The S Word

Hi Ladies... well I thought I'd start this conversation and wondered what your comments would be. I had my surgery last December for 3C radical hysterectomy which included my cervix being removed. Now my question is when or can being intimate take place. I've read having your cervix removed does make sex very painful.. now for me not that I want to even begin to go there as the very thought after all the shananigans that I've been through I'm not particularly bothered but this has got me thinking. It also got me thinking will I need a smear test as well? Look forward to your answers Love Michelle x

37 Replies

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  • You had your surgery in December last year...?! Get back in the saddle now if you feel up to it! I had my surgery in June and waited about 8 weeks 😆 We were very careful the first couple of times, but back to normal now. I haven't found it uncomfortable, but I did read that it can be, so I may not be the norm. It's a bit different to before, but everything has proven to be in fine working order, which was a huge relief.

    As for smear tests, a friend who has had the same surgery but lives in Northern Ireland said I would still need them (she still does), but my gynaecologist was horrified when I asked and said I wouldn't! Not sure what to think! From memory, the lovely celebrity who is an ambassador for Ovacome (Michelle someone?) received a letter from the NHS telling her she wouldn't be eligible for smear tests since she'd had her cervix removed.

  • Well you did make me giggle.. yes I guess I should get back on the saddle! Interesting about the smear test though.... bit of a mystery I guess on that one! Let's hope I too receive a letter! Thanks for replying... I'm still giggling away here.. 😂😂 xx

  • Only if you feel ready, of course :-D

    I asked my gynae surgeon how long to wait and went with his recommendation. I don't think he wanted me to bust up his handiwork - haha!

  • I'm not sure what to do... in fear of me closing up! Doesn't end does it! lol xx

  • I'm sure there are gentle ways around it. Feel like putting a winky emoji there, but it's a serious topic! Listen to your body and see what feels right. Sending you a gentle hug xx

  • Yes it's a serious topic with lots of replies and we're all struggling in different ways... gentle hug received! Love Michelle xx

  • The nurse who did a check to see how my stitches were healing said I should wait 12 weeks after surgery before sex and that as all my previous cervical smears were clear I would not need another.

  • Hi Coalole I never had my stitches checked infact I've not had anyone check there. 12 weeks sounds ok as long as you are ok... I wasn't that's why Im now almost a year.. I don't really feel upto it! Love Michelle x

  • Well ladies I've got back on the saddle too 😳 Have to say it has hurt quite a bit but I am determined to get back to normal ... as for smear test I don't know 🤔

  • Well done Shelly! I'm still not sure though 🤔 x

  • If you haven't got a cervix then you don't need a smear text. My oncologist had me removed from the cervical smear list.

    X🌷X

  • I never received a letter...I'll mention it to my Oncology Doctor next visit xx

  • I've just had a lovely letter from the NHS stating in such pleasant terms that I would no longer be called for smear tests on account that I no longer have a cervix! no tact again. x

  • Oh charming indeed... I never received a letter... x

  • Hi Michelle, not back in or on the saddle yet as only 5 weeks post-op. However, with regards to smears if you have had your cervix taken away there is nothing to smear! Usually your GP surgery lets the cervical smear recall team know after they receive the discharge summary from the hospital detailing your operation. They remove you from their recall list.

    Hope this helps.

    Lynne 💞

  • Hi Lynette hope recovery is going well. Yes it does make sense but nobody has said anything which got me thinking! xx

  • Well, I received a letter inviting me for a smear test a few months ago, which I actually found a bit upsetting. I took it to my GP, who said that I did not need one and she would see that I was removed from the list.

    As far as pain during sex after having your cervix removed, you might turn out to be like me and have no sensation in your vagina whatsoever. Apparently this can happen sometimes due to nerve damage during the hysterectomy. Sex works after a fashion, there just isn't any pleasure for me any more. It's extremely depressing!

    Let's hope that you don't turn out to be like me!

