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

2

Comments

  • Phoebesnow
    Phoebesnow Member Posts: 600 Member
    pjs62 said:

    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.

    Premarin cream
    There is another recent post about this cream at the top of this thread. This is some good stuff that really works!
  • 7243
    7243 Member Posts: 249 Member
    Stenosis
    You may want to seek a referral to a uro/gynecologist for a thorough evaluation of your pelvic floor, vagina, vaginal opening, etc., and ask for Physical Therapy for the stenosis. I am currently in PT for stenosis post radiation. It is helping ... the PT actually does internal, vaginal PT (myofacial work) and I have a program of therapy I follow at home to include sexual intercourse, some use of dilators, and manual vaginal myofacial work. I don't know what's available in your community, but there are physical therapists who specialize in pelvic floor, post radiation, pelvic pain, and ohter such female issues ... dilators help, but "sex toys" for lack of a better term can be even more helpful ... small to start out with. My physicial therapist gave me a card for a shop that is "sex positive" and actually works with customers on their individual needs. The stenosis is one issue, the pain response and "guarding" that we have is also an issue. We have to relearn about ourselves in this way ... I am very sorry you're having such issues and can relate. I'm almost one year out from 30 rad treatments with combined chemo. Best wishes and stay well ... I believe it can get better for you.
  • Phoebesnow
    Phoebesnow Member Posts: 600 Member
    7243 said:

    Stenosis
    You may want to seek a referral to a uro/gynecologist for a thorough evaluation of your pelvic floor, vagina, vaginal opening, etc., and ask for Physical Therapy for the stenosis. I am currently in PT for stenosis post radiation. It is helping ... the PT actually does internal, vaginal PT (myofacial work) and I have a program of therapy I follow at home to include sexual intercourse, some use of dilators, and manual vaginal myofacial work. I don't know what's available in your community, but there are physical therapists who specialize in pelvic floor, post radiation, pelvic pain, and ohter such female issues ... dilators help, but "sex toys" for lack of a better term can be even more helpful ... small to start out with. My physicial therapist gave me a card for a shop that is "sex positive" and actually works with customers on their individual needs. The stenosis is one issue, the pain response and "guarding" that we have is also an issue. We have to relearn about ourselves in this way ... I am very sorry you're having such issues and can relate. I'm almost one year out from 30 rad treatments with combined chemo. Best wishes and stay well ... I believe it can get better for you.

    7243
    Thank you for that info. And it even sounds like it could be fun. Therapists really are a blessing.
  • torrance
    torrance Member Posts: 118

    7243
    Thank you for that info. And it even sounds like it could be fun. Therapists really are a blessing.

    Physical Therapy
    First time posting. Glad to find a place to share and hopefully help others going through or facing what I have gone through. I am coming up on the one year anniversary of treatment beginning. To the point of this comment, I consider myself blessed that I have found a Pelvic Physical Therapist to help me with the stenosis. Like many of you even the applicator that came with the Premarin was a bit of a joke. But I am happy to report that after several months of weekly therapy appointments and homework I AM making progress. It is slow going, uncomfortable, painful, comical at times, however still progress. I am a real challenge for her as most of her patients come from OB/GYN cancers and they are all instructed to use dilators during treatment and don't end up this severe. My Radiation Oncologist informed me that this collateral damage was possible and highly recommended NOT using the dilators during treatment as it would have been FAR TO PAINFUL. I have a LOT of respect for him and he has been correct all along in addressing my concerns, complications and side effects. Hope this helps others and gives you another option to pursue.
  • Phoebesnow
    Phoebesnow Member Posts: 600 Member
    torrance said:

    Physical Therapy
    First time posting. Glad to find a place to share and hopefully help others going through or facing what I have gone through. I am coming up on the one year anniversary of treatment beginning. To the point of this comment, I consider myself blessed that I have found a Pelvic Physical Therapist to help me with the stenosis. Like many of you even the applicator that came with the Premarin was a bit of a joke. But I am happy to report that after several months of weekly therapy appointments and homework I AM making progress. It is slow going, uncomfortable, painful, comical at times, however still progress. I am a real challenge for her as most of her patients come from OB/GYN cancers and they are all instructed to use dilators during treatment and don't end up this severe. My Radiation Oncologist informed me that this collateral damage was possible and highly recommended NOT using the dilators during treatment as it would have been FAR TO PAINFUL. I have a LOT of respect for him and he has been correct all along in addressing my concerns, complications and side effects. Hope this helps others and gives you another option to pursue.

