Sex!

Right, I'm just going to put this out there - how has having cancer affected your relationship? How do you feel about sex after your op/treatment? I know this can be a very private thing, but I also am 99% certain that I am not unusual in my feelings about it, and I'm thinking that maybe if I raise it here it might open up a discussion about it. There are so many difficult things that get discussed on this forum, and it's so great that people can be open here and able to get support, so I thought that if anyone else is dealing with this issue as well, it would be a shame not to be able to get the same kind of support - just another part of the roller coaster that is cancer I reckon!! 

Ok, so. I had a radical hysterectomy on 1st November. Obviously in the first few weeks I felt awful because of general post-op stuff, so sex was the last thing on my mind! A difficult feeling I had in those first few weeks though was that I felt that I had been mutilated. I found the idea of what had been done to me in an operating theatre very distressing and some of my feelings were not dissimilar to a feeling of violation, even though what had been done was in order to save my life. It was a real shock to me that I felt like this - I really hadn't anticipated that. 

Now, four months after my op, my 'new' body still feels strange to me. I had a check-up with my consultant a few weeks ago and that made me think that in some way, I am just totally fed up of being messed about with and that I want to be left alone - I'd quite like my body to myself for a while. 

More specifically though, I think I am finding it difficult to think about my gynaecology in any sort of pleasureable way. Of course, because of the surgery I've had, my vagina is shorter than it was, and is sewn up at the top, and I find it hard to think of it now as anything other than a superficial vault that is shut off from the rest of my body. As odd as it may sound, I think I find it hard to see the point of my vagina anymore! I don't really understand what it's for, now. Cancer has also knocked my confidence and I feel very far away from being an attractive, sexy woman. I have been left with a short, sewn up vagina which has since developed a prolapse, a cross bowel and adhesions which cause pain - I am 39 but I feel old, actually. 

I love my husband and I want to be with him, but I am also aware that I am just not ready yet. On the one hand, I feel that if I'm just not ready, I'm just not ready (and this is exactly what he says, as well) but on the other hand, this is upsetting in itself because I also can't imagine when I will be - I can't imagine ever being able to feel ok enough about my 'new' body to be able to share it. I'll be honest, we have tried a couple of times, but on both occasions I burst into tears (attractive!!) and on the second occasion I was aware that I just couldn't feel very much and I had to put a stop to it because it was just too upsetting. I can't imagine sex ever being anything other than a cruel reminder of eveything I've lost. 

I'd be really interested to hear about other people's experiences with this issue. 

Love, Annabel. x

Hi Annabel

I totally can relate to the way you are feeling. I am 27 and 6 months post treatment and feel the same way. I simply am just not interested in sex the way I used to be (or at all to be honest) This might be the HRT, but I think time is the most important thing here. I tend to think we are way too hard on ourselves and November was not that long ago! This is all quite an ordeal on our bodies and I do hope that with time and support we will come through it.

I have the most amazing partner - we haven't had sex properly since last July (at diagnosis) and he has been with me every step of the way. We have tried a couple of times but I was the same, burst into tears - but more so because, it was painful and shortnened/shrunk from stenosis - Also I was the same as you - I couldn't feel anything? It was like painful but numb.. So...I have a plan....I have been using the dialators EVERY day for 15 minutes. no excuses - i absolutely H.A.T.E them but it's what I need to do. I am also seeing a HRT specialist - I will discuss getting some Testosterone put into my HRT as naturally we do produce a small amount - I have read this may increase my sex drive.

I think the fact that you have given it a go a couple of times is an amazing feat...I was so petrified to try it I just ignored it and in the end - my partner was like...look..lets just give it a go, we might be stressing over nothing...and yes - it didn't work 100% but we now know that and I am dedicated to get back on track. IT is incredibly hard though and half the time - I just want to go 'stuff it' and flag everything..but we mustn't.

The one thing that keeps me going is that things have gotten better. Shortly after treatment I was convinced that noone ever going near me again and slowly but surely things are coming around. I know it's never going to be the same but it is important to me to try get back to 'normal'

This has turned into a novel but I just wanted to let you know that I know how you feel and thanks for your post!

