How long will it take to have intercourse again?

Mtrichards

I finished chemo/radiation- the 6 week regime on Oct. 21, 2016- ended up in the hospital for 10 days at the end and am in recovery, now Fe. 2017.  My vagina opening and inside has shrunk considerably. I used dialotors during treatment until i couldn't anymore and now use them again + dildo.  I tried to have intercourse with my partner last week unsuccessfully- it practically killed me and we were nowhere near full penetration. Sorry for the graphic description but I appreciate the forum and it seems a lot of women end up with anal cancer!  Please let me know if you had/are having issues and when do  I need to seek advice or help - How do you know if you are left with permament damage or what is there do to remedy it?    Thank you all! 

mp327

Mtrichards

I can totally relate to your issues.  I was treated over 8 years ago and attempts at intercourse have been a big fail for me, despite regular use of a dilator.  Many women who have these issues have success after seeing a physical therapist who specializes in pelvic floor exercises.  I would suggest talking to your gynecologist about this to see if a referral is possible.  I wish you the best.

Martha

AmyD1310

Pelvic Floor therapy

Hello!

Although I am not quite finished my treatment (March 1st can't get here fast enough!), I have discussed the possibility of requiring a PT script for pelvic floor therapy. My doctors seem on board wth the idea should I need it.  I agree wth Martha. Your Ob/Gyn should be able to refer you to a PT who specializes in pelvic floor therapy. Best of luck!

Lorikat

No luck for me...

No luck for me...

  BUT I was 10 years older than you are when diagnosed 5 years ago and am not heartbroken...

Mollymaude

Well....

No one tells you how bad the damage is going to be. My radiation doctor mumbled something pretty quickly about how I might need a dilator when he was explaining treatment but never asked me anything about my vaginal symptoms or status again, ever. Medical oncologist never touched on the issue. It took me a year to get to pelvic PT. I have to drive two hours to get to her but I think it is going to be worth it. My goal is reduction of pelvic pain and cramping. I think intercourse is possible again but I would go to pelvic PT as soon as you heal up if that's your goal. I've kind of given up on a sex life to be frank, that's depressing but there it is. 

Phoebesnow

Sex

 9 months for me.  I used the dialators.   I also used coconut oil to condition the vagina skin on the outside.  I used Premarin hormone cream.  I also take hormone replacement therapy and I continued on that thru tReatment.  My burning in that area was very severe.  My uretha was so badly burned that I dripped urine for three weeks after treatment.  I could only have gentle sex for several years but now Can tolerate more intensity.  I was 49 at time of treatment and had been thru  menopause when I was 39.  I am now 56 and have an active sex life.

Mtrichards

mp327 said:

Mtrichards

I can totally relate to your issues.  I was treated over 8 years ago and attempts at intercourse have been a big fail for me, despite regular use of a dilator.  Many women who have these issues have success after seeing a physical therapist who specializes in pelvic floor exercises.  I would suggest talking to your gynecologist about this to see if a referral is possible.  I wish you the best.

Martha

thank you

thank you Martha for your reply. I have seen a physical therapist but pelvic floor exercises are not enough? so I will consult w my OBGYN soon.

Mtrichards

AmyD1310 said:

Pelvic Floor therapy

Hello!

Although I am not quite finished my treatment (March 1st can't get here fast enough!), I have discussed the possibility of requiring a PT script for pelvic floor therapy. My doctors seem on board wth the idea should I need it.  I agree wth Martha. Your Ob/Gyn should be able to refer you to a PT who specializes in pelvic floor therapy. Best of luck!

thank you

ok- will go back to OB and request this!

Mtrichards

Mollymaude said:

Well....

