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Dilators

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Southofthelake
Southofthelake's picture
Dilators

Hey ladies.

I started using the dilators last week for the first time - 4 weeks post treatment - and i was hoping anyone might be willing to share their first few weeks experience. 

I think i fall into the category of side effects happening almost immediately after treatment, which my heart is broken about. 

I can get the smallest dilator in ok, girth-wise, but there is still about two finger widths of it sitting outside my vagina. I also feel like i can't get it up over the top of my cervix, like when i try to it the dilator just ends up further out of my vagina, so i feel like the walls are stuck to my cervix. 

But today i wanted to push myself because i am tired of not being intimate with my partner. He is mega understanding but i am sure you all understand the pressure we putvon ourselves to "perform". So, i went for the next size up in dilators and it was mega uncomfortable. It was a real struggle to get it in and when i did, it was only about 2 inches deep. And of course, it did bleed a little which i am not too concerned about.

But i am really sad about the fact that it, sex, should be the most natural thing in the world and it has been taken away from me. 

But anyway, i was wondering, how long did it take for some of you to be able to get up to the larger dilator sizes and movecon to sex? 

 

Much love xx

October 2019 - smear test

November 2019 - results back; hpv with severe dyskaryosis, colposcopy organised.

November 2019 - colposcopy biopsy taken - confirmed abnormal cells

December 2019 - lletz performed

Jan 2020 - called in: confirmed I have cancer

Tests run through Jan and Feb. During this time went through fertility treatment; 5 eggs frozen.

End Feb - confirmed stage 2b CC

Treatment starts March - 28 external radio/5 chemo/4 brachy

Only sat 3 chemo after developing tinnitus

April 25th - finished brachytherapy

July 2020 - awaiting MRI

Izzzy76

I thankfully never had problems with my dialators,  and used the biggest one straight away without any discomfort. I would suggest have your gynaecologists check your vagina before moving up a size

28-8-2019 diagnosed grade 2 squamous 2B 4 cm tumor Mri suspect lymphe nodes but pet scan Shows no lymph nodes 25 radio extended field, 6 chemo and 4 brachy finished October 29 2019
Memagh

Hi, I would definitely mention it to your cns. I'm thankful that I didn't have problems with the Dialators but the largest size is always uncomfortable. I'm sure they can  help with stretching things out a bit and then you'd just have to keep using the Dialators regularly. If I leave it 7 days then I notice a difference. Scar tissue can continue to grow for two years so I'll have to keep it up. I really hope you get sorted soon. It's unfair having to deal with side effects after all we've been through. X Maria

Diagnosed CC 01st August 2019 Stage 1b2 with 1 local lymph node involved. Something else showed up on pet scan. Treatment delayed for surgery, done on September 9th. Found to be a simple ovarian cyst, 1 ovary and tube removed. Treatment plan 5 chemo, 25 radio and 4 brachy. Treatment start date 02nd October 2019. Treatment end date 8th November.

10th February 2020

MRI and Pet-CT clear. NED

3 monthly scans

 

WendyJE

Don't be too hard on yourself and accept that it will take time.  You've had a lot going on in that area and will need to work your way up the dilators.  4 weeks post treatment is no time really. Make sure you are using plenty of lubricant.  I actually bought a silicone vibrator as I found the hard plastic dilators we are given from the hospital to be uncomfortable however prior to this only got to the 3rd out of the 4 sizes of dilator.  

No missed or abnormal smears. Odd symptoms started in April 19.

Diagnosed with Adenocarcinoma 2b with one lymph node involved on 1/7/19.

Started 11 weeks of chemo on 15/7/19.

Started 25 external radiotherapy on 26/8/19.

2 brachytherapy and end of treatment on 6/10/19. 

 

Jazza
Jazza's picture

Hi ladies

I just came across this recent Jo's blog which I think is very relevant for this thread:

https://www.jostrust.org.uk/about-us/news-and-blog/blog/how-can-physiotherapy-help-your-recovery-cervical-cancer%C2%A0

x

  • Feb 04:  (age 47y) Smear test normal
  • Stopped going for smears!
  • Summer 16: persistent watery yellow vaginal discharge
  • Dec 16: post menopausal vaginal bleed
  • Jan 17: Hysteroscopy under GA for ?fibroids - abnormal cervix observed -multiple biopsies taken, 1B1  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 2A
  • Apr/May 17: 6x chemo, 25x external radio, 2x brachy
  • May 20:  NED.  Various side effects notably hypotonic bladder since hysterectomy - ongoing ISC, unilateral lymphoedema lower abdo/groin/leg/ankle/foot
Southofthelake
Southofthelake's picture

Thank you for all your responses. Everyone truly has had a different experience but i do truly wish i fetl into the same caregory as izzy and memagh in being able to use the big one straight away. 

I am feeling lied to by my oncologist because he said that i wouldnt have shrinkage until much later in life as long as i still have sex and use my dilators now. 