    Barbara

  • Oh Barbara really... I never thought to ask before surgery as in shock from it all. I'm sorry to hear this and I'm still not sure what to do. Thanks for replying... big hug xx💐

  • Thank you for raising this Michelle. I'm 7 months post op and have attempted sex on a few occasions. It's been too painful to continue. I'm at a loss to know what to do and thinking of paying for a private Gynae appointment to see if they can advise.

    At first I thought the problem was due to surgery, then I blamed the menopause. But having read a few dr Google articles it sounds like the result of the surgery. How things are stitched together. But what to do?

    Is it too much info to say that I don't even have a sex drive? But I know how important sex is to my husband. He's been very patient and kind but... if sex is too painful to ever have again then where does that leave my relationship with my husband?

    Any advice for creams etc very gratefully received.

    T. X

  • I've just read your post Rosewall and it made me cry ... again. I feel like you. my partner loves me, finds me attractive, is so patient ... but I know he needs to express his love physically for our relationship to be healthy. I am 4 months post op and it is just too painful. our only attempts have been like unsuccessful gynaecological examinations and now I don't even want a cuddle ... that's also due to the hot flush problem. I feel terrible. I am trying to get some help from gp etc ... I will let you know if anything helps. my feeling is it is a physical symptom (it feels like my vagina has dried and stuck together) but also a need for specialist counselling. we need to talk about this so that more help is provided. if a man had his testicles removed he would not be sent home with no help or support on the presumption that he would ask should he have any problems. of course he would have problems . .. as do we. Kx

  • Hi Donut, thank you for posting. My gps and Gynaes have told me they wont prescribe any prescription creams. And I shouldn't even take herbal remedy products as they mimic oestrogen. But I have to revisit this. I'm starting to worry about sex and that creates tension which will add to the pain.

    because ive got so much on my plate I've just left it but this thread has made me realise that it's important and I need more medical support.

    Hugs, T. X

  • I too have been advised no oestrogen as it was an oestrogen fed tumour. I am looking into progesterone creams at the moment but I expect conventional medicine will be skeptical as only available online from USA at present. I did read that oestrogen vaginal pessaries are of such a low dose that they are not absorbed into the bloodstream ... maybe that is an option? Thinking of you. I understand a little of what you are going through. when we are busy and tired we can ignore these feelings ... everyone's getting their dinner and going to school on time ... what does sex matter? but it is part of our health just as much as the scar on our tummy healing. Kx

  • Yes - absolutely agree with everything you say. You put it very well. I'm interested about the progesterone idea and if you learn more please post. I'll do the same. Feels better talking but never expected to feel this way 7 months post op. I'm simultaneously grateful for being alive and frustrated that I have these sexual problems. T. X

  • Hi Donut, just picking up on your reference to vaginal oestrogen- I'm using it because it is such a low dose. Neither my oncologist nor my GP were keen on me having HRT whilst the result of my genetic testing was pending, but they agreed I could use that as it is low dose. My genetics came back negative, so I could have HRT if I wanted to, but I'm coping OK so probably won't bother now.

    Worth speaking to you onc/GP maybe?

  • We tried about 6 weeks after but was too soon, a had s bit of tearing. So

    I would wait about 8 Weeks plus. Anything that relaxes you will help. My nurse suggested alcohol! But I found other, more relaxing things helped. I was on the smear list but this is worth a detailed chat with your oncologist and GP, as my surgery was kept in the loop and you may be sent out periodic letters. Worth popping in and asking them where you stand or updating their records. Good luck.

  • I was told pre-op by the surgeon that they'd remove my cervix and the good news was I'd never need a smear test again. So I expect to have been removed from the list. If I'm invited I'll let them know why I don't think I need to go.

    Sex - similarly I left it a few months because I was concerned about the healing. I bled for 2 months post surgery so I took that as an indicator that my body wasn't ready for it. It was painful the first time - stinging I would say. Subsequently I'd say there's discomfort due to dryness. But I've just been exploring some organic products for that having asked a question on the macmillan forum about recommendations. There are products available on prescription, though I do have a concern about any kind of 'unnatural' product in an area that isn't in the best health to start with.

