5 YR ANAL SURVIVOR.. VAG. STENOSIS NIGHTMARE,,CRYING, CAN DIALATORS WORK AFTER ALL THIS TIME?

TuffCookieHere2
TuffCookieHere2 Member Posts: 32 Member
edited September 2022 in Anal Cancer #1
Hi Everyone, PLEASE I BEG...CAN YOU READ THIS FULL POST....IM IN TEARS

I have made a post under PLEASE HELP ME, 5 YEAR ANAL CANCER SURVIVOR, I am just desperate now, for help, I am a 5yr anal cancer survivor, I also had breast cancer 3 yrs prior to
anal cancer, neither were related.

After, about 1yr and a half i started noticing abnormal bleeding via vagina, the radiologist MD who was in charge of the anal cancer treatments, NEVER told me about dialators, i find out about them via another doctor....2 yrs ago, I have also with a gyno and gyno oncologist gone into operating room 2 yrs ago...with a spinal tap...to see if they could get to the uterus, and or give me a PAP, they tried cutting out scar tissue, but still couldnt get to the uterus or cervix.....she was afraid to poke a hole into the rectum so she stopped.

Why in the world do they radiate the pelvic organs when its not necessary? My lymph nodes were negative and why the heck wasnt i told about he dilators, i am 49 now, never married no kids, i feel an injustice was done to me and us, why the doctors dont discuss things before hand with us about complications???????????????????

Since that abnormal bleeding 2 yrs ago, it has stopped, but at times i see some brownish
or red....all they tell me to do....is do pelvic ultra sounds and MRI?????????????

This past Saturday, I bled very black, and brownish blood, in the toilet it was dark
brown, with a tint of redness, I AM SO UPSET, THAT THEY CANT GET UP THERE TO GET NOT
ONLY A UTERINE BIOPSY, BUT NOT EVEN A PAP???????????????

Being i am a breast cancer survivor of 9 yrs.....my cancer was based on ESTROGEN,
SO THE GYNO IS SKEPTICAL........ABOUT PUTTING ESTROGEN UP THERE....TO TRY TO OPEN
IT....I HAVE PRACTICED WITH DILATORS, MAYBE NOT ENOUGH I DONT KNOW, BUT I AM VERY
HEAVY AND.....THIS IS EMBARRASSING......BUT MY MOMS HAD TO HELP ME.......its painful
but i got to the large one....but...i was considering...purchasing a DILDO? WHICH
MAY BE MORE SOFTER?

Can anyone help me...anything, any ideas, suggestions....anything? what can i put
up in there besides dildo, dilators, and or what creme??????? since i cant use
estrogen....or can i use a bit of it ??????? does it go through the blood stream
or not??????????????????? Does the ESTROGEN just absorb in the vaginal???????

IS THERE ANY HOPE OF GETTING TO THE UTERUS OR CERVIX SOME WAY????????? ANY WAY?
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Comments

  • z
    z Member Posts: 1,414 Member
    Tuffcookie
    Hi,

    I'm sorry your having these issues. You can get dildos that are very soft, like a human, and you may use a non oil lubricant specifically for lubrication. I suggest lubing up the area and the dildo and just slowly insert. This needs to be done everyday. I initally used the plastic dialator and my fingers to keep it open. I hope you will get some relief with this. It really upsets me that the drs didn't warn you about using dialators. I Lori
  • cujuja4evr
    cujuja4evr Member Posts: 106
    I'm dealing with vaginal stenosis too
    I just had surgery this past Thursday to remove some scar tissue to open up my vaginal canal. Apparently, the scar tissue completely blocked the opening. It opened the canal, but the canal is so very small that it seems impossible for anything to fit. I was given a medium-size dialator...of course after 4 months post treatment! I'm trying to stretch my vaginal canal, but it's like trying to fit a baseball bat through the hole of a straw. It is not the most comfortable feeling in the world. I think I cried the first couple of times I did it because it was painful and because I thought that I will never be the same again. But, after I got over my pity-party, I continued to use the dialator on a daily basis. Hopefully, it will work.

    Oh, the reason I call it a pity-party was not to offend you, but one thing that I realized very quickly is that even though we have a good support team on this board, we are still responsible for our own individual recovery. If we want to get better, we have to put the work in ourselves to improve our own bodies. Believe me, I know the frustration. I'm angered by my rad not telling me about vaginal dialators. I understand completely. But, I'm not going to sit around and complain about what the rad did or didn't do. It's too late to do anything about it because the damage is already done. It's sad because it's like the rad doesn't even care! So, since it's my body, I have to do what is necessary so that my husband and I can get back on track with our sexual activity.

