Vaginal stenosis - an issue for women with rectal cancer

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Jolene
Posts: 108
Joined: Wed Jan 23, 2019 10:17 am

Re: Vaginal stenosis - an issue for women with rectal cancer

Postby Jolene » Sat Feb 16, 2019 11:59 am

MissMolly wrote:Check out these medical grade silicone vaginal dilators, which come in a set of graduated sizes.

http://www.vaginismus.com

Notice that the silicone dilators come in 5 different sized sets, from a beginning size # 1trainer set (dilator is the diameter of a pencil and narrower than a light flow tampon) to a # 5 advanced set (approximates diameter of carrot).

Medical grade silicone provides for a gentle material.
Karen


I have placed my order ! Can't wait for it to arrive ! It's quite expensive though at over USD95++ but I thought the forum pass and the educational material could be worth it !

By the way, I tried inserting a tampon applicator (not the tampon) briefly into the vagina to see how I felt while awaiting the dilator. It was okay but there were some light blood. If I understood, some prior posters had mentioned to expect some blood when using the dilators too as it's due to the scaring of the vaginal walls ? Any advise would be great.
Dx @ 39 F, married, no kids, full-time work
Nov 18 - Colonoscopy + MRI + CT = Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT prescribed - 28 sessions of radiation + Capecitabine at 3000mg daily
End Dec 18 - Completed CRT with little side effects
Feb 19 - Second MRI showed a speck of residual tumour - continue to wait
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - Complete clinical response. Going for 6 cycles of Xelox.

weisssoccermom
Posts: 5935
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Vaginal stenosis - an issue for women with rectal cancer

Postby weisssoccermom » Sat Feb 16, 2019 12:24 pm

You really need to get something like Premarin....an estrogen based vaginal cream.....to use WITH the dilators. Using the dilators alone isn't going to be comfortable or, in the long run, do the trick by themselves. When you went into menopause, your estrogen levels decreased significantly. Estrogen helps with the elasticity of the tissue as well as some of the lubrication. You NEED that back to help you with the dilators. Otherwise, it will be painful and you won't get the benefits that you are looking for.
Please, call your doctor and get a script for Premarin or something similar. KY isn't enough.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

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susie0915
Posts: 918
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Vaginal stenosis - an issue for women with rectal cancer

Postby susie0915 » Sat Feb 16, 2019 2:35 pm

My doctor gave me Premarin to help plump the tissue. My tissue became so thin that just using rough toilet paper could cause mild bleeding. The Premarin has really helped with that. I use it on the external area mostly.
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 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change
11/18 CEA .6
5/19 CT NED, CEA <.5

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Vaginal stenosis - an issue for women with rectal cancer

Postby MissMolly » Sat Feb 16, 2019 4:48 pm

Jolene:
The silicon dilator set from Vaignimus is unique from other plastic dilators aavailable. The medical grade silicon offers a resistance free material that will not further traumatize fragile vaginal e tissue. It is also free of any endocrine disrupting chemicals and BPA.

I agree and support Weissssoccermom . . . You want/need to use the dilator with a Premarin or comparable estrogen-based cream for topical/local use. Your vaginal tissues need regional estrogen.

A vaginal lubricate or moisturizer, such as K-Y or Replenish, will not suffice. Lubricants and moisturizers inserted into a vagina that is dry and parched will not aide tissue healing. Estrogen replacement, applied internally/locally, is what the tissues are asking for. Lubricants and moisturizers are counter-productive and will lend to bacterial and fungal overgrowth, adding to your distress.

Use of a local Premarin/estrogen can be considered safe for a majority of women as there is not wide systemic estrogen uptake. You can discuss with your GYN appropriate use/dosing of Premarin in conjunction with the dilator set. Always remember that you can use just as much Premarin as you need for no longer than you need.

I had severe vaginal stenosis and frail tissue. Pituitary failure and high dose use of corticosteroids were the variables that
contributed to my early menopause. Attempting to insert a Q-Tip was barely feasible - any attempt was painful and the tissues would bleed liberally. I was emotionally distraught and utterly anguished.

It was a slow process to reverse the physical stenosis and effects. Using Premarin was a necessity to rehabilitate the internal vaginal tissues. I used the Premarin with a Q-Tip, to start. Then advanced to the “beginner’s” set of silicon dilators by Vaginimus. If I can show progress, there is hope for you and other women who are having to deal with the aftermath of unexpected vaginal stenosis and fragile tissue.

