Vaginal Dilators

How good that you have raised this topic. I am now 71 and up to my cancer diagnosis 20 months ago, had an active sex life. ( yes, you can at that age!) Since finishing my treatment I have only used the dilators a few times, but because of the pain and bleeding, I have given up. Therefore a very limited sex life now! It doesn’t really bother me, as I have also lost my libido. 

I am not too concerned about myself. If I have to have an internal examination, they will have to give me an anaesthetic. However I do feel concern for those of you who are mostly younger than me. 

My oncologist suggested using a Vibrator from the Love Honey website, and using topical lidocaine to numb the area. I haven’t tried it. 

It will be interesting to hear the views of our fellow strong, exclusive group of survivors. 

Best wishes,

Pam

Oh, the dreaded Delightors!

I think we all get handed these graduated cigar tubes! And advised where to stick ‘em!

We did have a competition on here once, prizes for suggestions on alternative uses! 

Prior to treatment I knew I already had post menopausal shrivelling, as my last smear test had been an ordeal! Due to late husbands’ erectile issues following bowel cancer surgery, penetrative sex had been off the cards for over ten years prior to my diagnosis.

One lady who was on this site a couple of years ago, posting from Germany, said she had a vaginal pack inserted during her treatment. I guess this is similar to the proposed “butt plug” for men undergoing radiotherapy  for prostate cancer. I think a vaginal pack would be sensible for women in our situation! 

I was told to wait about 6 weeks before using said delightors, but after a first attempt with no success, I ditched the idea. One of the girls suggested the Love Honey site, and after the shock/horror and uproarious laughter, I did buy a very small slender vibrator! You live and learn!  No success there either, so surreptitiously ditched it in case I died and the kids found it! Much hilarity from daughter! 

Suffice to say, couldn’t use ‘em, so haven’t. Five years on, there has been progressive vulval ‘shrinkage’, and the dilators would have had no effect on that. My understanding is they break down the developing scar tissue causing micro tears, leading to more scar tissue. The tissues are no longer elastic.

I notice as treatment becomes more targeted and less aggressive, the general fallout appears less, although still annoying. 

Every bit I need works ok, as long as I stick to my rules. And I lead  a normal life, many of the early side effects seem to have abated. What are Now side effects, and what are age related is hard to define, I’m now 71. 

Life is good! 

Much love to all, especially Nikki and Sarah, you’re doing a fabulous job of supporting folks! 

Mary

Hi there,

I ordered the set of dilators - not covered by our medical system in B.C., Canada - for the cost of $65.00.  A prescription was written for them, but, still not covered.

Anyway - as it turned out, I end up NOT using them and they remain in their original packaging.  My husband and I did attempt intercourse - very slowly and very gently, but it took us a year after treatment before we were successful.  I felt like we had climbed Mount Everest and was disappointed that this was something that we couldn't openly brag about!!  :-)

After far as "changes" to the vagina and vaginal area - yes, there was stenosis and I still feel the effect of that - intercourse in never undertaken without lubrication.  My labia minora (and I suspect the Bartholin Glands) just atrophied and disappeared - as well as my libido.  Although I occasionally have small bursts or rapid fire of libido, generally we are not at a place where taking advantage of those moments would be anything but frowned upon ..........

Good luck - time, patience, and perserverance should all work for you.

Lovng the comments from Pam and Mary.   At 74 I can well relate to some of them!

Good to try to keep a sense of humour if possible.   Just hope you younger ladies have some success!

I have the Russian dolls but found using them so weird I gave up.

Instead every time I have a shower I put a couple of fingers up inside my vagina and stretch it a bit, not so hard that it hurts. there’s a tight band of something in there, it’s not all shrunk.
I do that a few times for a few seconds a go and it does seem to be working.

xx

T

Sounds like a good idea! I’ve just had a go with the second largest Russian doll. It brought a tear to my eye I can tell you!    It is weird using them, I just sat there reading and it kept trying to pop out. I kept shoving it back in. Am now in a salt bath recovering from the ordeal :) ! X

Hi

I've been trying with these for a couple of months now , only got to the 2nd size but have just been told that Ann summers do a range called 'my viv ' they have a set of 3 dilators made of silicone for £25 , I've just ordered them and got 15% off for signing up , I'm hoping with them being silicone they should be more flexible and more comfortable to use .

Xx

I haven't been on here for couple weeks so just catching up on posts and was also going to put a post up about dilators.

I've been using mine for the past month, took me weeks and weeks to bring myself round to the idea of trying them and knowing that I had to for my own long term benefit. 

I found size 1 not too bad eventually and this week have tried the 2nd one. I've found the easiest most comfortable way is to use the first one for five minutes then slowly insert the 2nd. I just can't do it going straight in with size 2.

