In a blog for our special series on The Problem With Sex’, researcher and nurse Tracie Miles, author of a Cochrane Review on vaginal dilator therapy after pelvic radiotherapy, writes about sex, science and what happens when we listen to women.
Page last reviewed 30 January 2023
So there I am, a newbie gynaecology cancer nurse, looking after women during and after radiotherapy treatmentSomething done with the aim of improving health or relieving suffering. For example, medicines, surgery, psychological and physical therapies, diet and exercise changes. for their pelvic cancer. My boss shows me the hospital’s vaginal dilators; hollow phallus shaped plastic tubes in various sizes stacking one inside each other like a set of Russian dolls.
The thing is, I’m supposed to tell the woman in front of me that she needs to push these tubes into her vagina. Over the last few months she has had hands, eyes and instruments in it as she is trying to cure or palliate her painful tender and occasionally bleeding cancer. I’m supposed to tell her to insert these THINGS into her vagina, around 3 times a week move it around to stretch the tender skin. My boss says that if she doesn’t the walls of the vagina might get stuck together, might lose their elasticity as well as moisture/lubrication……making penetrative sexual intercourse and medical examination difficult (known as vaginal stenosis)…. oh and not to worry if she bleeds whilst she is doing this….. that’s normal…. hmm tricky that; vaginal bleeding was the signal she had that took her to the doctor, who then put a speculum in her vagina and referred to the cancer team.
Anyway I obediently complied with issuing instructions; my patients doing the same dutifully trying to be concordant with my commands.
I started to listen to the silence
Then I started to listen to the silence during on treatment consults….. it was loud, DILATING IS DIFFICULT! She was telling me that she wasn’t sexually active, and didn’t want to be….. She whispered that the dilator made her feel dirty and reminded her of sexual abuse she had endured and was distasteful. We women are not all the same …. so not silence, but a SHOUT …. really ? I want my vagina back … that dilator is so medical …. can’t I just have sex or use my vibrator?
I needed to give them an answer so turned to the library to find my voice. There were many medical papers on the topic repeating the advice of senior teachers but no good research studies and no definitive clear message. The obvious next step was to apply science. I used systematic review methodology. That done[i], the science shouted “no robust evidence, more research needed in this area”.
Might vibrators be a preferred alternative?
The next step was to measure the vaginal damage caused by radiotherapy. There were no practical measuring tools so one needed to be designed, built and tested. We called it the vaginometer, it can physically measure what women are telling us. We could measure if the vagina was shorter, less elastic….. This became the beginning of my doctoral thesis looking at dilator therapy. The research question turned into asking if women should “dilate or vibrate” their vagina, postulating that some women may prefer to use a vibrator sex toy as an alternative to the medical dilator device, they may find it more acceptable and the vibration may confer a mucosal/epithelial healing advantage.
So there was I, in front of the ethics board, defending my proposal, asking for permission to apply science in the form of a RandomisedRandomization is the process of randomly dividing into groups the people taking part in a trial. One group (the intervention group) will be given the intervention being tested (for example a drug, surgery, or exercise) and compared with a group which does not receive the intervention (the control group). Clinical TrialClinical trials are research studies involving people who use healthcare services. They often compare a new or different treatment with the best treatment currently available. This is to test whether the new or different treatment is safe, effective and any better than what is currently used. No matter how promising a new treatment may appear during tests in a laboratory, it must go through clinical trials before its benefits and risks can really be known., comparing dilators with vibrators …. they listened ! The only criticism was my upper age limit …. 60 !? Too young , too ageist … no upper limit they said …. lesson learnt ….. scientists will talk about sex, they will listen…. You just need to start the conversation. Next stage was to get funding to pay for all the equipment and measuring tools. Taking the project to crusty old male NHS managers was met surprisingly with a tick and a promise to pay for the tests. A conversation in a corridor prompted Sh!, a women’s emporium in London, to donate vibrators.
What happens when ‘science’ listens?
Forty women enduring radiotherapy to their vagina volunteered to test the vibrators and dilators. The trial showed no proven (or unproven for that matter) advantage in dilating or vibrating. Tons of extra learning noise though, sample size too small (just as in all those studies in the meta-analysisThe use of statistical techniques in a systematic review to combine the results of included studies. Sometimes misused as a synonym for systematic reviews, where the review includes a meta-analysis. ), perhaps a different studyAn investigation of a healthcare problem. There are different types of studies used to answer research questions, for example randomised controlled trials or observational studies. design should follow, (post doc work), lots of interest from other clinicians, so much in fact we decided to get together and look at creating best practice guidelines.