But do see your Gyn about using Premarin in conjunction with a dilator. Weisssoccermom is Spot On on the beneficial role of local estrogens.

To be clear: I am not talking about oral estrogen or oral hormone replacement (HRT). There are risks with HRT that need to be assessed by each woman with her medical provider. What is being discussed in this thread is the use of Premarin cream or estrogen/progesterone compounded cream for local/regional internal use vaginally on a low-dose basis. Using just enough for vagina tissue support and well-being for women experiencing abrupt menopause.

It’s great that women can discuss and share on this forum about such a personal and sensitive matter. I learned a lot from a menopause forum. Honestly, I learned more on the forum than from my own Gyn or Pituitary endocrinologist. I believe in the model of people helping people.

Best wishes to you as you explore options to give you wellbeing,
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.

Jolene
Posts: 108
Joined: Wed Jan 23, 2019 10:17 am

Re: Vaginal stenosis - an issue for women with rectal cancer

Postby Jolene » Sun Feb 17, 2019 12:52 am

Hi weisssocermum and Molly - Thank you for your replies ! I am seeing my gynae only in a month's time but will be sure to ask about estrogen cream then ! Thanks for emphasizing that so i won't be dismissing it for sure !
Dx @ 39 F, married, no kids, full-time work
Nov 18 - Colonoscopy + MRI + CT = Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT prescribed - 28 sessions of radiation + Capecitabine at 3000mg daily
End Dec 18 - Completed CRT with little side effects
Feb 19 - Second MRI showed a speck of residual tumour - continue to wait
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - Complete clinical response. Going for 6 cycles of Xelox.

Jolene
Posts: 108
Joined: Wed Jan 23, 2019 10:17 am

Re: Vaginal stenosis - an issue for women with rectal cancer

Postby Jolene » Fri Mar 08, 2019 9:28 pm

Hello ladies ! My Vaginismus pack has arrived !! Quality material indeed ! Thank you for the recommendation !

I was able to get onto the second and third cone quite quickly without any lubricant and felt a little relieved ! There were some slight resistant on the 3rd cone but I managed to relax and slide it in at the end. Do I have to keep doing it for life ? There is also some light blood which I read is quite common with some of you ladies too ?

Also another question is what is your typical routine using the cones and how long do you use it for ? Right now, it feels most convenient right after my shower - I got a bit "bored" after a few tries though but then I was in a bit of a rush to go out. I'm trying to figure out how best to establish a disciplined routine.

Any advise would be much appreciated !

Note to self - need to inquire about premarin cream from gynae in a few weeks time !!
Dx @ 39 F, married, no kids, full-time work
Nov 18 - Colonoscopy + MRI + CT = Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT prescribed - 28 sessions of radiation + Capecitabine at 3000mg daily
End Dec 18 - Completed CRT with little side effects
Feb 19 - Second MRI showed a speck of residual tumour - continue to wait
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - Complete clinical response. Going for 6 cycles of Xelox.

weisssoccermom
Posts: 5935
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Vaginal stenosis - an issue for women with rectal cancer

Postby weisssoccermom » Fri Mar 08, 2019 9:53 pm

Please...do NOT wait on the Premarin cream. Using the dilators without that 'help' isn't going to be effective. You NEED to get either Premarin or another similar type of cream. I seriously cannot stress that enough.
Please don't wait!
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

Jolene
Posts: 108
Joined: Wed Jan 23, 2019 10:17 am

Re: Vaginal stenosis - an issue for women with rectal cancer

Postby Jolene » Sat Mar 09, 2019 3:25 am

weisssoccermom wrote:Please...do NOT wait on the Premarin cream. Using the dilators without that 'help' isn't going to be effective. You NEED to get either Premarin or another similar type of cream. I seriously cannot stress that enough.
Please don't wait!


