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Dilators after radiation

heyall_1983
Posts: 1
Joined: Oct 2017

I was wondering if anyone has gone without using the dilators for some time then able to start again? 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2768
Joined: Mar 2013

heyall - I guess there are some questions back.  How long is "some time"?  How long has it been since radiation? 

Stenosis is real and vagina's will close up and future pelvic exams can be very painful.  I think most of us (I am a visitor from the Uterine board) have been told by doctors 3 times a week.  One woman who I miss terribly had said every day.  I know after almost 5 years I can skip days and go back to it with no problem. Early on after radiation I really couldn't have done that.  

Just my two cents.  

Barlee
Posts: 2
Joined: Feb 2018

Hi,

I have finished chem - internal and external radiation one year ago for Vaginal Cancer (Stage 1).  I use a dilator (small) I cannot use a large one at all and every time I use it I bleed, is this normal.  I go for my three month check ups and I of course, bleed when that is being done.  All tests have come back negative (thank heavens) but is it normal to bleed everytime.  Also, my husband is of course fustrated do to the fact that I cannot have intercourse (will that ever change).  Thanks

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2768
Joined: Mar 2013

Barlee, I am 5 years out from uterine cancer having had chemo, external, and internal (brachy) radiation and still have 'pink' on my dialator.  I also was worried and had it checked - I was told it was radiation burns.  I understand the worry about the bleeding - the pink still bothers me. 

The brachy therapy given to cervical cancer patients I think is different than uterine.  Ours is just like a wand/tampon - isn't the cervical brachy more of like a 3-pronged device?  My radiologist had showed it to me and my heart cried for you ladies.

I know it is hard - I really struggled when I started using a medium dialator but kept workiing it - every day.  Work that small - use lube - and I hope you can work up to a medium.  Hugs dear one!

Barlee
Posts: 2
Joined: Feb 2018

Thank you for getting back to me - and a hug right back at you.

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2768
Joined: Mar 2013

Barlee, I saw one of the women on the Uterine board mention they use lidocaine with their dialator as well.  You might want to ask about that. 

Theskinnyscot's picture
Theskinnyscot
Posts: 25
Joined: Dec 2019

hi fellow cancer survivors, I am relatively new at this. I was diagnosed early September with a grade 3 endometrial cancer. I have since had a complete hysterectomy and just started external beam radiation today. I asked the nurse today about a dilator and she said to wait until after treatment. I am a little worried about that as I already have vaginal stenosis and at my last Pap test they had to use a pediatric speculum and I am afraid that after the radiation the whole thing will be totally closed!

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2768
Joined: Mar 2013

dearest skinny, I think any of us who have been there completely understand your fear.  I did not get my dialators until after I completed my internal radiation which was AFTER my external. They have different sizes of dialators, and while I started with a medium they do have a large - both which were very difficult to use at first - I'm not going to lie to you.

Are you having internal, brachy, radiation?  I would invite you to post over on the Uterine board so the other ladies can chime in with their experiences.  It is a little quiet right now, so feel free to PM me if you would like, but you will find the ladies there willing to listen and make suggestions.  

Theskinnyscot's picture
Theskinnyscot
Posts: 25
Joined: Dec 2019

notimeforcancer, thank you for your quick response. I think I am probably. Going to opt for the smallest one they have, can you say "chicken". I am not having Bracry just 25 ebrts which I am nervous about as I have a lot of scarring on my abdomen and pelvis folds from skin grafts as a child and osteoporosis and hemochromatosis, all of which are not going to be happy with all that radiation. Sorry, off on a rant but again thankyou and I hope you and everyone on here has a lovely Christmas.

annie4145
Posts: 182
Joined: Jul 2018

This is the one that my doctor gave me for free. (I know that it is very expensive, but I do recommend it for others.)  It easier to insert and then expand, then insert a larger size. https://www.millimedical.com/purchase/

 

I also used soul source for a dialator set.  I know that you are worried, but I would probably wait until after treatment. I am sure that it will be very sore during treatment.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2768
Joined: Mar 2013

skinny, 'rants' are ok.  You are at a place where you find an open ear and we understand the 'fear'.  I had both external and brachy radiation therapy and never wrapped my mind around that treatment.  

Nan cee
Posts: 1
Joined: Jan 2018

I was treated in April 2015 for Papillary Serous Endometrial Carcinoma IIIc. After complete hysterectomy, debunking, washing, and 28 modes removed, 8 affected, I had 6 rounds of chemo and 25 courses of radiation. I've survived nearly 5 years with this rare form of cancer. My gynecological oncology surgeon as well as my oncologist said they will release me at the 5 yr mark in April 2020. I think this is not good for me. Yes, I've survived for 5 years but the chances of this high grade cancer spreading is very high. I think I should continue dealing with doctors who know what to look for at this point. Does anyone have experience with this situation? Would another hospital take me on with NED? If you have feedback I would appreciate it. I'm 67 years old.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2768
Joined: Mar 2013

Nan cee, I am 7 years out and see the gyn onc annually and still see my gyn because she is awesome.  My gyn still does a pap - I said I am fine with that since I have good insurance.  

Consider telling them you would like to continue seeing them annually due to the agressive type and staging of the cancer.  

I would also suggest posting over on the Uterine board, just scroll down further in the list of Cancer Specific list. 

I want to close with CONGRATS!!! 5 YEARS IS AWESOME!! Believe me,  the wonderfully, supportive women there will be glad to hear your good news as well. 

 

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