Cancer Free but having a few problems
Comments
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Hi cph1127!
First of all, congratulations on the follow-up results--that is great news! My best guess (and it's only a guess) is that you have some scar tissue forming in your pelvic region. I went through a period of time a few months after treatment ended when I always had a pulling or tugging feeling in my pelvic area and it was quite uncomfortable at times! It almost felt like menstrual cramps sometimes. I brought this to the attention of my rad onc and he assured me that it was most likely scar tissue forming--fibrosis. I did not experience this in my urinary tract, as you describe, but since the bladder is in the treatment area, it's very possible. To be on the safe side, mention this to your docs as you do not want anything causing blockage in your urinary tract. Is it possible that this feeling is actually occurring in your vagina? And if so, are you using a vaginal dilator to keep the vaginal canal open? This is very important! I hope you get some answers to your questions from your docs and that it's nothing of concern!0 -
Thanks for the responsemp327 said:Hi cph1127!
First of all, congratulations on the follow-up results--that is great news! My best guess (and it's only a guess) is that you have some scar tissue forming in your pelvic region. I went through a period of time a few months after treatment ended when I always had a pulling or tugging feeling in my pelvic area and it was quite uncomfortable at times! It almost felt like menstrual cramps sometimes. I brought this to the attention of my rad onc and he assured me that it was most likely scar tissue forming--fibrosis. I did not experience this in my urinary tract, as you describe, but since the bladder is in the treatment area, it's very possible. To be on the safe side, mention this to your docs as you do not want anything causing blockage in your urinary tract. Is it possible that this feeling is actually occurring in your vagina? And if so, are you using a vaginal dilator to keep the vaginal canal open? This is very important! I hope you get some answers to your questions from your docs and that it's nothing of concern!
I went to my family dr after going to my gyno dr which didnt even want to look at me. My family dr which is female examined me and she said I was red and raw around my urethra opening. She also said I have a lot of scar tissue. She has suggested that I go see a onco/gyno doctor. I have done the dilator but not on a consistent basis. It seems like my vagina is closing from the top. I was just concerned with keeping my vagina canal open and really did not pay a lot of attention to the space between my opening and my clitoris. I have noticed that my clitoris is not as big so I think skin has grown over it. Needless to say I am tired of messing with this but now I am scared that I will never be able to have sex with my husband again. I feel like a 10 year old virgin. Did you loose all your hair and did it grown back? I know this is personal but........ Thanks Cindy0 -
Hi Cindy--cph1127 said:Thanks for the response
I went to my family dr after going to my gyno dr which didnt even want to look at me. My family dr which is female examined me and she said I was red and raw around my urethra opening. She also said I have a lot of scar tissue. She has suggested that I go see a onco/gyno doctor. I have done the dilator but not on a consistent basis. It seems like my vagina is closing from the top. I was just concerned with keeping my vagina canal open and really did not pay a lot of attention to the space between my opening and my clitoris. I have noticed that my clitoris is not as big so I think skin has grown over it. Needless to say I am tired of messing with this but now I am scared that I will never be able to have sex with my husband again. I feel like a 10 year old virgin. Did you loose all your hair and did it grown back? I know this is personal but........ Thanks Cindy
I presume you are referring to the hair down below. Yes, I lost every speck of it during treatment, but it came back and I look "normal" again. Thank goodness I didn't lose every speck of hair on my head--just about half of it in clumps all over my head. I looked like I had the mange! lol!