Hi weissoccermon ! Got the message ! I'm seeing the gynae only in another 2 weeks time. I don't suppose one can get a premarin or similar type of cream off the the shelf without a prescription right ? :?:
Dx @ 39 F, married, no kids, full-time work
Nov 18 - Colonoscopy + MRI + CT = Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT prescribed - 28 sessions of radiation + Capecitabine at 3000mg daily
End Dec 18 - Completed CRT with little side effects
Feb 19 - Second MRI showed a speck of residual tumour - continue to wait
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - Complete clinical response. Going for 6 cycles of Xelox.

weisssoccermom
Posts: 5935
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Vaginal stenosis - an issue for women with rectal cancer

Postby weisssoccermom » Sat Mar 09, 2019 12:23 pm

At least here in the US, it is by prescription only. Can you just call the GYN's office and see if he/she will send a script in before your appt.?
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Vaginal stenosis - an issue for women with rectal cancer

Postby MissMolly » Sat Mar 09, 2019 7:32 pm

Jolene:
The silicon dilator sets by Vaginimus really are exceptional. I heard about them through a women’s support group for uvulitis and their upfront and personal reviews of different products.

I agree with weissoccermom and the importance of Premarin in
conjunction with the dilators. The vaginal tissues are in need of estrogen just as a wilted and dehydrated plant needs water. An over-the-counter lubricant will not suffice and can cause additional misery from unintentional fungal overgrowth.

Can you call your GYN and get a prescription called into your pharmacy for topical Premarin as weissoccermom suggested? As a bridge until the GYN in-office visit that you have scheduled in a few weeks’ time.

There is a respected company that makes holistic women’s healthcare products called Emerita. Emerita makes a cream called Progest that has plant-based estrogen and progesterone. Emerita’s Progest would be one idea as a temporary option for use with the dilator. Use a pea-sized dab of Progest on the dilator as a lubricant before inserting. Emerita products are available on Amazon.
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: 209
Joined: Sat Mar 31, 2018 9:37 am

Re: Vaginal stenosis - an issue for women with rectal cancer

Postby lakeswim » Sun Mar 10, 2019 4:27 pm

MissMolly wrote:Jolene:
The silicon dilator sets by Vaginimus really are exceptional. I heard about them through a women’s support group for uvulitis and their upfront and personal reviews of different products.

I agree with weissoccermom and the importance of Premarin in
conjunction with the dilators. The vaginal tissues are in need of estrogen just as a wilted and dehydrated plant needs water. An over-the-counter lubricant will not suffice and can cause additional misery from unintentional fungal overgrowth.

Can you call your GYN and get a prescription called into your pharmacy for topical Premarin as weissoccermom suggested? As a bridge until the GYN in-office visit that you have scheduled in a few weeks’ time.

There is a respected company that makes holistic women’s healthcare products called Emerita. Emerita makes a cream called Progest that has plant-based estrogen and progesterone. Emerita’s Progest would be one idea as a temporary option for use with the dilator. Use a pea-sized dab of Progest on the dilator as a lubricant before inserting. Emerita products are available on Amazon.
Karen


Thanks, ladies, for this advice. I've been using dilators since I stopped radiation but nothing else. It seems to be going fine, but who knows, so perhaps I should add the estrogen. My issue with premarin is what the industry that produces it does to the horses. Unless the industry has changed in recent years, I'd rather not support it - esp if there are alternatives. Can I get the same results from this Progest as I would from Premarin? Thanks again for all the advice/tips.
50 - F - Mom
RC - dgns 3/18 at age 49
Adenocarcinoma
10-11 cm frm anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept '18
Capecetabine + Radiation - 28 sessions - Oct - Nov 2018
Jan 19 - MRI & flex sig show tumor gone
Mid-Feb 19 - MRI & flex sig show tumor gone
W&W

teachpdx
Posts: 621
Joined: Wed Jan 16, 2013 12:29 am
Location: Portland, OR

Re: Vaginal stenosis - an issue for women with rectal cancer

Postby teachpdx » Wed Mar 13, 2019 1:16 pm

My issue has been with the width not the depth. I gave birth to a 12 lb child so when I used the dilators they seemed to do nothing. I've been celibate (not by choice) since my treatment, but the vaginal opening is very tight and if anything tried to get in there I'm pretty sure I would tear. Not looking for solutions, just mentioning how individual and complicated it can be and maybe we need many more women in the field.
4/24/12 RC T3N1M0 age 53
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!

lakeswim
Posts: 209
Joined: Sat Mar 31, 2018 9:37 am

We need more female-focused clinical studies!

Postby lakeswim » Wed Mar 13, 2019 4:29 pm

I just met with my surgeon yesterday (that's another story), but was reminded again how surgeons constantly point out how radiation affects tissues in the female pelvis - vaginal, urinary, rectal, etc. (short and long term) while rad oncs (the folks in charge of the radiation) will stand there and look you straight in the eye and say over and over how "side effects from radiation end 2 weeks after treatment." It's just bizarre to me. Do they ever talk to each other?

