Had Surgery Yesterday for Vaginal Stenosis and I'm l'm Probably More Frustrated Than Relieved!

2

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  • rlr000dc
    rlr000dc Member Posts: 51
    edited March 2017 #22
    diet changes

    Anyone have some diet changes they have had success with? I have a nutribullet. Its not as bad as i thought it would be. I like receiving the benefits of the vitamins from the drink mixes that i make, since i dont eat as much lately. I try not to eat sugar every day like i used to thats been the hardest part. After chemo i was on a fountain soda and ice cream diet, ya i know!

    also wondering if i should limit the amount of time i spend in the sun? that my favorite too that i will probly have to quit:(

  • mp327
    mp327 Member Posts: 4,440 Member
    rlr000dc

    I have had no success with dilators in regards to getting back my sex life.  I used to use them regularly, but since they haven't helped, I only use often enough to keep things open for gyno exams.  That said, others have had success, so get a set and use regularly to see what happens for you.

    I had no such problems with my port, but fortunately, my med onc allowed me to have it removed after 3 months post-treatment.  It sounds like yours has been somewhat problematic and I'm sorry your doctor will not give the okay to have it removed yet.

    As for diet changes, I have a Nutribullet too, but rarely use it anymore.  I should probably get it out again and put it to use to improve my diet.  I guess I just suffered from burnout on eating all of that healthy stuff!  I am somewhat addicted to sugar, which is not good, and I love my chips and salsa.  I'm bad!

    Sun exposure is good in small doses.  I love to be outdoors and have gotten better about using sunblock, but maybe still have a ways to go.

     

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    Rlr

    If you are like I was you are just tired of having medical appointments so gyn can wait but don't put it off forever. You want to be sure you still get regular exams and pap tests. I'm like Martha just need to have things open enough for gyn exam. It is dismaying that there is so much about side effects that was never mentioned or just briefly touched on.

    As for diet I too have a sugar addiction but other than that I try to eat healthy. You might get your vitamin D level checked (blood test). I was super low and now take 4,000 IU a day. I've read that half of people with GI cancers have low vitamin D. 

    I hated my port, I was always bumping it and hurting myself, hugs could even hurt! I got mine out about 2 1/2 months after treatment. So if you really want it out ,it is your body remember! my doctor said something about leaving port in longer but didn't argue when I asked to have it out. 

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    Rlr

    My chemo dr says CT yearly, anoscopy every 6 mos to one year, and DRE ( digital rectal exam) every three months. I just passed the one year mark so now he's letting me go a whole four months between DREs!! 

  • sephie
    sephie Member Posts: 650 Member
    rlr000dc said:

    Soo?

    Is this something that all of us should be concerned about? I still have swelling of the vulva along with other issues but havent thought of this even happening ugh!

    swollen vulva

    i was soooo swollen , bleeding in that area that i could feel the tissues between my legs.....MD Anderson nurses (with My permission)  came to see the damage as a learning tool......radiation does this.....it took weeks to go down but the docs were correct that it would go down after radiation was over.....sephie

  • rlr000dc
    rlr000dc Member Posts: 51
    edited March 2017 #27
    Thanks for the timely replies

    Thanks for the timely replies! You all are so great! Yep gotta love the sugar, I try to eat something good when im hungry but i still eat some sugar everyday. After tmt I didnt even want a soda (quit 3 yrs prior) then one day i just started drinking it. Im sure you all  have read how sugar feeds cancer? that scares me! I guess i will do the bullet drinks for a while since i feel there are many vitamins to gain from it.

    My journaling didnt last very long but I do chant and try to stay positive with my meditation. Recently an old high school acquaintance came into my life and like you ladies on here, I try to encourage her it really makes me feel good when i feel like i can make a difference.