I think going to see a onco/gyno is a very good idea. Please let us know what you find out.0 -
Cph1127cph1127 said:Thanks for the response
I went to my family dr after going to my gyno dr which didnt even want to look at me. My family dr which is female examined me and she said I was red and raw around my urethra opening. She also said I have a lot of scar tissue. She has suggested that I go see a onco/gyno doctor. I have done the dilator but not on a consistent basis. It seems like my vagina is closing from the top. I was just concerned with keeping my vagina canal open and really did not pay a lot of attention to the space between my opening and my clitoris. I have noticed that my clitoris is not as big so I think skin has grown over it. Needless to say I am tired of messing with this but now I am scared that I will never be able to have sex with my husband again. I feel like a 10 year old virgin. Did you loose all your hair and did it grown back? I know this is personal but........ Thanks Cindy
Hi. Mine is closing the same way as yours. Please advise your new doctors comments. Lost the hair and it grew back. R u using the estrogen cream? It is helping me a great deal. We r back to having a normal sex life, the first 4 months we had no sex, then gradually built up over time, And now in the 10th month, normal.0 -
cph 1127cph1127 said:Thanks for the response
I went to my family dr after going to my gyno dr which didnt even want to look at me. My family dr which is female examined me and she said I was red and raw around my urethra opening. She also said I have a lot of scar tissue. She has suggested that I go see a onco/gyno doctor. I have done the dilator but not on a consistent basis. It seems like my vagina is closing from the top. I was just concerned with keeping my vagina canal open and really did not pay a lot of attention to the space between my opening and my clitoris. I have noticed that my clitoris is not as big so I think skin has grown over it. Needless to say I am tired of messing with this but now I am scared that I will never be able to have sex with my husband again. I feel like a 10 year old virgin. Did you loose all your hair and did it grown back? I know this is personal but........ Thanks Cindy
2 mo out of treatment i went to see gyn he put me on the estrongen cream i had scar tissue too.It really helped me .So it took about 2 mo after i stared using the cream and we could have sex .Its been 9mo out of treatment and we have a normal sex life now.0 -
Hi Cindy,If part of thecph1127 said:Thanks for the response
I went to my family dr after going to my gyno dr which didnt even want to look at me. My family dr which is female examined me and she said I was red and raw around my urethra opening. She also said I have a lot of scar tissue. She has suggested that I go see a onco/gyno doctor. I have done the dilator but not on a consistent basis. It seems like my vagina is closing from the top. I was just concerned with keeping my vagina canal open and really did not pay a lot of attention to the space between my opening and my clitoris. I have noticed that my clitoris is not as big so I think skin has grown over it. Needless to say I am tired of messing with this but now I am scared that I will never be able to have sex with my husband again. I feel like a 10 year old virgin. Did you loose all your hair and did it grown back? I know this is personal but........ Thanks Cindy
Hi Cindy,
If part of the issue is urethral stenosis (narrowing due to radiation) urology specialists can can do a dilatation procedure that can help.
Hyperbaric oxygen therapy has been used with good results for those that have received pelvic radiation and its side effects. Some insurances cover this.
My rad onc recommended using the dilator (in graduated sizes) several times per week for 30 minutes (some say 15 minutes) to prevent much of the the vaginal stenosis. I was advised that it's critical to do the dilation therapy faithfully, along with the creams that were mentioned or other compounded scripts that might include test to help keep stenosis at bay.
I had bad burns on top of surgeries and could not use a dilator for several months. It's around 4 years out from treatment for me and my clitoris has been mostly "absorded" and mostly covered by skin and adhered to the skin that covers it, as though things are melting together.
Along with stenosis, the pelvic floor and muscles can be weakened by radiation, creating pressure and other things. Having great GYN's and other specialists along with our radiation oncs involved in the continued management of our follow up care is optimal. I hope specialists will be of help and that all your docs will consult with each other to find the best results for you.0 -
Difficulties
Hello CPH,
I had very similar symptoms as you describe and actually only feel "almost" healed at 9 months post treatment, and I think that's probably pretty good. I tried to use the dilators, however between the pain and depression, I just didn't use them ... and as for sex, my vagina is in such bad shape that my husband and I haven't had comfortable sex since prior to my treatment in January 2011. I went to a female gynecologist in early September who examined me and described my genitals as you did, my clitoris is not quite what it used to be (but it does work) and my vaginal opening looks like I'm an adolescent again, although she said my exam led her to believe my vagina may be okay in the long run. So ... she prescribed a "humane" set of dilators that sort of look like graduated penises, Premarin cream and I have a referral to a UroGYN specialist next week to work with the dilators in hopes of having a "new" normal sex life. I lost every bit of my pubic hair ... it is coming back, but not like before ... the texture is different and it's quite sparse. My anal hair did not return and that's no big deal ... that area is like hard plastic but getting more supple by the week but I don't think it will ever be the same.
