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Shout out for the dilators!

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

Today I had my first post-treatment pelvic exam.  I had a brief exam back in October with a radiologist, and it was quite painful.  Since then, I've been using Cool Water cones, and the dilator that the radiology department gave me.  Today's exam, while never pleasant, was much more comfortable.  I had never had a physical exam in this doctor's exam room, since my pre-op appointment was done at my ob/gyn's office.  I had to laugh when I laid down on the table and saw this on the ceiling:  "Oh, I hate this!!!"

All looked and felt good to the doc, and he has put in the request for my first follow-up PET scan.  I should be getting a call in the next day or so to schedule.  Finally.

Chris

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1687
Joined: Jun 2015

So glad you had a good exam. And, your PET scan is going to come back perfect too!

Love and Hugs,

Cindi

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

Chris, I love that message on the ceiling! Was it something that the doctor had installed or something that a patient may have written?

SandyD's picture
SandyD
Posts: 130
Joined: Oct 2015

That's great Chris! Love the sign!

I've found another dilator option, a dilator that also has vibration. It's used as part of a whole program to improve vaginal function (dryness, size, etc.) after cancer. If anyone is interested I'd be glad to provide a link. The developers, a physician and sex counselor, are going to carry out clinical trials on the effectiveness of their approach

SandyD's picture
SandyD
Posts: 130
Joined: Oct 2015

in this situation (cancer diagnosis and treatment) and combatting the sense that I've lost any normality and control over my life. So I'm thinking that maybe I can use this medically based issue to also gain a more positive sense of my body.

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

I'm interested.  Anything to get and keep things functioning nicely down there.

Chris

SandyD's picture
SandyD
Posts: 130
Joined: Oct 2015

Hi Chris,

Here's the info:

Here's the home page for A Woman's Touch: https://sexualityresources.com

Vibrator I ordered: https://sexualityresources.com/product/femani®-vibrating-massage-wand

Explains their program: https://sexualityresources.com/vaginal-renewal-program

Article with some background on how they started: http://isthmus.com/news/news/bringing-sexy-back-a-vibrator-developed-in-madison-restores-pleasure-for-women-following-cancer-and-menopause/

Sandy

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

I'll definitely check them out.

Chris

Prissy777
Posts: 41
Joined: Dec 2014

Www.soulsource.com has soft silicone dilators 

Soup52's picture
Soup52
Posts: 903
Joined: Jan 2016

I have ordered the cool cone dialators and I'm still waiting for them to arrive. How long did it take for other people to get theirs.

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

The first time it took a while.  There was a problem with the pickup, and my shipment was lost.  They promptly re-shipped, then the post office played around bouncing the package from office to office.  The second time I think it took 4 days from order to delivery.  Check the tracking to make sure something hasn't happened.  That's how I discovered things were going screwy with the first order.

Charissa's picture
Charissa
Posts: 124
Joined: May 2016

Okay, this is all new to me and pretty foreign.  Can I ask what these cool cone dialators are and how they help us? Hope this isn't a stupid question. I guess I could Google it. But, if I have you guys, then I'd rather hear it from you. Do I need to order one? If so, can you provide me with the link?  Thank you, ladies. Still awaiting my pathology report. I'm assuming, "No news is good news!" I meet with my oncologist on the 9th. I will have all the findings back then.

In the meantime, I have been spending every minute researching the cold caps. Hoping they work for me. It's worth a try.

Love and hugs!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2803
Joined: Mar 2013

Charissa, if you have internal radiation, brachytherapy, where they place a wand in your vagina to deliver radiation to the vaginal cuff, it can cause stenosis - scarring, rigidity, dryness, and shortening to the vagina.  Often women are given a hard, plastic dialator by their doctors to use after brachytherapy.   As women are always so resourceful!  and have found better ways to deal with this a treating ourselves.  I know this all sounds very scary, but I would recommend not to get too far ahead of yourself and take this one step at a time.  The wonderful warriors here at available to support you along the way.  