    Torrance
    Welcome. I found your first post very informative. I found out about the dialator here pre treatment. I did not start using until 3 months after tx. They were not fun so I did not use vey often. I used the Premarin cream and my husband. Although I have shrunk, it feels totally normal inside and is fully functioning. I am glad we are getting the info out there to give others hope for a full recovery in that area. I think the estrogen cream is a key ingredient for full recovery. Martha mp327 has a wonderful system of using them in the shower. If things had not improved for me, that would have been my next step.
  • janke
    janke Member Posts: 29
    Thank you for posting...I feel all of my doctors have abandoned
    Thanks for posting about this problem. I also have the same problem. I had ana CX, under went chemo and radiation. Severely burnt by the Radiation. To make a very long journey short.....somewhere I developed complete vaginal stenosis. I am not a young woman but still very sexually active and did enjoy until I was so severely burnt intercourse was impossible.
    I have a prior history of cervical CX, always followed all medical recommendations, and last yar 8 months post radiation my gyno. said .....no vagina!! What are you flipping kidding ME!!!!!! When did this happen!!! and why. Gyno blew me off.

    I sought the assistance of my oncologist who said WHAT????????? MY radiation onco. said "this is a side effect" and I sought information on my own. Going to a Onc. Gyno. who tried to do a vaginal exam under anesthesia and ruptured my bladder. They have all washed thier hands of me. I am angry. It's not my falut and why didn't ANY of these medical professionals recommend premarin and dilators along the way??????????

    They have made me feeel like it was my fault or something for not continuing to have realtions during radiation. OMG....I had 3rd degree burns exturnally, what the F..... did I look like on the inside, much less my skin whould have just peeled off in layers. I never thought to use dilators nor did I understand the benefits of premarin. I cry every day. And I am in the medical field. I just didn't know about the side effects of radiation. I did ask many many times. Everybody just blew me off. They saved my life..that is all that mattered.

    I do understand I am alive and I am more than gratefull. But I think there is more to just curing someone. NOW IT'S ALL ABOUT THE QUALITY OF LIFE. And no one can help me with this.
  • Angela_K
    Angela_K Member Posts: 374 Member
    janke said:

    Thank you for posting...I feel all of my doctors have abandoned
    Thanks for posting about this problem. I also have the same problem. I had ana CX, under went chemo and radiation. Severely burnt by the Radiation. To make a very long journey short.....somewhere I developed complete vaginal stenosis. I am not a young woman but still very sexually active and did enjoy until I was so severely burnt intercourse was impossible.
    I have a prior history of cervical CX, always followed all medical recommendations, and last yar 8 months post radiation my gyno. said .....no vagina!! What are you flipping kidding ME!!!!!! When did this happen!!! and why. Gyno blew me off.

    I sought the assistance of my oncologist who said WHAT????????? MY radiation onco. said "this is a side effect" and I sought information on my own. Going to a Onc. Gyno. who tried to do a vaginal exam under anesthesia and ruptured my bladder. They have all washed thier hands of me. I am angry. It's not my falut and why didn't ANY of these medical professionals recommend premarin and dilators along the way??????????

    They have made me feeel like it was my fault or something for not continuing to have realtions during radiation. OMG....I had 3rd degree burns exturnally, what the F..... did I look like on the inside, much less my skin whould have just peeled off in layers. I never thought to use dilators nor did I understand the benefits of premarin. I cry every day. And I am in the medical field. I just didn't know about the side effects of radiation. I did ask many many times. Everybody just blew me off. They saved my life..that is all that mattered.

    I do understand I am alive and I am more than gratefull. But I think there is more to just curing someone. NOW IT'S ALL ABOUT THE QUALITY OF LIFE. And no one can help me with this.

    I am so sorry . . .
    even though I am not functioning 100% sexually like I used to, I am at a good 90% and after reading these posts I know that I am so fortunate. My doctors educated me briefly before treatment and then thoroughly after treatment (I researched much of it) regarding staying sexually active and/or using a dilator and prescribing Premarin. I can't even imagine the frustration you must have with your doctors.

    Whatever you do, please don't give up.

