Vaginal Scar Tissue

sierra28

Hi, I hope someone can help with this problem.  I have vaginal scar tissue from my radiation treatment.  My Doctor wants me to try a Estrogen Cream for a few months but I see that there are so many side effects, that I am afraid to use the cream.  Has anyone had this problem and treated in a different manner?  Also, my hair started to thin out about 10 weeks after my last round of chemo.  I did not lose any hair during treatment.  I am going to get tested for thyroid.  Has anyone had this happen to them?

mp327

sierra28

I first was started on a vaginal cream post-treatment for dryness, atrophy and painful/impossible intercourse.  I found the cream to be quite messy, so asked my gyno if there was something else I could use.  She gave me Vagifem vaginal tablets, which are inserted just like a tampon in an applicator.  They are much less messy.  There can be side effects with either the cream or the tablets, primarily vaginal bleeding and slight cramping when first starting on them.  I will occasionally miss a dose or two and will have some spotting. 

As for the hair thinning, mine began coming out on day 21 of treatment and continued to fall out for a couple of months after treatment ended.  I think it's completely normal.  I checked every day for new growth and finally almost 3 months post-treatment, I noticed hair coming back in.  Don't get discouraged--it will come back!

jcruz

sierra28

I've been using Estrace cream for many post-menopausal years.  As Martha said it is a bit messy.  My understanding is that the cream or the tablets are basically topical estrogen and will have far less issues than pills or the patch.  I actually haven't noticed any side effects.

I'm going to ask for a referral to gynecology soon just to see if that doctor might have different ideas about treating vaginal scarring, dryness, etc.  I've lately been having a lot of pain using my dilator and that is something new for me to ask about.  It does seem like it's always something.

Ouch_Ouch_Ouch

jcruz said:

sierra28

I've been using Estrace cream for many post-menopausal years.  As Martha said it is a bit messy.  My understanding is that the cream or the tablets are basically topical estrogen and will have far less issues than pills or the patch.  I actually haven't noticed any side effects.

I'm going to ask for a referral to gynecology soon just to see if that doctor might have different ideas about treating vaginal scarring, dryness, etc.  I've lately been having a lot of pain using my dilator and that is something new for me to ask about.  It does seem like it's always something.

Tip -

From my recent experience with a gyn and a terribly painful exam, I was told by the good women here that the MD should have used a small-sized speculum because of the pelvic radiation and presumed vaginal stenosis. Be sure that yours does use this so-called "viginal speculum". Otherwise, they might be peeling you off the ceiling!

qv62

Ouch_Ouch_Ouch said:

Tip -

From my recent experience with a gyn and a terribly painful exam, I was told by the good women here that the MD should have used a small-sized speculum because of the pelvic radiation and presumed vaginal stenosis. Be sure that yours does use this so-called "viginal speculum". Otherwise, they might be peeling you off the ceiling!

Ouch

Thanks for the tip, I have that appointment next month

Ouch_Ouch_Ouch

qv62 said:

Ouch

Thanks for the tip, I have that appointment next month

Oooops!

Make that: so-called "VIRGINAL speculum".

Cokuda

Vaginal scarring

Im a year out and still using vaginal dilator, etrace cream and vaginal moisturizer. Talk about mess. I asked my oncologust nurse if i have to do dilation ( d-therapy" ) i call it forever. She said yes. Im bummed as it still hurts every time and sometimes still bleeds some after. I guess is this true to anyone? there is no end to the stenosis? I do it evry otherday hoping it will get better...

MKW213

Hair thinning

I also had "late" hair thinning after chemo. It was very distressing. Went on for about 6 weeks and then stopped. Am now seeing new hair coming in. Had to use creative hair "comb overs" for a while and head bands. Felt like Donald Trump!

Ouch_Ouch_Ouch

MKW213 said:

Hair thinning

I also had "late" hair thinning after chemo. It was very distressing. Went on for about 6 weeks and then stopped. Am now seeing new hair coming in. Had to use creative hair "comb overs" for a while and head bands. Felt like Donald Trump!

Hairly there.....

My hair is now about 5/8" long and looks like a really bad Christopher Walken 'do, all standing upright in all directions. My goal is for it to grow enough so that it looks like a wild Nicholas Cage 'do. (Honestly, Cage's hair ought to get it's own billing in his films!)

