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Vaginal Dialators after Pelvic Radiation for anal cancer

Barb5454's picture
Barb5454
Posts: 63
Joined: Feb 2013

I saw my radiation onc at the beginning of this week. He told me he was giving me a vaginal dialator because the radiation has caused scar tissue and I need to use it so nothing closes. I was surprised because he didn't mention this to me before I had treatments. So I use it 10 minutes a day and it is still painful. I do have a boyfriend but I'm scared of having sex because of the pain. Does anyone have any suggestions? Oh, I was diagnosed having anal cancer Stage 1 possibly Stage 2 last Oct. I had a CT scan done a couple of weeks ago and so far no cancer !! I have to have a sigmoidoscopy done in April to make sure all of it's gone. Thanks for your help. - Barb

mp327's picture
mp327
Posts: 2851
Joined: Jan 2010

It is very important to use the vaginal dilator on a daily basis to keep the vaginal canal open.  I use mine in the shower, which is convenient and keeps me from forgetting.  As you use it more and more, things should improve.  However, there are several other things that can help.  If the dilator seems too large yet, buy some of the tampons that are quite small in size and try inserting those until things get more comfortable, then go back to the dilator.   Replens can be bought OTC and can help with vaginal dryness, which could be causing some of your pain.  My gyno prescribed Vagifem vaginal tablets for me, which have helped a lot, so you might ask about those.  A good water-based lubricant is a must when using the dilator and I use Atroglide.  Also, if you can do some vaginal stimulation prior to inserting the dilator, it can help relax you, making insertion of the dilator less painful.  Pelvic floor exercises can help and many physical therapists specialize in instruction of these.  You would most likely need a referral from your physician for a PT consult, but it would be worth looking into.  Also, as recomended on this site by someone else, you might want to ckeck out this book:  "Ending Female Pain--A Woman's Manual" by Isa Herrera.  I have not read this book, but apparently it contains lots of helpful info regarding vaginal issues such as yours.  I understand your fear of having sex and I hope that you can overcome these issues and resume a normal sex life.  It just takes regular use of the dilator and perhaps some of the other things suggested. 

Congratulations on getting a clean scan.  I hope your upcoming scope will be clear.  Perhaps once you get past that and are reassured that your cancer is gone, you can focus more on the other issues.  I wish you the best. 

jbug2
Posts: 42
Joined: Mar 2013

I am new here, but this is my first post:

My husband and I were told no sex during treatment (12/3/12 thru 1/18/13).  During the middle of February, we discovered it was impossible for entrance ... the radiation onc gave me small, medium and large dilators.  Small fit right away. (I had douched occassionally throughout treatment with about a 1/2" nozzle).  Using Astroglide, relaxing in a tub of warm water, and prior vaginal stimulation (I found that I had to be motivated to withstand the pain) then taking a deep breath and attempting to press the dilator inwards (gently rocking inwards & upwards towards my belly button, my rad scars are at 2:00 in the anal area) I finally got the medium size through my shrunken vaginal entrance.  Leaving it there for awhile, the pain subsided.  I got to where I'd just leave it inside about 10 or 15 minutes while I thought of other things.  Then I tried in the bedroom and discovered that as my husband and I watched TV with the dilator inside, I'd relax and the pain would go away.  I was scheduled to see a onc GYN w prescribed the Premarin cream which I used 2 times a week for about 2 weeks, it seemed to help and I got the large size in basically following the techniques that I used for the medium size.  The cream seemed to heal a few painful spots that I had inside and also seemed to help soften up the band of tight skin I had at the vaginal entrance.  Lucky for me (I never thought so prior to this tightness) my husband kind of stays on the softer side, unlike when he was young, and we were able to fit him inside.  I denied him a few times, not caring to experience any pain, but he sort of gently reminded me that HE wasn't ready to give up on me (I am 56 and he is 62).  For me, I was trying the dilators at the biggest size I could successfully insert and tolarate the pain on a nearly daily basis in the tub, mostly.  My husband and I would test my success once a week.  Astroglide, always! 

