Hi all, thank you for the add to this group. I am a 49 yo who was diagnosed with dcis without hormone receptors in April this year. I was already 2 years into early menopause but apart from hot flushes, night sweats and being more emotional than usual, I was more than happy to be hitting menopause. Then came bc. I had a lumpectomy in May and started tch chemo in June. Well where has the love gone? Sex has become incredibly painful and it is the absolute last thing I fancy. My 1st 2 chemo treatments were horrendous with constant vomiting and runs. I spent 5 days in hospital 1st time around and after my second treatment they changed the carboplatin. I've not been as sick with the new regime but struggle with nausea and fatigue. My husband is scared to touch the breast I had surgery on and I had a port put in on the other side which he can't even look at let alone touch(me either for that matter. It's freaky and sore). I haven't discussed with anyone about the sexual issues as I just assumed it was part and parcel of all of this process. It feels as though my nether regions have shrivelled up and died. Maybe this is just menopause, maybe I'm just too tired and feeling too crappy or maybe it's all of the meds. I don't know. I miss the intimacy, I miss sex and I miss feeling normal. Any suggestions would be greatly appreciated. Thanks. Regards, Karen

I feel your pain :-( I am 6 months out of chemo and nether regions are still shrivelled up and died. and so much has died with it. I wish i had been told all this alot earlier. chemo isnt just for 3 months, you are bald for 6 months and then it takes another 3 to get any decent legnth in your hair. I am desperately seeking remedy too. Thank goodness my lucky stars my husband is patient, caring and kind. its not fair on him and so hard for him to understand too. being here now i feel missinformed and cheated by the very professionals we have paid top money to care for us. absolute sadness - when we are supposed to be in a place to put it all behind us.

Oh lee really???!!!! I still have 2 more lots of chemo to go

Until connecting with the lovely ladies here I was like both of you. I am 3 1/2 years post second lot of chemo(I had a recurrence). I had actually got my drive back, but sex hurts. I have discovered Silk which is a great natural lubricant. I need heaps though. However the game changer for me has been replens. It is a vaginal moisturiser. You use it every 3 days, or more often as needed. It had certainly made me more comfortable. I have gone off it at the moment as I had a rotten UTI. Can't wait to start using again. It is a bit pricy but I bought some online from a amcal with a reusable applicator(yep it's used internally),which is heaps cheaper. Good luck to you both. Paula x

Hi again I must say I'm over chemo but feel as though I don't have a choice so just have to soldier on. I can't imagine ever being the same person as I was before bc as so much has changed, some good, some not so good. My goal is to feel happy, healthy and safe again. Thanks Paula, I'm going to get some replens as well as some silk and give these a go. Anything is worth a try. Lee it's funny how you say you floated through diagnosis and treatment etc and feel that it is crashing down around you now as that is how I have been until last week. I had a shocking week and really struggled to cope. I'm going to ask for some counselling when I go in for chemo next week. I wonder because it all happens so fast that you don't have time to have a reality check until later on in the process. I suppose it stands to reason that it's going to take longer than the actual treatment to get the residue of chemo out of your system. A girlfriend who finished treatment a year ago is still struggling with the effects of the chemo on her body still. Throw in menopause and boy what a cocktail! I think the way forward is to talk about things, get advice on what others before us have tried and to be kind to ourselves. Fortunately I'm not scared to ask questions of my medical professionals. My brother comes with me to all my appointments and what I don't ask he does. I'm sure things will get better and easier. It will just take some time xox

What's happened to the love? | BCNA Online Network

LeeTeamAndo
Member
11 years ago
Yep, supposedly preventative and it opens up a whole new range of totally unforseen and uneccesary health issues. But Im starting to sway towards the natural healing approach to the rest of my life. Everybody has to do what they think and feel is right for them and their family around them.

Doctors are quite persuasive and quick to get you onto all these drugs and treatments but very slow and hesistant to investigate the side effects. Its taken me 9 months to get a referral to a gynocologist, who is a public doc in a public hospital ????

