Hi there,

I was diagnosed at 32 and had a full hysterectomy which included removal of the cervix.

-I would say definitely talk to your GP about this - I did and he was very sensitive and happy to explore options. Plus your GP can check all is well and that there is not an underlying reason why you are feeling pain.
-Invest in a good quality lube! After surgery things are different down there and pain is certainly not going to help how you feel about it all. These days there are many products out there and it will help without it feeling like another "treatment/medecine" (I always use a lubricant now.)
-Talk to your partner about how you feel - an understanding partner will mean things can proceed slowly and without you feeling under pressure.
-Clothing - I was embarrassed at first about being nude (lots of horrendous ugly scarring) so I bought some pretty things that covered it all up and made me feel more beautiful(!)
-Also I would say sometimes you just have to get on with it and hope for the best (obviously once you have got some help with the discomfort), sometimes it really is rather pleasant even though you didn't feel at all like it beforehand!
-Don't be too tough on yourself.
-Don't forget you are still feminine despite the surgery.
- If you feel like you need additional support then I would say seek counselling.

I hope my light tone in the reply is OK - it's a difficult subject to discuss isn't it.

Good luck! You never know exploring some of the self-help approaches could be rather fun.

Joelle x

Dear Joelle,

Thank you so much for your reply. I realise it is an awkward topic and so I appreciate your writing even more! It is hard to express how comforting it was to get your message, and I thought it was great how you managed to do so with such a light-hearted tone! Yesterday I felt so utterly alone and sad, and then by evening I was bouncing about my house a big grin and some new fun ideas - thanks to you and the other girls. I think I was feeling like the only young(ish!) woman who was facing this kind of issue (although I know I'm not of course, but it's not something people talk about really and I don't have any friends locally in my situation) and it's really reassuring to know that there are others who are kind of 'in it with me'.
I especially liked your idea about the underwear - I know my hubby still seems to see me as the 'old me' and doesn't have a problem with the awful scarring, but I mind! Your mail has given me lots of positive ideas to get started with - thank you so much!

love
Cat
x

Dear Catherine,
Poor you! I really understand the problems you are having, and the grief you are feeling for your lost libido and enjoyment.
I think it is a twofold problem; psychologically it is hard to relax about what is happening inside due to the cancer having been 'in there'. That sets up extreme tension, which in turn causes pain. There are really satisfying ways that you can give him satisfaction without penetration, remember, so you might like to fantacise about that! However, the physical reason that sex often becomes unpleasant during the menopause is dryness. My wonderful GP prescribed a moisturiser called 'replens MD' which made things a great deal more comfortable, and was therefore free to me!
You might seek help from a counsellor if the psychological problems are the main ones, but if you do, do it together!
Very best wishes,
Isadora.

Dear Isadora,

As ever, thank you so much for your wise and thought-provoking words. I feel you are 'spot - on' about the grief issues - there is so much in this for me about loss - it feels sometimes like it adds insult to injury somehow that even sexual enjoyment has been 'taken away'.

I appreciate too what you say about the associations with the cancer. If I'm honest I think I personally struggle more with difficult associations with the surgical menopause and the fact that I can't minimise it with HRT. The term 'vaginal atrophy' has etched itself deeply and probably unhelpfully into my mind!

I have asked my GP about psychosexual counselling but your lovely message has encouraged me in the meantime to think more freely and creatively about my sex life and not to get too hung up on penetration!

Thank you so much Isadora,

Catherine

Hi Catherine

My theme tune seems to be ...Where oh where has my libido gone

My gp prescribed Replens md which is hormone free and you have to use it regularly but it does help and is much better than ky - sticky and not very nice.

Whilst I can't add any more sensible advice than that of Isadora and Joelle; you are not alone but there is something to be said about the old adage if you don't use it you will lose it.

Take things slowly, try a cuddle or a massage and take it from there. It does help to have an understanding partner and it sounds as though you do (as indeed do I) and sometimes it is about finding your new normal and not looking for what it used to be.

Hugs
Becky

Hi Becky,

Oh yes, I know that theme tune well! To be honest that seems more than half of the problem - and I've been wondering a lot how others cope. Thank you so much for your kind message. I found it interesting to be reminded about finding a 'new normal' - perhaps I'm not quite ready yet as the 'old normal' is still very vivid - but I feel an encouragement from your message that a 'new normal' is something that is possible and do-able!

Thank you!
love
Cat
x

Hi,
I had the same problems after surgical menopause at 42. It took me a while to find a solution, but the Replens everyone is recommending works well for me- supposed to use it every 3rd day but I find using it every day helps keeps things much more comfortable and I avoid repeat urine infections after sex. You can buy it on Amazon for slightly less than the prescription price and it avoids going to Gp!
Still have the libido of a newt, but at least a painfree newt!! Good luck,
Polly x

Dear Polly,

Thank you so much for your kind message, I appreciate it so much! I think I might well 'up' my usage of Replens - like you I am not finding it so useful every third day - but immediately after using it i do feel a difference, so maybe I just need more of the stuff! If you find anything that helps with the 'libido of a newt' issue I'd be more than interested to hear of anything that helps!

love
Cat
xxx

Hi catherine,

I know we already know each other, however i thought I would reply here. Like you I am 33 and have trouble with intimacy now. The pain is awful, I feel like I am burning up inside, no lubricant helps at all, been referred to the sexual health clinic to see the menopause doc in Edinburgh who prescribed some low dose oestrogen pessaries but I am not keen on using these, so going to head back. My oncologist has given me all the lubricants everyone else here replying has but none have worked. Like you, being young and supposed to be in my fertility prime is difficult esp when your partner is used to being so active, I find that difficult also. My sex drive is practically non existant, but my onc tells me this is normal as I am probably still psycologically scarred plus the low levels of oestrogen in our bodies makes the skin down below very thin and this is why it hurts so much. Let me know how you get on.