    If you've had no particular problems with healing then nearly a year sounds like you should have had sufficient time to heal physically for sex. However, as you say, whether you feel like it is another issue. I've seen other comments on macmillan about this and whether it would be helpful to have counselling with your partner to start being intimate again. There are ways to be intimate without getting wholly on the saddle again if you don't feel ready.

  • Morning Ladies.

    I am 38 years old. Had debulking surgery on March 2015 followed by 6 sessions of chemo.

    No interest in sex is a biggest problem. My husband is very patience but, c'mon we are still young ppl and I know he needs it, especially that we were really enjoying it. Now additionally I am in recurrence - so this is not my main problem. For me, I think that was my head as well. Our body disappointed us, we went through massive surgery, chemo, medical menopause. Its extremely hard to get back to normality.

    Smear test - I was told I don't need it anymore.

    Hugs,

    Janetta from Hairless Beauty

  • I have just had a letter from the NHS saying I don't need a smear test anymore and I had the same op as you

    Carole xx

  • Thanks for replying Carole.. I'll discuss this on my next visit xx

  • Hi

    It has been a year for me also since having surgey for stage 111C ovarian cancer. I had a really hard time the first 6 months with a new ostomy bag in my tummy. I was going through a divorce at the same time, dating, but no sex. I was in so much pain. I had radiation to my pelvis and vagina reconstruction as a child so I think my pain is from the damage from radiation. My last visit my dr gave me a prescription, " more sex" she said! I said, "what?" She told me my vagina will close shut if I don't start having more sex, but I just don't have the sex drive and I'm afraid of the pain😢 I would recommend having sex if you feel up to it!❤️❤️

    I was told for years that I didn't need a Pap smear test by Drs. I had hysterectomy at 21 for pre cervical cancer. I didn't think there was a chance getting another cancer and then I was diagnosed with stage 111C ovarian.

  • OMG really! I too am going through a divorce just after I was diagnosed.. also started dating but then this has changed things... the very thought of it closing up leaves me in despair... I don't know what to do now... perhaps Ann Summers party... oh dear! Thank you for replying and stay in touch and hope you get sorted soon. Big hugs Michelle xx💐

  • Hi

    Thanks for your response! Feel free to email me on my personal email anytime

    Emilee@cancercorerecoveey.com

    I'd love to keep in touch with you

    It's been a crazy roller coaster but I am so much happier now and I think that's why I got cancer from being in such a dysfunctional marriage. Even my three kids see me happier! Wasn't easy to get here but I hope to inspire other women like us. I always say cancer sucks, but having cancer and going through a divorce is a double whammie! It should not be legal❤️❤️Love you

  • Great thanks will send you an email 😊 Yes sure is a double whammy but you sound very positive! 👍🏻Love Michelle xx

  • There was a good discussion about this a few months ago, so may be of interest to read some of the comments & suggestions here... healthunlocked.com/ovacome/...

    With regards smear tests- in most situations having had a cervix removed means they aren't neccesary though I have heard in some cases, women who have a 'vault smear' instead... There are many cases, like BJUK (also happened to me) when the 'routine' letter comes through and this can be a bit of a shock and upsetting. Smear tests in the UK are managed by a centralised department and GP practises have to actively remove women from the list if /when appropriate... this doesn't always happen. My suggestion, is to check with your CNS/ Consultant what is needed and then at the next GP visit, ask them to action the removal from the list...

    Sx

  • Hi Sunfleury thank you for replying and attaching the link. It has opened up some good discussion points but again with OC not all closure on done very important questions. I will discuss at my next visit. Love Michelle xx

  • I had everything removed like you and I found I could have sex but it requires gentle sex for a long time as you heal inside. I only started after a month. You will require hormones by patch or pill. If you don't after about a month or two your body becomes unbalanced and you find yourself doing things differently. Like forgetting to do things your regular way. Caused by the hormonal change. Once you get balanced back from the hormonal change everything returns to normal. Took me 3 monthd

  • Hi Susan thanks replying. What hormone patches are you on? x

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