We are trying to progress, hopefully there will be no more treatment, but the surgeon just did a procedure in his office to remove an "abcess" that had turned blood red overnight, 2" out from my anal area.  I am being scheduled for an operating room so my surgeon can explore and biopsy a tiny bump in the treated area, just inside the anus. (I am 2 months out from end of chemo/rad treatment). 

Also, the GYN at the cancer center called to say he couldn't get enough cells during my pap test to determine any results.  I canceled my appointment with him, saying I'd return to my regular GYN for the repeat of the pap smear.  But ... the GYN at the cancer center's first remark when he started my exam was "did you have a complete hysterectomy?".  I'm wondering if anyone will be able to find my uterus at my regular GYN's office.  Anxiety!!!  I just did not know that radiation would affect my female organs!!!

eihtak
Posts: 818
Joined: Oct 2011

I think most of us were not aware of the possible side effects of radiation. It sounds like you are doing all the right things with the dilator and your husband. I did not have a pap until 1yr post treatment because my doc said there would be just so much swelling internal and external for a while. When I did, my gyn was able to get a good sample. I am now 2yrs post treatment and seeing a specialist due to internal stenosis. Basicly everything is there and working, but stuck together! We are contemplating a hysterectomy, but difficult due to the stenosis and don't want to cause future problems. (bladder, etc.), yet my mom died of ovarion cancer and I have also been treated for breast cancer so would like to have it done if possible with minimal problems.

Maybe it was just a little too early for your gyn to do a pap?????

I will keep you in my thoughts and prayers for good results with the biopsy, and less anxiety as you recover. Please stay in touch.

Barb5454's picture
Barb5454
Posts: 63
Joined: Feb 2013

I took your advice and it worked! Thank you! I used Replens before but it burned a lot, so I was afraid to use it again. This time it burned a little but it went away. I use a surgical lubricant the doctor gave me for lubrication on the dialator. Between the replens and the lubricant it was a lot easier. Thank you again

Barb5454's picture
Barb5454
Posts: 63
Joined: Feb 2013

 

 

 

 

Barb5454's picture
Barb5454
Posts: 63
Joined: Feb 2013

 

 

 

 

LisaMMiles
Posts: 38
Joined: Mar 2013

Barb, how long will I have to use a dilator? Are we talking months? years? Will it be that way the rest of my life? I hope not as I am only 46 yrs old :(

jcruz
Posts: 214
Joined: Jan 2013

I was told at least a year but I have seen messages from some of the women here that they've been using them for years so that's what I figure I'll be doing.  

Barb5454's picture
Barb5454
Posts: 63
Joined: Feb 2013

I just started using the dilator this past week and I'm 8 weeks post treatmenton my radiation onc told me I wouuse have to use it at least for 18 months. Kits gotten easier. Belive me I was shocked ashen he told me I had to use it. Don't worry you'll be ok

sephie's picture
sephie
Posts: 519
Joined: Apr 2009

lisa, i am 3 years 8 months post tx and i still use my dilator....almost every  day or every other day.... if i do not use it for a week, i can tell that the entrance has tightened.... but the inside is still open...    try to not make this a problem....it is just another exercise to do.... ....good luck with everything....   sephie

eihtak
Posts: 818
Joined: Oct 2011

Just thought I'd chime in. I am almost 2yrs post treatment and still use almost daily, like others if I go too long without is a little more difficult once starting again. I have talked to others though who say, depending on where you are at with sexual activities the dilator may not be needed so much at some point. I have other issues and my husband is ill, so at this point intercourse is not part of the deal but want to keep options (among other things) open. It is important to be able to have a good pap and pelvic exam also.

As always, all in my prayers as we move forward in health!