Love, Vicki x

I know I am not in the same situation as you ladies and am lucky that my situation never turned out to be cancer, however I can totally relate to the sex issues. Mine is obviously much more mental that physical but since my cervical issues my interest in sex has plummeted. I am paranoid about it hurting or me bleeding which makes me nervous which doesnt really make for a nice experience! My bf is completely understanding but I end up getting frustrated at myself tbh.

xxxx

Hi Annabel,

 

just sent you a pm then saw your post and am so thankful for you raising this issue as I'm in the same position as yourself and Vicki in terms of the change to vagina after treatment/surgery.  Also as Hula says, this is a mental thing too.  I worry that I wont ever be ready physically and the fatigue also doesn't help as quite honestly I would rather sleep than have sex right now. We talk about it though and I have explained about the dilators and that I'm only on the 2nd size.  Tried the 3rd size but bled and found it difficult to insert.  Need to get to docs as someone recommended Replens and Silk for use instead of KY.  I do want to have sex as want the intimacy back but think I'll need some help in "getting going" if you know what I mean Embarassed. I think we can conclude that we ar quite normal in that we all have the same fears.  Thankyou for raising this as I thought it was just me!!!!

 

thanks ladies, as always

I thought it was just me!!

I have been  so nervous about trying as it all seemed 'different' down there  but we have tried to have sex 8 weeks post op and it was so painful we had to stop. Hubby has been great about it all but i would like to think eventually we will resume ' normal ' intimacy.

I agree Annabel i feel a bit unintentionally violated:((

Thanks for the post. Made me feel less inadequate.

Kath xx

Hello Ladies!

Sorry, didn't mean to 'post and run' - it's been a bit of an odd and busy week.

I *knew* it couldn't be just me - I'm so glad I posted this thread now (I nearly didn't do it!)! So yes, we are all normal in our difficulties and general lack of interest. As Andrea said, I'd rather sleep - and in my very unsexy but unbelievably comfy tartan pyjamas, too - than anything else. I'm just not in that place at the moment.

I thought 'painful but numb' was a really good way of putting it. That's exactly what it was like for me the last time we tried - I sort of couldn't feel much, but what I could feel was uncomfortable. I think what I mean by that is that I could feel it, but it didn't feel like sex, it just felt like something uncomfortable. I think as well that perhaps the first few times we will be so 'on alert', assessing how it's feeling and whether or not it's ok, that maybe actually feeling pleasure or anything like it used to feel is just unrealistic. It probably is going to be different, and it probably will take time to adjust to those differences and work with them.

It's really not my sort of thing to get very gender specific as I don't actually believe that men and women are that different when it comes down to what really matters in life. But one thing I would say is that I think there is something very specific about the act of penetration which makes women incredibly vulnerable in sex. When we've had the kind of things done to us that we have - probably mainly by male doctors who nice as they may be, don't really 'get' it - it's probably not that surprising that we don't feel all that up for bedroom acrobatics. As has been said, we put an awful lot of pressure on ourselves and I think society tells us that we are the ones who have to make our relationships work. I'm going to be very crude now, so look away if you're sensitive, but as my husband said, "If some surgeon was casually saying to men 'I'm going to have to chop your bollocks off and slice off a few centimetres of your cock, but you'll be back to normal in a few weeks and there's no reason why you shouldn't be having sex within a couple of months,' men would be screaming in the streets!" He's right you know. We should give ourselves a break! :-)

Thanks so much for commenting on this thread - it's so nice for us all to know we're not alone in this!

Much love to you all,

Annabel. x

Great topic to discuss thanks for raising the issue as it helps to read stories and realise you are not the only one in the world!!

I'm 33 and finished my chemo and radio/brachytheraphy for early stage 1B in October 2012. I was incredibly lucky in that I didn't have any pain or soreness post treatment in my nether regions!! I did not have a hysterectomy but did have 2 op's prior to my chemoradiation.

I made a concious decision that I would like to get back to having sex with my partner as soon as I felt I wanted to as I saw this as 'getting back to normal'. I also didn't want to leave it too long as I felt I would just become more scared.

I remember the first time and hand on heart I can say that no it wasn't the same as before but I didn't have any pain it just wasn't as comfortable as it was previously.

I cried but this was because I had had enough, I had had enough or this thing ruling my life and ruining my normality and at that point I wondered if things would ever be normal. I also cried because I wondered if I would ever be able to fully enjoy this experience with the person who I loved more than anything who had looked after me throughout this whole thing. Like you say that area of my body had only been touched in a medical way for the past 6 months it was so hard to think of anything other than all my treatment during what was supposed to be an enjoyable act!!!

I also made a concious decision to use my hideous dilators 3 times a week as I had been advised to, there was no way I was going to let my treatment seal up my fanny!! This was not going to get the better of me!!

So where am I now, I got the all clear in January and I have been using my dilators 3 times a week. My partner and I have a regular sex life. Yes ok it's still not as comfortable as it was and I still have that little cancer monkey in my mind each time but it is easier and the more we do it the easier it becomes and the more I learn to enjoy it and forget!! So yes maybe one day it will go back to normal, I have to say it's purely missionary position as certain other ones I have tried and they are not so comfortable!!!!!!

