Gas lighting by husband

13 months ago I was terrified.

12 months ago I thought I was going to die and not see my 3 children grow up and leave my brain damaged mum without someone to look after her. 

11 months ago I started making my FLBCC(ancer) hear my anger, frustration and told it to f*** off and made it realise I wasn't going to give up or give in and that I was far scarier than IT could ever be.

10 months ago I saw the daily radiotherapy as a few hours out from house arrest and home schooling and chemo days were my spa day. 

9 months ago I finished my treatment for 3c1 cancer.

However, during this time my husband has never treated me with kit gloves. He has never valued my fear, feelings or melt downs. Even when I was diagnosed he told me he wished he had the diagnosis... Not because he didn't want me to go through this worry... Oh no... Because he thought he would deal with it far better, do cleanses, tai chi and fasts to eradicate it from his body. He would moan that I would sometimes be longer at the hospital because the children would play up or miss out on their home schooling as this was what I was expected to do and to make lunches and dinners. I would get told I was lazy and to get my arse out of bed on the days prior to me taking the flbcc by the balls and even on my off days during treatment. My children would hear him and then also repeat it at times when I wasn't feeling 100%.

Now, since finishing treatment when I tell him I've got yet another uti (I've had 8 sets of antibiotics in 5 weeks so far Feb to March), I have no feelings for sex, I don't feel turned on, I have hardly any feeling in my vagina or clit and orgasims are as powerful as a flys fart. .. He tells me "you are lucky to be alive, I can't believe you are moaning". I break down and tell him I'm like a zombie and alive from the waist up. He says I should be happy I can see our children grow up. I am. But I have an under functioning vagina. I've spoken to my gyne, my oncologist and my CN nurse... They have little compassion or understanding. My gyne tells me better to be numb than in pain. I ask if it will return... He says 'I don't know'. I ask if there is anything else he can do or I can take? He says 'no'. Same with the oncologist. He tells me to have more sex with my husband has he can see scaring. I nearly cried as well you can see how I feel towards my husband from the above. I feel abandoned... And literally kicked in the vagina... If only I had some feeling to feel the pain!

Is there anything I can do?... Apart from fill in the deep hole where the pond use to be using my husband has the filling? 

Will testosterone or other hormone gel/creams help? Can I see anyone else about my numbness? I'll also add I have lost length - it's not the burnt cocktail sausage /thimble that I thought it was going to be but... It's not as long plus I have No g spot or a clit that doesn't work. I tried to use my old pelvic floor strengthener today. I haven't used it since pre-diagnosis. Well the size I use to be able to use is far too small (width) and when I put it inside it only just goes in. I put all the weights in that I use to be able to hold and it slid straight out like a flume at centre parks! So now I've discovered I have no pelvic floor either. Is it rude to ask if this has happened to everyone else who has had treatment?

Yes I get it... I am lucky to be alive. Yes, I'm lucky to even have a 'functioning' hole for a vagina. I'm only 42 and I feel as if I've been medically castrated and no longer female. I tried to explain this many times to my husband but I get a wall of 'too tired for this' or 'you don't understand how ill you were. You've been given a second chance'. BUT I WANT MY SEXUAILTY BACK. 

Hi Harvitt

I've recently been diagnosed me with atrophic vulvovaginitis - my nether regions are somewhat withered because of oestrogen depletion, so I've been prescribed with a topical oestrogen cream.  I can't comment on the cream because I've yet to start using it but I've done a lot of reading round the subject.  From what I've heard, mostly on some facebook groups, I would suggest you might want to consider getting advice from a menopause specialist who can guide you through hormone options etc; Dr Newson seems to be highly regarded - see link for her website: https://www.menopausedoctor.co.uk/    

Another useful resource might be a book by Jane Lewis called 'Me & My Menopausal Vagina': https://www.amazon.co.uk/ME-MY-MENOPAUSAL-VAGINA-Vaginal-ebook/dp/B07HGH116T

Jazza, thank you. I'll have a look. X

This is a very informative thread. Someone might find this really useful.

I have a private appointment with a gyneurologist tomorrow over the phone to discuss my tiredness, my near numb vagina, my hormones, pelvic floor muscle and recurring uti's. My CN nurse still hasn't got back to me... So taking the bull by the horns... Or should I say taking my vagina by the horns! 

Hey! How was your check up? What are the advises given to you by your gyneurologist? 

Hi HockeyMilk 

I am 10 months out of treatment. I have been feeling exhausted for the last 3 months. I have had no sexual feelings whatsoever. No zest for life. I thought first of all it was lockdown. I kept asking my gp, my CN nurse, gyneoncologist and my oncologist whether it could be my hormone levels, can I have testosterone gel. They said 'no'. I had had terrible reaccurring uti's. Again asked if this is due to my hormones. 'No, it's just part and parcel of rad treatment'. Long and short I have now gone to see a private gyneurologist.

The Dr was amazing. One of the most friendly, warm, normal Dr ive Met... I've met a lot! 

