Hi everyone,
I am looking for some good news stories regarding sex after a radical hysterectomy - There's gotta be some out there!
I am 37 with a fantastic partner, 8 months post surgery, I didn't need chemo or radio, my first scan was clear I no longer have HPV, I was feeling so positive about everything and ready to get on with my life... Until we started sex again. Without being waaay TMI, the build up feels the same, there is no pain, and then I climax and it feels like nothing, I can't feel my orgasm at all.
I asked about sex in my consultation and was told that nothing would change which was a huge relief, resuming sex with this in mind meant it was a very traumatic thing to experience in situ and I'm feeling quite let down by my dr for not pre-warning me when i asked.
I am praying that this isn't permanent, but I am having trouble finding any information about this. Has anyone else experienced this? What did you do? And please tell me it will get better!
Thank you so much :)
Hi Ve_ and welcome to the group.
Sorry I can’t help with your question as I don’t have the right experience to share, but I just wanted to say hello and hope that others will come along and post to share their experiences. Hopefully it will get better and isn’t something permanent!
Sarah xx
Thanks Sarah, great to meet you too.
I'm so disappointed with how this subject has been handled during my after care. When I've had any other problem everyone has been so quick to offer practical advice and comfort. Now it's just tumbleweeds.
Here's hoping it can get better.
I can identify with that for sure. I had different, more extensive surgery, and as part of it had my vagina completely removed when I had my recurrence. Neither the loss of my vagina nor anything about sex was ever even mentioned either before or after surgery, and I was discharged on the day of the first lockdown with no real aftercare, apart from the stoma nurse in the community as I also lost my bladder and rectum, so have 2 stomas. She was the only person I saw post discharge, and was much better and more knowledgeable than the hospital nurses.
We do have ladies in the group who had the radical hysterectomy, so I’m hoping some might be brave enough to share. Lots of ladies went straight to chemoradiation, as hysterectomy surgery wasn’t an option for their stage, so will have had different experiences and might not have had your particular issue. But I’m sad to say that I agree with you that the whole issue around sex after surgery doesn’t get the attention it deserves.
Sarah xx
Wow, I'm astonished that no one has mentioned anything to you about sex going into such an extensive surgery. I'm so sorry.
I knew medicine was misogynistic but I thought gynaecology would at least be okay. I am convinced that if a man was going into an equalivent surgery as you it would be a completely different story. This feels like discrimination and I wonder if you've made a formal complaint?
My lead surgeon is a woman, so I don’t see it as misogynistic or discrimination and never considered making a complaint. I knew what was being removed in my surgery, and I guess it’s self explanatory that penetrative sex without a vagina is an impossibility.
My feeling as time has gone on is that there should be much more psychological help provided after a surgery like I’ve had so you are not simply abandoned to come to terms with everything.
Ultimately I consented to surgery because I would not have lived without it, and so I accepted the changes in my life. I’d rather be alive without a vagina than not here at all!
Sarah xx
Of course, a lot of the mechanics are self explaintory, as a courtesy I would still have expected it to be mentioned, to address the significance of what you are about to lose more than anything. But I'm pleased that you are pleased with the outcome, that's all that matters at the end of the day!
I am still holding out hope that my problems get better, but regardless I will be lodging a formal complaint and seeing it all the way to the top and will not rest until the system is changed. I've been so deeply disappointed with the fact that so much emphasis has been placed on other aspects of my bodily functions, like my bladder function and fertility, yet my sexual health and pleasure has been utterly disregarded. I know for a fact that the same is not true of men with cancer that potentially affects their sexual enjoyment or function.
I don't think the surgeons and nurses are individually misogynistic, it feels like more of a systemic problem that is reinforced by the stereotype that a woman's sexual pleasure is not important. The first comprehensive study of the clitoris was published in 1998 for F's sake! And I guarantee no one is working overtime to catch up on how far behind the world is about knowing as much about women's pleasure as we know mens. This in itself feels like gendered discrimination that fails all women, not just those going through cancer treatment.
I am also mostly happy to be alive, but right now it looks like it has been at the expense of something that was truly sacred to me and I actually don't know if I would have consented to surgery if I knew this would be the outcome.
It's been helpful to chat to someone that has also experienced disappointment in the way their team addressed sexual function and the aftermath of losing so much. You have been through so much more than I have and I'm sorry if it sounds like I'm being ungrateful. I really appreciate you taking the time to reply to my plea! ️
I can completely emphathise with how you feel about this and I’d be very interested to see what progress you make with your complaint and any further action if you’d be happy to share.
One of the reasons I said in my initial reply to you was that I didn’t have the same experience to share is that, apart from the impossibility of penetrative sex, orgasm and the feelings are exactly the same without a vagina as they are with one! So while I have lost the capacity to have full sex, everything on the outside is identical.
Everything was removed abdominally so I look the same as I did before surgery-apart from 2 stomas on my tummy of course! Orgasms are identical to how they were before. I did ask before my surgery if I would look the same, and was assured I would, which was the case.
I have a very loving partner who has never been phased by the fact that I wear bags, and we are perfectly able to enjoy an intimate relationship. So I do feel for you in that this is something you cannot enjoy fully after your surgery.
Sarah xx
I'm so pleased that you can have a fulfilling intimate life with your partner. I know it's not the be all and end all, but also it kind of is. To me any way.
Of course I will be more than happy to share! Thank you for your encouragement and support. I am looking for a psychosexual therapist at the moment, I can't afford one but this is too important so I will go without some things to cover the costs. I will use what I learn from that to put together something comprehensive. I've been failed by the healthcare system for being a woman one too many times and now I'm just angry.
I'll keep you updated!
It is an absolutely important part of life and to have that taken away is a big deal. It’s something I’m sad about but I try not to focus on what I don’t have because it’s never going to be any different for me.
I think if you can get a psychosexual therapist that could be a big win for you, despite the cost. Sometimes we need to prioritise our health. I have a counsellor, but not psychosexual, so it’s not something that we get into in our sessions. But she helps in other ways so I still see therapy as a massive benefit.
If you can move forward in some way with helping other women, that’s amazing-sometimes we actually need to get angry to effect change and then the anger becomes something positive because it has purpose and a result.
I’ll look forward to hearing how you get on, and if you ever need any support with anything I would be happy to try to help if I can. We need to speak up and speak out, and I’m glad you have done that by making your post here as a start.
Sarah xx
Hi Ve_
I have also had a radical hysterectomy and not needed chemo or radiotherapy.
I had my operation 8 months ago. I have had quite a slow recovery in some respects. I did not feel any bladder sensation until after 4 months and even now I have issues with it. I have always had a very low sex drive and since my op and with the slow bladder recovery, I really haven’t been ready for penetrative sex. When doing other non penetrative activities, it seems ok. I definitely feel though that I have more feeling/sensation some days more than others (just like my bladder!) So I think it will improve with even more time. Hopefully with a bit more healing time you will get more feeling/orgasm backx
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