So keep at it ladies and I guess that one day our bodies may feel more like our own again after all the proding and poking by medical teams!!

 

Does anyone else find it amusing that their dilators are pink and come in a handy glasses case, presumably so you don't get embarrased when they fall out your bag at a restaurant!!!!!

 

Keep well and keep strong xxxxxxxxxxxxxxxxSmile

Wow, honesty at last, , I'm so sick of being grateful for getting rid of cancer and not mentioning the fact that sex is painful and my bowels have a mind of their own.

I am grateful that my treatment has worked but increasingly dissatisfied with how it has left me. I was so sore after radiation that I neither had sex nor used the dilators for months. When I did force myself it was awful, my vagina felt so short it was as if my partner was banging against a brick wall. At my last check up the doctor was unable to examine me properly due to stenosis of my vagina. Now I have an appointment for an operation to open the vagina, after which the awful dilators will have to be used. i am dreading this. Does it ever get back to normal?

Wow, honesty at last, , I'm so sick of being grateful for getting rid of cancer and not mentioning the fact that sex is painful and my bowels have a mind of their own.

I am grateful that my treatment has worked but increasingly dissatisfied with how it has left me. I was so sore after radiation that I neither had sex nor used the dilators for months. When I did force myself it was awful, my vagina felt so short it was as if my partner was banging against a brick wall. At my last check up the doctor was unable to examine me properly due to stenosis of my vagina. Now I have an appointment for an operation to open the vagina, after which the awful dilators will have to be used. i am dreading this. Does it ever get back to normal?

I'm so glad I raised this topic! :-)

I don't know if it ever gets better. I guess that's different for everyone and time will tell, but I can't imagine it will ever be the way it used to be. I don't think that necessarily means it will always be 'not as good' as it used to be, but I do think it will always be different. I guess the challenge is to find ways of making it good again within those changes. 

I think there is a tendancy with people who haven't been there to think that because you haven't got cancer any more, everything's fine and dandy. A lot of the issues that we're left with wouldn't even occur to most people, I am sure. As you say, I am grateful that my treatment has been successful, but that doesn't mean that everything is fine now and I can just 'get back to normal'. I've been left with various issues. For example, I've done very little today because I've been in pain, and I'm absolutely sick of the sight of the bathroom - my bowels have decided again that they just don't like food anymore! It wears me out and I'm both fed up and cross about it. 

I am sure (hopeful!) it will get better in time, but it seems that recovery is a long road, with all sorts of things popping up along the way. Sex is just another one of those things, so I reckon we should talk about it just like we do with other things.

Much love,

Annabel. x

 

Hi Ladies,

Just wanted to chip in to echo what you’re all saying - it’s good to be able to air the really awkward and embarrassing stuff too, I think (as you’ll know if you’ve read some of my other posts).

I haven’t been brave enough to put anything inside myself since the hysterectomy 8 weeks ago. I kind of want to have a feel inside myself to see what the vaginal cuff thing feels like but I’ve been too scared that I’m going to discover something awful - have read too may horror stories on forums, I think. Maybe next week…

Despite numbness in my leg and pubic area since the op, I know I can get to orgasm, but it feels much more of a ‘surface’ thing now that my cervix and uterus have gone. I do feel very sad about that. I know that the oncology team are focused on saving your life, but I wish I has been better prepared for the potential physical and emotional after effects of the treatment. All my nurse said to me was that if I had a reasonably normal sex life before there’s no reason why it can’t continue. Not sure that was very helpful… what’s normal?

I am so restless at night, with overheating, sweating and trips to the loo and so on, husband has taken to sleeping in the spare room. The sweating is a nightmare - can’t even stand cuddles. Still, we’ve had a couple of nights away in a nice hotel in the last week or so and a bit of time away together and some pampering has been very beneficial, I think.

So, as others have said let’s take it easy and trust that things will get better with time - where there’s love there’s hope.

Hugs xxx

Well, I think it's safe to say we're not unusual in our post-cancer sexual experiences (or perhaps lack of them!)! This is one of the wonderful things about this site - you often realise it's not just you! 

Annemieke - you know, I bet you're not at all unusual in that conclusion - I can completely understand how you could get to a place where you think it's just not worth the bother and the upset. I think it becomes a different thing after cancer and there is so much other kind of significance attached to it. 

