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Expander after radiation

NoniK
Posts: 46
Joined: Oct 2017

I finished radiation two weeks ago. I was given an expander but told not to use it until I see the radiologist in two weeks. I’m wondering how long is normal to wait before beginng use of the expander. Also any suggestions?

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2593
Joined: Mar 2013

Nonik, not sure what the wait is - especially if you are saying you had brachy (internal).  I was given the dialators after the brachy and told to use it for 10 minutes, 3 times a week.  (I don't think I was told to wait)  My experience, I don't think I waited that long. Even with lubricant it was very difficult to get it in, but I kept working at it - and for me - IT TOOK WORK.

Another warrior who used to be on here said to do it everyday for 10 minutes.  I went with her recommendation and it made a huge difference.  I told a friend of mine who had cervical cancer about the 10 minutes "everyday" and when she went back to her doctor, he told her he could tell when he gave her an internal exam.  

I would also add, after 10 minutes every day for the first three years or so following the brachy I don't I need to do it everyday now. 

Jairoldi's picture
Jairoldi
Posts: 214
Joined: May 2017

I only had external 25 (5 x a week 5 weeks) and was given the dialtors at my 6 week follow up with my radiologist. It would have been 4 weeks but it was the holidays. I did ask for lidocaine and was given a tube. That was helpful the first couple of times. I learned to ask for that from this discussion group :)

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1554
Joined: Jun 2015

I was told to wait two weeks as well. My radiologist said it is OK to use it before then but wanted to make sure I was healed from the radiation so that I didn't get discouraged going forward. I am 2 years post treatment now and only use the dialator once a week. I am supposed to use it 2 times a week for 10 minutes each time.  But, I find myself procrastinating more often than not these days. So far, I have had no issues with using it less. I go for my check up on Tuesday so it will be interesting to see if I am still fine.  Note: I am still sexually active and haven't had any issues due to less dialator use.

Congrats on finishing your treatment NoniK!

Love and Hugs,

Cindi

Cass83's picture
Cass83
Posts: 151
Joined: Feb 2017

I was given the dialator at my final brachy therapy (just did 3) and I think they said to wait a few weeks to make sure I was healed as well. Then they said 2-3 times a week, or since I am married, sex counted towards that. At my exams the Dr. said being sexually active once a week would work too. Thankfully I haven't had to use the dialator since that first month.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2593
Joined: Mar 2013

I need to add a comment.  I have, and continue to have, some pink on the end of the dialator (sorry to be graphic).  I have asked my doctor about it and she said it is from the radiation burns.  She said she has seen worse.

derMaus's picture
derMaus
Posts: 561
Joined: Nov 2016

I was given the set of dialators after radiation with little instruction. I didn't do anything with them until a couple of months later, when I pulled them out and discovered they were rock hard and completely straight. Seriously ? Is there a human orifice out there that that will comfortably go into? I doubt it. A few excursions into the smaller ranges revealed that my problem wasn't width as much as angle and tenderness, so I got some fancy silicone ones that are curved and tapered. I'm not having a lot more fun with those, though: the tissues are so thin that everything hurts, regardless of size. I don't currently have a sexual partner so that's not an active issue, but I do need to work on this more 'cause pelvic exams are NOT fun. This is all so strange: I never had ANY problems in this area before, now I'm hyper sensitive. Ah cancer, the gift that keeps on giving...

CheeseQueen57's picture
CheeseQueen57
Posts: 815
Joined: Feb 2016

I got limited instruction with the dilators too. I really tried to use them. I sought out a NP who I had seen had written an article about dilator use. I actually saw her in her office. She referred me for pelvic floor physical therapy. None of it worked. I stil use the dilator twice a week but unfortunately we never successfully could have intercourse. So the whole thing sucks. They never tell you about this. 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1554
Joined: Jun 2015

derMaus, Are you using surgical lubrication with your dialator? If not, you can get it on Amazon. Use a lot of it to start with and see if that helps you. Also, I get a prescription level lidocaine that I use prior to exams and sex. It has made a world of difference for me.  I don't need to use it with the dialator these days. Hope this helps!

Love and Hugs,

Cindi

Armywife's picture
Armywife
Posts: 319
Joined: Feb 2018

Cindi, that Lidocaine is the bomb diggity, isn't it?  My gyn-onc allows me to use it before every pelvic exam, and I'm so grateful.  I don't think I've ever in my whole life had painless intimacy, and exams had become a source of terror for me - I didn't go for many years.  I'm thankful that the Lidocaine takes the edge off

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1554
Joined: Jun 2015

Yep! And I just don't understand why more doctors don't offer it to women that have this kind of pain regardless of whether they have had cancer or not. It should be added to the standard of care instructions!

derMaus's picture
derMaus
Posts: 561
Joined: Nov 2016

Thanks for the lidocaine suggestion; the readiation onc, who's been doing the pelvic exams never mentioned it. You'd think that when I'm squeaking and squawking and crawling backwards off the table to get away from him that the thought MIGHT have occurred to him, or the nurse, or someone, but no. Again, I'm getting better info here than from the professionals. Go, us!