Perhaps you can see a gyn oncologist and or a GYN who specializes in pelvic floor issues URO/GYN issues. Don't give up hope. When did your treatment end? It sounds like you're relatively soon after ending radiation and still healing perhaps.
As for the inside of my anal canal ... it felt like something was in there and actually poking me, I had to sit to one side in order to be comfortable for months ... similar to what you describe, until just recently ... it takes time to heal. I was so impatient and very likely drove my oncologist and colorectal surgeon nuts with my anxiety and concern. They believe it is/was acute and chronic radiation proctitis. I'm currently using Canasa suppositories to sooth the inflammation which seems to really help.
Hang in there ... I'm not sure how we e-mail each other privately, but I'll try to figure that out and maybe we can talk on the phone too if you want.
I really relate ... try to be patient with yourself. This is a slow process of healing .... does anyone know how we can e-mail each other privately on this blog?
I hope this helps in some way...xoxo0 -
7243 said:
Difficulties
Hello CPH,
I had very similar symptoms as you describe and actually only feel "almost" healed at 9 months post treatment, and I think that's probably pretty good. I tried to use the dilators, however between the pain and depression, I just didn't use them ... and as for sex, my vagina is in such bad shape that my husband and I haven't had comfortable sex since prior to my treatment in January 2011. I went to a female gynecologist in early September who examined me and described my genitals as you did, my clitoris is not quite what it used to be (but it does work) and my vaginal opening looks like I'm an adolescent again, although she said my exam led her to believe my vagina may be okay in the long run. So ... she prescribed a "humane" set of dilators that sort of look like graduated penises, Premarin cream and I have a referral to a UroGYN specialist next week to work with the dilators in hopes of having a "new" normal sex life. I lost every bit of my pubic hair ... it is coming back, but not like before ... the texture is different and it's quite sparse. My anal hair did not return and that's no big deal ... that area is like hard plastic but getting more supple by the week but I don't think it will ever be the same.
Perhaps you can see a gyn oncologist and or a GYN who specializes in pelvic floor issues URO/GYN issues. Don't give up hope. When did your treatment end? It sounds like you're relatively soon after ending radiation and still healing perhaps.
As for the inside of my anal canal ... it felt like something was in there and actually poking me, I had to sit to one side in order to be comfortable for months ... similar to what you describe, until just recently ... it takes time to heal. I was so impatient and very likely drove my oncologist and colorectal surgeon nuts with my anxiety and concern. They believe it is/was acute and chronic radiation proctitis. I'm currently using Canasa suppositories to sooth the inflammation which seems to really help.
Hang in there ... I'm not sure how we e-mail each other privately, but I'll try to figure that out and maybe we can talk on the phone too if you want.
I really relate ... try to be patient with yourself. This is a slow process of healing .... does anyone know how we can e-mail each other privately on this blog?
I hope this helps in some way...xoxo
Go to the homepage and in the middle section, you'll see where it says #New Mail. Click on that. The next screen will have some boxes at the bottom, one says Write New Message. Click on that to go to the screen where you can enter the recipient's user name and type your message, then just hit send. The recipient will receive a notice the next time they log in that they have a private message. Hope this helps.0 -
Thanks soooooooooooo muchmp327 said:Mail
Go to the homepage and in the middle section, you'll see where it says #New Mail. Click on that. The next screen will have some boxes at the bottom, one says Write New Message. Click on that to go to the screen where you can enter the recipient's user name and type your message, then just hit send. The recipient will receive a notice the next time they log in that they have a private message. Hope this helps.