:-(

anyway going to gather up the hubby and kids ad go out for pizza tea

:-)
Cook65
Member
11 years ago
Yes I have to admit I'm a bit surprised if these feelings are so normal, why don't they organise counselling straight away instead of waiting until you fall in a heap and ask for help? It is so mind blowing how every single thing in your life is affected by this treatment, especially when the reality is the cancer has actually gone and all of this is just preventative stuff. I so hope things get easier once chemo is done with! Xoxoxo
LeeTeamAndo
Member
11 years ago
Glad things are getting better and especially glad you have a holiday booked pre radio. i get a bit frustrated with them all saying well its perfectly normal to feel like this and that considering but hey its not perfectly normal to acept this sort of behavious as the new norm ? they prescribe these drugs and treatments with no concern for the implications and follow up required grrrrrrr. i dont however have another answer that fits all :-(

xx
Cook65
Member
11 years ago
Hi lee Hope you're doing ok. I ended up getting a referral to a psychologist at the breast clinic in ringwood east. She mainly deals with women with bc. I've had one appointment so far. Just the initial assessment. It came back that I'm extremely stressed, I'm suffering extreme depression and one point off extreme anxiety. So that explains why I constantly want to push other peoples faces in at the moment! If it doesn't work out I will see my gp for a referral to Sharon Turner. She stressed to me that how I was feeling was quite normal and pretty much to be expected. I only have one more chemo to go which is next Thursday so I am hoping I start to pick up both physically and emotionally after that. I'm feeling very anxious about radiotherapy but everyone keeps telling me that after what I've been through with chemo I will breeze through radiotherapy. I think it's the whole unknown prospect again. We are also going on a holiday in between chemo and radiotherapy so I'm hoping that that will also give me a break from bloody cancer. It just feels like your whole life revolves around it and you can't escape. I'm doing better than I was since writing this initial post. I've had another stint in hospital due to side effects of meds but at least im not continuously crying. I'm still angry at the world, my body, idiotic people who say stupid things to you and all that jazz but at least I'm functioning. I certainly didn't function at all the week I wrote this post! Hope your appointment with Sharon goes well. Hang in there. We'll all get through this together. Xoxo
LeeTeamAndo
Member
11 years ago
Hello, I was referred to Sharon Turner in Heidelburg (If you are in Mebourne) you will need to go to gp first to go on the mental health care plan so you can cliam 10 visits each year and get some of the cost back. I wanted to see someone who knew about cancer and what it does and the treatments and what they do. not just someone to talk to. I am going n thursday for my first apt with her. can let you know how i go.

chemo effects everyone differently. they dont know who will get what symptoms and how long for. dont let them brush any of your questions off.

:-) Lee
mum2jj
Member
11 years ago
Unfortunately I can't take Tamoxifen as my cancer was triple negative. Paula x
suzieq
Member
11 years ago
It works for me but I only put it on the outside when necessary. The vaginal canal is OK now. My atrophy happened when on Arimidex (Arimatose inhibitor) because I am post menopausal - I tried them all and it was ugly!!. My Oncologist put me back on Tamoxifen (only 3 a week at the moment) because vaginal atrophy was causing me great distress. (He said Tamoxifen will fix that - it brings it back - I don't know how but it worked for me). I no longer have Urinary Tract Infections which were constant. He said we are all different with different physiology etc. They just don't know how much is too much or how little is too little. As I said in earlier post: dosage studies have never been done. I just know I can't take one every day at the moment. Good luckxx
mum2jj
Member
11 years ago
I suspect you may be right, but am hoping that's not the case. I have just started to use it again. I am also so using ingredients to try Pams homemade moisturizer. I have tried Vagisil before with little effect. Can you use it internally? Paula
suzieq
Member
11 years ago
I don't know why but I had constant UTIs if I used Replense. My Oncologist said it probably created a "pathway" for the e coli. Trust me I am vigilant with my hygiene but it just kept happening. My Oncologist put me on Tamoxifen even though I am post menopausal but everything back to normal there and for a little bit of extra moisturiser he suggested "vagisil" and explained "exactly" where it should be applied.
Merlins_mum
Member
11 years ago
Yes i have heard Box Hill is good. Great you are happy with the treatment. Not sure why you cant have more disolvable antinaus. The wafers you put under your tongue right? Zofren? Thought the only thing was cost because they sure are expensive. GPs can prescribe them. Good for you with the holiday. We went to Cambodia and Vietnam between my firat nd second lots of Chemo. Lost my hair in Saigon! It was wonderful for me as the focus wasnt bad stuff happening, rather wonderful places and food! I am sure you will both have a great time. Cheers Xx Julie