No one tells you how bad the damage is going to be. My radiation doctor mumbled something pretty quickly about how I might need a dilator when he was explaining treatment but never asked me anything about my vaginal symptoms or status again, ever. Medical oncologist never touched on the issue. It took me a year to get to pelvic PT. I have to drive two hours to get to her but I think it is going to be worth it. My goal is reduction of pelvic pain and cramping. I think intercourse is possible again but I would go to pelvic PT as soon as you heal up if that's your goal. I've kind of given up on a sex life to be frank, that's depressing but there it is. 

thank you

more depressing news.. ok, well at least I am not crazy. going to get on it. I am desperate for a sex life, just got divorced after 23 years and at least last 10 with no sex, so must get this fixed.

Mtrichards

Phoebesnow said:

Sex

 9 months for me.  I used the dialators.   I also used coconut oil to condition the vagina skin on the outside.  I used Premarin hormone cream.  I also take hormone replacement therapy and I continued on that thru tReatment.  My burning in that area was very severe.  My uretha was so badly burned that I dripped urine for three weeks after treatment.  I could only have gentle sex for several years but now Can tolerate more intensity.  I was 49 at time of treatment and had been thru  menopause when I was 39.  I am now 56 and have an active sex life.

thank you

Yay! one positive. I will follow the advice of you all and so appreciate this forum! thank you all.

xxsarahxx

It's totally not hopeless!

I'll start with the tl;dr.  It's totally possible and the end result can be pretty close to normal, but it's not easy, takes an appreciable amount of dedication and putting up with bs you really would rather not to have to put up with.  

Here's the long story; I'll try to be succinct.

Diagnosed at 39 in September 2015.  Six weeks radiation (total 52 grey); pretty standard, that I completed Thanksgiving 2015.  I didn't use a dilator at all until after I finished treatment.  Maybe in December of 15 or January of 16.  I started with an XS or S, I can't remember.  My Dr. gave me a Syracuse brand, so it was 1/2 or 7/8 in. (http://www.cmtmedical.com/index.php?main_page=product_info&products_id=551). This brand is definitely not the most comfortable, bc they're hard plastic (and cold), but they also allow you to really work things around (sorry, it's graphic but true) because of the same reason.

So I was not very consistent until spring 2016. I went to my OB-GYN in May and he said that I have to be consistent.  5-6x week, 15 minutes/day.  It's better to do it now when the tissue is still remodeling, rather than years from now.  It will be much worse years from now.  So I did that and worked my way up in size to the 43 mm (http://www.cmtmedical.com/index.php?main_page=product_info&cPath=124_125_130_134&products_id=536).  I know, it's huge.  All you can do it is laugh about it. Once I would get used to a size, I'd increase. When I would first increase, I'd start with the previous size for half the time and then use the bigger size for the other half.  It was never easy and there were a lot of tears due to pain and frustration.  There are directions for using dilators for women born without vaginas and I used some of those instructions that I found.  They did help.

But, by September 2016 (~4 months later), I had intercourse for the first time again and although I was tight and it was a little uncomfortable, I'd describe it as sort of normal-ish. Doing the dilator before helped as well. 

The catch here is that you can't stop using the dilator at this point.  Unless you are having sex regularly (maybe every other day?) the vagina contracts.  At least mine did.  Even after a week, there was a difference.

I've asked my doctors how long I'll have to use the dilators daily because it totally sucks and even though it should only take maybe 30 minutes start-to-finish, I'm so busy that it's 30 minutes too long.  Especially when I could be doing something, anything, else that isn't miserable.  I've been told a couple years to a lifetime, so I'm not sure what to believe.

But, if having sex is what you're looking for, it's totally possible.  You just have to have patience and put in the hard work and be willing to deal with the unpleasant discomfort of the dilators.

Happy to provide more details, should anyone be interested.

Phoebesnow

xxsarahxx said:

It's totally not hopeless!

I'll start with the tl;dr.  It's totally possible and the end result can be pretty close to normal, but it's not easy, takes an appreciable amount of dedication and putting up with bs you really would rather not to have to put up with.  

Here's the long story; I'll try to be succinct.