    Yes I am so tired of all of this dr stuff!   The infor on the dialators sound legit I was able to insert a finger a lil of the way so maybe I can start there. at least make sure it doesnt close completely! I may make an appt and get port removed before summer? and get anascopes.The only time the port hurts is when the cat jumps or stands on it! I was 3 pints low on blood and didnt know it when i went for fluids thru the port, thats when it hurt worst!  I hated getting lectured on how i needed to drink more liquids. Dr asked me to use two enimas before digital procedure and before the anascope, that really didnt make things any better.  At least for the colonoscopy i could just flush out!

    Congrads on the 4 month exams! how in the world do you get them not to hurt? and are yas getting anascopes as well?

    Rhonda

  • rlr000dc
    rlr000dc Member Posts: 51
    mp327 said:

    rlr000dc

    I have had no success with dilators in regards to getting back my sex life.  I used to use them regularly, but since they haven't helped, I only use often enough to keep things open for gyno exams.  That said, others have had success, so get a set and use regularly to see what happens for you.

    I had no such problems with my port, but fortunately, my med onc allowed me to have it removed after 3 months post-treatment.  It sounds like yours has been somewhat problematic and I'm sorry your doctor will not give the okay to have it removed yet.

    As for diet changes, I have a Nutribullet too, but rarely use it anymore.  I should probably get it out again and put it to use to improve my diet.  I guess I just suffered from burnout on eating all of that healthy stuff!  I am somewhat addicted to sugar, which is not good, and I love my chips and salsa.  I'm bad!

    Sun exposure is good in small doses.  I love to be outdoors and have gotten better about using sunblock, but maybe still have a ways to go.

     

    are you dealing with your

    are you dealing with your chronic kidney disease okay? I seen it on another post just wondered.

  • mp327
    mp327 Member Posts: 4,440 Member
    rlr000dc said:

    are you dealing with your

    are you dealing with your chronic kidney disease okay? I seen it on another post just wondered.

    rlr000dc

    Thanks for asking.  The kidney disease was quite a shock.  I have been able to improve my kidney function from stage 3 disease to stage 2 (at last check with the nephrologist) through adequate hydration and a few diet changes, mostly cutting back on salt.  The thing about kidney function is that it can fluctuate greatly from day to day or even hour to hour.  Of course, I'm never aware of those fluctuations, as there really are no symptoms.  For example, when I saw my nephrologist in December, my kidney function labs were all within normal limits, which was great news.  However, when I saw my medical oncologist for my yearly visit with her in February, she ran labs, including kidney function, and those were the only tests that were abnormal.  It is a daily struggle for me to get enough water, as I really don't like to drink water!  I always try to get at least 72 ounces and even more if possible.  It will always be an ongoing struggle for me.  I just hope and pray I never end up needing dialysis.

    Martha 

  • mp327
    mp327 Member Posts: 4,440 Member
    edited March 2017 #30
    Rhonda

    I love sugar too.  My dearly departed medical oncologist who was the doctor who saw me through treatment from the beginning until December 2015, when he suddenly died, had the sugar discussion one time.  He didn't seem to think there was much to the theory that sugar feeds cancer.  He was a very smart man and a great doctor and told me "everything was okay in moderation," even tequilla!  I had to laugh about the tequila, although I do enjoy it now and then!

    Getting enough fluids is difficult for some people, including me.  I think it's further complicated by the fact that my bladder doesn't have the capacity that it had before treatment.  If I drink too much water, then leave the house, the first thing I must do when I reach my destination is find a bathroom.  It frustrates me to no end!  Road trips are the worst!  I can tell you where every rest area is between my house and where all my family lives!  Cry

    You will continue to heal.  I know it is a little discouraging right now, but your body just needs some time.

    Martha 

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    edited March 2017 #31
    Exams

    The rectals  do get less painful with time. I had an anoscopy in November last year and plan to wait until November to get the next one. I think stress is worse than sugar so I am not worrying too much about eating sugar. Just trying to keep stress level down and do deep breathing five minutes a day ( need to get back to that, I've been on vacation!)

