Sex and cancer - Let's talk

I’ve been following the thread and have seen that the posters are so far men, which has been a bit of a revelation, but wonderful that several have shared their experiences so honestly. 

I have been a little surprised that there are no women contributing to the thread when we assume that women  might be more Iikely to share, especially on the subject of intimacy. I have perhaps been guilty of not contributing so far and maybe should, to show another viewpoint and perhaps encourage any other women lurking on the thread to come forward as I do feel quite alone with this.

So, my situation is that had major surgery to remove all the organs in my pelvis, including my reproductive system, which some might feel is the key to being a woman. To be fair, I don’t feel like it is crucial to me as a woman-I was post menopausal when I was diagnosed with cancer so it wasn’t an issue in terms of needing these parts to have babies.

However, something I did have removed which was much more important to me was my vagina, and I have  not seen this mentioned in the community by anyone. The fact that I can never have sex again is a huge deal-I was only 57 when I had my surgery. It seems that this is not mentioned by anyone, there’s never been any sort of discussion around it when it happened to me and it seems like I’m not supposed to mention it to my surgeons or consultants. 

It was glossed over, when the long list of things to be removed was given to me prior to surgery. It seemed more important that I needed to lose my bladder and rectum-both life changing things in themselves, but it seemed losing my vagina was less important somehow. It’s really not!

I’d be really interested to hear from any other woman who has had to deal with this life changing event if they might be brave enough to speak about it. It feels pretty lonely being the only person who has been affected by this so I’d appreciate anyone else coming forward to share their experience if they can-surely I cannot be the only one? Meanwhile I’d like to thank all of the guys who have shared so honestly of their own experiences. 

Sarah xx

Hi Sarah,I’ve been reading this thread and wanted to post.I’ve been reluctant as I know my partner like me is private about intimate stuff.All I was told before bladder removal was that the vagina would be made shorter and sex might be painful.I got the impression my surgeon didn’t want to discuss this side of the surgery more because my sister was with me and he is quite shy.I was so ill that I wasn’t thinking about how the surgery might affect a physical relationship.Now over 4 years later I feel incredibly guilty that I am not back to a full physical relationship with my long suffering partner.He has his own health problems and that has added to our difficulties in moving forward with the sexual side.Like you I feel this subject was glossed over in the pre op discussions.I’m far more concerned by how different I feel internally than by the fact I have a stoma.I would have liked some guidance on this subject.It will be interesting to see if any other women share their experiences.Perhaps not as many women are affected as men ? Thanks to all the men who have shared their stories.Jane xx

Hi Sarah and Jane, thank you for sharing, I do hope there are some ladies out there who will be helped by your experiences and how they impact you, and hopefully some men as well, I did come across a thread. sorry I can't remember the forum but the title was, we are not men anymore, and a couple of ladies did contribute with experience similar to yours. I think the main reason it's mainly guys on here and prostate cancer effected 3 of us is because treatment for prostate cancer very often causes erectile dysfunction, though on the prostate forum we are ok talking about erectile dysfunction.

Eddie xx

Thanks to everyone - men and women - who are contributing to this conversation. I think the more we talk about this the better, as it will enable more people to talk and understand these all these sex-related problems. And by "everyone", I include the medical professionals, who are often more reluctant to talk about sex-related matters than us patients, even when they are about to inflict major damage on our sexual organs.

I agree.This is an important issue and one that affects men and women and their partners.

Hi eddiel 

I recall the thread you mean and I did post, but it wasn’t something I wanted to contribute further to. This thread has been a much more useful one to read in respect of how everyone has come or to is coming to terms with the changes and challenges they have faced. Women face big challenges too after radical hysterectomies but I guess the actual physical effect of erectile dysfunction is something that’s there in front of you as it were, rather than a part of what’s going on inside. 

Sarah xx

Hello Jane & Sarah

Thank you so much for posting - the common thread for you both - if you don't mind me being blunt, is at the Pre-Op you were told the essentials about the removals because of the cancer but not how the operation would affect your ability to have intercourse after the operation.

It's the same here, surgery for men "You may well suffer from ED" and Hormone Therapy "there will be side effects" and if you are lucky, here's a list.

The big issue for men is - most are proud, shy and stubborn and if they would listen to their body - seek treatment earlier -(me included!!) then they wouldn't have this issue later down the line.

It's easy to think - I will be back to normal - and yes I may well be at some point in the future and I have an understanding wife - I DO feel for you two Jane and Sarah and many like you who may never have that thought.

Thanks for sharing and being here for us - Brian xx

Thanks Jane for sharing your story. It was glossed over for me most definitely because I was having my bladder removed and I guess the medics just thought that everything was going so no need to have any discussion about it. Not mention of the psychological impact. 

Like you, I was in immense pain before my TPE surgery and all I could think about was getting rid of the cancer and the pain. I wouldn’t have decided to do anything less than the total surgery because of the risk of recurrence, but would have appreciated having some kind of counselling to come to terms in time with how my body has been left and the fact that everything is irreversible and permanent. 

Sarah xx

The thing is Brian-I have NO vagina at all. Not a little bit of one, a shorter one or anything at all. To be blunt I am sewn up inside, it has been totally removed, and there is NEVER going to be sex again. That’s something that many people, even women, don’t not seem to understand. It won’t come back in time, it will never be possible again. I won’t be better in time-that is gone forever.

When a woman loses a breast, the visible scar is a permanent reminder of what has been lost. When you lose your vagina you can’t see it. It’s gone, but there’s no scar other than the psychological one and the in internal healing. A man losing his penis may be the only person who can truly understand what this is like.

Sarah xx

Hi Jane

Yes I was aware of that fact - and am so sorry - I know the effect and the anguish it must have caused you. I can only apologise if you thought in my last statement that you may recover - it wasn't intended to read like that!!

I do think there should be more resources put into the issues of sex and cancer as it does crop up on a very frequent basis on the Prostate Forum. I can also understand that for females there should be more investment in reconstructive surgery as look do matter.

Kindest regards - Brian xx