Diagnosed at 39 in September 2015.  Six weeks radiation (total 52 grey); pretty standard, that I completed Thanksgiving 2015.  I didn't use a dilator at all until after I finished treatment.  Maybe in December of 15 or January of 16.  I started with an XS or S, I can't remember.  My Dr. gave me a Syracuse brand, so it was 1/2 or 7/8 in. (http://www.cmtmedical.com/index.php?main_page=product_info&products_id=551). This brand is definitely not the most comfortable, bc they're hard plastic (and cold), but they also allow you to really work things around (sorry, it's graphic but true) because of the same reason.

So I was not very consistent until spring 2016. I went to my OB-GYN in May and he said that I have to be consistent.  5-6x week, 15 minutes/day.  It's better to do it now when the tissue is still remodeling, rather than years from now.  It will be much worse years from now.  So I did that and worked my way up in size to the 43 mm (http://www.cmtmedical.com/index.php?main_page=product_info&cPath=124_125_130_134&products_id=536).  I know, it's huge.  All you can do it is laugh about it. Once I would get used to a size, I'd increase. When I would first increase, I'd start with the previous size for half the time and then use the bigger size for the other half.  It was never easy and there were a lot of tears due to pain and frustration.  There are directions for using dilators for women born without vaginas and I used some of those instructions that I found.  They did help.

But, by September 2016 (~4 months later), I had intercourse for the first time again and although I was tight and it was a little uncomfortable, I'd describe it as sort of normal-ish. Doing the dilator before helped as well. 

The catch here is that you can't stop using the dilator at this point.  Unless you are having sex regularly (maybe every other day?) the vagina contracts.  At least mine did.  Even after a week, there was a difference.

I've asked my doctors how long I'll have to use the dilators daily because it totally sucks and even though it should only take maybe 30 minutes start-to-finish, I'm so busy that it's 30 minutes too long.  Especially when I could be doing something, anything, else that isn't miserable.  I've been told a couple years to a lifetime, so I'm not sure what to believe.

But, if having sex is what you're looking for, it's totally possible.  You just have to have patience and put in the hard work and be willing to deal with the unpleasant discomfort of the dilators.

Happy to provide more details, should anyone be interested.

Dialotors

i stopped using the dialtors  after 3 years.  You are right about the remodeling as periodically I see a discharge from butt to clit On my underwear.  I think of it like a snake shedding its skin.  I certainly didn't have that pre radiation.

 

i do get a kick out of seeing these vaginal remodeling jobs advertised out here in Los Angeles on billboards.  I got mine!  LOL!!!  Bonus!!!

 

my latest issue is I trimmed some pubic hair and it's scratching the folds raw.  I have been putting hair conditioner on the hair and olive oil on the folds.  I think I might lose my mind....oh well...since I'm venting, my anal area around it, not it, has been itchy.  when does it end.......

 

 

 

 

sephie

Phoebesnow said:

Dialotors

i stopped using the dialtors  after 3 years.  You are right about the remodeling as periodically I see a discharge from butt to clit On my underwear.  I think of it like a snake shedding its skin.  I certainly didn't have that pre radiation.

 

i do get a kick out of seeing these vaginal remodeling jobs advertised out here in Los Angeles on billboards.  I got mine!  LOL!!!  Bonus!!!

 

my latest issue is I trimmed some pubic hair and it's scratching the folds raw.  I have been putting hair conditioner on the hair and olive oil on the folds.  I think I might lose my mind....oh well...since I'm venting, my anal area around it, not it, has been itchy.  when does it end.......

 

 

 

 

phoebesnow

i had to smile at your last comment.....(actually i almost laughed---not at you but with you)-----no one would believe what we go thru....it never ends.... one thing after another..... i have concluded that anal cancer is better for single women..... it is hard on hubby ....i feel guilty not having fun during intercourse....not being excited about doing it....what a mess..... hugs to us all......sephie

Phoebesnow

Laughing

heals!