Rosehip - eight weeks is still so soon, so I'm not surprised you haven't tried that; I know I definitely hadn't at that stage. Like you though, I was curious to 'test' my orgasm status! After I'd been diagnosed, I asked my consultant if I'd still be able to have an orgasm. Lovely though he is, he immediately rattled off some scripted stuff about orgasm being caused by the release of oxytocin and that would still happen. He was looking at his shoes - rather than in my eyes - when he said it though, so I was suspicious. I pushed the point by pointing out that when I orgasmed I could feel things moving that my oncologist was about to cut out of me, so surely that would affect it. My cancer nurse was in the room at the time and she took over and started going on about how some people can orgasm by having their ears stroked (or some such nonsense - meanwhile, consultant still fascinated by his shoes!) and I just thought "Right, well that's that then!" As it turns out, that hasn't disappeared, and the first time I discovered that, I was so happy that I wanted to ring my surgeon and say, "Guess what? Guess what?!" Thankfully I thought better of it, and my surgeon remains oblivious to the extent of my sexual pleasure. What I have found is that even though I still can, it's a bit of a pale imitation of what I used to experience. Whether this is just how it is now I guess will only be known in the fullness of time, as will the extent to which the psychological issues may be affecting it. But realistically, I can't really see how the extreme surgery I've had can't have had a physical impact on it. Like you, Rosehip, I feel sad about that. I feel sad about all of it, actually. I feel sad that the man I love, who was with me throughout all this and who loves me so much and just wants to show me how much he loves me, gets met with a shaking, weeping wreck!

I agree that where there's love there's hope and I do really believe that with kindness to ourselves, as well as engagement in honesty with our partners about how we're feeling, then there's a real possibiity that it will get (lots) better, but I do think it's probably bound to take some time. 

With love,

Annabel. x

p.s. I think things like spending nice time together, going away overnight (not to have sex, but just to have special time together) and having lots of cuddles (when we're not having menopausal symptoms!) are all bound to help on this long and unpredictable road. Xx

I haven't been on the forum for a while, moving house has taken over.

Rereading my post on the subject of sex I realise it reflected the anger and frustration I was feeling at the time, as we all know this whole journey we are all on is a roller coaster of emotions. Six months on, things have progressed and I thought I'd update with  my own experiences.

My appointment to discuss the operation to "free up" my vagina resulted in the consultant being able to part the lesions with her fingers and a speculum, I wasn't even expecting an examination so whilst this was a complete surprise with hindsight it was probably the best thing to happen as I would have worried and stressed about the appointment if I'd realised there would be an actual procedure. It was uncomfortable but not painful. I was under strict instructions to use the dreaded dilators every day for two weeks, if I didn't then the lesions would reform and I would have to have an operation after which I'd still need to use them so may as well get on with it straight away if I wanted the use of my vagina back! I had avoided the dilators for a year so you understand my level of fear of them. Using lots of lubricant, starting with the smallest one and having complete privacy I managed it every day for two weeks. I admit that initially I used painkillers and even a glass or two of wine to relax, it worked for me and eventually as my confidence grew that it was achievable I managed without. My CNS nurse was very supportive, calling twice to see how I was getting on.

So after a few weeks I was able to use smallest and next size up dilator, the third size I could only get 3/4 in and also used a longer but slimmer vibrator (not switched on) I had bought myself. I still dislike using them but knew I had to and was quite relieved after thinking for a year that I would never he able to have anything inside me ever again that I had overcome the obstacle.

On to sex. I am going to put it in my own straight forward terms so apologies if I offend anyone.  My success with the dilators gave me the confidence to try sex again. I found it quite painful, the more friction and thrusting the more pain, also he seemed to be hitting a brick wall when only half way inside me. We have tried a few times, I just grin and bear it, when its over I don't have any pain but during the act it hurts. As we can only achieve this half way in I use my hand on the rest of his penis and finish that way. There is no pleasure at all for me, although I can still orgasm using fingers so I still work! 

I have had the opportunity of speaking with a therapist who specialises in getting ladies who have had cervical cancer treatment back to a satisfactory sex life. When I asked her why at my check ups my consultant seems happy that my vagina is ok for the speculum and space seems fine but I experience pain when having sex she explained there is a difference between capacity which is what is needed for the check up examination, and functionality which is what is needed for sex. Sex involves friction, whilst using the dilators and speculum is a much smoother process. She advised me to try different positions, me on top controlling angle of entry and depth of penetration. Also to ask my GP for topical oestrogen to put in my vagina (not looking forward to that) in order to improve the cells in the vagina, making it less sore when friction occurs. We haven't tried sex since this advice, but writing this has inspired me to give it a go soon. I really want to regain the ability to have sex which isn't painful as a first goal, and even enjoyable as my ultimate goal. 

 

Thank u ladies for posting all of this. 3wks post op now so thinking forward to what may happen, u have all made me feel a bit better incase it goes wrong...

does anyone else have anything to say on the subject?

thank you xxx