Using a vaginal dilator after radiation

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MKC70
Posts: 25
Joined: Sat May 20, 2017 8:39 pm

Using a vaginal dilator after radiation

Postby MKC70 » Mon Jun 18, 2018 1:04 am

I finished radiation in Feb.. In March I was given two sizes of vaginal dilators to use. I have to be honest and say I used them 2x a week. But then when I started back with chemo, it was somewhat tricky for me to be on a schedule with the dilator use. Long story short. After chemo and my ileosotmy reversal, I am now using the dialtors at least 3 days a week. Originally when I used them in March, it was ok, no pain. Now when I use them, there is still no pain, just awkward. But now I have small traces of blood each time. It isnt heavy and I do not continue bleeding after using them. I am wondering if this is normal. I am assuming so as I have read some do. These dilators are hard plastic. Has anyone who have used vaginal dilators, switched to a dilator a little more soft or other? Just curious on your thoughts. I know it is an awkward topic, but just trying to figure out options if any.

LB10
Posts: 107
Joined: Tue Mar 17, 2015 5:25 pm

Re: Using a vaginal dilator after radiation

Postby LB10 » Mon Jun 18, 2018 4:39 am

Hello,
There has been other discussion of this topic. If you do a search you will find valuable information.
The bleeding is most likely due to thin fragile vaginal lining from the radiation and lack of estrogen. Make sure you are using enough lubricant. I have read of some women switching to something that you would purchase in an adult store, more comfortable than hard plastic. you may want to speak with your doctor about vaginal estrogen. It makes a huge difference. I don't know if you are or plan to be sexually active but regular intercourse will eliminate the need for the dialator. Easier said than done , I know.
Stage III Rectal cancer
Dx 3/14
4/14-7/14 8 rounds Folfox
8/14-9/14 Radiation/Xeloda
1/15 APR colostomy
46 yo wife & mom

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kellywin
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Location: Northern CA

Re: Using a vaginal dilator after radiation

Postby kellywin » Mon Jun 18, 2018 4:36 pm

Go see a really good gynecologist about your options. Are you using any vaginal pills and creams? You should be using those with the dilators. Also, they make ones that you keep in the refrigerator called "cool cones", it's supposed to feel better. Personally, I didn't use those, but I can tell you, the tightening will continue well after you stop radiation and not just from radiation, but being post menopausal (if you weren't before). My first gynecologist was just like "oh yeah, it will be tight, but use it more often". I was like WTF, it's horrendous pain and doesn't effing stretch...got into a fantastic gynecologist who listened and told me "you shouldn't have to live like this. It's great you're alive, but you can't live your life like this". I started crying my eyes out, she was so real, and understanding and told me, we'll find a solution, no matter how long it takes.
Kelly, mom 14 yo girl
Dx 11/15/12 Rectal Cancer @ age 40
Stage IIIC
5.5 weeks Xeloda & Radiation - complete 2/5/13
Colectomy 3/12/13, 7 of 14 nodes positive - no ileo
4/24/13-8/20/13 - 5 rounds Xelox, 1 Xeloda only

MissMolly
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Location: Portland, Ore

Re: Using a vaginal dilator after radiation

Postby MissMolly » Mon Jun 18, 2018 5:28 pm

I agree with Kellywin to find a gynecologist with speciality in post-menopausal care.

Radiation will have the effects on vaginal tissues that will persist after active treatment ends. Menopause will exert its own affects due to hormonal changes. Hormones are powerful chemical messengers - with both localized and systemic effects.

At a local level, lower estrogen levels leave the vaginal tissue dry and parched. This sets up ph changes that leave the perineal area susceptible to yeast and fungus overgrowth. Be cautious of using over the counter vaginal moisturizers (such as ReFresh, as added moisture can invite yeast and fungus colonization.

Lower estrogen also has the effect of thinning vaginal tissue tissue. The vagina becomes like tissue paper, fragile and prone to micro-tears, with thinning of blood vessels. This is why you are noticing spots of blood after using the dilator.

Dilators and moisturizers are limited in what they can offer.

Local use of an estrogen-based product (applicator infused with an estrogen cream; an inserted estrogen ring that releases a small amount of estrogen over time, time-released long acting) can be very helpful. These estrogen modalities have the benefit of estrogen being uptaken locally (vaginal tissue) without broader estrogen exposure that can be concerning for women with HRT sensitive breast tissue and associated secondary cancer risks.

Estrogen is primarily produced by the ovaries but is also secreted by women’s fat pads/fat stores. Anyone in menopause due to radiation will come to appreciate any innate estrogens produced by adipose tissue/fat stores. Loss of estrogen is painful as the vagina tissues shrink and shrivel. It is anologous to a vibrant plant that lacks sufficient hydration and watering.

I have complete pituitary failure and am slim/petite. Therefore, I had little compensatory estrogen available. What I experienced was a rather dramatic closure of my vagina. The walls of the vagina atrophied and constricted without the nourishing effects of estrogen, becoming essentially frozen. A simple tip of a soft cotton Q-tip is impossible to gain entry.

The moral of the story of menopause . . . A dilator and/or sex for stretching will likely not be sufficient. The vaginal tissues need estrogen. An estrogen cream for local application or a long-acting estrogen ring are well-advised. Look for an empathetic and listening gynecologist who works with menopausal patients.
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

lakeswim
Posts: 229
Joined: Sat Mar 31, 2018 9:37 am

Re: Using a vaginal dilator after radiation

Postby lakeswim » Wed Nov 28, 2018 3:34 pm

Hello!
I did 4 months of FOLFOX over the summer and just completed radiation with capecatabine (surgery in early 2019).