    I'm also using estrogen cream at this time which is supposed to help heal and strengthen vaginal walls.

    Hang in there! Don't give up!
  • dixiegirl
    dixiegirl Member Posts: 1,043 Member

    I'm dealing with vaginal stenosis too
    I just had surgery this past Thursday to remove some scar tissue to open up my vaginal canal. Apparently, the scar tissue completely blocked the opening. It opened the canal, but the canal is so very small that it seems impossible for anything to fit. I was given a medium-size dialator...of course after 4 months post treatment! I'm trying to stretch my vaginal canal, but it's like trying to fit a baseball bat through the hole of a straw. It is not the most comfortable feeling in the world. I think I cried the first couple of times I did it because it was painful and because I thought that I will never be the same again. But, after I got over my pity-party, I continued to use the dialator on a daily basis. Hopefully, it will work.

    Oh, the reason I call it a pity-party was not to offend you, but one thing that I realized very quickly is that even though we have a good support team on this board, we are still responsible for our own individual recovery. If we want to get better, we have to put the work in ourselves to improve our own bodies. Believe me, I know the frustration. I'm angered by my rad not telling me about vaginal dialators. I understand completely. But, I'm not going to sit around and complain about what the rad did or didn't do. It's too late to do anything about it because the damage is already done. It's sad because it's like the rad doesn't even care! So, since it's my body, I have to do what is necessary so that my husband and I can get back on track with our sexual activity.

    I'm also using estrogen cream at this time which is supposed to help heal and strengthen vaginal walls.

    Hang in there! Don't give up!

    Try KY Liquibeads
    They seem to help me some. I don't my sex life will EVER be the same. I'm 46 and this sucks.
  • sephie
    sephie Member Posts: 650 Member
    dilator
    the softest dilators are from soulsource.com. I started with #3. then #4 then #5. use lots of KY on your vaginal entrance and on the dilator. go slow. try to rock it back and forth at little at the entrance. I do not know if they knew as much 5 years ago or where you were treated. always something that we have to deal with because of anal cancer. order these on line. there are 2 sets of dilators .be sure to get the ones for vaginal stenosis , not the ones that people use when they have a sex change. hopes this helps
  • CharlotteW
    CharlotteW Member Posts: 15 Member
    vag stenosis
    Even the name sounds awful! I'm 3 1/2 years out with anal cancer also. I don't think the doctors realized back then what was happening to all of our vaginas. I also had to have a pelvic ultra sound because she couldn't find the uterus. After using dilators and cream for 3 months I had a pap smear on Friday! Never thought I would be excited about that. Just keep on trying. She told me I have the vagina of a teenager and I'm 61. Sex doesn't hurt but it's not quite the same as before. Everyone should make it a point to get their doctors to tell people about dilators during and after rad. Good luck to you!
  • Threeedogmedia
    Threeedogmedia Member Posts: 2 Member

    vag stenosis
    Even the name sounds awful! I'm 3 1/2 years out with anal cancer also. I don't think the doctors realized back then what was happening to all of our vaginas. I also had to have a pelvic ultra sound because she couldn't find the uterus. After using dilators and cream for 3 months I had a pap smear on Friday! Never thought I would be excited about that. Just keep on trying. She told me I have the vagina of a teenager and I'm 61. Sex doesn't hurt but it's not quite the same as before. Everyone should make it a point to get their doctors to tell people about dilators during and after rad. Good luck to you!

    I'm in the same boat
    I too have severe vaginal stenosis. When I saw my gyno for the go ahead for sex after my colostomy surgery and hysterectomy and follow on chemotherapy, it was a year from the time of my surgery because I felt so bad for that long. My whole saga is on my personal bio. My gyn told me I was no deeper than 1.5" and about as big around as a pencil. I was so darn angry! My rad oncologist never told me about dilators and I'm now seeing an attorney because of all this. My friend who is a physician in another state sent me some dilators and coached me how to use them. I'm making some progress but not enough for my husband and I to have sex. Are any of you from Washington? I would love to talk to someone else who had the same kind of treatment to find out what the standard of care was from your doctor and hospital.

