy was performed through a laparoscopic keyhole procedure, whereby cameras as well as surgical instruments were used to remove my womb and cervix through my vagina. My vagina was then sutured and the fallopian tubes disconnected so that my ovaries could remain to ensure future hormone production.

It can take 12-18 months until your body has fully recovered, but about 6 weeks post surgery I was feeling healthy and back to almost normal activity levels. Having a hysterectomy affects many areas of your life. My confidence and trust in my body’s ability was questioned and this made it hard to know when to take up/give a miss to different activities and opportunities. One of the areas this is most profound is in your sex life.

Getting back into sex after a gynaecological surgery can be daunting. It is easy to worry about disturbing your stitches, creating damage and holding up your recovery. There is also the fear of pain or bleeding, which can be embarrassing and hard to deal with. Once your stitches have sufficiently healed the scar tissue is quite inflexible which can cause discomfort or even pain for a considerable time.

From experience, I found a lack of information on how to safely and enjoyably get back into sex post surgery, and much of the information out there is for heterosexual couples. I am single and have, for the most part, muddled through following my instincts. There is no one quick fix or light bulb idea that will suit everyone because we are all different but here some things I have learned that have helped me (and will hopefully help you too).

Listen to your body

It is so important to listen to your body and take it’s lead. If you don’t feel ready to jump back on the horse quite yet, then you probably aren’t. Likewise if you feel well and recovered, maybe it is time to start slowly introducing sex back into your life. Sex after a hysterectomy (mainly from not having a cervix, does feel different). My gynae oncologist warned me of this, and it definitely does. I wouldn’t say it feels any worse or better, but it will feel different, so don’t worry about this too much.

Be aware of how you are feeling and if you have any tension or anxiety about having sex again. You do need to be more aware of how you feel during sex and whether anything is uncomfortable/ painful, or if you notice any blood. Knowing what feels normal or different for you will help you make sure you are going at the pace right for you.

Seek advice

It may seem uncomfortable to talk about sex but it is important when recovering from a gynaecological surgery. I asked my doctor when it would be safe again for me to have sex and what to expect. Luckily my consultant is fantastic and I am happy to talk to him about anything (considering he has seen the inside of my vagina so many times, I should feel comfortable talking to him about this stuff).

Just make sure you seek advice from someone informed and reliable, Jo Divine’s articles and advice service is a fantastic place to get information that you know you can trust.

Slow and steady wins the race

Your body has changed, and it is probably still healing, you need to treat it with respect and take things slowly.

One of the things that helped me was starting with non-penetrative sex until I felt I was ready. Smaller toys can also be a great ‘test run’ at getting your body used to sex again, and seeing what is comfortable for you in a way that is easily controlled.

There are plenty of ways to enjoy your sex life post hysterectomy so look at options that will work for you with how you are feeling, with or without a partner.

Standing up for your body

It is hard as a single person when having sex for the first few times after surgery. The person you are with might not know much about your situation and the idea of talking about it can be scary or embarrassing. But to some extent, you must. Know what you are and aren’t comfortable with discussing, find what works for you that is within your comfort zone but gets enough across to ensure you can navigate the situation to be safe and enjoyable.

At the least, make sure the other person knows that you have to take things slowly and that you need to be careful. I tell the other person that I have had surgery recently, which is usually enough to make the situation work for me without having to bare my life story.

Trust

Trust in yourself, your body and your partner. It may seem silly to say, as you should always have sex in a situation where you can completely trust yourself and your partner but after a gynaecological surgery it is even more important.

If you are in a loving, happy, relationship then you should be in a good position where your partner knows what you have been through and cares about keeping you safe post surgery. Yet, they might not be fully informed on the impact of your diagnosis and surgery, and what it means in terms of sex. So make sure you are both well informed and on the same page.

If you are a single pringle like me, one of my best decisions I made post surgery was for the first time, sleeping with someone I knew and trusted. It was all together a relaxed, enjoyable and safe experience. I appreciate this might not be doable for most, but make sure you are with someone you trust to have your wellbeing as a priority and that you can be open with throughout the experience.

Be confident

Even though it can be scary talking about something so personal and often painful about yourself, it will help you have complete control over the situation. Be confident in yourself to take the lead on what is working and what isn’t. If something feels uncomfortable or not quite right, then let your partner know and try something else. Talking about your situation and needs may seem scary at first, but will be worth it when your worry and apprehension is relieved and you have an enjoyable experience. And remember, practice makes perfect!

A huge thank you to Lydia for writing this amazing article about her experience which will help so many younger women going through similar experiences.

If you would like more information or advice please call or email Jo Divine. All conversations remain confidential and we are happy to send a health brochure

Useful Websites

Womb Cancer Support: www.wombcancersupportuk.weebly.com
Eve Appeal: www.eveappeal.org.uk
Shine Cancer: www.shinecancersupport.org
Clic Sargeant: www.clicsargent.org.uk
Trekstock: www.trekstock.com
Macmillan: www.macmillan.org.uk
GRACE (Gynae-Oncology Clinical Research and Excellence): www.grace-charity.org.uk