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After a radical hysterectomy, the last thing on your mind would be sex, right? Looking back, it was probably on my mind a lot more than I realised.
I was 36 and my husband was 32 when my routine smear found that I had cervical cancer. It was 27 October 2009 and we had been married for just over two years after 16 years as a couple. We had a 15-year-old son and the diagnosis meant we would have no more children. We had been through many miscarriages so having more children wasn't meant to be. However, when you're told you can't have something, you suddenly start thinking that you want it. It took maybe a 10-minute discussion to decide that we needed me healthy and thinking about having eggs frozen wasn't important.
We were still relatively young though, and sex was an important part of our relationship. Amid all the thoughts that raced through my head, one was 'will I be able to have sex normally again?'
My fantastic surgeon and gynaecological oncology nurses were fairly certain I would be able to and told me that counselling and other options would be open to me.
I had my operation on the 18 November 2009 and, despite it being a huge operation, it was all done by keyhole. I had a radical hysterectomy which meant my cervix, uterus, ovaries, pelvic tissue (to ensure there was no further spread) and the top of my vagina were removed. I also had lymph nodes removed in my thighs.
After surgery, I learned the cancer had spread, but luckily the lymph nodes it had spread to were the ones that had been removed. They told me I would still need chemotherapy and radiotherapy. The radiotherapy gave rise to more potential problems, including scarring in the vagina, which in turn could mean my vagina could 'close up'.
Obviously this made me worry more, especially when I was also told that pelvic radiotherapy could cause long term effects, which could take up to 10 years to show themselves.
Chatting with friends and my husband comes pretty natural to me, but there are certain things I don’t talk about. I had some counselling after my treatment, but to be honest it wasn’t great and didn’t help me at all. My counsellor was very fixed in her opinion of how I should be feeling and she didn’t really listen to me.
How I felt was that I had been left with a vagina like a tube. In my mind it looked like a tube with an end, not something to use to have fun anymore. My surgery had been keyhole and my uterus used as a ‘bag’ to pull everything out through my vagina. I imagined the radiotherapy scarring me as I lay there. I couldn’t watch the slide show of pretty pictures that flashed by on the screens above my head. I felt sick, like a piece of meat, and damaged meat at that. How on earth would my husband ever fancy me again, would I ever feel sexy again? Would I ever have an orgasm again?
To prevent scarring in the vagina becoming an issue I was given a prescription for dilators. I took it to the pharmacy and remember the two women behind the counter discussing it and laughing. That was embarrassing and made me feel terrible. I collected the dilators and took them home. They reminded me of Russian dolls as they all fitted inside each other. The large container looked like an elongated kinder egg! Each dilator was hard, plastic and smooth all the way down. They were cold and didn't feel that nice.
The idea was to insert the smallest and work up to the largest as the scarring improved.
I found the dilators to be impersonal and cold and found I needed to use large amounts of lubrication to use them. When I used them it felt like a chore and I didn’t feel like using them with my husband.
My husband looked online at a site that sold sex toys. He found one that looked perfect so we ordered it to give it a try. When it arrived we found it to be super soft on the outside. It was a dildo, not a vibrator - it had no vibrating parts inside - which had a small hand pump attached. The pump looks like the sort on a blood pressure cuff. Using the pump you can pump the device to any size you like once it is inside you. So you can insert it and make it bigger as you feel able to. It meant that I could choose the size I wanted to go to instead of picking a dilator and trying it.
The pump has a button to use as a quick deflate. It was shaped, as most dildos are, like a penis, so it felt so much more natural to use with or without my husband.
My area of scarring felt like a piece of grazed skin so the softness of the dildo felt a lot better than the hard dilators when using it.
10 years on, I wouldn’t say I feel incredibly sexy now. I have more radiotherapy injuries to my bowel and bladder which meant I had to have a colostomy bag for a while. I had a resection and no longer have any bag, but I have scars. Scars that I have that prove I’m a fighter, scars that I am quite proud of as they are my proof that I beat everything cancer threw at me.
I also wouldn’t say sex is always easy. I still need to use lubrication - a water-based one is best - and sometimes sex is still painful and we have to stop. Different positions can help, usually I go on top so I can control the insertion, but sometimes it is helpful if hubby goes on top and goes slowly as that seems a more comfy position for my body. Orgasms can be a little harder to achieve nowadays, but they are not the be all and end all. Sometimes we have sex and I don't have a full on orgasm, more of a lovely sensation. Clitoral orgasms are easier to achieve as that isn't affected by the scarring so much.
I am sure though that using my little purple friend aided me in being able to recover.
My husband has been very supportive. He has encouraged me to discuss what I like and dislike. He has been patient throughout and has never put pressure on me. He understands how hard it is for me and how much pain I am in on a daily basis. He actively encourages me to use toys alone if I want to. We take it slow and if I'm uncomfortable I just have to say and we'll stop and try again! He has been a fantastic source of comfort for me and I can discuss everything with him.
I’m not trying to ‘sell’ you the dildo I used - I’m not on commission. What I’m trying to say is that you don’t have to accept the first solution. Try different things that suit you, take things easy. Try and play on your own as well as with your partner and that way you can find all the comfortable positions for you. Try different sex toys if you want to, they are easy to buy online now and there are so, so many.
Categories: cervical cancer