Charissa's picture
Charissa
Posts: 124
Joined: May 2016

You guys are too good to me. Thank you, for your reassurance and enlightenment. I am still finding it hard to imagine my insides without a cervix. I still have five weeks to go before I can resume sexual activites with the hubby. I am going to be nervous and scared. I can't even imagine. But, from things I have read on here it sounds like it will all be fine. Like you said, I need to just take it one day at a time and not look ahead. Thank you, for the wonderful words of wisdom.

Soup52's picture
Soup52
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Joined: Jan 2016

Lol! No sooner did I post this, did they arrive:)

BabyCoach's picture
BabyCoach
Posts: 95
Joined: Mar 2016

Charissa, to see if cones are something you need. Everyone is different. You will have time to get them if you need them. I understand how hard is this wait, the best thing you can "order up" is an afternoon at a spa to rest your mind and your emotions so if your body is ready for a soft massage (neck, face, shoulders) and a facial and soft music, scented candles and creamy lotions ORDER TODAY!

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

Dilators are used after radiation to keep the vaginal walls from closing up, to help restore capacity and elasticity.  Think of them as a dildo without the fun component!  In my case, I was losing some elasticity after surgery, so I began using a dilator and the cool cones even before my brachytherapy. 

Recommended use is about 3 times a week, but since you're married, you'll be happy to know that sex can take the place of dilator use  : )

If you don't have radiation, it will probably be a non-issue.

Chris

Charissa's picture
Charissa
Posts: 124
Joined: May 2016

Hello ladies, I met with my radiologist on Monday. He wants to do five brachytherapy treatments in lower doses vs. three treatments at a higher dose. I have my first treatment next Friday (July 1st). When he was explaining the dilator, I misunderstood. I thought he said I'd use it after each treatment for 5 minutes. However, his nurse clarified yesterday that it is used after I complete all five treatments and will need to be used for the next three years. She said the first year is daily, with the exception on the days you have intercourse. And, years two and three are every other day.

In addition to No Time for Cancer's great explanation, he also explained that with my particular Type of cancer he would be lowering the recurrence rate, with radiation, to my vagina from 20% to 1%.  However, if I DO NOT use the dilator faithfully, it can cause stenosis (as broken down above in No Time for Cancer's reply), which means if I fall into the 1% category, he would not be able to administer radiation to that area a second time.

The dilator he showed me did not look impressive; more like a long, hard, plastic missile. I went ahead and ordered two Cool Water Cones (small and medium). They sounded very soothing and easy to work with.  And, I like that they do not have any harsh chemicals, but rather are made with 100% all natural ingredients.

I ended up at Urgent Care this weekend. My bladder never stopped spasming at the end of the flow, but instead got worse. Ends up, I had a bladder infection. I'm thinking I had it from the time I left the hospital. But, with all the pain meds and thinking it was normal after the extensive surgery I ignored it. Plus, it wasn't like any bladder infection I have had in the past - where I had urgency to go frequently and burning upon eliminating. Instead, it was just spasming at the end of the flow and eventually started slightly burning. They put me on Cepro, which then caused a yeast infection.

My-oh-my, this poor body. Yesterday was my mammogram and today was my consultation for my colonoscopy. Luckily, she's allowing me to put that off until after I'm healed and done with radiation. You'd think we'd get cancer from all these exams and toxic stuff we have to drink. Yuck!  I shouldn't complain. I now see the importance of these exams and the need to reamain pro-active vs. reactive.

Thank you all, again, for the wonderful information. I'll let you know how it goes. Love, hugs, and healing to all.

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

Thanks for the info. I'll be heading downthat road after my chemo is done in 9 weeks. Please keep posting your experience. 

Charissa's picture
Charissa
Posts: 124
Joined: May 2016

CheeseQueen57, I will be sure to provide an update as I move forward. I will have my first treatment in five days. P.S. I love your picture & darling hat. Such a pretty lady!

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1687
Joined: Jun 2015

Charissa, It is interesting how different our doctors are... I also had the 5 lower doses of brachytherapy. And, I was told I had to use the dialator two times per week or have sex two times per week or a combination of both per week. I am about 5 months out from by radiation and so far so good on keeping the stenosis away.

