Hi everyone , I was plunged into menopause from the Hysterectomy with bi lateral Salpingo-Oophtrectomy so that I don't get cancer there after my initial breast cancer. This was recommended by my breast surgeon and most of my cervix was removed also. I also took Tamoxafin for 5 years then Femera now after the mastectomy and chemotherapy the second time I had breast cancer. All this means I have no sex drive at all ! Nothing, nada, not even a mild distant twinge of forgotten desire . And can I say - no self indulgence either ??? Not interested. I used to have a active sex life before , normal I'd say but this is something my husband doesn't get or understand. All my bits are there , mostly - I look fine and are back to normal after the chemo complete with hair and look good according to him , yet in the " downstairs department , it's a no go area " why ???? I've tried explaining and we've tried lubricants but that seems to make it so clinical and not really spontaneous . It's just too painful without the lubricate and I don't carry it around in my handbag either. I've also had a vaginal repair for 2 different prolapses. This was done vaginally and I literally couldn't sit for a week , it was extremely painful. The dr never told me he'd do a episiotomy !!! I was so scared to try intercourse the first time after 6 weeks and I was justified. It took quite a few attempts to even get it in , let alone full penetration some umpteen tries later. It's still a bit of a problem now but it didn't last long ( the repair) - a year and the prolapse returned. What do other ladies do if I may ask ? I can't take HRT as I'm oestrogen positive. Sorry if I offended anyone with my choice of words . Thanks Bep xx

I think two things are separate, the mind and the body. May I be up front and say I haven't had actual intercourse with my husband since November before my operation although we are up to hugs and cuddling at least now. He has mistakenly gone for a feel of his favourite boob and its not there where it used to be. Its like we need to get to know each other all again but jeez in this winter cold now isn't exactly romantic weather either. Before I had breast surgery my hubby and I went to a sex shop (the first time our entire lives) and I bought good lubrication, we bought a very naughty movie and I bought a rabbit vibrator. I have only watched the movie once as it was a bit of an eye opener and I have a good memory and imagination so I haven't watched it again. I think hubby has watched it alone quite a few times doing what men do and he's cool with that. I just say to him don't even imagine I can contort to the moves in that movie and he understands a wife and an acting model are different creatures. I tell my adult sons the same when they get to looking for a wife lol. Ok, to the rabbit thing, you can insert it, that's the obvious bit and it has rabbit ears for tickling that other bit. It is rare I am even in the mood to try this but for my own peace of mind that everything works and I am penetrable I have tried it. All good. Now to wait for some nicer weather to get our layers off.

Hi Beppie. Your story is not an unusual one for any woman who has gone through breast cancer chemo and other therapies. Firstly, congratulations for sticking to Tamoxifen and Femara. Studies, including a brand new one out from the States, indicate completing drug treatment raises long term survival by at around 30%. I have included a link from BreastCancer.Org (American site) which you may find interesting to read. Actually this site is amazing - anything you want to know is all there. http://www.breastcancer.org/research-news/not-taking-hormonal-tx-leads-to-more-recurrence If you read through all the blogs here you we find we all have different and varying experiences in regard to our sex lives One thing that seems to stand out is the medical profession has not found any answers therefore not interested in talking about it. The only advice I can give you is keep talking to your Gyno and your medical team about this issue and research as much as you can for yourself and if you find anything new don't forget to share with the group. There is one great hope on the horizone for those of us who can't use estrogen pessaries. It is called DHEA-S vaginal Gel developed and available in Americal and FDA approved deemed safe for women with Breast Cancer for use vaginally. It gives the same results as estrogen pessaries but the difference, apparently with DHEA-S Vaginal Gel, is it does not convert into estrogen into the blood stream therefore completely safe. It is available on prescription in America. I found it on several sites in America however, would not ship to Australia as it has not gone through our TGA approval process. I can't see that happening anytime soon as the medical profession here either do not know enough about it or do not think it important enough to research or fast track for us. Talk to your Gyno about it - make sure you let them know it is DHEA-S - print out the study and results and ask their opinion. You will see where I have blogged about it previously and it gives links. Apart from that and the Mona Lisa Touch (which I have had) there is not anything you can do to ensure you are at least capable of having sex using lubricants. As far as Libido is concerned I don't know if there is any magical formular for that. Most of us in this group have lost our libido again no-one has answers. The main issue with this group is having the ability to have sex using lubricants. Most of us suffer from vaginal atrophy which means sex is too painful with or without lubricants. I wish I had better news for you. The medical profession should take better notice of this issue as it impacts our femininity, our sexual relationships and our ability to concentrate 100% on beating breast cancer, getting on with our long and happy lives. Good luck Beppi. Suexx