    Angela
  • Phoebesnow
    Phoebesnow Member Posts: 600 Member
    janke said:

    Thank you for posting...I feel all of my doctors have abandoned
    Thanks for posting about this problem. I also have the same problem. I had ana CX, under went chemo and radiation. Severely burnt by the Radiation. To make a very long journey short.....somewhere I developed complete vaginal stenosis. I am not a young woman but still very sexually active and did enjoy until I was so severely burnt intercourse was impossible.
    I have a prior history of cervical CX, always followed all medical recommendations, and last yar 8 months post radiation my gyno. said .....no vagina!! What are you flipping kidding ME!!!!!! When did this happen!!! and why. Gyno blew me off.

    I sought the assistance of my oncologist who said WHAT????????? MY radiation onco. said "this is a side effect" and I sought information on my own. Going to a Onc. Gyno. who tried to do a vaginal exam under anesthesia and ruptured my bladder. They have all washed thier hands of me. I am angry. It's not my falut and why didn't ANY of these medical professionals recommend premarin and dilators along the way??????????

    They have made me feeel like it was my fault or something for not continuing to have realtions during radiation. OMG....I had 3rd degree burns exturnally, what the F..... did I look like on the inside, much less my skin whould have just peeled off in layers. I never thought to use dilators nor did I understand the benefits of premarin. I cry every day. And I am in the medical field. I just didn't know about the side effects of radiation. I did ask many many times. Everybody just blew me off. They saved my life..that is all that mattered.

    I do understand I am alive and I am more than gratefull. But I think there is more to just curing someone. NOW IT'S ALL ABOUT THE QUALITY OF LIFE. And no one can help me with this.

    Janke
    I really feel your pain. The doctors can be so frustrating. Believe me they were not forthcoming bout anything. All they told me was you will be ine, like a sunburn, stay away from the blogs. Ha. Bs, bs, bs. This is where you learn the facts. Keep searching the Internet. Pose the exact questions. The answers will come. Do not give up. Does your clitoris function? Have you tried oral sex or manual stimulation. Try putting the Premarin on the outside, u have nothing to lose only gain. What about hormone patch?
  • janke
    janke Member Posts: 29

    Janke
    I really feel your pain. The doctors can be so frustrating. Believe me they were not forthcoming bout anything. All they told me was you will be ine, like a sunburn, stay away from the blogs. Ha. Bs, bs, bs. This is where you learn the facts. Keep searching the Internet. Pose the exact questions. The answers will come. Do not give up. Does your clitoris function? Have you tried oral sex or manual stimulation. Try putting the Premarin on the outside, u have nothing to lose only gain. What about hormone patch?

    Yes over my pity party today
    Yes over my pity party today and will consider myself to be fortunate. I can still orgasm, just not penatration. And my bowels and urinary tract are fine.

    I guess what I really want to get out there is not about me.....it's aobut all the female newbys. After reading the above post, it seems there are quite a few of us who were not educated about stenosis, or it was briefly addressed and dismissed. I don't want anyone else to be DISMISSED! Or embarrassed about this issue.

    My original concern is I have had a hx of questionable pap results, and have a family hx of ovarien and colon cx. Well how the heck am I to have a pap is you can't get there! That was my first problem even before sex.
    Some of my doctors say -"don't worry you will never get cervical or ovarian cx" other doc's admit that is a "interesting question but don't know". The end.
    Then there is the transgender surgeon who wants to rip out all of my female organs and create a vagina using some muscle and tissue from my upper leg.
    I decided against the last --- seeings how all of my female organs seem to be one conneced mass.

    I am severely confused for my situation. But I really want to get the word out there this problem might be avoided with a little preventive care and attention for other women about to undergo this treatment plan.

    I am currently using the premarin, 3 times a week, 2 grams per application. And I can insert a dilator about 1 1/2 inches without pain. Will things ever change for me? I don't know, I hope I don't give up. The premarin is expensive. Does anyone use a generic?

    Then there is always the issue of my marital status. I know this man loves me but good god who determined he should also pay the price. Ok that was stupid, if the role was reversed I wouldn't care if I ever had sex with him again as long as he was healthy and well. And I am pretty sure he feels the same but I just feel it is unfair to him.

    God I sound crazy but these are the thoughts that run thru my head daily.

    Well that's all I'm going to post for now. I am just going to continue reading post and look for answers
  • Phoebesnow
    Phoebesnow Member Posts: 600 Member
    janke said:

    Yes over my pity party today
    Yes over my pity party today and will consider myself to be fortunate. I can still orgasm, just not penatration. And my bowels and urinary tract are fine.