You will do fine with the brachy.  If you haven't had a colonoscopy before.... the worst part is the prep the day before. The procedure didn't cause me any issues afterwards and I was asleep while they did it.

Love and Hugs,

Cindi

Charissa's picture
Charissa
Posts: 124
Joined: May 2016

Hi Cindi,

I think the radiologists main concern is, IF I were to be the 1% to get even a slight bit of stenosis he said he couldn't radiate that area again. Sadly, he does get those 1% back. He further explained, he has seen 100% success with warding off stenosis in women who are diligent in using it daily for five minutes (with the exception of the days with intercourse).

Do you have to keep yours in longer, if only doing it twice a week? How and where is the best place to do it? I read something about the shower.  But, I'd think it would fall out - maybe a good time to work on our kegles. ;)  I wonder if it's better to lie down in bed for those five minutes? Did you by chance use yours before finishing your brachytherapy? I thought I read someone had used it in between treatments. I'm sure the radiologist will explain more, when I get to that point. But, I love that you guys have it more figured out then some of these doctor's offices. Such a blessing! And, I kind of like to mull over the information provided on here, do internet research, place my orders, and be ready to go, when the time arises.

Love and hugs back atcha!

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1687
Joined: Jun 2015

Good Morning!

My instructions say to keep the dialator in place for 5-10 minutes 2-3 times per week. My radiologist said 2 times is enough. I do keep it in place for the full 10 minutes. By the way, the nurse told me to move it around a bit and don't just 'stick it in' to make sure I get the sides as well. For me, laying down watching television is the best. It helps make time pass by faster and is easier to make sure I move it around.

I did not use mine until two weeks post the brachytherapy. They wanted to make sure everything was healed first.

You will find out what works best for you as you go along. Who knows?... Since you are doing this daily, the shower might be the easiest place for you. :-)  I agree, this forum is wonderful. I can't imagine going through this journey without all of the support and sharing that we give and receive here.

Love and Hugs,

Cindi

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

That shower thing did not work for me.  I tried it once, but everything was just so awkward.  I do it on the bed and either do it after my shower or as part of my getting ready for sleep routine.  I also use it at least 3 times a week for 10 minutes, and I move it around, too.  Occasionally, I use a vibrator instead, just for a little variety.  I actually started using mine before brachytherapy as I was already experiencing some stenosis from surgery.  When I had my exam in May, my gyn/onc said I was a doing a good job with the dilator as he could see everything.  And it certainly was a much more comfortable exam than the one I had in October.  

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2803
Joined: Mar 2013

Chris, it is funny to have the doctors say, "I can tell you are using the dialator".  Ha!  Yeah...well?????  

When I recommended my dear friend to use it every day her doctor said those very same words to her as well. 

Charissa's picture
Charissa
Posts: 124
Joined: May 2016

You guys are the greatest! I'm trying to envision myself doing this daily - when and what time of day, with little to no privacy with home schooling my daughters. I was talking about it with my hubby. He gladly pipes in, "I will be happy to do it for you every day!" Really? How sweet. This man has a one-track mind. Lol! I dare not tell him I don't have to use it the days we have intercourse - he'll want to do it every day.

Sadly, without being able to continue my hormone therapy and no longer having all my female parts, I'm a little hesitant to go there. His reply to me after asking if he was a little nervous, "Are you kidding me! I'm checking off the days on the calendar." Yikes! Maybe, I better start using the dilator now, before the five treatments end, to get things working again. Oh, this is scary. He's 51 years old and doing hormone therapy, which makes him sexually like an 18 year old again. Not sure how this is going to work? Breathe...one day at a time.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1687
Joined: Jun 2015

Charissa, Yep, take a breath. That first time after surgery is very scary. My best advice is to use a lot of lubricant. I have heard Astroglide works well. I haven't tried it yet. Still using up my KY Jelly first. (Use it on both of you!) Take it slow and easy to see how your body will react. For me, I had issues with painful intercourse before all of this happened. It has actually gotten better since my treatments. My radiologist gave me lidocaine that doesn't burn that I use before sex and it has made a world of difference for me.