    I'm new to this board and am thankful that I can communicate with others who had the same kind of cancer. I'm desperate for advise.
    Karen
  • pjjenkins
    pjjenkins Member Posts: 173

    vag stenosis
    Even the name sounds awful! I'm 3 1/2 years out with anal cancer also. I don't think the doctors realized back then what was happening to all of our vaginas. I also had to have a pelvic ultra sound because she couldn't find the uterus. After using dilators and cream for 3 months I had a pap smear on Friday! Never thought I would be excited about that. Just keep on trying. She told me I have the vagina of a teenager and I'm 61. Sex doesn't hurt but it's not quite the same as before. Everyone should make it a point to get their doctors to tell people about dilators during and after rad. Good luck to you!

    I screamed at my docs
    about this situation and told them I would keep on loudly complaining until it is part of the standard protocol to have women use dilators early on.... The new site at UCSF doesn't mention any precautions on this as part of protocol unless I missed it! Really makes my blood boil. Another case where I feel women are second class citizens -that "they" thought it wouldn't matter to us or our unlucky men!!!
    I still don't feel comfortable that ultrasound will be as good as Pap smears - and there is no way to get a Pap smear from me.
  • janet
    janet Member Posts: 3 Member

    I'm in the same boat
    I too have severe vaginal stenosis. When I saw my gyno for the go ahead for sex after my colostomy surgery and hysterectomy and follow on chemotherapy, it was a year from the time of my surgery because I felt so bad for that long. My whole saga is on my personal bio. My gyn told me I was no deeper than 1.5" and about as big around as a pencil. I was so darn angry! My rad oncologist never told me about dilators and I'm now seeing an attorney because of all this. My friend who is a physician in another state sent me some dilators and coached me how to use them. I'm making some progress but not enough for my husband and I to have sex. Are any of you from Washington? I would love to talk to someone else who had the same kind of treatment to find out what the standard of care was from your doctor and hospital.

    I'm new to this board and am thankful that I can communicate with others who had the same kind of cancer. I'm desperate for advise.
    Karen

    I am in washington and my
    I am in washington and my doctors never told me about my vagina closing, just how painful treatment would be but nothing about what would happen after. So 1st I'm hearing about dilators and it's been 3 yrs for me, probably will never be sexual again is how I feel.. I understand your pain, I am so sorry....
  • chelceyrose
    chelceyrose Member Posts: 6
    dialators
    Oh boy - this is so much like my story. Am starting my 3rd year being free of anal cancer. Like some here I also have vaginal shrinkage. I wasnt told about the dilators until 2 years post treatment. I have tried them - only to keep things opened enough to do pap smears.
    Intercourse is a thing of the past. The problem is scarring in the vagina due to radiation.
    One doc told me he could remove the scar tissue, but when I asked 2 oncologists about it - they said dont do it - the scar tissue is the only thing giving vaginal wall any thickness. To remove scar tissue would in all probability cause such a thinning in the vaginal wall - would lead to a fissure - the rectum pokes thru the vaginal wall. The end result of that would be a permanent colostomy. It really ticks me off that the oncologists dont tell you about these possibly permanent side affects. What my oncologist told me when I went to him to complain - "you must not realize how lucky you are to be alive". My tumor was over 5 1/2 cms and had tenticles.

    In 1988 I had a hysterectomy - cervical cancer. But I still have paps to check for vaginal cancer. I am 55 but wasnt ready for intercourse to be a thing of the past.

    Dont ever feel embarrassed to ask questions. Here I believe we are or have gone thru the same things. God bless you. Will keep you in my prayers....
  • LOLLI64
    LOLLI64 Member Posts: 4

    dialators
    Oh boy - this is so much like my story. Am starting my 3rd year being free of anal cancer. Like some here I also have vaginal shrinkage. I wasnt told about the dilators until 2 years post treatment. I have tried them - only to keep things opened enough to do pap smears.
    Intercourse is a thing of the past. The problem is scarring in the vagina due to radiation.
    One doc told me he could remove the scar tissue, but when I asked 2 oncologists about it - they said dont do it - the scar tissue is the only thing giving vaginal wall any thickness. To remove scar tissue would in all probability cause such a thinning in the vaginal wall - would lead to a fissure - the rectum pokes thru the vaginal wall. The end result of that would be a permanent colostomy. It really ticks me off that the oncologists dont tell you about these possibly permanent side affects. What my oncologist told me when I went to him to complain - "you must not realize how lucky you are to be alive". My tumor was over 5 1/2 cms and had tenticles.