Thanks to all the earthbound angels that responded to my questions. It is so comforting to know that I am not alone in this. I have had some suggestions on doctors to see but the first two had some bad reviews online but I think I have found a dr in Nashville, TN. Dr Thomas W Jones III. He is a third generation of onc/gyc and he had a great review. My dr did give me the estrogen cream but I started to have a bloody discharge. I stopped using it but will try again. I have a hard plastic dilator but I think I am going to go to a shop here to see if I can't find something a little more comfortable. Ha Ha
Thanks again and I will let everyone know how the Doctors visit turns out. I am new on the recovery side. My last Chemo ended Aug 5th and last Rad tx was on August 16, 2011.0 -
Hold off on the Dilatorscph1127 said:Thanks soooooooooooo much
Thanks to all the earthbound angels that responded to my questions. It is so comforting to know that I am not alone in this. I have had some suggestions on doctors to see but the first two had some bad reviews online but I think I have found a dr in Nashville, TN. Dr Thomas W Jones III. He is a third generation of onc/gyc and he had a great review. My dr did give me the estrogen cream but I started to have a bloody discharge. I stopped using it but will try again. I have a hard plastic dilator but I think I am going to go to a shop here to see if I can't find something a little more comfortable. Ha Ha
Thanks again and I will let everyone know how the Doctors visit turns out. I am new on the recovery side. My last Chemo ended Aug 5th and last Rad tx was on August 16, 2011.
Hello dear cph! Hold off on dialtors ... my insurance paid for them as they are "medically" indicated ... if you get the nice ones I have .... you'll be well on your way to working all this out. Here is the product: Milex Vaginal (silacone) Dilators ... there are 4 dilators in the set. Supply code: 99070. They are somehow associated with the Cleveland Clinic Foundation, Department of Gynecology Center for Sexual Function.
Here is a link to look at these hummers .... http://www.coopersurgical.com/ourproducts/Pages/VaginalHymenalSiliconeDilators.aspx?order1=MX20&order2=MX20I&order3=MX20IL&order4=MX20IM&order5=MX20IXL&lc=Dilators and Sounds&name=Vaginal-Hymenal Silicone Dilators&tc=1
I'm so glad you don't feel alone ... you're not!
And be patient ... geez, you are still healing and actually doing quite well given you really just finished treatment!!
You have a lot going for you .... you're healing and want to get back to "normal" ... that's important.
xoxoxo0 -
Not uncommon from my experience
After treatment I had this tremendous urge like I was badly constipated. I was told by doctors not constipated, just pain. I went through treatment in 2005 and just recently had a pain & lump in the vaginal area luckily after a scan it wound just being a muscle in constant spasm. Our bodies take a lot of abuse from the radiation and strange things can happen. My vaginal wall had to be completely rebuilt, but now I have a very successful sex life. Yeah! There were times I would wonder if I would ever be able to have sex again. Hang in there and make sure nothing closes up. Wishing you the best & congrats on your test results!0 -
72437243 said:Hold off on the Dilators
Hello dear cph! Hold off on dialtors ... my insurance paid for them as they are "medically" indicated ... if you get the nice ones I have .... you'll be well on your way to working all this out. Here is the product: Milex Vaginal (silacone) Dilators ... there are 4 dilators in the set. Supply code: 99070. They are somehow associated with the Cleveland Clinic Foundation, Department of Gynecology Center for Sexual Function.
Here is a link to look at these hummers .... http://www.coopersurgical.com/ourproducts/Pages/VaginalHymenalSiliconeDilators.aspx?order1=MX20&order2=MX20I&order3=MX20IL&order4=MX20IM&order5=MX20IXL&lc=Dilators and Sounds&name=Vaginal-Hymenal Silicone Dilators&tc=1
I'm so glad you don't feel alone ... you're not!
And be patient ... geez, you are still healing and actually doing quite well given you really just finished treatment!!