If all else fails... switch out his hormones with a placebo! Just kidding, well maybe.... lol

Love and Hugs,

Cindi

Charissa's picture
Charissa
Posts: 124
Joined: May 2016

You are comical!! Not a bad idea. Lol!!

How reassuring that you, too, had pain during intercourse prior to all of this. The same for me. It was actually nice after I delivered our daughters vaginally. Things loosened up a little. KY has been a friend of ours for 26 years. ;) I know he will be patient and kind. I'm just a little nervous, to say the least. I have three more weeks, before I will know.  Thank you, for your wisdom and encouragement.

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

Hi Charissa, my husband and I were careful the first time after surgery and all went fine. I stayed on top so was able to control the entire process - speed, depth, etc. Lubricants definitely help. We've used many different types of paraben-free types - even organic coconut oil! Now we're back to being less careful and more spontaneous. It's joyous and has helped us get back to feeling normal again. Good luck to you!

Charissa's picture
Charissa
Posts: 124
Joined: May 2016

Yay, Kim. That gives me much hope. I purchased a natural lubricant yesterday from the health food store. I also have my cool cones in the fridge for when I'm done with brachytherapy, which I'm not enjoying. In fact, I need to start a new discussion to get some answers regarding that treatment.

I find myself thinking of all of you throughout my day. Sadly, my days get so busy, caring for everyday household, health, and life responsibilities, I don't get a chance to get on here often. He just asked, "What time are you going to bed tonight?"  My reply, "After I read and chat with my on-line CSN friends."

Love and hugs!

christine8822
Posts: 41
Joined: Mar 2016

After about 4 months of using the dumb plastic dialiator from the doctor, it did not help and sex with my husband was still raw and painful. So i got my courage up and went to Lovers Lane, a store that sells sex toys, and explained to the clerk what was going on . She could not have been nicer. She sold me a vibrator with ridges in it that is a lot more realistic, called Fun Factory Tiger. Even better she sold me the water-based lubricant called Sliquid Organics, which is a godsend. I began using the vibrator on its lowest setting and right away noticed a huge improvement in the condition of the labia and inside the vaginal canal. It also MUCH improved my sex life with my husband because sex did not hurt either one of us, we could use the Sliquid during sex, and he was flattered that I didn't just give up on our sex life but took steps to save it. We have lost so much this past year and he has sacrificed, too, and intimacy is so important. My idea is, do whatever you need to do to keep your vaginal canal healthy. You will feel so much better. I think you can buy Fun Factory vibrators and Sliquid online, or just go to a store and buy something. You will be happy you tried it. And throw away those dumb plastic white stick things. It also sounds from this board that the cool cones also work. Good luck, ladies!

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

Dilator seems to be working as far as depth goes, but need something a bit more realistic now.  Even my vibrator is a bit too small, so I will definitely check this out.

Charissa's picture
Charissa
Posts: 124
Joined: May 2016

Thank you, Christine. I will look into these two items. It's so wonderful we all have a safe place to come and discuss ANYTHING and EVERYTHING. We each have wisdom to share that can be an encouragement to another.

P.S. Those white, hard, missles they call dialators just don't seem appealing. I, too, think I would prefer something a little more life-like - in between the real thing. ;)

brissance's picture
brissance
Posts: 192
Joined: May 2016

I nicknamed mine Pinocchio...  

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

I'm sure there's a joke in there somewhere about lies and growing lol.

 

brissance's picture
brissance
Posts: 192
Joined: May 2016

More on his aspirations....  :)  Now I am getting way too naughty.  Sorry

ConnieSW
Posts: 1506
Joined: Jun 2012

giggle

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1687
Joined: Jun 2015

Too funny! Tell him sometimes smaller is better these days!!!!!

By the way, my dialator is pink not white. Missle is a great description of the shape.

Love and Hugs,

Cindi

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