Barb5454's picture
Barb5454
Posts: 63
Joined: Feb 2013

Ok so I use the dialtor daily. It was the one the rad onc gave me. He told this is all I need. As I have said before my boyfriend and I have tried and the pain is awful. So we tried again last night and it was awful. I still hurt today and he didn't go in hardly at all. Is the scar tissue at the opening? I feel like I'll never be able to have sex again. I have to keep telling myself these treatments were worth it. I know it sounds like I'm feeling sorry for myself but I just don't feel normal anymore. I have a limited income so it's hard (no pun intended lol) to buy an bigger size. Any suggestions?

sephie's picture
sephie
Posts: 519
Joined: Apr 2009

yes, scar tissue could be there or the opening just shrinks due to radiation....  move your dilator around and around at the opening pushing all 4 sides out ( one at a time) ..easily.... dont be rough... the pain will be there for a while.... just try to have sex every few weeks .... if it hurts terrible...stop... we are all different but it took me a really long time to be able to do sex. ( over a year)   ....it still hurts a little.... i did use graduated sizes.... yes, they are expensive.....so just use the one you have and try to stretch out your opening....easy .........sephie

Barb5454's picture
Barb5454
Posts: 63
Joined: Feb 2013

Thank you! Do we have to do this for the rest of our lives?

 

mp327's picture
mp327
Posts: 2851
Joined: Jan 2010

I believe the answer to your question is yes, based upon my own experience.  I don't use the dilator when I go on vacation or, as in the past week, I've been really busy with a home project.  I notice that when I begin using it again, it's not like starting all over again, but there's definitely some "shrinkage."  I think it's best to keep at it.

M1234
Posts: 17
Joined: Oct 2012

Hi Barb,  I think you and I are on a similar schedule with treatment if I remember correctly: Oct2012 diagnois;Nov/Dec Treatment; etc.; stage I/II.  I have had a heck of a time with my vaginal walls and opening. I started with the small dilator and even that did not keep the labia from growing together!  Ugh GYN cut it with siccors durng an appt.! Needless to say there have been numerous start and stops with the dilators over the past 6 mos.  But...I was able to have intercourse with my husband this past weekend - just once - and not much friction.  The skin of my inner labia is extremely red/sore (like a wind burn) - I am only able to use warm water - no soap - no baths - mupirocin ointment each day on effected area - estradoil ointment on tight area near back of vaginal openng - and estrace on vaginal walls.  However, estrace cream was causing additional issues if allowed to touch the red/sore labia area.  I use the dilator twice a week (am using med. size? now) I rub the estrace cream on the dilator per the instructions of my GYN for lubication...but only after appling all the ointments to the labia/etc.  I hope this info is helpful and will allow you some ideas for vaginal wall and skin issues...if not simply encouragement to keep at it.  Believe me when I say there have been many days I simply did not believe I would ever engage in sexual behavoir again.  Plus, I continue to struggle with the painful labia skin issues.  The journey 'back to normal' continues to be overwhelming each and every day whether it is food issues/bowel issues/vaginal issues/nerve damage issues(falls now-ugh!)...there does seem to be 'light' at the end of the tunnel each day as well...just as your CT scan has provided.  My doctors will not be scannng until the 1 year mark.  Instead I get to see the GI surgeoun for a 'physical' review every 3 months.  Keep hangng in there - glad your scan brought good news!

 

Phoebesnow
Posts: 447
Joined: Apr 2011

I used mine for about six months not that often.  It was the Premarin cream that did the trick.  I used the Premarin cream foabout a year.  Never even finished the tube. R u lubing up b4 sex.  Maybe even play around with the dialator b4 sex to stretch it.It was about a year before I was ready to have sex on a regular basis.  Keep trying, it's worth it.

Barb5454's picture
Barb5454
Posts: 63
Joined: Feb 2013

Thank you all for your advice! This is the only place I can go to and talk about this. I guess in some ways I'm still trying to wrap my head around the fact that I ever had cancer. I'm trying to be positive about all of this. Don't take me wrong I'm so insanely happy my scan and colonoscopy came out awesome, but the after effects is something we will all have to live with.

