Post-treatment Intimacy

Hi Sarajazzle 

Were you given the dilators to use post treatment? I know they are unpleasant and I didn't like using them myself, but they can help to keep everything open. I didn’t have any bleeding myself using them initially. 

After pelvic radiation our skin can be more fragile inside and prone to bleed more easily so it could just be that and you’re are getting some tearing causing the blood. The menopause might also be making your skin dryer, so I wonder if you’ve been given anything for that? I was given a couple of different types of lube to use, but I had already been through the menopause before my treatment started, so it was different for me.

I can’t speak as to long term effects, since I only had minimal bleeding once I’d been identified as having a recurrence 9 months out from treatment, and ultimately had to have my vagina completely removed as part of my surgery, so sex is not possible and is only a distant memory now! 

I appreciate it’s a difficult subject to talk about, but it’s good you’ve brought it up as it may hopefully encourage others to join in with the discussion.

Sarah xx

Hi Sarah, I hope you are well, and thank you for responding.

Yes, I do have dilators too, and experience bleeding with them also. I am starting to wonder if it’s stenosis or that there is an infection so I’m going to call gynae this week. 
My partner and I have been finding other ways to connect intimately and I think it has actually brought us closer together. 
Your surgery must have been so difficult at the time, but I imagine on a mental note, it has helped with acceptance knowing that it cannot come back again, and eased a lot of anxiety in other ways.
You are an extremely special person and we are grateful for what you do for this community x

It’s good to find other ways to connect, because having that closeness is so important. Do you have any signs of an infection? Anything like a raised temperature, feeling unwell or any discharge? Perhaps you could get that checked to put your mind at rest. 

I had to accept that my surgery was done to save my life, and I do, but unfortunately that does not mean the cancer can never come back, despite all the body parts I’ve had removed! That can never be guaranteed for anyone who has ever had cancer, but I don’t dwell on negative thoughts-I just think of myself as a positive realist. 

I know a number of women in the support group I run for exenteration surgery who have unfortunately had one or more recurrences since surgery, so it can definitely happen. Anxiety becomes less as time goes on, and I’m more than 5 years out from my surgery so I’ve been very fortunate, though I’ve had many non cancer related issues in the past few years and more surgery. 

Thank you for your kind words-I am well at the moment but currently waiting on an appointment with an orthopaedic surgeon next month to discuss a total hip replacement so I’m still not free of hospitals! 

Sarah xx

Hiya Sara! Hope you are doing ok, I’m also experiencing those menopausal symptoms. My bones ache SO BAD! If I’m in a position too long I sieze up! Or if I’m asleep on my side that arm and leg hurt so much. Also my bum and thighs go numb when I sit for 5 minutes. Not sure how ‘normal’ that is and the hot flushes at night and the day and crying all the time, but I’ve started conti patches last week and feel a bit better already, not crying and sleeping through sometimes as well. 

I remember through treatment I would bleed during and after sex. Then during the 2 weeks of brachy I didn’t have any sex and it was about a week after brachy ended we had sex and to my surprise there was no blood! But the second time there was and the third time there wasn’t. So it’s hit and miss for me. He says it doesn’t feel any different but uses a bit more lube. So like Sarah said the walls and everything tighten and there’s scar tissue that’s getting broke each time to loosen the area again. I’m glad your partner sounds like mine, not phased by the blood at all, but I understand how you feel. It’s also a bit psychological because it takes you back to how this came about, well it does for me, it was one of my symptoms which caused internal alarm bells. 

You had treatment at ARI as well didn’t you? Did you have the targeted radiotherapy like me? It takes a bit longer than normal radiotherapy? x

I’m sorry to hear that Sarah - what a journey you are on. you truly are superwoman, with a wonderful soul. 
I love how you’ve worded that - “a positive realist”. I think I would like to take a leaf out of your book :)

Thank you for taking the time to reply - I had a similar experience after treatment, and didn’t bleed for the first few times. But now it’s every time, albeit not as bad as it had been previously. 
Youre absolutely right, it’s definitely the psychological aspect that’s getting to me, as bleeding was the original symptom that made me go to the doc at the beginning of all this, so for me, bleeding = cancer. Which I know is ridiculous, as that’s not always the case.

Yes, it’s ARI - I had 25 sessions of external, and 4 sessions of brachy (2x two night stays, one week apart). Possibly this is why it’s taking longer.

I wanted to hear other peoples experiences as I absolutely hate the thought of wasting an appointment that someone else may need if it’s “normal” to have these symptoms. It’s such a rock and a hard place to be floating between scans isn’t it? 

also, yes! Joint pain is a pain! I’m the same after sitting, and when I wake up. It’s a relief that’s common, but also not fine for you too! 

Oh, I’m not sure about superwoman when I’m only able to get round my house on two sticks, knees creaking as I go! I’m hoping I might be able to walk again and without stooping over if I get a new hip. 

I’m not  positive every minute of the day, that would be impossible, but I choose to have a positive mindset overall as it makes life much better and doctors have told me they see better results in treatment and recovery from patients who have that type of thinking. 

Sarah xx

Hi there, you’ve had some good info back but thought I would reply also as more info is usually better!

My brachytherpy finished in October 24 and it wasn’t until around a month ago that I stopped bleeding during and after sex. My oncologist examines me every three months and puts my mind at rest that all is healing albeit very slowly. She gave me some esteogen pessaries which seemed to help but I think it’s normal and part of the healing process. I also had a watery discharge until around a month ago too that has thankfully stopped apart from after sex for around 8 hours. 

It seems that healing is a very slowly process!

Best wishes,

Tanya

Hiya Tanya, 

thank you for responding to such a personal question. This has put my mind more at rest - I’ve been worrying that something isn’t healing, but after reading you and the others advice, I can see that it’s more common than I had thought. 
I reel there should be more information given to us after our treatment as to what to expect.

i should be due my next check up end of Sep/start of Oct, so hoping to get some more reassurance then. 
im glad to hear your symptoms have subsided 

Yes, I agree, but I’m wondering if it’s so individual they can’t compile it as information for everyone. 

you’re welcome, I’m glad to help. Check ups always help don’t they, they make me feel safe for a little while!

good luck with everything xx