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Gas lighting by husband

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Harvitt
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. 

06 Jan 20 massive bleed. 7 feb 20 smear came back highly differentiated severe dyskolious. 14 Feb biopsies taken. 21st Feb cc cells found. 22 Feb 20 told poorly differentiated squamous cell. 28 Feb staged at 2a. Tumour is 2.4mm/9mm 6 March restaged at 3c due to 3 lymph node involvement - x1 2cm. 12 Mar 20 met oncologist - told me coronavirus will probably kill me before cc does. 18 March 20 pre scan booked.
Jazza
Jazza's picture

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

  • Feb 04:  (age 47y) Smear test normal
  • Stopped going for smears!
  • Summer 16: persistent watery yellow vaginal discharge
  • Dec 16: PMB
  • Jan 17: Hysteroscopy under GA for ?fibroids - abnormal cervix observed -multiple biopsies taken, 1B1 (1B2 on new FIGO) squamous cell cc diagnosed - confirmed by MRI/PET scans
  • Feb 17: pelvic lymphadenectomy - nodes negative, Da Vinci radical hysterectomy- close anterior margin/LVSI/PNI, restaged to 2A1 (2A1 on new FIGO)
  • Apr/May 17: 6 chemo, 25 external radio, 2 brachy
  • May 20:  NED.  Side effects notably hypotonic bladder since hysterectomy - ongoing ISC, unilateral lymphoedema lower abdo/groin/leg/ankle/foot
Harvitt

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

06 Jan 20 massive bleed. 7 feb 20 smear came back highly differentiated severe dyskolious. 14 Feb biopsies taken. 21st Feb cc cells found. 22 Feb 20 told poorly differentiated squamous cell. 28 Feb staged at 2a. Tumour is 2.4mm/9mm 6 March restaged at 3c due to 3 lymph node involvement - x1 2cm. 12 Mar 20 met oncologist - told me coronavirus will probably kill me before cc does. 18 March 20 pre scan booked.
HockeyMilk

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

Harvitt

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! 

06 Jan 20 massive bleed. 7 feb 20 smear came back highly differentiated severe dyskolious. 14 Feb biopsies taken. 21st Feb cc cells found. 22 Feb 20 told poorly differentiated squamous cell. 28 Feb staged at 2a. Tumour is 2.4mm/9mm 6 March restaged at 3c due to 3 lymph node involvement - x1 2cm. 12 Mar 20 met oncologist - told me coronavirus will probably kill me before cc does. 18 March 20 pre scan booked.
HockeyMilk

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

Harvitt

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. 

06 Jan 20 massive bleed. 7 feb 20 smear came back highly differentiated severe dyskolious. 14 Feb biopsies taken. 21st Feb cc cells found. 22 Feb 20 told poorly differentiated squamous cell. 28 Feb staged at 2a. Tumour is 2.4mm/9mm 6 March restaged at 3c due to 3 lymph node involvement - x1 2cm. 12 Mar 20 met oncologist - told me coronavirus will probably kill me before cc does. 18 March 20 pre scan booked.

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Moving forward from a cancer dignosis