I don't know what I'd do without this site. You all mean so much to me. Thanks again! Hugs!

 

geneviasue's picture
geneviasue
Posts: 89
Joined: Oct 2012

Hello ladies,

I was a Sept 2012 diagnosis, Oct, Nov, Dec treatment. I had the worst time with the labia sticking too. I also have the 6 size dialator set that I use but not as often as I should. Two things that really helped me. I went to a female urologist because of a bladder issue and she connected me with a doctor specializing in female sexual wellness and is nothing like a GYN. That doctor recommended womens health physical therapy which has been such a blessing. It's not like any other physical therapy you've ever expericenced. The therapist worked 45 min a week on my vaginal walls and vaginal opening..stretching it, holding pressure in key areas and really helped me understand what my body had just experienced with the radiation treatments. I learned that my muscles were basically dealing with post traumatic stress. When I would sit too long, or use the dialator, or even think about sex those same muscles would tighten up as a reflex or fear of possible trauma. Just understanding my muscle structure and tissue problems really helped me so much. Plus, the therapy itself was amazing. I'm done now after 8 weeks but so grateful. Sex? My husband and I finally did last month on our anniversary, 5 months post treatment. It did hurt but it had been so long that it didn't last too long (hehe..thank goodness :)) I didn't have any pain afterwards though which I was thankful for. My female wellness doctor also prescribed a susp that is basically a vaginal valium. I've not used one yet but I have them just in case. The other thing that has really helped is coconut oil, pressed. You find it in the cooking oil section at most grogery stores. My female wellness doctor said I should have never used Aquaphor (that's just me though..not a statement for the general public) because it contains petroleium which is a drying agent and she assured me that I was never able to get it all off during my treatments so it acted as a skillet for the radiation to burn me even more. I deal with lots of hip pain now and quick "got to go now" bowels. I still have the vaginal opening stiffness too but its improving. Oh, and my 6 month follow up appointments show I'm still cancer free. Praise the Lord!! Take care everyone and hope this helps someone.

jcruz
Posts: 214
Joined: Jan 2013

Thanks so much for posting this note about your experience.  I know this will be helpful for other women who are dealing with stenosis issues.  I guess I am fortunate that my rad onc and I started talking about the labia sticking immediately after treatment ended and I started using a small dilator right away.  I now use a medium and it seems to be okay.  I'm not sexually active so I don't have to think about that aspect of this weird recovery that we all go through.  All I want is to be able to have a pelvic exam without it being too painful and so far that's what I've gotten.  The information you gave about the female sexual wellness specialist is so interesting.  I would never have known about this without your post.  What would we do without each other?

Barb5454's picture
Barb5454
Posts: 63
Joined: Feb 2013

 

 

 

 I"ve been trying to post and for some reason my post show up blank

 

sandysp's picture
sandysp
Posts: 743
Joined: May 2011

I have not had sex since trying to in January. We have only had the nerve twice in two years. I use my dilators without discomfort but I think the vaginal valium may be something I will inquire about. Evidently there is still a lot of "fight or flight" going on in my vaginal walls and I have had to cope with genital lymphedema, which I have gathered some confidence in my skill the therapists taught me to control.

My regimine is this. I use my dilator every night. I use Vagifem twice per week, vitamin E suppositories every night, I use coconut oil and vitamin e oil and cover those oils with aquaphor to seal them in all over my private parts and back to the peri anal area. My skin is doing much, much better. I also use a vaginal moisturizer lubricant suppository every night. This is in addition to giving myself a Manual Lymphatic drainage massage all over my whole body! I never dreamed it would ever take so much time to take care of myself. I still don't floss every day, but I have learned to do these things.

My husband and I have some personal issues to work through but I am hoping there will still be a chance for more starry nights.

Thanks again for your information.

Sincerely,

Sandy

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