Treatment/surgery flashbacks 4 years on, any women who have had pelvic radiation?

Hi Jo 

I felt really sad when I read your post. It must have taken some courage to write it. I am so sorry you have been going through so much suffering and for such a long time. 

Reading your story reminded me of my own experience. I had pelvic radiotherapy in 2014 for womb cancer that had spread to lymph nodes in my pelvis. I had 30 days external radiotherapy and three days of internal. This was after surgery that tipped me into a surgical menopause and six months of chemotherapy. Like you, it ruined my sex life. I was exhausted, I was traumatised and had no hormones to drive any desire to be intimate. HRT was off the menu for me too. The surgery involved removing my cervix which changed how I experienced orgasm. And don’t even talk to me about dilators! So clinical and devoid of any sense of anything to do with love and intimacy. 

Nine months after it was all over, the cancer was back. Like you, I wondered whether it had in anyway been worth it. To add insult to injury, I developed lymphoedema in my leg a year ago.   

I realised that very little is said about the impact of cancer on our sex lives.  I sought help via this community and had a helpful reply from a sex therapist on this community (I think I have it and will forward it if I can find it). My husband and I found a way to have intercourse. I found the lubricant Sylk really helped (you can get it online).  Ultimately my husband wasn’t able to cope with the situation and left me and our daughters to start a new family with his ski instructor. Talk about a cliche. 

So. What am I saying? I’m really not trying to start a pity party. It’s more that I think I understand some of what you’re going through. Looking back, I am not sure what I would change. I think I would seek more in depth help earlier. 

There are differences between us. I don’t have the colostomy, I think I’d find that hard to cope with. I don’t have the flashbacks and it’s this that really worries me. I’m not a doctor or a psychologist but it raises red flags for me and I’d respectfully like to suggest you seek some professional help for what might turn out to be post traumatic stress disorder. 

I realise that seeking help is going to mean talking about this and goodness knows I know how hard that is. Maybe writing down here about what you’ve been going through and how you’re feeling could be a practice run for talking openly to your GP or oncologist? 

I do hope it helps to know that you’re not alone and that someone out there is listening. 

Hi Jo, thank you for your courageous post. Those of us who’ve had breast surgery can sympathise although I found that once we’d both come to terms with it things could return to normal. I know that for you that can’t be the case and my heart goes out to you. My late mother had radiotherapy for cervical cancer and although she never went into details I know she never recovered from the side effects. 

Wolf-J@ 

Dear Jo, 

What a brave thing to write about; you must be really keen to know there others in a similar place, 'oh it's not just me' to help you navigate what sounds heart breaking for you. Let me reassure you - it's not just you (or @daloni who very kindly, always tells it as it is)

You're not alone in this and although I, like Daloni, have not had a colostomy bag, I did have the same external and internal radiotherapy Daloni describes to my pelvis after a hysterectomy. My cervix was removed in surgery and that has altered me (despite the male doctor telling me it wouldn't - he was wrong). So, I'm finding this hard to write, but what I want to convey is that it can get better - it did for me. I would like to encourage you to ask for help - I did.  

I struggled with dilators and thought my sex life was over - I too had bladder issues although that is now resolved (my treatment was March 18). I use Yes, Yes, Yes lube recommended by the gynae nurse with a specialism in sexual issues following cancer - you can get it on prescription if you need to as well. 

I asked for help - eventually. I felt there was something physically wrong so I had that checked - once I was reassured by that (I insisted the brachytherapy radiotherapist checked it herself followed by my oncologist and then the nurse had a good look too!) I had an honest chat with my psychologist and then an honest chat with hubby and we very slowly navigated getting back to a different way of being - it is different but it's ok. We've been through a lot as a couple and it's been really tough for him too - I am changed physically and he is not. We've both been through the trauma together though and there is still intimacy which I am glad of. 

I found that dilators were actually worse for me than intercourse, I hated them and actually intercourse helped a lot with that. It took a while though and I definitely think my emotional state contributed to my physical reluctance. I cried a lot (not sexy) and it has been different and sill is different to my pre cancer days (sadly - if I'm brutally honest) I have to say my husband has been great - very understanding.

I'm writing this publicly and not in a private message as actually it's not much spoken about and although I feel like I've just stripped naked for the community and am cringing, I hope this is helpful. 

Please find a professional you trust who can help you navigate this - I'm glad I did. 

Sending you lots of love - I was very touched by your post - thanks for sharing your vulnerability with us and trusting us. I might now need to go ino hiding again!

Gobaith and

I think you are both very courageous to write about this issue. If this forum is for anything it is to help people share "out loud" rather than in secret, as if there are things to be ashamed of or too difficult to talk about. "The more personal, the more universal" is something I learned in my counsellor training, courtesy of Carl Rogers. The more people dare to share their vulnerabilities, the more others can. Which is of course what these threads are all about. Good luck to both of you.

xx

 Gobaith 
Hi Clare 

I am so glad you found the help you needed and that you were able to talk to your husband and find a way forward. I would really like to give you a big hug. Maybe Jo could join in the hug too 

xx

PS to at mention someone and highlight their name, sending an email to say they’ve been mentioned do this. 
type the at symbol and start typing the member name. This will prompt the system to load user names as a list. Keep typing until the one you want is at the top. Click on the top name. Then hit return. 

I hope this helps with tagging 

xx