So I emailed her pa with all my concerns 2 weeks ago and what I thought and why.

She asked me again what was going on. She said I was absolutely right and that my gyneoncologist and oncologist weren't treating me with enough hormones as all my ones have been blasted away due to the internal and external rads and chemo I have had... So I basically didn't enter menapause like a normal lady who starts naturally... Mine started prematurely and finished all within 3 weeks (after I finished all my treatment). This can be why I keep suffering from uti and even down to the terrible pains I'm having in my feet (due to hormones and collegen) I then remembered the weeks after I finished treatment I had terrible pain in my hips/feet and legs and after I started hrt, the pains stopped. She said the tablet my Dr has put me on is for perimenapausual or women with the early effects so even though I feeling OK now, sooner than later my body will realise I'm not producing hormones as fast then I will really suffer. She's now prescribing bio identical hormones (all plant based and natural and also can be prescribed on NHS) at much much higher doses plus also using testosterone (so if you see a beard you know why!) as Dr in this country are only just realising (not all only the good ones) that women still need a little bit of this as Well. She said that even women who have gone through menapause fully and naturally their overies still release tiny amounts and the body knows it's still there. Where as my overies have been totally chenoble-d and distroyed and melted! She said that she's actually noted down some of my expressions and loved my comedy I've used to express my problems as they really have given such a wonderful, true picture! 

 So basically for thr last week I'm taking all the hormones she has prescribed and I feel like a different woman. I'm waking up feeling refreshed. My energy levels are high and my pains in my feet don't hurt as much and I'm actually feeling a little bit more sexual/turned on as well. To add no uti recently either. It's early days but I feel better already. I've got vaginal tablets, patches, progesterone tablets and testosterone gel. 

That's a life saver! You will no longer feel zombie xp And your sex life would be active again =) So, you are only taking 4 meds?  One tablet per day?

Hello Harvitt, I'm new to this, just diagnosed stage 3c adenosquamous. Will be having the chemorads and brachytherapy. 

I was just reading around the forum a little and came across your posts which were of interest to me as you've been through the treatments and I see you've been dealing with some of the dreaded side effects that I've just been told about by my doctor. 

As much as I'm dreading all the potential stomach/ bladder / bum issues, I'm really nervous about the anti-sex drive, closed-up vagina side of things too (as well as please God let this work!!!!)

But your post about all this has been so helpful to me! So honest and actually cheered me up so much (not because you're having a crap time but because you're giving such a raw account but in such a humerous way!) Of course it's really helpful to know there is help out there in terms of the remedies you've been offered, patches, gels, etc., but your descriptions of issues and the language you used literally made me laugh so hard I cried! I had to read it out to my partner who didn't know what was wrong with me, and he was in knots as well!! Like a flume at center parcs.. You need to write a book! 

Wishing you all the best and hoping your symptoms continue to improve until you're back to your old self! 

All you girls on this are so strong and brave I need to channel some of that energy before I get into the thick of these treatments! 

best wishes,

Xxxx

Rachel, thank you. From this site and the ladies on here I found the strength and support I needed. The ladies on here are so positive and helpful and with this I thought I don't have to hold back, I can be me... The me I am with my extremely close friends and more. If ever you need anything, even if your having a bad day please message me or use this forum to say how you feel. Don't bottle it up and ask the most stupid feeling questions (there not stupid) or concerns. Let me know how you are getting on. X

Keeley 

Hockeymilk, I'm feeling so much better from the waist up and I'm having flutters of life in my vagina too. I'm still nowhere near to feeling like a red hot vixen but there's something and I keep telling myself "it's only been a month". I'm hoping once the reserves have been filled I will be at it like a rabbit and won't be able to stop myself hahahahahahaha yeah my husband wishes! 

Thank you Keeley, I will. Just waiting on a pet scan now and then a start date for the treatments. The waiting is the worst! Just wanna get started now and hopefully the time will go quickly. You girls have been through such an ordeal but this is a wonderful space to offload feelings and share experiences and tips.
My mam had womb cancer in 2015 which had gone to pelvic and para-aortic nodes due to delays in diagnosis and treatment and we had no clue about cancer or treatments or this whole other world so we thought it was a life sentence. Five years later and aside from the post-treatment effects, she is flying it, no evidence of disease. This has really helped me in trying to be positive. She really could have done with a platform like this during her treatment though as she had nobody who had been there or who was going though it with her. She is completely useless with technology of any kind though and all the explaining in the world does not help - I've tried - repeatedly haha!

Thanks again, and I'll update when I start treatment. 
lots of love and best wishes

xxxx

I've had to friends last year go through breast cancer and they too have found it difficult. They have said that there isn't anything like this forum out there for them. We are extremely lucky. 

Harvitt that is so nice to hear. I just laughed with the rabbit thing laughing. Enjoy it, you deserve to have that feeling after a while of all those things that happened. 

 Yes, I also appreciate this forum so much. Why don't you recommend this to them? Maybe, they can also help us in any way.