Two years on at the International Gynaecology Cancer Society Congress in Prague, I chaired a multidisciplinary gathering of some 10 countries, using the systematic scientific review and lessons learnt from the trial to encourage agreement on best practice. It took a year of multi national /disciplinary natter to create the International Guidelines on Vaginal Dilation Therapy[ii], a coup for science listening.
A change in practice
We agreed that we need to stop prescribing dilation during the painful phase of radiotherapy. It cannot be supported by scientific evidence and there is a riskA way of expressing the chance of an event taking place, expressed as the number of events divided by the total number of observations or people. It can be stated as ‘the chance of falling were one in four’ (1/4 = 25%). This measure is good no matter the incidence of events i.e. common or infrequent. that it could be harmful. Dilation can wait until the pain and tenderness has gone. We recommend that women are given the option to use vibrators instead of dilators. We ask that clinicians LISTEN to women; if they don’t want to use their vagina for penetrative sex, or if salvage treatment for recurrence is not tolerable, logic demands that there is no need to tell her that she has to dilate.
We updated the Cochrane Review Vaginal dilator therapy for women receiving pelvic radiotherapy in 2014, our findings unchanged, but we heard from more clinicians who are listening and want to learn more on how to talk to their patients about sex. We heard and went on to developing the guidelines on assessing and managing sexual concerns for women receiving treatment for cancer.
The Eve Appeal (the UK Gynaecology Cancer charity) provides a specialist information nurse service, Ask Eve.
Eve listens to women’s worries. Betty’s daughter recently called Ask Eve and said that the worse thing about her mother’s cancer treatment was the pain and revulsion as she tried to obey the instruction to dilate and stretch her vagina during the radiotherapy. Ask Eve reassured her that the new scientific position, supported by international guidelines, is that Betty can put the dilators in the drawer, rather than inside herself.
All the blogs in our series on sexual problems can be found in the blog The problem with sex: a taboo that’s harming patients?
Please note, we cannot give specific medical advice and do not publish comments that link to individual pages requesting donations or to commercial sites, or appear to endorse commercial products. We welcome diverse views and encourage discussion but we ask that comments are respectful and reserve the right to not publish any we consider offensive. Cochrane UK does not fact check – or endorse – readers’ comments, including any treatments mentioned.
[i] Miles T, Johnson N. Vaginal dilator therapy for women receiving pelvic radiotherapy. Cochrane Database of Systematic ReviewsIn systematic reviews we search for and summarize studies that answer a specific research question (e.g. is paracetamol effective and safe for treating back pain?). The studies are identified, assessed, and summarized by using a systematic and predefined approach. They inform recommendations for healthcare and research. 2014, Issue 9. Art. No.: CD007291. DOI: 10.1002/14651858.CD007291.pub3
[ii] National Forum of gynaecological oncology nurses. Best practice guidelines on the use of vaginal dilators in women receiving pelvic radiotherapy [PDF, 183kb]. July 2005. Published by Owen Mumford, Oxon.
Tracie Miles has nothing to disclose.
After having brachytherapy and given the horrible dialator a and have complied I still have vaginal stenosis. Too embarrassed to ask male oncologist about vibrator I searched the internet to find this article o am going to buy one and alternate between the two. Thankyou for taking the time to care.
Dear Kim, Sorry to hear that this is an ongoing problem for you. I’m really glad the blog has been helpful to you.
Wishing you well,
Sarah Chapman [Editor]
I have the same problem. No sex for 6 years and now its impossible, Very painful. I got a vaginal dilator..and moving in micro increments can get it all the way in with work, and going really really slowly. Still too painful for sex. Are there any other options for me.
I am 45 and was diagnosed with stage 3 cervical cancer in April 2021. I underwent the standard 5 weeks radiation, weekly chemo and 4 brachytherapy sessions. I am now 8 weeks post treatment. I was hesitant to start with the vaginal dilators as they felt so clinical and to be honest I was scared to put anything even remotely near my vagina after brachytherapy. My primary oncologist urged me to then rather try a vibrator as the “vibrations” can also help stimulate blood flow to the lady-bits. I have to say this suggestion paid off and I can see myself complying with the recommended 3 times a week use. I am so glad someone in the medical community is addressing this so others know there are options beside the horrible dilators.
