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You can expect to have short-term and long-term effects after pelvic exenteration. Not everyone will have all the effects we talk about below, but it is good to be prepared for what you may experience.
Your healthcare team will be there to support you with any effects, as well as offering advice on treatment or management. Remember that we are here for you too, whether you are waiting to have pelvic exenteration, in recovery, or years past the surgery.
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There are some common and expected short-term effects after pelvic exenteration.
After the surgery, you will have pain where the wounds are. Everyone experiences pain differently, so it is difficult to say how much pain you will have. You will have pain medication straight after surgery and for as long as you need it, but it is important to tell your healthcare team if the pain isn’t getting any better.
After a pelvic exenteration, you are at higher risk of getting different infections, including:
Your healthcare team will be keeping a close eye on you to make sure your wound is healing properly and that you don’t have any symptoms of an infection. You should tell them straight away if:
They will want to treat any infection as soon as possible.
Pyelonephritis is a type of urinary tract infection (UTI). It usually happens when your kidneys become infected by bacteria. You may have:
Let your healthcare team know if you have any of these symptoms. They may be able to give you antibiotics or another treatment to help.
Sepsis is a reaction to an infection that is life-threatening. You must contact 999 or go to A&E if you:
Pelvic exenteration is a big surgery, which means you may lose a lot of blood during or after it. Your healthcare team may give you a blood transfusion.
Sometimes wounds heal more slowly or any previous treatments you’ve had, such as chemoradiation, may affect how well they heal. Your healthcare team will be monitoring your wounds and decide how to manage this.
Blood clots are known as deep vein thrombosis (DVT). They are clumps of blood that can block the blood flow in a vein or artery. You are at risk of developing them after surgery because you have to stay in bed longer than usual to recover. Blood clots can be very serious and in some cases life-threatening, so it is important to listen to your healthcare team about how to prevent them.
A physiotherapist might visit you on the ward. They will show you exercises to help prevent blood clots in your legs, such as leg and breathing exercises. You may also have to:
If you need injections, your nurse will teach you how to give yourself these at home. Or a district nurse may be able to visit you at home.
Blood clots may sound scary, but it is important to be aware of the risk so you understand why your healthcare team want to prevent them. Remember, they are there if you have any questions and can give specific advice about what you should be doing.
Pelvic exenteration weakens or removes the tissue and internal walls between organs in the pelvis. This can create an opening between organs or spaces inside the body – for example, between the bladder and vagina, if they haven’t been removed. This opening is called a fistula.
Any symptoms will depend on where the fistula is, but could include:
It’s important to tell your healthcare team about any symptoms, as they can check for a fistula and offer you treatment.
Sometimes the hole made your surgeon (stoma) for wee or poo to pass through can get smaller or narrow. This is sometimes called stoma stricture. Your healthcare team will be able to treat it to open it up again.
It’s common to struggle with feelings about your body and changes to how it works after surgery. This can get worse in the first 3 months after surgery, but may get better as you recover.
It’s important to get support for how you’re feeling. Ask your healthcare team for a referral to a counsellor or a psychosexual therapist.
If you had your ovaries removed, you will start to go through the menopause. This can cause many symptoms including:
There are ways to treat or manage these symptoms.
The changes to your body and your emotional wellbeing are likely to have an impact on your sex life. You may be advised to avoid penetrative sex for 6 weeks or sometimes longer. In some cases, penetrative sex may not be possible anymore, although you can still find ways be intimate. Either way, you might not feel like being sexually intimate again for a while and it can take time to get used to the changes.
The type of sex you will be able to have will depend on:
It might help to remember that sex and intimacy isn’t only about penetration or a specific stimulus. You can take the time you need to explore new ways to be sexual, with a partner or yourself. Get to know your body again and find out what works for you now.
- Megan, who had LEER in 2020
We know that pelvic exenteration for advanced cervical cancer is life-changing. It changes your body, your relationship with your body, and can have a huge impact on your emotional wellbeing. Your healthcare team are there to support you with any questions or worries you have.
Remember that we are here for you too, whether you are waiting to have pelvic exenteration, are in recovery, or are years past it. Sometimes connecting with others who have gone through a similar experience can be helpful. Our online Forum lets our community give and get support. We have a private forum for those with advanced cervical cancer. If you would like to join, we ask for a few details – this is kept private, but means we can make sure this part of the forum is a safe space. You can read through the messages or post your own – whichever feels most comfortable.
If you would like to connect with others who have had a pelvic exenteration, contact us at [email protected] We will do our best to put you in touch with someone.
If you ever need to get in touch with someone quickly, our trained volunteers can listen and help you understand what’s going on. You can call our free Helpline on 0808 802 8000.
If you have general questions about pelvic exenteration, our panel of medical experts may be able to help. They can’t give you answers about your individual situation or health – it’s best to speak with your GP or healthcare team for that.
A UK charity that offers information and support on living with and looking after a stoma.
Helpline: 0800 328 4257
Offers information and support to people who have, or who will have, a urostomy.
Thank you to all the experts who checked the accuracy of this information, and the volunteers who shared their personal experience to help us develop it.
We write our information based on literature searches and expert review. For more information about the references we used, please contact [email protected]