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Well, I can tell you this topic is something I hadn’t much thought about until a unique job opportunity arose!
After working as a pelvic health physiotherapist for 8 years, I accepted an 18 month secondment to find out how pelvic health physio could be useful as part of recovery for women with a gynaeocological cancer.
In this work, lots of the women I supported had undergone radical surgery or chemoradiotherapy for cervical cancer. Their issues were things like bowel and bladder problems, or sexual difficulties.
So, what have I learned that could be passed on to you? What have my patients found the most benefit from?
Dilators were perhaps my biggest challenge! There were so many women struggling with them for all sorts of reasons – fear of harm, pain, or bleeding on use, as well as the questions this brings up like ‘could this signal the return of my cancer?’. For some, using a dilator is a reminder of cancer or the brachytherapy that they just want to forget and move on from.
So what’s the solution? Education, education, education! Understanding why dilators are used was a big breakthrough. Many women told me they had been advised to use dilators to prevent shortening and tightening of the vagina, but for women who were not sexually active and never wanted a vaginal examination again this wasn’t much motivation!
Dilators are used to prevent vaginal changes, which is very important for the function of bladder and bowel (the vagina’s neighbours) and the pelvic floor which helps control it all. It’s not all about sex and Gynae examinations, it’s about self-care. Yes, it may sometimes feel like a chore, but I tell people to put it in their mind along with brushing their teeth and washing their hair.
Dilators are also used in other aspects of pelvic health. In my career, I’ve used them as treatment for vaginismus – a condition where the vagina tightens up on attempting penetration causing pain – and for improving the flexibility of scarring or adhesions, which sometimes happen after childbirth, vaginal surgery or endometriosis, in order to reduce pain. It often helps women to hear dilators aren’t only a ‘cancer thing’.
Don’t get hung up on the length! Some women just won’t have the flexibility in their vaginal tissues to insert the full length of the largest dilator, but keep working up the sizes as it benefits the stretch of the vaginal walls. You can always use different positions to change depth of penetration during intercourse (or a great device called an Oh Nut – no I’m not on commission), but if stretch width-wise is an issue, it’s difficult to overcome (especially if a partner is well-endowed!).
The two other points my patients reported finding most helpful were:
The first thing most people want to do after treatment is ’get back to normal’ and, while this may well happen for a few people, for the majority it’s not that simple.
The trick is to stop comparing yourself to how you looked or felt before, and start to think about finding the new ‘normal’. Think of other times in life this has been possible, such as after a major life event like moving house, changing job, the loss of a loved one, childbirth, or breakdown of a relationship.
This does not mean ‘put up with what you’ve been dealt and just accept the difficult side effects of treatment’, but rather find a way to manage them instead of searching for their complete resolution.
Try to be curious and excited about what can be achieved instead of fearful – easier said than done! For example bowel urgency and incontinence may not go back to ‘normal’, but may be improved with guidance around changing your diet or taking medication. This could allow you to leave the house with confidence for shopping, socialising or work and improve your quality of life.
As another example, if you are struggling with how different sex feels or aren’t ready for penetrative sex, you could try other things – whether that’s lubricant, a different position, or vibration aids – to find a new way to enjoy intimacy. No, perhaps it’s not the same as the old way, but it could be equally satisfying.
The second is learning the skill of changing a negative statement into a positive. This is more than just looking on the bright side and ignoring all that is wrong, this is about acknowledging the problem in a positive light. For example:
“My body has let me down, it’s changed so much I’ll never get it back to how it was.”
“My body is amazing, look what it’s come through albeit a little battered and scarred, but it’s had to adapt and change given everything thrown at it. It will take a lot of effort to fix it up and it may not get back to how it was, but let’s see how good I can get it!”
Practicing this on a regular basis about the little things in life can help you get better at it, so that when you hear or recognise that negative, hopeless thinking creep in, you can make steps to change it.
These little tips have made a big impact on some of my patients and I hope it can for you too!
Don’t forget your CNS or healthcare team are there to answer questions you might have and Jo’s are always here for you too. Whether you need some emotional support from their Helpline volunteers on 0808 802 8000, need an answer from their Ask the Expert panel that would put your mind at ease, or want to connect with others on the Forum, their services are open.