    In 1988 I had a hysterectomy - cervical cancer. But I still have paps to check for vaginal cancer. I am 55 but wasnt ready for intercourse to be a thing of the past.

    Dont ever feel embarrassed to ask questions. Here I believe we are or have gone thru the same things. God bless you. Will keep you in my prayers....

    VAG SCARS
    THIS IS MY FIRST POST TO THIS SITE. ALL OF THE STORIES SOUND SO MUCH LIKE MINE. I AM 2 1/2 YEARS CANCER FREE. I HAD A 10 CM. ANAL TUMOR THAT HAD SPREAD TO THE FIRST LYMPH GLANDS. I RECEIVED 36 RADIATION TREATMENTS AND FOUR MONTHS OF CHEMO - OXALIPLATIN AND XELODA, WHICH WERE ALL EXPERIEMENTAL. THE RADIATION SCARRING HAS ALMOST CLOSED MY VAGINA. I AM A 46 YEAR OLD DIVORCED WOMEN WHO WOULD LIKE TO HAVE SEX AGAIN, BUT I DON'T SEE HOW THAT WOULD BE POSSIBLE. I AM THANKFUL TO BE ALIVE, BUT SOMETIMES, I FEEL LESS OF A WOMEN.
    NO ONLY THE SCARRING, BUT I ALSO HAVE TERRIBLE LEG PAINS, AND THE DR. SEEMS TO THINK IT IS DUE TO SCAR TISSUE CONSTRICTING THE NERVES FROM MY LOWER BACK TO MY LEGS.
    I AM SO GLAD I FOUND THIS SITE.
  • z
    z Member Posts: 1,414 Member
    LOLLI64 said:

    VAG SCARS
    THIS IS MY FIRST POST TO THIS SITE. ALL OF THE STORIES SOUND SO MUCH LIKE MINE. I AM 2 1/2 YEARS CANCER FREE. I HAD A 10 CM. ANAL TUMOR THAT HAD SPREAD TO THE FIRST LYMPH GLANDS. I RECEIVED 36 RADIATION TREATMENTS AND FOUR MONTHS OF CHEMO - OXALIPLATIN AND XELODA, WHICH WERE ALL EXPERIEMENTAL. THE RADIATION SCARRING HAS ALMOST CLOSED MY VAGINA. I AM A 46 YEAR OLD DIVORCED WOMEN WHO WOULD LIKE TO HAVE SEX AGAIN, BUT I DON'T SEE HOW THAT WOULD BE POSSIBLE. I AM THANKFUL TO BE ALIVE, BUT SOMETIMES, I FEEL LESS OF A WOMEN.
    NO ONLY THE SCARRING, BUT I ALSO HAVE TERRIBLE LEG PAINS, AND THE DR. SEEMS TO THINK IT IS DUE TO SCAR TISSUE CONSTRICTING THE NERVES FROM MY LOWER BACK TO MY LEGS.
    I AM SO GLAD I FOUND THIS SITE.

    Lolli64
    Hello and welcome. I am so glad you are cancer free for 2 1/2 years, this is great. Did the drs use the different tx due to the size of the tumor? I know that there are surgerys that will open you back up again, if you want to do that. I know its difficult with the side effects of the tx we receive, but the cancer has to be stopped. I wish you well. Lori
  • lizdeli
    lizdeli Member Posts: 569 Member
    z said:

    Lolli64
    Hello and welcome. I am so glad you are cancer free for 2 1/2 years, this is great. Did the drs use the different tx due to the size of the tumor? I know that there are surgerys that will open you back up again, if you want to do that. I know its difficult with the side effects of the tx we receive, but the cancer has to be stopped. I wish you well. Lori

    Welcome
    Lolli64
    So glad you found this forum. Congratulations on being 2 1/2 years NED. Your journey will inspire many of us here and those that are just beginning their journey. We know how difficult the post treatment side effects can be and I am sorry you are suffering through that. I hope that there is a remedy for you.

    Your chemo regime is very different from what most of us had. Was the cancer rectal with the tumor in the anal canal? Regardless, I'm so happy that that the treatment was successful in eradicating the tumor and disease.