    I guess what I really want to get out there is not about me.....it's aobut all the female newbys. After reading the above post, it seems there are quite a few of us who were not educated about stenosis, or it was briefly addressed and dismissed. I don't want anyone else to be DISMISSED! Or embarrassed about this issue.

    My original concern is I have had a hx of questionable pap results, and have a family hx of ovarien and colon cx. Well how the heck am I to have a pap is you can't get there! That was my first problem even before sex.
    Some of my doctors say -"don't worry you will never get cervical or ovarian cx" other doc's admit that is a "interesting question but don't know". The end.
    Then there is the transgender surgeon who wants to rip out all of my female organs and create a vagina using some muscle and tissue from my upper leg.
    I decided against the last --- seeings how all of my female organs seem to be one conneced mass.

    I am severely confused for my situation. But I really want to get the word out there this problem might be avoided with a little preventive care and attention for other women about to undergo this treatment plan.

    I am currently using the premarin, 3 times a week, 2 grams per application. And I can insert a dilator about 1 1/2 inches without pain. Will things ever change for me? I don't know, I hope I don't give up. The premarin is expensive. Does anyone use a generic?

    Then there is always the issue of my marital status. I know this man loves me but good god who determined he should also pay the price. Ok that was stupid, if the role was reversed I wouldn't care if I ever had sex with him again as long as he was healthy and well. And I am pretty sure he feels the same but I just feel it is unfair to him.

    God I sound crazy but these are the thoughts that run thru my head daily.

    Well that's all I'm going to post for now. I am just going to continue reading post and look for answers

    Janke
    Some opening is good, you will get there. Looking thru the history u will see others had surgery. I don't think that is the way to go. you will just form more adhesions, scar tissue. I think it is the Premarin cream. I have had same tube for 7 months,35 on my plan. I use my finger not the applicator, this way you can work yourself a bit too. My doctor recommended this. I think it will resolve If you keep with it.
  • torrance
    torrance Member Posts: 118
    janke said:

    Yes over my pity party today
    Yes over my pity party today and will consider myself to be fortunate. I can still orgasm, just not penatration. And my bowels and urinary tract are fine.

    I guess what I really want to get out there is not about me.....it's aobut all the female newbys. After reading the above post, it seems there are quite a few of us who were not educated about stenosis, or it was briefly addressed and dismissed. I don't want anyone else to be DISMISSED! Or embarrassed about this issue.

    My original concern is I have had a hx of questionable pap results, and have a family hx of ovarien and colon cx. Well how the heck am I to have a pap is you can't get there! That was my first problem even before sex.
    Some of my doctors say -"don't worry you will never get cervical or ovarian cx" other doc's admit that is a "interesting question but don't know". The end.
    Then there is the transgender surgeon who wants to rip out all of my female organs and create a vagina using some muscle and tissue from my upper leg.
    I decided against the last --- seeings how all of my female organs seem to be one conneced mass.

    I am severely confused for my situation. But I really want to get the word out there this problem might be avoided with a little preventive care and attention for other women about to undergo this treatment plan.

    I am currently using the premarin, 3 times a week, 2 grams per application. And I can insert a dilator about 1 1/2 inches without pain. Will things ever change for me? I don't know, I hope I don't give up. The premarin is expensive. Does anyone use a generic?

    Then there is always the issue of my marital status. I know this man loves me but good god who determined he should also pay the price. Ok that was stupid, if the role was reversed I wouldn't care if I ever had sex with him again as long as he was healthy and well. And I am pretty sure he feels the same but I just feel it is unfair to him.

    God I sound crazy but these are the thoughts that run thru my head daily.

    Well that's all I'm going to post for now. I am just going to continue reading post and look for answers

    Progress is good...
    Janke,

    I know that 1 1/2 inches doesn't seem like much, hang in there. Before I started my "therapy" even a q-tip was not possible. I can proudly say that I have graduated to a size small dilator and am continuing to make progress. I am extremely fortunate to be working with an excellent physical therapist and a radiation oncologist that I have great respect for. My PT had never actually worked with a patient with anal cancer and primarily worked with those from the OB/GYN department. My situation was different from any that she had encounter and she has gone out of her way to improvise treatment. For example, when she first started just touching the tissue was extremely painful so she had to use a pediatric cathater(sp?) to apply lidocaine. The traditional "balloon" dilator that they use was out of the question so when the time came she used an anal dilator. Another thing that I think is helping is something my rad onc perscribed to increase circulation in that area. I have been very slow healing and developed radiation cellulitis so he perscribed Trental. It is usually give to increase circulation in the legs, but between this and the premarin, I think it is helping.