Phoebesnow

Sex

I used the cream for the first year.  I used dialators for six months.  I resumed sex at the six month mark very gently for one year and then normal.  I have no trouble with internal dryness.  I have alwayshad a healthy sex life. I think that helped go back to balance.  Sometimes it gets dry on the outside and can tear a little but heals quick with olive or coconut oil. Good luck!

sandysp

Cokuda said:

Vaginal scarring

Im a year out and still using vaginal dilator, etrace cream and vaginal moisturizer. Talk about mess. I asked my oncologust nurse if i have to do dilation ( d-therapy" ) i call it forever. She said yes. Im bummed as it still hurts every time and sometimes still bleeds some after. I guess is this true to anyone? there is no end to the stenosis? I do it evry otherday hoping it will get better...

routine

 

MY Pelvic PT said the vagina has a memory. The scarring I had went way back, even to giving birth and the episiomety. The changes in the tissue from the radiation just brought them to the surface. She worked at stretching the tissue and calming the tissue which she called in a state of "fight or flight." My gynecologist says intercourse is the best way to deal with vaginal stenosis. My sex therapist however says to use the dilators daily, use replens inside and out daily or twice daily, also vitamin e oil which I buy from Amazon.smile.com and have it delivered by subscription and aquaphor. In other words, our delicate tissues in that area just can't get enough moisture. It's moisturize, moisturize, moisturize, inside and out, all over the peri anal area too. At first, it seemed weird and now I am glad that I have learned to take care of myself like this.

I hope you can continue to have intercourse, but try different types of dilators to work on stretching the tissue in any event. Sloan Kettering gave me some but told me the best ones are at the sex shops. The ones with some bend to them are more life like. It helps to be able to control the stretching of the tissue. Have you been to see a Pelvic PT? This is a must.

Coconut oil is the least toxic to the tissue of all the lubricants, so if there is some tearing in the vagina during sex, it doesn't sting near as much with coconut oil as with most lubricants which used to feel like fire inside of me.

Good luck. The radiation therapy does a real number on this delicate area but I don't think we have to give up, and need to see it as yet one more opportunity for real self care.

Good luck,

Sandy

Ouch_Ouch_Ouch

sandysp said:

routine

 

MY Pelvic PT said the vagina has a memory. The scarring I had went way back, even to giving birth and the episiomety. The changes in the tissue from the radiation just brought them to the surface. She worked at stretching the tissue and calming the tissue which she called in a state of "fight or flight." My gynecologist says intercourse is the best way to deal with vaginal stenosis. My sex therapist however says to use the dilators daily, use replens inside and out daily or twice daily, also vitamin e oil which I buy from Amazon.smile.com and have it delivered by subscription and aquaphor. In other words, our delicate tissues in that area just can't get enough moisture. It's moisturize, moisturize, moisturize, inside and out, all over the peri anal area too. At first, it seemed weird and now I am glad that I have learned to take care of myself like this.

I hope you can continue to have intercourse, but try different types of dilators to work on stretching the tissue in any event. Sloan Kettering gave me some but told me the best ones are at the sex shops. The ones with some bend to them are more life like. It helps to be able to control the stretching of the tissue. Have you been to see a Pelvic PT? This is a must.

Coconut oil is the least toxic to the tissue of all the lubricants, so if there is some tearing in the vagina during sex, it doesn't sting near as much with coconut oil as with most lubricants which used to feel like fire inside of me.

Good luck. The radiation therapy does a real number on this delicate area but I don't think we have to give up, and need to see it as yet one more opportunity for real self care.

Good luck,

Sandy

Pelvic floor PT for anal cancer patients.

sandysp is absolutely right in her advocacy of pelvic floor PT. There is a three article series on pelvic floor PT for anal cancer patients at the HPV and Anal Cancer Foundation: "How Can Physical Therapy Help with Anal Cancer Recovery?" - http://www.analcancerfoundation.org/2014/09/24/can-pt-help-anal-cancer-recovery/

Ouch_Ouch_Ouch

Ouch_Ouch_Ouch said:

Pelvic floor PT for anal cancer patients.

sandysp is absolutely right in her advocacy of pelvic floor PT. There is a three article series on pelvic floor PT for anal cancer patients at the HPV and Anal Cancer Foundation: "How Can Physical Therapy Help with Anal Cancer Recovery?" - http://www.analcancerfoundation.org/2014/09/24/can-pt-help-anal-cancer-recovery/

Added info for MALE anal cancer thrivers..........