  • rlr000dc
    rlr000dc Member Posts: 51
    tequila

    Wow! thats alota wata! does tea and coffee count as part of that? Mercy lands im about to 24 ounces it does seem like my bladder has shrank as revealed by the many restroom breaks! One tequilla , two tequilla, three tequilla, floor says my favorite shirt i got in Branson years ago. When I drink now it just makes me sleepy...No symptoms with your kidney trouble huh? Did that happen long after the anal cancer? geesh. Glad your stage went down to two maybe it will get lower with time. I am hopein you never need dialysis!

    Sorry to hear about your fav dr passing, its nice to get one you trust and can turn to. I think i agree about the sugar and everything in moderation is better hopefully. All we can do is wait and see.

    When we go to meet Molly in New Orleans we will need to search down a bathroom huh?lol.. HI Molly!

  • rlr000dc
    rlr000dc Member Posts: 51
    New Orleans

    Congrads on passing a year! Happy to hear you are mobile and feeling good enough to enjoy vacation!

    Thanks for saying that about the stress, I had been considering that as a factor. The last 4 years of my life it was one thing after another. I try to avoid it now too. Most things seem insignificant after having cancer to me. I still feel tired now and that makes me wonder how tired i was before with cancer! Some tiredness may be from the nerve pill i take. I cant wait to feel more active, maybe summer will help. Getting out in the yard and seeing the sunshine will be nice since i was sick all last summer.

  • mp327
    mp327 Member Posts: 4,440 Member
    edited March 2017 #34
    rlr000dc said:

    tequila

    Wow! thats alota wata! does tea and coffee count as part of that? Mercy lands im about to 24 ounces it does seem like my bladder has shrank as revealed by the many restroom breaks! One tequilla , two tequilla, three tequilla, floor says my favorite shirt i got in Branson years ago. When I drink now it just makes me sleepy...No symptoms with your kidney trouble huh? Did that happen long after the anal cancer? geesh. Glad your stage went down to two maybe it will get lower with time. I am hopein you never need dialysis!

    Sorry to hear about your fav dr passing, its nice to get one you trust and can turn to. I think i agree about the sugar and everything in moderation is better hopefully. All we can do is wait and see.

    When we go to meet Molly in New Orleans we will need to search down a bathroom huh?lol.. HI Molly!

    rhonda

    My nephrologist told me that tea and coffee, since they contain caffeine, which can act as a diuretic, only count about half when including them in fluid intake amounts.  When I make coffee, I do half caffeinated and half decaf.  As for symptoms with the kidney disease, I had none.  It was discovered through blood work.  I was treated for anal cancer in 2008 and diagnosed with kidney disease in October 2015, 7 years after my treatment ended.  I cannot prove that treatment or contrast from numerous scans caused or contributed to this, but I'm sure it didn't help.

    My doctor suddenly passing away was a huge shock.  It was devastating news to so many people.  I attended both the visitation and funeral and there were so many of his patients in attendance.  So sad.  You really hang all of your hope on your doctor(s) when you're ill.

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    edited March 2017 #35
    Bathrooms!

    Funny you should mention bathrooms! They were few and far between in the French Quarter unless you were eating at a reataurant. I'm sure with all the drinking that goes on there I wouldn't want to have a bathroom open to the public either. My need to go so often really has gotten better with time. I got a couple of prescriptions for frequent urination and the first one made me have such a dry mouth I drank more water which kind of defeated the purpose. Then I got mybertriq and never even tried it because I didn't really want to add another medication.

    We did have a great vacation and it felt so good to be able to be mostly normal. Of course I got diarrhea with all the different food, but oh well. At least it gives me priority on the bathroom when we're all sharing one!

