Hello ladies, hope you’re all well.
I have a question about the dreaded dilators! I finished treatment 6 weeks ago, and have been using the dilators for about 4 weeks. I’ve never had any issues with bleeding or pain, and managed to go straight to the 3rd one.
After using it this morning, I’m bleeding a little. Is it normal to suddenly bleed after no issues? It has been 5 or 6 days since I last used it and it was a little painful going in.
Hi, yes its normal! After radiation tiny bloodvessels come up to the surface of the vaginal walls. They bleed very easily. My gyn-onc showed me this on the colposcopy. As long as its not alot of blood and stops bleeding quickly after it started, its totally normal.
I too started immediately with the 3rd dialator. And didn’t have any bloodloss at the start. After a few months suddenly I lost some blood and I too freaked out. But its all good. I’ve been NED for nearly 2,5 years. Was a stage 2B.
Btw: pls try to use the dialator atleast 2 times a week to avoid narrowing of your vagina. Its really very important. I slacked in december 2019 and as a result my vagina got a bit narrow at the very top… its not all the way closed and doesn’t prevent me from having sex with my husband. But i can barely reach my cervix anymore (just one finger fits through the narrowed part). So yeah. And it STILL tries to close up on me. Its really really annoying.
Ahhh that’s my fear, the narrowing! I’m trying to use it 3 times a week but I just dread it. Thank you for your advice about the bleeding!
I have to use mine every few days otherwise I start to stick, I also bleed everything I use it, it’s absolutely normal
Use replens I use it even after 11 years! It will protect your tissues which will always be friable due to radiation . I get replens on prescription.
I really don’t think women are given enough help or information about vaginal dryness and the use of dilators. I have been lucky in that once I realised the KY Jelly was actually to ‘sticky’ for me and switched to SYLK I have not really had any discomfort. I started on 3 and moved to 4. I have never had any bleeding and it’s been 9 months - so maybe I have that to come…. But I agree with others that say that you must use it regularly. I do it 3 times a week - Monday, Wednesday and Friday. If I can’t because I have to go out too early, for example, I switch to the next day. I noticed that if I went too long between sessions it was harder to get in, and felt tender. Make sure it’s well lubricated. Just think that it’s a prevention measure, and something that has to be done, unfortunately, because of the radiation. If you’re having problems and it’s got very tight, get in touch with your support team and maybe go back to a smaller size and do it very regularly for 3-5 minutes a time to stretch the tissues, with plenty of lubrication. X
Thank you for your advice ladies. I’ve taken your advice Jacks, and am doing it Monday, Wednesday and Friday now! Much easier to remember!
How are you getting on with them now? I’m 2 weeks post Brachytherapy and have just used the smallest one. I used SYLK lubricant, I was very gentle. I could feel slight resistance, when I took my hand off it it was like my foof was pushing it out. Kept it there for maybe 3 mins turning it slightly. I am now bleeding a little though.
I think 2 weeks after brachytherapy may be a little bit early - I seem to recall 6 to 8 weeks afterwards for starting. Your foof will have resistance - you have to keep gently pressing. It shows your muscle tone is good, and that’s great! Also there are a couple of ‘bumps’ you have to get past - a big one and a little one, for want of a better term. I was taught to cough as I pushed gently, to get through. SYLK is great because it’s natural and doesn’t get tacky. Cover the doobry with it, then insert gently, turn a little, remove and put a little more on the end before inserting again, to make sure you’re well lubricated. Because I was so ill after my treatment it was over 8 weeks before I had my appointment with the nurse to learn to use them - so I was a late starter, but everything had healed up and I haven’t ever bled using them. Xx
Hey @Jacks133 hope you’re well!
I think I’ll maybe leave it a week before I attempt it again. Although it was the radiotherapy nurse who told me 2 weeks after last Brachytherapy.
Everywhere seems to have varied advice!
Glad to hear you’ve finished treatment. How are you feeling?
I seem to be doing better with the dilators now that I’m using them religiously 3 times per week - even though I dread it every time! I was also told by the nurse to start after 2 weeks, which I did and had no problems initially. Everyone is different though!
I also get the “pushing out” feeling, glad to know it’s not just me! I thought there was something wrong at first!
Hey @Joix ,
Oh I’m glad I’m not the only one with the pushing out thing!
The bleeding stopped immediately and I’ve had no issues today at all so taking it as a normal occurrence!
I’m 2 weeks out of treatment now, apart from constantly being told I look pale/ill I’m fine.
I went and bought new make up to get a healthier glow to shut people up.
Energy wise I’m about 90% back to normal. Hubby back to work now too.
Found out I’m entitled to 10 free counselling sessions through my work and I’m seriously considering using it to just get myself mentally as well as physically into better shape before I go back to work.
@AMF How are you?
oh I’m so pleased yours did that too. Very bizarre feeling lol!!! I knew and expected the entrance but didnt think it would try to make it’s own exit!
I was a ’ bleeder ’ because of the stenosis and had maybe 3 slight bleeds during treatment. The team were unconcerned so obviously it was my normal.
I’m good thanks. I had a scan 7 weeks after treatment ended which showed tumour had reduced further but still present being adenocarcinoma it can take longer to shift. Doctor not concerned have appointment for further scan in February so we’ll see what the situation is then.
Physically I feel back to normal no side effects as yet although I know they can start up at ranytime.
I go back to work on Monday for 4 hours a day looking forward to that and Christmas
Thats great it’s still reducing! Preparing myself to be told the same thing. Pesky Adenocarcinomas! I know already mine has reduced but dont know by how much. Its difficult just sitting back and letting the radiotherapy do its work.
For now I feel relieved that I’m going to be myself (mostly) over Christmas.
Adenocarcinoma doesn’t respond immediately to treatment I had to wait 6 months to show NED. Regarding the dilators, I had spotting 6months post treatment but it seems to be normal. I used SYLK and now I started YES lubricant which it works from me. When I finished treatment the NHS provided some standard plastic ones dilators which I used for a year. However I have shifted to a different brand now following consultation with the consultant, for more comfort and because I hated the fact that they looked as a medical instrument. Just to let you know that there are options in the market if you feel uncomfortable using the ones from NHS.