Hi Beppie, Unfortunately there aren't any easy answers to this question. Many have tried different lubricants such as replens and yes but to no avail. Personally, I have not had intercourse with my husband since July 2014 when I started chemo. I was already in early menopause and chemo pushed me through it. I suffer severe vaginal atrophy making penetration impossible. My libido is definitely not like it used to be. Our very active sex life has resorted to me giving my husband pleasure in other ways every now and then but don't even bother as far as I'm concerned. It's just not worth the effort. It's sad, frustrating and does put a strain on our relationship. I'm very lucky that my husband has never been one to press the point and he is very understanding. We both miss the intimacy associated with our old sex life but know that it is just the way things are now. Like the other ladies have said, the medical profession really don't seem that interested in this side of the side effects from treatment. :( karen

Thanks for that. Sad but true Drs not interested . Sex is part of a relationship and especially as it's been part of your life then suddenly it's gone . We've had a few funny times as well where it's not possible and we end up giggling and just laughed instead. I read your adventure with the MONA Lisa and what a trip you had - so envolved and invasive too. Congratulations on persisting and doing it. Did it cure or help a lot?? It's hard to ask the questions when they're so personal and I hope I'm not being too much of a sticky beak ! It just feels like lately it's like - ok , come and get it and that's it for a few days and so clinical , no spontaneity due to the dryness. And it's painful for him too as no lubrication. Kind of feel like a car that's needs a lube job. xx Bep

Hi Karen, what a honest answer and you seem to have reached an understanding together . That's wonderful. My husband still feels like intercourse quite frequently yet the dr seems to think that we've had our kids, passed middle age and are semi retired so we should just close shop and take up painting . I suppose when your young you are more sexually active but because we're still interested there's not a lot of information to get some help from. One of my sisters has terminal lung cancer yet still does have intercourse occasionally - both have libidos and finding it fine. xx Bep

Dry , hot and quite honestly " GO AWAY " !

18 Replies

Krooz
Member
10 years ago
Hi ADean - for the most part I couldn't care less either. I can't remember when I was last aroused without an awful lot of effort. I am choosing to persist and search for some enjoyment to try and maintain intimacy in our relationship. I'm not saying this is the right way, it's just what I'm doing to try and cope and not feel like I've lost everything. However, each time we are intimate I have to battle with the self-talk in my head competing with my hope for something enjoyable. I do still cry alot and get angry.

This is probably not helpful, but I think there are a lot of us who struggle with feeling anything in the midst of all this B cancer business.

K
adean
Member
10 years ago
Thanks girls but what do you actualy do if you couldn't care less if you did it again, not a ounce of feeling. Lol
Krooz
Member
10 years ago
If you google Breacan you can find the website and the have a lot of recorded webinars which may be helpful for a range of issues.

K
suzieq
Member
10 years ago
A counselor is available for free to breast cancer patients but you have to ask for one. I did and I found her absolutely wonderful. Suex
suzieq
Member
10 years ago
The Sex Shop is where one of my doctors sent me - because the lubricants are much better.
Beppie
Member
10 years ago
Hi Rowdy,

yes, no one tells you this whilst your having treatment . Just another problem to sort out and it's not an easy fix. I think the adult shop is a good idea , lots of lubricants sold there but I'll ask my dr too tomorrow when I see her . Thanks xx Bep
Beppie
Member
10 years ago
Hi SuzeQ,

thank you for the info. I took tamoxifen for 5 years , had 3 years off and then breast cancer again so this is my 3rd year on Femera - 7 to go. I'm seeing my dr tomorrow so I'm going to ask for some ideas to try. xx Bep
Beppie
Member
10 years ago
Thank you. What a good idea, wouldn't have thought of that. After my chemo and treatment finished I wasn't offered any counselling or given any information. I found this website last year by accident. I didn't have a breast care nurse either . The only time I saw one was in hospital after my mastectomy to organise a bra for me. Cheers Bep xx
Krooz
Member
10 years ago
Hi Beppie - I live in Victoria and we have an information and support service called BreaCan. They run various information sessions for breast and gynaecological cancers. One of the sessions offered was with a counsellor psychologist with a specialty in sexuality. It was held at an adult 'toy shop'. The psychologist went through all of the various devices, creams, books etc in the shop - including different lubricants and which is better in different circumstances. With a sense of humour she talked us through options and ideas for alternative ways of arousal and having sex. I found this a very helpful session. It also made me comfortable in the adult toy shop so I now feel I can go back and browse or ask for other ideas in the future. I did find things which have assisted me and my partner.

If you feel brave enough you might like to step into a few adult toy stores until you find one with an approachable sales person you feel comfortable talking to. They could offer some ideas for lubricant among other things.

I wish you lots of luck with a little joy mixed in :)
rowdy
Member
10 years ago
Hi Beppie I read this the other day and didn't know what to say. I feel your pain and the other ladies. Since starting this trip my sex life has gone, lubricant helps but there is no desire any more. Sex has now become something we have to plan and slot in to the day. I agree that doctors think that as we are older that sex is no longer important. It is true the old saying you never know what is important until it is taken away. I'm on Arimidex and this is not helping, wow only another 7 years to see if when I;m not on it if it makes a difference. I don't feel so alone when I read the other posts and realise how big a issue it is for others.x

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Dry , hot and quite honestly " GO AWAY " !

18 Replies

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