My partner checked for me last night and said he could feel a hard ridge just after the vaginal entrance. I mean, that can't be normal. Can it? 

I am seeing my oncologist in a week from now so i can ask all my questions but i don't believe he will take me seriously. 

October 2019 - smear test

November 2019 - results back; hpv with severe dyskaryosis, colposcopy organised.

November 2019 - colposcopy biopsy taken - confirmed abnormal cells

December 2019 - lletz performed

Jan 2020 - called in: confirmed I have cancer

Tests run through Jan and Feb. During this time went through fertility treatment; 5 eggs frozen.

End Feb - confirmed stage 2b CC

Treatment starts March - 28 external radio/5 chemo/4 brachy

Only sat 3 chemo after developing tinnitus

April 25th - finished brachytherapy

July 2020 - awaiting MRI

Memagh

Hi, just wanted to say that I definitely didn't move onto the largest size straight away. I started with the smallest and worked my way up to the larger one. Sorry if my post sounded like I manage the largest one from the start. X

Diagnosed CC 01st August 2019 Stage 1b2 with 1 local lymph node involved. Something else showed up on pet scan. Treatment delayed for surgery, done on September 9th. Found to be a simple ovarian cyst, 1 ovary and tube removed. Treatment plan 5 chemo, 25 radio and 4 brachy. Treatment start date 02nd October 2019. Treatment end date 8th November.

10th February 2020

MRI and Pet-CT clear. NED

3 monthly scans

 

Southofthelake
Southofthelake's picture

Thanks for the post link Jazza. 

When it comes to "new ways of finding intimacy" i disagree with the statment from the poster. A cuddle or a vibrator is just nowhere near the same as intercourse and i would never see it as such. 

I hope others agree. To be told that is just insulting. However some of the other things she said have value. A physical therapist would be a good idea. 

October 2019 - smear test

November 2019 - results back; hpv with severe dyskaryosis, colposcopy organised.

November 2019 - colposcopy biopsy taken - confirmed abnormal cells

December 2019 - lletz performed

Jan 2020 - called in: confirmed I have cancer

Tests run through Jan and Feb. During this time went through fertility treatment; 5 eggs frozen.

End Feb - confirmed stage 2b CC

Treatment starts March - 28 external radio/5 chemo/4 brachy

Only sat 3 chemo after developing tinnitus

April 25th - finished brachytherapy

July 2020 - awaiting MRI

Jazza
Jazza's picture

Hi Southofthelake.

I had about 3 appointments with a womens health physiotherapist for help with dilators.  She helped me to understand the physiology of the vagina and taught me useful dilator techniques.  Recommended.

x

  • Feb 04:  (age 47y) Smear test normal
  • Stopped going for smears!
  • Summer 16: persistent watery yellow vaginal discharge
  • Dec 16: post menopausal vaginal bleed
  • Jan 17: Hysteroscopy under GA for ?fibroids - abnormal cervix observed -multiple biopsies taken, 1B1  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 2A
  • Apr/May 17: 6x chemo, 25x external radio, 2x brachy
  • May 20:  NED.  Various side effects notably hypotonic bladder since hysterectomy - ongoing ISC, unilateral lymphoedema lower abdo/groin/leg/ankle/foot
slicknic

I wish there was a quick fix for this, but it takes time. I started off small and had lots of bleeding. But I've worked up to actual intercourse which my doctor told me was no longer possible. I have a post about all the things I tried. 

Southofthelake
Southofthelake's picture

Hi slicknic, I remember your post. It definitely gave me hope. I have made some progress but think I developed vaginismus as a result of the mental trauma brachytherapy caused, so I asked about a fenton's procedure to see if that will help after the 3 month mark.

October 2019 - smear test

November 2019 - results back; hpv with severe dyskaryosis, colposcopy organised.

November 2019 - colposcopy biopsy taken - confirmed abnormal cells

December 2019 - lletz performed

Jan 2020 - called in: confirmed I have cancer

Tests run through Jan and Feb. During this time went through fertility treatment; 5 eggs frozen.

End Feb - confirmed stage 2b CC

Treatment starts March - 28 external radio/5 chemo/4 brachy

Only sat 3 chemo after developing tinnitus

April 25th - finished brachytherapy

July 2020 - awaiting MRI

slicknic

Hi Southofthelake- I'm glad you have an ongoing conversation with your doc about this because...it's important! Keep speaking up for what you want. I had a lot of scar tissue that at first made me feel like things were never going to get working. Most of my scar tissue was up higher, near my cervix, and pushing past this is what really caused bleeding and pain. But I also had a tight, painful feeling right at the entrance. Both of these constrictions eventually went away after all my efforts with dialators, hormones, lube, etc. The whole time I kept thinking, with each little step forward, this is as good as it gets. But then it would improve again and I started to realize that it just takes time (for me at least). I hope you are able to get to a good spot with what you're doing. Good luck and let me know if I can help!

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Moving forward from a cancer diagnosis