I am seeing a pelvic floor specialist (as the all-male Onc Rad staff had little to say on the topic - even when pressed) and she recommended the Cool Cones.
https://www.cmtmedical.com/product/cool-water-cones/

Note that my RadOnc team offered me ZERO info on anything vagina related. I tracked down the specialist myself.

I have used the cool cone 2x now and while I don’t “feel” any discomfort in my vaginal canal at this point - generally speaking (though I have not had intercourse yet since finishing radiation), the coolness of the soft silicone cones feels welcome (and it’s a good excuse to lie down). So far, I’d recommend them.

I am curious to know more about the hormone aspect and plan to ask my GYN provider. I guess vaginal health, as a result of the radiation, will be a lifelong project? So better to make sure I have all the tools in my arsenal.

Thanks, ladies! (And concerned caregivers!)

Lakeswim
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
.....W&W surveillance 2019,2020,2021,2022,2023....
Jan 24 - approaching 5 years this Spring with W&W surveillance to end.
*grateful*

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Using a vaginal dilator after radiation

Postby Lee » Wed Nov 28, 2018 5:19 pm

MKC70 wrote: . . . Now when I use them, there is still no pain, just awkward. But now I have small traces of blood each time. It isnt heavy and I do not continue bleeding after using them. I am wondering if this is normal.t curious on your thoughts. . .


I use a dilator, and yes sometimes there will be light bleeding following it's use. My vigina has some serious scaring as a result of radiation. I once had a GYN PA start asking me a bunch of question, like what happened here. I told her, I thought you knew, I am a colon cancer survivor. That is radiation damage. She told she has seen radiation damage before, butt not this bad. Sorry this all it is.

Hope this helps and good luck,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

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susie0915
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Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Using a vaginal dilator after radiation

Postby susie0915 » Wed Nov 28, 2018 6:47 pm

I can bleed sometimes if toilet paper is rough. I went to my gynecologist and he gave me some Premarin cream to use externally to plump the tissue. It has seemed to help. He said it is definitely from radiation.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

lakeswim
Posts: 229
Joined: Sat Mar 31, 2018 9:37 am

Re: Using a vaginal dilator after radiation

Postby lakeswim » Wed Nov 28, 2018 7:22 pm

So if I’m not having issues now (1 week out), I can’t assume I may not have issues in future? Is that what you’re saying? You’re saying the scarring takes place over time? Thanks.
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
.....W&W surveillance 2019,2020,2021,2022,2023....
Jan 24 - approaching 5 years this Spring with W&W surveillance to end.
*grateful*

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Phuong
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Re: Using a vaginal dilator after radiation

Postby Phuong » Wed Nov 28, 2018 8:44 pm

These are the ones my PT recommended. Much less painful than the hard plastic ones. They're firm but flexible, so it allows you to Get better stretches.
https://www.soulsource.com/collections/silicone-vaginal-dilators

I had to change physical therapists, and both used "Slippery Stuff" lubricant. You can find it on Amazon.

Lastly, Premarin cream will help regain some elasticity.

Hope that helps!
Phuong
http://sonofamotherlessgoat.net/
dx'd Stage III Rectal (T3 N1 M0)
Now Stage IV mCRC

JackieR
Posts: 1
Joined: Mon Apr 22, 2019 7:57 pm

Re: Using a vaginal dilator after radiation

Postby JackieR » Mon Apr 22, 2019 10:03 pm

I second Phuong's recommendation. My PT also recommended Soul Source along with Intimate Rose
https://www.intimaterose.com/collections/vaginal-dilators

Just keep in mind that if you do end up going with a medical grade silicone set vs plastic that you use a water based lubricant as silicone based lubricants can actually react with the silicone dilators.

Hope this helps!

Jolene
Posts: 180
Joined: Wed Jan 23, 2019 10:17 am

Re: Using a vaginal dilator after radiation

Postby Jolene » Tue Apr 23, 2019 1:48 am

MKC70 wrote:I finished radiation in Feb.. In March I was given two sizes of vaginal dilators to use. I have to be honest and say I used them 2x a week. But then when I started back with chemo, it was somewhat tricky for me to be on a schedule with the dilator use. Long story short. After chemo and my ileosotmy reversal, I am now using the dialtors at least 3 days a week. Originally when I used them in March, it was ok, no pain. Now when I use them, there is still no pain, just awkward. But now I have small traces of blood each time. It isnt heavy and I do not continue bleeding after using them. I am wondering if this is normal. I am assuming so as I have read some do. These dilators are hard plastic. Has anyone who have used vaginal dilators, switched to a dilator a little more soft or other? Just curious on your thoughts. I know it is an awkward topic, but just trying to figure out options if any.


Hi MK - I started a whole thread a while back discussing vaginal stenosis and dilators. Lots of great recommendations and advise from everyone. Check it out.

viewtopic.php?f=1&t=61787#p488207
Dx @ 39 F on WW managmeent
Nov 18 - Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT, 28 sessions + Capecitabine at 3000mg daily
Jan - Mar - WW in place (12 weeks)
Mar'19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr - CCR, surgery on hold. 6 cycles of Xelox.
Aug - 6 cycles of Xelox completed
19 - Flex sig, biopsy, PET/MRI
2019 - 2023 - Every 6 mths - Full scope / Flex sig / biopsy, PET / MRI / CT every 6 months
Dec 23 - All clear 5 years on ! Thank god !


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