  • rlr000dc
    rlr000dc Member Posts: 51
    mp327 said:

    rhonda

    My nephrologist told me that tea and coffee, since they contain caffeine, which can act as a diuretic, only count about half when including them in fluid intake amounts.  When I make coffee, I do half caffeinated and half decaf.  As for symptoms with the kidney disease, I had none.  It was discovered through blood work.  I was treated for anal cancer in 2008 and diagnosed with kidney disease in October 2015, 7 years after my treatment ended.  I cannot prove that treatment or contrast from numerous scans caused or contributed to this, but I'm sure it didn't help.

    My doctor suddenly passing away was a huge shock.  It was devastating news to so many people.  I attended both the visitation and funeral and there were so many of his patients in attendance.  So sad.  You really hang all of your hope on your doctor(s) when you're ill.

    that makes sense about the

    that makes sense about the caffine actually. as far as the kidney disease just wondered what i may have to look forward too. its often a worry with all the tmt and test we have been through!

  • rlr000dc
    rlr000dc Member Posts: 51

    Bathrooms!

    Funny you should mention bathrooms! They were few and far between in the French Quarter unless you were eating at a reataurant. I'm sure with all the drinking that goes on there I wouldn't want to have a bathroom open to the public either. My need to go so often really has gotten better with time. I got a couple of prescriptions for frequent urination and the first one made me have such a dry mouth I drank more water which kind of defeated the purpose. Then I got mybertriq and never even tried it because I didn't really want to add another medication.

    We did have a great vacation and it felt so good to be able to be mostly normal. Of course I got diarrhea with all the different food, but oh well. At least it gives me priority on the bathroom when we're all sharing one!

    Sounds like you were trying

    Sounds like you were trying to fix both ends! bet that was  rough with few bathrooms! and i dont blame you for not wanting more medicine!

  • mp327
    mp327 Member Posts: 4,440 Member
    rlr000dc said:

    that makes sense about the

    that makes sense about the caffine actually. as far as the kidney disease just wondered what i may have to look forward too. its often a worry with all the tmt and test we have been through!

    rlr000dc

    It is a worry for me too.  Radiation all by itself can cause other secondary cancers, such as leukemia.  I will never know what caused my kidney disease.  All I can do is try to keep it from worsening at this point.

  • annreilly
    annreilly Member Posts: 1
    Surgery for Vaginal Stenosis

    Has anyone had surgery recently for vaginal stenosis? I am getting no where with dialators.

     

  • LindaBaehr
    LindaBaehr Member Posts: 47
    How Long Post-treatment?

    This is all new to me.  Vaginal stenosis and dilators were never mentioned to me before treatment.  This is the first I am learning about this!  In a couple of weeks I will be one year post treatment.  How long after treatment did this start happening?  I don't need any more side effects!

  • eihtak
    eihtak Member Posts: 1,473 Member
    edited June 2017 #41

    How Long Post-treatment?

    This is all new to me.  Vaginal stenosis and dilators were never mentioned to me before treatment.  This is the first I am learning about this!  In a couple of weeks I will be one year post treatment.  How long after treatment did this start happening?  I don't need any more side effects!

    LindaBaehr...

    Hi,

    Like all other side effects some have many long lasting issues, and others have very little. There was little or no discussion by my health care team about stenosis to me either and learned about it mostly from this forum "after" the fact as well. (I was dx 6 1/2 years ago) About a year after treatment I ordered a set of dilators from a company called Vaginismus and followed their recommendations for use, starting with the smallest size and working my way up....never did get past the third size. I used them faithfully for quite a while, but in the last couple of years I use them only once in a while. I found it worked easiest for me to keep them in the bathroom and insert when relaxed and in the shower. I am not sexually active at the time and merely wanted to be able to have a pap and pelvic exam with as little discomfort as I could. I don't honestly know if they made a difference, while my first post treatment pap test was not fun, it also was not all that painful and no different than my most recent one. I do however have my doctor use a small or pediatric speculum and I am prepared to bleed during or after. It may be wise to discuss this concern with your gyn to decide what may or may not be needed.

    Good luck.....and be well!

    Also, congrats on the One Year Mark!!!! Yay!!!

    katheryn