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

SMILE

NoniK
Posts: 46
Joined: Oct 2017

I used the dialator for the first time today and experienced incredible pain. I put lubricant and lidocaine on it. The lidocaine never kicked in. How do you get the lidocaine all the way in prior to using the dialator? It is such a runny gel and doesn’t come with any kind of applicator. I‘m still in unbelievable pain and it was an hour ago.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1554
Joined: Jun 2015

NoniK, I put the lidocaine on and give it about 5 minutes to start working before doing anything else. You can use a QTIP to get some inside and use your fingertip to push some in and around the opening. I am concerned about you still being in pain an hour later. I hope you are using the smaller dialator to start with. You many want to consider using an icepack to give yourself some relief as well. So sorry you are having this pain. 

Love and Hugs

Cindi

NoniK
Posts: 46
Joined: Oct 2017

Thank you so much for the suggestions. It helps tremendously on so many levels. 

Higs, Kristin

NoniK
Posts: 46
Joined: Oct 2017

The prescription I got is for 2% gel and it doesn’t help me at all. I swear my eyes almost rolled back in my head from the pain. I know I have to do as I have a friend with serious urinary issues because things closed up down there.

Thanks for your help.

Hugs, Kristin 

CheeseQueen57's picture
CheeseQueen57
Posts: 815
Joined: Feb 2016

You might consider pelvic floor physical therapy. However sometimes it’s difficult to find one. My doctor thought it was a good idea but had no idea where to refer me. I had to find her myself. 

NoniK
Posts: 46
Joined: Oct 2017

Thanks I’ve had pelvic floor therapy before for a different issue and luckily there are several in my area.

Tamlen's picture
Tamlen
Posts: 201
Joined: Jan 2018

derMaus, can you tell us what brand of silicone dilators you got? Thanks!

derMaus's picture
derMaus
Posts: 561
Joined: Nov 2016

I got Inspire silicon dialators. I saw a video about them on YouTube. https://youtu.be/KA2K3orfbl0.

I bought mine from the Pleasure Chest but a quick Google search also found them on Miles Kimball: 

https://thepleasurechest.com/inspire-silicone-dilator-kit-pink.html

https://www.mileskimball.com/buy-inspire-silicone-dilator-kit-356605

I also purchased a set of silicone 'anal trainers' on Amazon for $14, but haven't tried them yet. They appealed to me because they're short and stubby, but have a sharp indent at the base so they stay in. My problems w/dialators in general is that I have a tipped vagina and they want to slide right back out and when it's already painful to get them in, that's the last thing you want. I will let you know how the 'trainers' work when I get around to trying them.

Tamlen's picture
Tamlen
Posts: 201
Joined: Jan 2018

Thanks for the info!

Susie2's picture
Susie2
Posts: 16
Joined: Nov 2017

I found this thread really helpful, as I'm nearing the end of my brachy treatments. Honestly, from the beginning of my dx, through chemo, and now at this last stage of treatment, I've gleaned such good information and encouragement from all of your posts. Very appreciative. :)

Northwoodsgirl
Posts: 536
Joined: Oct 2009

Funny how healthcare wants to improve the customer experience and quality of care but the gynecology/oncology world can’t get this simple issue improved. Provide clearly written directions for the use and frequency of using the expander/dialator. Also ALWAYS offer Lidocaine ointment/ lubricant unless contraindicated by allergy. They certainly know that many of us suffer needlessly AND it affects our ability and desire to enjoy sex or to tolerate pelvic exams. Sometimes I think providers (physicians and nurses) are so task oriented that they don’ t really even notice what our needless suffering. On that note the next time I have a pelvic I am going to contact the doctors office and see if they have it available and request it. I am also going to ask for a prescription. “Sieze the day!”

Moped7946's picture
Moped7946
Posts: 40
Joined: May 2016

I never used one...wondering if the hallway has closed in on itself espcially since it is now a road to nowhere? Foot in Mouth I laughed when my doc said "Use it it lose it" I mean she was JOKING (kinda/sorta and we both are kind of warped anyway). Will say though that the last pelvic exam WAS painful and they never were before radiation treatments. I went all of my life without that. BOO. As for sex I kinda just don't care any more. I would rather have pie.

NoniK
Posts: 46
Joined: Oct 2017

I don’t know if I would be as diligent but I have a friend who is having issues urinating because things closed up. Because of her experience I feel I have to find a way to make this work. 

Thanks for your feedback and humor. This can be a lonely journey but this forum really helps.

Hugs, Kristin 

Soup52's picture
Soup52
Posts: 902
Joined: Jan 2016

I’m with Moped! I hardly ever use mine and my husband is in hormone treatments, so I don’t have to worry about that either. Give me pie:)

Deztime
Posts: 1
Joined: Nov 2017

I had vaginal radiation  month ago and felt great until last week. I had a bad bladder infection and it’s cleared , I guess, after antibiotics. I have started having burning in my pelvis area. I wake up because of it so sleeping isn’t great. Also how far into the Vagina do you guys insert your dialator?? 

Jairoldi's picture
Jairoldi
Posts: 214
Joined: May 2017

Deztime... I only had external radiation. I use my dialator for about 3 minutes five times a week and only as deep as it will easily go. I had my first 3 month check up last week and the speculum was the most comfortable it had been in years. I made sure to use the the dialator the morning of my appt. In the beginning I did use lidocaine but no longer need to. Now I'm just waiting for my CT Scan, in 3 weeks, to hopefully hear those precious words....no evidence of disease.

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