Victoria
xx

Hi Victoria,

It's lovely to hear from you, thank you so much for replying. I know it's a delicate area (um literally AND figuratively!) so I'm even more grateful to you for sharing! yesterday I was just feeling so very alone with this and reading the replies has been a bit help, just having the chance to explore what's helped others gives me hope.

It's interesting to hear there is a menopause clinic in Edinburgh, I saw a GP here in Dundee yesterday who seemed to think there was no such thing! So now I know I could ask to be referred there instead if need be. I've been given the low-oestrogen cream which I'm allowed to use but only for a short period at a time - it helps I find when I use it, but for the next three months things just get more and more uncomfortable so I really can empathise. Are you not comfortable with the oestrogen cream because of the hormone content, or are you on HRT otherwise?

replens I find helps the day I use it but then it's not so much help while I'm waiting for the next dose! And like you it certainly for me at least isn't a cure all unfortunately.

Like you, I think part of what makes this so difficult is being young and knowing very clearly that I was very different to this not so very long ago. I think the psychological adjustment factor is HUGE. Now in bed, there is often a lot of sadness and feelings of loss which obviously put a massive dampener on things. Your onc's comments were comforting to hear, but it would be nice to know when the sex drive might come back, wouldn't it?

I managed to use all my courage yesterday to insist on a referral to a psycho-sexual therapist with a rather unhelpful locum GP (a woman our age, how ironic I thought - she kept saying 'it was all just the menopause' - um, cheers for that! I thought)

I think too the sex drive issue is a biggie - and one of the things I struggle with massively. I think the Daisy Network forum (website for women with premature menopause) might have a thread on this maybe. I've also been reading about testosterone a bit and how having your ovaries removed could affect sex drive because the ovaries also produce a bit of testosterone which helps sex drive and energy. I'm going to bug my CNS next week to see if she knows who could help with this so I'll keep you posted if I get any useful info!

The younger womens group that meets in london is supposed to be having a sex therapist at one of their meetings this year - I don't manage to go down there very often but I thought I would try to go to that if it happens - and will certainly pass on any useful info I get!

Lots of love to you,
Cat
xxx

Hi Cat
I was there and how, after my HRT implants ran out after my op. I now combine all of the above and use a Durex lubricant which is supposed to enhance the feelings, However, when I had my implants working, the first ones had some testosterone component, and that sure did enhance my libido ... very effective. I also found my migraines were completely eradicated and I could drink much more without getting a hangover. The lads have a much better enjoyment hormone than we girls, I feel! It may be worth exploring the testosterone route with your hospital or GP. Good luck.
Also, the Macmillan site has a section on this. Just type in "sex after surgical menopause" and there are a couple of threads. I don't know if they will be helpful. I know the Macmillan Survivorship project has sexuality as one of it's concerns, so they may be able to help. Everyone's entitled to enjoy this aspect of their relationship, so good luck
Love, Wendy xx

Thank you Wendy. I haven't had a tremendous amount of luck so far with my GP or gynae about all this but I am going to keep bugging them! I do feel this is a real quality of life issue and it really gets me down. Thank you very much for your input, much valued, as always -
Cat xxx

Hi there, I haven't got a great deal of more advice to add to the great ideas you have already given but I wanted to add I am in the same situation having had a TAH aged 32 in June 2010. My tumors have been tested as non receptive to oestrogen or progestrogne so I use a oestrogen patch however by sex drive is still very low and I am finding the whole sex thing a bit of an issue too (mainly feeling guilty about my husband). I think I might try the replens stuff too. I just feel so deeply unsexy...I have ascities but am thin everywhere else- boobs disappeared. To cap it all off I am soon to lose all my hair through 2nd regime of chemo!

Hi dundeegirl

so sorry to hear what you are going through, you have touched on a subject that has probably effected nearly everyone here but not one that is spoken about freely . I had hysterectomy last year aged 32 including removal of cervix my sex life prior to op was painful then became nonexistant for about a year due to tumours.

Like you i was diagnosed with stage 3a borderline serous cancer and suffered terrible menopausal symptoms the thought of sex would make me shudder having not experienced it for a long time plus it just reminded me of pain. However unlike you i got commenced on hrt which really helped along with a few alcoholic beveridges i managed to relax and actually enjoy it much to my husbands delight lol. My main issue prior to hrt was vaginal dryness which made it painful then i would tense which did not help matters.

I am happy to say now that there is a sex life after hysterectomy although takes time.
I think once you get something to help ease the cause of discomfort you will be fine .I know psychologically it can be difficult i was always looking for pain but now my sex life is probably better now than the last two years.

I hope i have helped to show that there is light at end of tunnel.

However im concerned re hrt how can same type of tumours have different responses to eostrogen not sure if mine was checked ..

take care

sem10 xxxx

Thanks for raising this DundeeGirl. This was something I really worried about before surgery although I was single. I guess for a while I did experience some loss of libido I certainly remember being worried about penetrative sex.

I'm glad to say everything seems to be still working and I also appreciate more now that arousal starts in the head. I still get self conscious about my scar and that I've put weight on. My shape seems to have changed as well.

hi Scaredy Cat,

thanks for your reply, i appreciate everyone sharing on this delicate topic!

Can I ask, are you on HRT ScaredyCat? It seems so far that those who are having more difficulty are those who cannot have oestrogen replacement and I'd be interested in finding anyone who bucks this trend...

Cat
xx