Hello, I’m a 63 yo woman previously sexually active with no problems. I have not had sex for 7 years. I have just met someone and would now like to resume sex again but find that penetrative sex is impossible. The last time I had a smear test it was almost impossible and very painful to insert the speculum. My vaginal walls have always been quite tight and I remember one occasion managing to eject a speculum across the room much to the practice nurses astonishment! I had read the Miles article with interest. As far as I know I have no underlying medical condition that has caused this extreme muscle tension. So, can anyone advise me please as best course of action- will practice with a vibrator and a lube (such as Syllk) lead eventually to comfortable penetrative sex or is there anything else that will help. Of course, it goes without saying that patience, relaxation, an understanding partner, stimulation or arousal etc is also important. I have studied the stress response and have s PhD in this topic so i hope I have a good understanding of the psychological aspects of this issue. What I would like to know, I guess, is how many woman have found a solution to this problem and what things have helped
Is there any work planned for women using vaginal dilators due to LS?
Thanks – Terri
Hi. I am 53 and this year I took total 3 PRP treatment and therapy using dilator, cream and lubricant jel for a while. I started my own training constantly with different sizes of dilators and vibrators since September, once a 2 days, for 15 to 30 minutes. Now mostly not suffering, nor bleeding and things going well progressively.
What products & lubricants do you suggest?
I use the Yes OB, it’s the best I have used
Five years ago I was diagnosed with squamous cell carcinoma; vaginal cancer. I was treated with daily pelvic radiation for 5 weeks and weekly intravenous chemo. In parallel, I had brachytherapy. I did as I was told; dilating daily for 10 mins/day slowly graduating from the smallest to the largest cylinder. I’ve also been on a regimen of vagifam 4 x per week and progesterone. Also, I was unfortunate enough to have been diagnosed with lichen sclerosus. My poor lady bits.
I’m an active, vibrant 60 year old woman who still very much desires sexual intimacy. My problem isn’t so much elasticity but but vaginal scarring. I’m trying to find a source or patients who have had “ER” or “ND” Yag laser treatments to smooth out the scars and widen the vagina. I’d love to hear from you.
I have LS with fused labia minora & buried clitoris. Have had conventional surgery and laser treatment – helped for a while but koerbnerisation happened & I refused. Now using dilators, Tacrolimus and having borax baths to try to unfuse manually, but quite sore, some success but bleeding occurs on raw skin surfaces. Would happily try testosterone cream but gyro declined (believe me it would be very locally applied & I’d be on top of any signs of virilisation in a flash!)
Any other options out there? I also use a silicone vibrator, it’s a lot more comfortable but less girth.
I just had a full hysterectomy and it hurts to have sex. I love my husband and want to keep him happy. So I’m asking how can I have sex with out all the pain????
As a uterine cancer pt 9 months,ago I am glad to see research is being done,that could help tons of women
I am a regular contributor on an online cervical cancer support group. Many ladies there seek advice about dilators. They don’t want to use them and they think that the ones given to them by their hospital are the only thing they can use. If they do try, they are left frustrated and upset by their perceived failure in not being able to insert them. Or if they do succeed are very frightened by the pain and/or blood that results.
This article will go a long way to reassuring women in this position. I have shared it there. Thank you
Tracie invited me to talk about our health brochure at the NFGON Cancer conference as this was the reason it was created with Dr Alex Slack and Pip Salmon, WHPT at Tunbridge Wells hospital. Since then the health brochure has been expanded to include more suitable products and some silicone dilators which are more comfortable to use than the hard medical ones. The brochure is given out across the UK by HCPs from many disciplines, including WHPTs, GPs, cancer nurses,psychosexual therapists and our sexual health articles are recommended by all these HCPs and many support groups such as womb cancer support, menopause support and chris’ cancer community. As someone who has vaginismus I wish I’d been offered some advice beyond stress management. No mention of sexual lubricants or dilators. Being a commercial organisation we are ignored by many HCPs yet no one else is offering the practical advice I write using my nursing background or are aware of what products are suitable, what they should be made from and why you should avoid lubricants containing glycerin and parabens. Also many women are mortified to be advised to use a vibrator and to get one for a high street shop. Giving out a brochure in clinic and even having samples to show and play with helps many women overcome their embarrassment. Many women struggle with sexual symptoms for years and just want to feel sexual and sensual again, something using medical dilators don’t offer.
Hi…4yrs ago I was diagnosed with cervical cancer…had 2 cycles of chemo, brachytherapy radiation. I have only recently started using dilators as I was too nervous. I loved my husband but us nt being sexually active broke my marriage…like I said I have just started dilating, is it too late? Will my walls open up after 5 years? I want my womanhood back….would love too hear from you..