Pelvic floor PT is also meant for males! However, the HPV and Ancal Cancer Foundation articles I noted above say that it may be more difficult to find therapists who work with men.

janet

sandysp said:

routine

 

MY Pelvic PT said the vagina has a memory. The scarring I had went way back, even to giving birth and the episiomety. The changes in the tissue from the radiation just brought them to the surface. She worked at stretching the tissue and calming the tissue which she called in a state of "fight or flight." My gynecologist says intercourse is the best way to deal with vaginal stenosis. My sex therapist however says to use the dilators daily, use replens inside and out daily or twice daily, also vitamin e oil which I buy from Amazon.smile.com and have it delivered by subscription and aquaphor. In other words, our delicate tissues in that area just can't get enough moisture. It's moisturize, moisturize, moisturize, inside and out, all over the peri anal area too. At first, it seemed weird and now I am glad that I have learned to take care of myself like this.

I hope you can continue to have intercourse, but try different types of dilators to work on stretching the tissue in any event. Sloan Kettering gave me some but told me the best ones are at the sex shops. The ones with some bend to them are more life like. It helps to be able to control the stretching of the tissue. Have you been to see a Pelvic PT? This is a must.

Coconut oil is the least toxic to the tissue of all the lubricants, so if there is some tearing in the vagina during sex, it doesn't sting near as much with coconut oil as with most lubricants which used to feel like fire inside of me.

Good luck. The radiation therapy does a real number on this delicate area but I don't think we have to give up, and need to see it as yet one more opportunity for real self care.

Good luck,

Sandy

vaginal stenosis

Help please,  8 yrs out anal cancer & hAvent been intimate since dx, feel done as a women, husband left after cheating, havent been able to have pap, to painful, am I gonna ever gonna experience intimacy again?  No desire all is gone, any suggestions please

Ouch_Ouch_Ouch

janet said:

vaginal stenosis

Help please,  8 yrs out anal cancer & hAvent been intimate since dx, feel done as a women, husband left after cheating, havent been able to have pap, to painful, am I gonna ever gonna experience intimacy again?  No desire all is gone, any suggestions please

Easing pain.

Whether you decide to be intimate with someone again or not, you might consider using vaginal dilators and vaginal medication to make future pelvic exams easier.

I suggest seeing a gynecologist who has experience treating women who were exposed to pelvic radiation (not like the Bozo-ette I saw). The doctor I saw said I couldn't be treated with vaginal meds that contained estrogen because I had cancer, but a batch of the women on this forum told me that that's false. Topical estrogen will help restore your tissues' elasticity. Moisturizers like coconut oil can also be used in addition.

Do you still see your radiation oncologist? Call the office about your vaginal exam pain. You may be given several sizes of vaginal dilators to use. So far, this is the only website I've found that sells dilators that my browser will allow me to go to (it says the others were "unsafe"): Soul Source - https://www.soulsource.com/ There are informative articles reached through the "Applications" tab and an instructional blog entry "How to Use Vaginal Dilators" - https://www.soulsource.com/lorem-ipsum-dolor-sit/ [I just found this site while researching this reply, so have no experience ordering from them.]

In view of my horrible experience with the Bozo-ette gynecologist I saw recently, my radiation oncologist has referred me to a gynecological oncology practise regarding my atypical PAP result and possible biopsy. I am awaiting an appointment (they review all the medical records first, so I'm off to mail them the CDs of my scans).

And I truly do hope that you find someone worthy of you.

Helen321

I had severe vaginal issues

I had severe vaginal issues and my doctor gave me vagifem as recommended on this board. It worked wonders. I've stopped using it because I don't like the idea of using it daily but I do use it when needed which is not very often anymore. I'm 22 months out of treatment/surgery.

Disillusioned

I am interested in learning more about pelvic physical therapy for vaginal scarring. Are these therapists pelvic floor therapists, or do they go by another name?

I am not certain that a dilator was the cause, but the temporal sequence suggests that it was responsible for a bout with cellulitis. Needless to say, I am not anxious to insert anything that would cause a problem. That being said, I need to insert an applicator for insertion of monistat cream for a yeast infection. Has anybody had a problem doing this?

Thank you.

MesquitePoet

I don't think your concerns are uncommon. I think seeing a pelvic floor PT sounds like a great idea! Good luck!