You have a lot going for you .... you're healing and want to get back to "normal" ... that's important.
xoxoxo
Thanks for posting the info on the dilators. There are many kinds out there, some better than others.0 -
a few similar problems....cph1127 said:Thanks for the response
I went to my family dr after going to my gyno dr which didnt even want to look at me. My family dr which is female examined me and she said I was red and raw around my urethra opening. She also said I have a lot of scar tissue. She has suggested that I go see a onco/gyno doctor. I have done the dilator but not on a consistent basis. It seems like my vagina is closing from the top. I was just concerned with keeping my vagina canal open and really did not pay a lot of attention to the space between my opening and my clitoris. I have noticed that my clitoris is not as big so I think skin has grown over it. Needless to say I am tired of messing with this but now I am scared that I will never be able to have sex with my husband again. I feel like a 10 year old virgin. Did you loose all your hair and did it grown back? I know this is personal but........ Thanks Cindy
I went thru the traditional chemo/radiation treatment July 2010. My radiation dr never said anything about using a dialator or even any cream to help with vaginal issues from treatment. (New to this cancer mess I didn't think to ask!) I was surprised when after treatment ended & (I thought) healing started, I was unable to have sex. Way too much pain! I have alot of the same issues as you do. Its been over a yr since my husband & I had sex (I blessed he's so patient!)...& now my cancer is recurrent so I wonder when it'll ever happen again.
I do have a new medical team & they seem to be more understanding, caring, helpful when it comes to this 'sensitive' part of my life. (actually my new radiation dr gave me a dialator to try but hurts so much I'm scared to keep trying.)
It helps to read how others here deal with this sensitive subject....although it is very personal.0 -
cancer free but...cph1127 said:Thanks soooooooooooo much
Thanks to all the earthbound angels that responded to my questions. It is so comforting to know that I am not alone in this. I have had some suggestions on doctors to see but the first two had some bad reviews online but I think I have found a dr in Nashville, TN. Dr Thomas W Jones III. He is a third generation of onc/gyc and he had a great review. My dr did give me the estrogen cream but I started to have a bloody discharge. I stopped using it but will try again. I have a hard plastic dilator but I think I am going to go to a shop here to see if I can't find something a little more comfortable. Ha Ha
Thanks again and I will let everyone know how the Doctors visit turns out. I am new on the recovery side. My last Chemo ended Aug 5th and last Rad tx was on August 16, 2011.
I had my last rad trx on Sept 7, 2011. And have had nothing but pain since. Before they found the cancer I had a hysterectomy and they hemmy surgery, which is when they found it, so I haven't had sex in 2 years. We did try a couple of times, but it was entirely too painful. Then when I thought things couldn't get worse, I tested positive for hapatitis c. I have not had a normal bowel movement in a year, I constantly feel like I have to pee, but can't. I have talked to all my drs about these things and they keep telling me to wait and see. I now get my stomach drained almost on a weekly basis, and the hep c is starting to make my liver sick. They say that there is a treatment for this, but it lowers blood counts, and mine are very low to start with so I am not a good candedent. They also want to do a liver biopsy but can't because my platelets run on the very low side. I do hope they can fix me soon, as my marriage is crumbling fast, but first and foremost make your docs tell you what is going on before your condition gets as bad as mine. Melodie0 -
Thanks 72437243 said:Hold off on the Dilators
Hello dear cph! Hold off on dialtors ... my insurance paid for them as they are "medically" indicated ... if you get the nice ones I have .... you'll be well on your way to working all this out. Here is the product: Milex Vaginal (silacone) Dilators ... there are 4 dilators in the set. Supply code: 99070. They are somehow associated with the Cleveland Clinic Foundation, Department of Gynecology Center for Sexual Function.
Here is a link to look at these hummers .... http://www.coopersurgical.com/ourproducts/Pages/VaginalHymenalSiliconeDilators.aspx?order1=MX20&order2=MX20I&order3=MX20IL&order4=MX20IM&order5=MX20IXL&lc=Dilators and Sounds&name=Vaginal-Hymenal Silicone Dilators&tc=1
I'm so glad you don't feel alone ... you're not!
And be patient ... geez, you are still healing and actually doing quite well given you really just finished treatment!!
You have a lot going for you .... you're healing and want to get back to "normal" ... that's important.
xoxoxo
Thank you so much for the information on the dilators. I will check it out. It is so helpful to talk with you all about this. It is amazing and a God send. I will let you know had I fair.
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