    On a side note...I had an appt with my reg gyn dr today. She tried to do an exam, resorted to a pediatric speculum but she could not do a thorough exam. She thought she was seeing a hole and is concerned with it being a tear to the bowels so I will have an exam under anesthesia, possible for this Friday or maybe next week for a further check. The good news is that she is pleased with the "depth" and feels that that is as good as normal! YEAH! Now to work on the width. I also saw my med onc this week and all is fine! Next week will be back to the rad onc for my regular two month anoscope! Always something to look forward to.

    I guess what I am trying to say is the progress is being made and that is a good sign that I will choose to focus on. As a control freak this whole experience has been a HUGE learning curve for me. Guess what I had NO control over what my body was doing to me or the treatment or the time it is taking to heal. I have had to learn patience with myself and allow time for healing. Hang in there, my hope is that you will continue on your road of healing.
  • Phoebesnow
    Phoebesnow Member Posts: 600 Member
    torrance said:

    Progress is good...
    Janke,

    I know that 1 1/2 inches doesn't seem like much, hang in there. Before I started my "therapy" even a q-tip was not possible. I can proudly say that I have graduated to a size small dilator and am continuing to make progress. I am extremely fortunate to be working with an excellent physical therapist and a radiation oncologist that I have great respect for. My PT had never actually worked with a patient with anal cancer and primarily worked with those from the OB/GYN department. My situation was different from any that she had encounter and she has gone out of her way to improvise treatment. For example, when she first started just touching the tissue was extremely painful so she had to use a pediatric cathater(sp?) to apply lidocaine. The traditional "balloon" dilator that they use was out of the question so when the time came she used an anal dilator. Another thing that I think is helping is something my rad onc perscribed to increase circulation in that area. I have been very slow healing and developed radiation cellulitis so he perscribed Trental. It is usually give to increase circulation in the legs, but between this and the premarin, I think it is helping.

    On a side note...I had an appt with my reg gyn dr today. She tried to do an exam, resorted to a pediatric speculum but she could not do a thorough exam. She thought she was seeing a hole and is concerned with it being a tear to the bowels so I will have an exam under anesthesia, possible for this Friday or maybe next week for a further check. The good news is that she is pleased with the "depth" and feels that that is as good as normal! YEAH! Now to work on the width. I also saw my med onc this week and all is fine! Next week will be back to the rad onc for my regular two month anoscope! Always something to look forward to.

    I guess what I am trying to say is the progress is being made and that is a good sign that I will choose to focus on. As a control freak this whole experience has been a HUGE learning curve for me. Guess what I had NO control over what my body was doing to me or the treatment or the time it is taking to heal. I have had to learn patience with myself and allow time for healing. Hang in there, my hope is that you will continue on your road of healing.

    Torrance
    Congratulations on your progress. Thank you for the info. I think this thread is really serving our community.
  • tommycat
    tommycat Member Posts: 790 Member

    Torrance
    Congratulations on your progress. Thank you for the info. I think this thread is really serving our community.

    Thank you all for your
    Thank you all for your input. Very helpful to us rectal cancer survivors too.
  • DreamWeaver812
    DreamWeaver812 Member Posts: 1
    dixiegirl said:

    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.

    ky liquibeads
    Is this a product you can use every day to make it less necessary to use a lubricant before sex or dilator use?
  • mp327
    mp327 Member Posts: 4,440 Member

    ky liquibeads
    Is this a product you can use every day to make it less necessary to use a lubricant before sex or dilator use?