    Thank you for sharing your story.
  • LOLLI64
    LOLLI64 Member Posts: 4
    lizdeli said:

    Welcome
    Lolli64
    So glad you found this forum. Congratulations on being 2 1/2 years NED. Your journey will inspire many of us here and those that are just beginning their journey. We know how difficult the post treatment side effects can be and I am sorry you are suffering through that. I hope that there is a remedy for you.

    Your chemo regime is very different from what most of us had. Was the cancer rectal with the tumor in the anal canal? Regardless, I'm so happy that that the treatment was successful in eradicating the tumor and disease.

    Thank you for sharing your story.

    THANKS FOR THE WARM
    THANKS FOR THE WARM WELCOMES. MY TUMOR WAS ANAL, AND I WAS TREATED AT MD ANDERSON HOSPITAL IN HOUSTON, TX. I WAS GIVEN THE OPTION OF TAKING STANDARD TREATMENTS, OR THE OPTION OF THE NEW CLINICAL TRIAL. AFTER MANY PRAYERS I DECIDED FOR THE CLINIAL TRIAL, BECAUSE I FELT THAT IF IT DIDN'T HELP ME, THEN ATLEAST IT WAS RESEARCH FOR THE NEXT PATIENT. BY GOD'S GOOD GRACE IT WAS SUCESSFUL. I AM VERY THANKFUL TO BE ALIVE AFTER STAGE III CANCER, AND I REALLY TRY NOT TO COMPLAIN ABOUT THE SIDE EFFECTS. THIS SITE IS A PLACE WERE WE CAN VOICE OUR CONCERNS, AND BE UNDERSTOOD. MY MESSAGE TO ANYONE WHO IS IN TREATMENT OR BEGINNING TREATMENT, IS TO STAY STRONG, WE MAY NOT HAVE ANY CONTROL OVER THE DESEASE, BUT WE CAN CONTROL OUR FIGHTING ATTITUDE !!
  • sephie
    sephie Member Posts: 650 Member
    LOLLI64 said:

    THANKS FOR THE WARM
    THANKS FOR THE WARM WELCOMES. MY TUMOR WAS ANAL, AND I WAS TREATED AT MD ANDERSON HOSPITAL IN HOUSTON, TX. I WAS GIVEN THE OPTION OF TAKING STANDARD TREATMENTS, OR THE OPTION OF THE NEW CLINICAL TRIAL. AFTER MANY PRAYERS I DECIDED FOR THE CLINIAL TRIAL, BECAUSE I FELT THAT IF IT DIDN'T HELP ME, THEN ATLEAST IT WAS RESEARCH FOR THE NEXT PATIENT. BY GOD'S GOOD GRACE IT WAS SUCESSFUL. I AM VERY THANKFUL TO BE ALIVE AFTER STAGE III CANCER, AND I REALLY TRY NOT TO COMPLAIN ABOUT THE SIDE EFFECTS. THIS SITE IS A PLACE WERE WE CAN VOICE OUR CONCERNS, AND BE UNDERSTOOD. MY MESSAGE TO ANYONE WHO IS IN TREATMENT OR BEGINNING TREATMENT, IS TO STAY STRONG, WE MAY NOT HAVE ANY CONTROL OVER THE DESEASE, BUT WE CAN CONTROL OUR FIGHTING ATTITUDE !!

    docs
    hey, i was also treated at MDA. if you do not mind, who were your docs??? mine were Overman, Delclos, and Skibber. I did regular protocol. they did not send me to one but i asked for a gynecologist for help because I remembered that the PA for Delclos did tell me that my vagina might close up but they did NOT give me dilators until I asked for them (2 months after I was discharged.) I was treated in summer of 2009. this has changed since i was treated. now they have started putting dilators inside the vagina during radiation. they are learning more and more. I am 17 months out but still have pain on left side of anus that they check each time for reoccurance. I was stage 2, no mets, no nodes.
  • Farrah RIP
    Farrah RIP Member Posts: 1
    Same here- 5yr mark as new permanent virgin!
    My rad doc gave me dilators, but I stupidly didn't use them. My boyfriend (at the time) said, "You never liked sex anyway!" Well, maybe I just didn't like it with him, eh wot? Now I'm angry with myself, and curious about surgery. I did have a temporary colostomy during the radiation, then it was successfully "taken down" three months later. Wouldn't want that again, as someone mentioned that surgery might thin the walls between vagina and rectum. I can't even get my finger inside, and had to actually be "put under" for exams (anal stenosis as well, of course). As I mentioned on my profile, I think I'll create a "No-Sex Singles " dating site. Anybody good with building web-sites? Anyway, good luck to us both! Sorry I'm late; just now discovered this site.
  • eihtak
    eihtak Member Posts: 1,473 Member

