Bladder Removal & Women's Sexual Health
As a bladder cancer advocate, I spend a lot of time on Twitter, and I had made "friends" with a few cancer nurse specialists. These nurses are the backbone of our NHS (National Health Service) here in the UK, dealing with all thing urological like prostate, testicular and bladder cancers.
Sharing my experiences about sex after a cystectomy
They had asked me if I would share my experiences with them, so after a few phones calls and lots of laughs, they invited me and the lovely Shirley (another UK-based BladderCancer.net contributor) to be part of a focus group which focused on sex after having a radical cystectomy (bladder removal surgery).
I was a little unsure of what I could bring to the table, but I also felt very honored to be part of something that could help change the way the women are treated after having a radical cystectomy.
Women don't get much help at all
Men have a lot of support after having their operations due to also having their prostates removed and having to deal with the loss of erections. But women, we don't seem to get any specialized help or any help at all.
It was refreshing and reassuring to be asked to speak about this. It made me realize that if they were asking for my help, then it would seem that this is a general problem within the UK.
Sex was the last thing on my mind at first
In my own personal experience, sex wasn't spoken about in any type of depth before or after my surgery. If I remember correctly, I was informed by the doctor who was performing my operation that it may or may not affect my sex life but that there was information out there. To be honest with you, sex was the last thing on my mind after the operation.
Recovery took months. Yes, I could get around, but I had a lot of pain and a few complications with keeping food down, and all I wanted was to be pain-free. I think it was around the 8-month mark when I finally felt back to "normal" and felt that I coping well with my new bag life.
It seemed silly to bring up sex
My husband Tim and I had open discussions about our sex life and what we both wanted, and he just wanted me to feel better and happy, and basically, sex could wait. What was most important was that I was alive and still here. It seemed silly to bring up sex, and who would I speak to?
Searching for information online
I had been discharged from my stoma nurses; I had no idea who to ask. I had done a few searches on Google and saw that there were dilators which would help to stretch the vagina. "Stretch it?!?" I had no idea what had actually gone on down there, so I had no idea if I needed to stretch it.
I remember having a chat with my lovely urology nurse who said (off the record), "Get some lube and just get drunk and have a go."
When I met with the cancer nurses and other bladder cancer patients, we all agreed that the meeting would be confidential; however, I can give an outline of the type of things that were discussed.
The nurses wanted to know when would be the best time to speak about sex. Would it be before or after the operation? Would it be best in a pamphlet form with phone numbers signposting the way for more help, or would it be best to discuss the situation, face to face? And at what point did we feel that we felt like having sexual relations after surgery?
No one had discussions about sex
They wanted to know what we were told before our operations, so we all shared our stories. The long and short of it is was that no one really had any type of discussion about sex, either before or after, or if they did, it was very minimal and lacked any depth or help.
One of the things that I wasn't prepared for was how my vagina had changed. Sex was painful, even with lubrication, not only for me but my husband as well. The first time did not go how we planned it.
We need more support
The long and short of it is that we, women, need more support, and sex needs to be spoken about before we have our operations. We need to be aware of the changes in our bodies and where we can go for help.
If you are struggling with any sexual issues, then please go and speak to your doctor. There is no need to be embarrassed or shy; we deserve a good, fulfilling sex life.
How long did it take to get diagnosed after your first symptom(s) appeared?