    KY liquibeads
    Yes. However, I doubt that after having radiation therapy, a woman would ever be able to do either without using a lubricant. I happen to use AstroGlide.
  • renztwiddyd442
    renztwiddyd442 Member Posts: 1
    Hi,
    Hi, i am very sorry to hear about that. But you have to believe yourself. Life is going on. - heart disease statistics | blood pressure medication | high blood pressure
  • donnawanna
    donnawanna Member Posts: 1
    vaginal stenosis

    I had radiation treatment for stage 4 rectal cancer and wasn't told about vaginal stenosis.  I found out months later when trying to have sex was painful and impossible.  What a shock, thanks Tacoma General Radiation Docs!!  I haven't had sex for 10 years.  I struggle every day with depression and self loathing.  Why didn't I do something??!!  I feel hopeless and realize that everything in my life rotated around me being a desirable, sexual being.  I know I suck because of this, and I was a single working parent so I never did anything but try to get back to work and support my girls.  They are grown, successful women now and I am a sad, lonely, shell of a woman.  I have no friends, gained 50 pounds and hate waking up in the morning.  I know I need help but don't know where to go.  I've talked to counselors in the past but they don't get it.  I HATE LIFE WITHOUT MY VAGINA!!  And I hate myself for it. 

  • eihtak
    eihtak Member Posts: 1,473 Member
    edited May 2016 #39

    vaginal stenosis

    I had radiation treatment for stage 4 rectal cancer and wasn't told about vaginal stenosis.  I found out months later when trying to have sex was painful and impossible.  What a shock, thanks Tacoma General Radiation Docs!!  I haven't had sex for 10 years.  I struggle every day with depression and self loathing.  Why didn't I do something??!!  I feel hopeless and realize that everything in my life rotated around me being a desirable, sexual being.  I know I suck because of this, and I was a single working parent so I never did anything but try to get back to work and support my girls.  They are grown, successful women now and I am a sad, lonely, shell of a woman.  I have no friends, gained 50 pounds and hate waking up in the morning.  I know I need help but don't know where to go.  I've talked to counselors in the past but they don't get it.  I HATE LIFE WITHOUT MY VAGINA!!  And I hate myself for it. 

    donnawanna.....

    Although we all have some parts of this journey that are very similar, no two of us are exactly alike in how our bodies or minds react to what we've been through. I am so sorry that you are feeling this right now and please know you are not alone in your situation.  Radiation combined with other cancer related treatment has pretty much drained the sexual intimacy from my life as well. I want to encourage you to continue to seek professional counseling to help with this issue.  Like other things in life, you may need to go through a few before you connect with just the right help. Have you tried using dilators to increase the flexibility and lessen stenosis? Although best if started shortly after finishing treatment, I have been told to use at any point still has benefits. Start with the smallest and work up in size over time. I ordered a set on line from Vaginismus (I think that was the name....or something similar). Do not feel bad about missing your sexuality as it is a very important part of life and you deserve to enjoy it! There are specialists that work specifically on restoring or at least trying to restore what you have lost.

    Are you working? Is there someone you can talk to there? Is talking to your daughters a helpful option?

    Sometimes just throwing yourself into something new opens new doors. Maybe join a gym, get out and walk in an area where you may strike up conversations with others. I found that as I concentrated less on what I lost, I seemed to get back somehow something even greater.

    Please stay in touch here.....feeling depressed and hopeless does not have to be your life because of all this, and there are many here that share your concerns.  We will all move forward one way or another together.

    I am curious about the dilators, it seems many were never given this information.....has any doctor ever suggested this to you?

    katheryn

     

  • Lorikat
    Lorikat Member Posts: 681 Member
    edited May 2016 #40
    Liz (lizdeli)..

    I was blessed to meet up with and talk to Liz..  Both on phone and at MDA.  She's a quite private person but was kind enough to explain di to me BEFORE treatment.  Also the making of what I call the frog mold!  It prepared me for what was to come!  Thank you Liz.......

  • Pilikia55
    Pilikia55 Member Posts: 17 Member
    has anyone tried the Estring?

    Hello all. I feel your pain and confusion. I've been NED for 12 years and have definitely dealt with vaginal stenosis issues. My radiation onc mentioned I should try to have sex once I healed, and I was given a dilator on my final radiation check up and told to use it 3 X per week.  I wish they'd impressed more strenuously how important early intervention was, however! I didn't use the dilator early enough, or often enough, I think. After having painful sex for a couple of years, using Premarin when I remembered, my Gyn felt I was healed enough for her to try conservative surgery. She'd worried before that the tissue wouldn't be ready or that surgery could cause more problems. Anyway, the surgery was a godsend. I could once again have sex weekly without having pain during and after. Last year, she prescribed the Estring, and that has been incredible. I'm no longer dry and itching all the time. Sex is, again, easier than before. Life is not like it was, but it is much, much better. Talk to a good Gyn who understands the issues AC radiation produces, keep trying! We are worth it. Good luck and aloha.