My partner and I tried to have intercourse last week as it was my 40th and thought oh what the heck we'll give it a go. That was a complete no no!! He quickly got pushed away and I burst into tears. I really hope one day we'll be able to try again and it will be ok! 

Does anybody who has the dilator pack with the Sylk lubricant know if you can get this on prescription, I'm sure I read somewhere you could but really no idea.

Claire X

Hi 1in1500

Just reading through everyones messages regarding this and will share my experience.

I’m 16 months NED and haven’t regained my sex life, yet! Don’t let this worry you, there are reasons why and I’m still hopeful I’ll get it back.

On reflection, I’m quite annoyed that my medical team didn’t pre-warn me about how radiation could change my vulva and vagina. I was given the dilators towards the end of my treatment and told to use them every other day for 10/15 mins once my skin had healed. Nothing else was really mentioned and as I was dealing with the short term side effects I didn’t probe further.

The treatment has left me with vaginal stenosis and my labia have shrank considerably and also fused in one area. This doesn’t cause any problems though, just looks a lot different to how it used to. 

My skin reaction was severe so I didn’t start using the dilators until 9 weeks post treatment. The first time I used them it was a shock to feel how much things had narrowed and how sore internally I was. I have a love/hate relationship with the dilators, I go through stages where I use them regularly for a few weeks, then I have a few weeks when I don’t use them at all. 

I started with no.1 and quite quickly moved to no. 2 however, I was stuck on this size for months. I remember discussing this with my oncologist who said “try the real thing you’ll be more relaxed” if only it were that easy! He also told me to persevere as it can take a while. I ditched the lube that came with the dilators and use a product by YES which is much better:

https://www.amazon.co.uk/organic-water-natural-personal-lubricant/dp/B01B0QBPPG/ref=sr_1_5?crid=34U9VSOJNPGEU&keywords=yes+lubricant&qid=1574553524&sprefix=yes%2Caps%2C201&sr=8-5

I managed to progress to no. 3 by inserting no. 2 first to loosen things up. I can now use no. 3 on its own with lubrication. My oncologist told me if I could use no. 3 then I should be able to have sex. He said it would be unlikely I’d ever progress to no. 4.

I have tried to have sex a few times, usually after a few glasses of wine as not only has my libido gone out the window, I don’t feel relaxed because I’m worried it’ll hurt. My vagina seems to have narrowed the most at the entrance. Past that things feel less narrow and more flexible. However, on attempting sex I tend to chicken out once my other half is about half way in. Its not terribly painful but  feels very tight and like something might tear.

The treatment has also put me into early menopause. Whilst I’ve not noticed any obvious symptoms I know this will also effect the condition of my vagina. Oh the joys!

I recently visited my GP for advise, she wasn’t particularly helpful or knowledgeable about AC/vaginal stenosis. However, she prescribed me some oestrogen tablets which I’m currently inserting twice a week but have yet to notice any difference. I’ll keep you posted.

As well as the physical challenges, there’s also the mental challenges. This side effect is now my biggest headache because I worry about how it will affect my relationship. My other half is very supportive and patient however, I know there will come a time when the lack of sex life will start to cause problems, he’s only 45 and I’m 48. The last time we had full penetration was almost 2 years ago! Sometimes I feel inadequate and unfeminine and wonder if a life of celibacy is ahead of me. Other times I feel more positive, use the dilators regularly and feel hopeful. I know I could be trying harder and attempting sex more often, but at the moment I don’t have the desire or energy so it kinda gets brushed under the carpet.

Just writing this is motivating me again. So I plan to hit the dilators big time again next week, setting alarms on my phone to remind and prompt me. I’ve also been advised to masturbate regularly to try and increase my libido (sorry if thats too much information) so might give that a go to.  

I’m active on an American AC forum where this side effect is discussed regularly. They advise I see a gynocologist. So when I have my next check-up in January I’ll ask to be referred. They also talk a lot about pelvic physiotherapy which many of the woman on the forum have tried with positive results. Again, I’ll enquire when I have my check-up.

In the meantime, if I make any further progress I’ll let you know.

Like most of the side effects of this treatment lots of patience, persistence and positivity is required. 

Keep going ladies, don’t give up!

Sx

It would appear that not many of us were given very much information on using these dilators!

I had excellent treatment (still do) from the two Sheffield hospitals I attended and can't thank them enough for the fact that I am still here and everything is fine two and a half years since diagnosis.

My experience was that a young nurse just gave me a box of dilators without much explanation and gave me an appointment to see her at the end of my treatment.   She wasn't there on the day of the appointment and I never was followed up.

I know I could have asked for another appointment but just got on with it!   I think the main thing lacking from my point of view has been the lack of information about late effects, most of which I have read in the Macmillan publication 'Late effects of radiotherapy'.

I have managed the dilators and a reasonable married life for an 'older lady' but do feel for you younger ones!

Keep trying x

Beryl