    Same here- 5yr mark as new permanent virgin!
    My rad doc gave me dilators, but I stupidly didn't use them. My boyfriend (at the time) said, "You never liked sex anyway!" Well, maybe I just didn't like it with him, eh wot? Now I'm angry with myself, and curious about surgery. I did have a temporary colostomy during the radiation, then it was successfully "taken down" three months later. Wouldn't want that again, as someone mentioned that surgery might thin the walls between vagina and rectum. I can't even get my finger inside, and had to actually be "put under" for exams (anal stenosis as well, of course). As I mentioned on my profile, I think I'll create a "No-Sex Singles " dating site. Anybody good with building web-sites? Anyway, good luck to us both! Sorry I'm late; just now discovered this site.

    Same boat
    I am so glad I read these posts today. I have not even tried to put anything in my vagina since treatment for fear of pain. My doc who I love, has never mentioned any thing about a possible problem. I have an upcoming appointment with a gyn ( a new doc to our area, mine has moved ) and I will surely bring this issue up. At this point I am 8.5 months post treatment and my husband has been sick himself. (just had a bone marrow transplant) For now sex is not an option, but I am only 53 and had planned on being active for a number of good years yet!!!! I have sensitivity when I pee and mild blood tinged drainage daily. (wear a pad 24/7) My guess is I have the same problem as everyone here and hope it is not too late to help. Thank you all for great advice as always. Prayers for all!!!
  • eihtak
    eihtak Member Posts: 1,473 Member

    Same here- 5yr mark as new permanent virgin!
    My rad doc gave me dilators, but I stupidly didn't use them. My boyfriend (at the time) said, "You never liked sex anyway!" Well, maybe I just didn't like it with him, eh wot? Now I'm angry with myself, and curious about surgery. I did have a temporary colostomy during the radiation, then it was successfully "taken down" three months later. Wouldn't want that again, as someone mentioned that surgery might thin the walls between vagina and rectum. I can't even get my finger inside, and had to actually be "put under" for exams (anal stenosis as well, of course). As I mentioned on my profile, I think I'll create a "No-Sex Singles " dating site. Anybody good with building web-sites? Anyway, good luck to us both! Sorry I'm late; just now discovered this site.

    Same boat
    I am so glad I read these posts today. I have not even tried to put anything in my vagina since treatment for fear of pain. My doc who I love, has never mentioned any thing about a possible problem. I have an upcoming appointment with a gyn ( a new doc to our area, mine has moved ) and I will surely bring this issue up. At this point I am 8.5 months post treatment and my husband has been sick himself. (just had a bone marrow transplant) For now sex is not an option, but I am only 53 and had planned on being active for a number of good years yet!!!! I have sensitivity when I pee and mild blood tinged drainage daily. (wear a pad 24/7) My guess is I have the same problem as everyone here and hope it is not too late to help. Thank you all for great advice as always. Prayers for all!!!
  • pjs62
    pjs62 Member Posts: 95
    Oh my goodness!! I fully
    Oh my goodness!! I fully understand how you feel! My 1st dx was July 2010 & I went thru the traditional chemo/radiation. My drs at that time NEVER told me anything about becoming a 'virgin' again! Yes that's how I feel coz I'm so closed up not sure if it'll ever open up again! They never told me about dialators or scaring....looking back I think they just wanted to get my treatment over & done with.
    Well Aug. 2011 I was told my cancer was recurrent so I went for a 2nd opinion & found a great cancer center with a caring medical team. This radiologist was shocked I was never told the results radiation would have (vaginally) or about dialators. He gave me a small one to try but it hurts so bad because of how closed up things are. ugh!! I also have some bleeding at times but can't have a pap. So I'm also seeing a female gyn next wk to see what she thinks can be done if anything.
    I'm also 49 & have been married 9 yrs. My hubby is such a blessing & so patient. We know things will never be the same & it upsets & angers me. I don't feel like a woman at times....& on top of this I'll be having surgery for a permanent ostomy next month.
    Its so unfair how some of us go thru so much & can't get a break, while others breeze right by. But I do my best to feel thankful no matter what life throws my way. I can still enjoy my family, my grandkids....cherish our time together.
    I'll keep you in my prayers that things get better for you & you'll find the answers you're looking for.
  • wje630
    wje630 Member Posts: 11