I am also (again!) shocked by how many times the surgeon said to me, when discussing female-related side effects (to radiation, surgery, etc.), "there's only anecdotal evidence and not many studies done on these female issues..." (And she's a female surgeon!) When will they do more studies on women?
50 - F - Mom
RC - dgns 3/18 at age 49
Adenocarcinoma
10-11 cm frm anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept '18
Capecetabine + Radiation - 28 sessions - Oct - Nov 2018
Jan 19 - MRI & flex sig show tumor gone
Mid-Feb 19 - MRI & flex sig show tumor gone
W&W

Jolene
Posts: 108
Joined: Wed Jan 23, 2019 10:17 am

Re: Vaginal stenosis - an issue for women with rectal cancer

Postby Jolene » Tue Mar 26, 2019 10:32 am

Hi ladies - just an update from my visit to the gynae. Finally saw her mid-march and mentioned the vaginal stenosis concern I have and also my early menopausal situation.

She did a vaginal check and determined that I have no stenosis going on - at least for now. She had to use the smallest speculum though as I was apparently quite tensed with the entrance of her equipment.

I brought up the estrogen cream prescription and she said as it's contains hormones, the hospital requires the gynae board agreement for her to prescribe it and right now she won't be doing it until all my gynae scans and blood tests returns for a discussion with the gynae board.

Question is it's been 12 weeks since my CRT and if I was going to have VS would it surface only later and not now ? ( I forgot to ask her this !!! ) :X

She is also considering to put me on HRT after a few more gynae scans and blood tests. However, it wouldn't start until my menopause is medically confirmed (at least 12 months without menstruation consecutively).

Am seeing her mid April for discussion of results and next steps forward ! That is only if I'm good enough for WW and not having to go down the surgery pathway ! :|
Dx @ 39 F, married, no kids, full-time work
Nov 18 - Colonoscopy + MRI + CT = Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT prescribed - 28 sessions of radiation + Capecitabine at 3000mg daily
End Dec 18 - Completed CRT with little side effects
Feb 19 - Second MRI showed a speck of residual tumour - continue to wait
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - Complete clinical response. Going for 6 cycles of Xelox.

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Vaginal stenosis - an issue for women with rectal cancer

Postby MissMolly » Tue Mar 26, 2019 12:54 pm

Jolene:
Your gynecologist does seem to hold to a high level of caution regarding consideration of systemic hormone replacement therapy and/or local vaginal application of estrogen/Premarin.

Remember . . . Systemic hormone replacement therapy (HRT) need not be a lifelong dosing regimen. There are low dose birth control pills (ex. LevLite) that have a sprinkle of estrogens/progesterone. HRT can be instituted for a few months to ease the worst of symptoms, and then tapered off.

Local vagina application of Premarin is a relatively safe option where there a person’s individual health profile identifies concern for estrogen-fuled and estrogen-linked cancers, blood clots, or heart risks.

I had acute onset of menopause due to a Pituitary tumor. The symptoms associated with abrupt hormone absence were intense
and consuming. My thinking was “mush,” as though my brain was calculating through a dense fog. I was emotionally volatile, up and down, crying and laughing. The vaginal dryness felt like a parched desert. I would place ice packs “down there” to find temporary relief.

I find it sad that you have to show 12 consecutive months without a monthly period before the gynecology committee will review your case. Perimenopause (the period of transition) is often a difficult transition for women, depending on the degree of hormone disruption, and is often amenable to LOW dose hormone replacement/supplementation.

Make no mistake . . . “female hormones” affect the entire body. The effects of estrogens, progesterone, FSH, LH affect more than the female sex organs. Women also produce trace amounts of testosterone and androgens.

A woman’s natural adipose/fat stores will produce a small amount of estrogen as women enter menopause and in the years thereafter.

I cannot tell you how dismissive physicians were to my symptoms as my Pituitary failed. “It’s only premature menopause . . . “

If you have distressing, multi-modal symptoms that affect your quality of life, advocate for low dose hormone replacement (usually LOW dose birth control pills) pills for short-term duration or local use/application of Premarin for short term duration.

In the meantime, the line of products by Emeritus is worth researching. Emeritus offers a holistic/plant-based line of products to ease perimenopause and menopause symptoms. Emeritus has an informative home website. It’s products are also available on Amazon.
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.


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