    Same here- 5yr mark as new permanent virgin!
    My rad doc gave me dilators, but I stupidly didn't use them. My boyfriend (at the time) said, "You never liked sex anyway!" Well, maybe I just didn't like it with him, eh wot? Now I'm angry with myself, and curious about surgery. I did have a temporary colostomy during the radiation, then it was successfully "taken down" three months later. Wouldn't want that again, as someone mentioned that surgery might thin the walls between vagina and rectum. I can't even get my finger inside, and had to actually be "put under" for exams (anal stenosis as well, of course). As I mentioned on my profile, I think I'll create a "No-Sex Singles " dating site. Anybody good with building web-sites? Anyway, good luck to us both! Sorry I'm late; just now discovered this site.

    Anal Cancer Survivor-7 Years NED
    Hi There:

    Just started reading the posts again today and thought I would mention a word of caution regarding having surgery to remove scar tissue. After I finished my radiation therapy and had healed from the burns, I was having pain when trying to have sex so I contacted my Gyn(who was not a Onocology Gyn) to see if she could help. Unfortunately, I didn't think to talk it over with my Radiation Onocologist. When he found out about my surgery(after the fact) he was very upset because he felt it was too soon after my treatment and my body was slow in recovering. It has been almost 7 years since I finished my treatments and I still have vaginal stenosis. The surgery to remove the scar tissue did help some but it did not change the fact that the length of my vagina has shortened as well as the opening is much smaller. I saw someone mention on here that her doctor said she was like a teenager again, but I am afraid it's much smaller than that! I also saw on here a reference to a web site who sold soft dialators and I am going to try them. I have a set of hard plastic ones and they are so uncomfortable to use. I have had a hysterectomy so I am not so worried about having a PAP smear, my Radiation Onocologist said they should also watch for vaginal cancer as well.

    I am sorry if I seem to be rambling, I like your idea of a No-Sex Singles web site or as my daughter said to me I need to look for a man with a small penis! LOL

    I wish you good luck on your recovery, I am due to have another Colonoscopy this year which I dread, but I am so thankful to be NED as of now.
    PS I am 69 years old and would still like to enjoy having a sexual relationship again, I am going to try the new dialators and hope for the best.
  • shirlann54
    shirlann54 Member Posts: 162

    I'm dealing with vaginal stenosis too
    I just had surgery this past Thursday to remove some scar tissue to open up my vaginal canal. Apparently, the scar tissue completely blocked the opening. It opened the canal, but the canal is so very small that it seems impossible for anything to fit. I was given a medium-size dialator...of course after 4 months post treatment! I'm trying to stretch my vaginal canal, but it's like trying to fit a baseball bat through the hole of a straw. It is not the most comfortable feeling in the world. I think I cried the first couple of times I did it because it was painful and because I thought that I will never be the same again. But, after I got over my pity-party, I continued to use the dialator on a daily basis. Hopefully, it will work.

    Oh, the reason I call it a pity-party was not to offend you, but one thing that I realized very quickly is that even though we have a good support team on this board, we are still responsible for our own individual recovery. If we want to get better, we have to put the work in ourselves to improve our own bodies. Believe me, I know the frustration. I'm angered by my rad not telling me about vaginal dialators. I understand completely. But, I'm not going to sit around and complain about what the rad did or didn't do. It's too late to do anything about it because the damage is already done. It's sad because it's like the rad doesn't even care! So, since it's my body, I have to do what is necessary so that my husband and I can get back on track with our sexual activity.

    I'm also using estrogen cream at this time which is supposed to help heal and strengthen vaginal walls.

    Hang in there! Don't give up!

    CUJUJA4EVR
    My Radiation Dr didnt tell me any thing about a dialator. 2 mo after my treatments my husband and i tryed to have sex .Couldnd do it. wouldnd go in but maybe a inch or 2 it had been over a year no sex so i wanted to dry it .Glad we did .So i called the Dr they have me a dialator.And it was very painful He did send me to a gyn.He started me on the cream premarin vaginal cream .That helped me the most i put it in 3 times a week.We can have sex now .Its not like it was .I'm smaller inside like shorter in side .the gyn Dr said i would allways have to use this cream for ever.The cream healed me. Good luck hope it works for you