vaginal cancer HELP the burns are killing me!

doneil
doneil Member Posts: 3
in Gynecological Cancers (other than ovarian and uterine) #1
Hi everyone

I was diagnosed with vaginal cancer and a VIN 3 tumour last November, to date I have had bracytherapy (internal radiation) 7 treatments over 4 days in hospital, operation for 4 lymph nodes to be removed, another operation to remove the vin 3 tumour, and currently I have 2 chemo's to go out of the 5 and 11 radiations left to go out of 27.

My problem is I am burned so badly it stings to pee, the groin skin on one side has opened up, and about an inch up my anus is so burned everytime I have to poo it feels like passing glass and the pain has tears streaming I have never felt pain quite like it, I would rather deliver ten babies one after the other!

Does anyone know of anything that will releive the pain, or soothe the area at all, I have been given decent doses of morphine for the pain and not sure this is even helping, if it is its still dreafully painful, I have tried lignocaine gel, an anethetic hemaroid cream, manuka honey, and no releif, the nurses and Dr's working with me also seem to be at a loss of how to help, but do not see stopping treatment as an option, and I am unsure I can get through another 11 as each day leaves me more burned!

Any advice would be truely welcomed?

Donna

Comments

  • mamadawg
    mamadawg Member Posts: 17
    #2
    I went through similar
    I went through similar treatments for my cervical cancer and I found that using a sitz bath filled w/ warm water helped a lot. It will not help w/ the burning during urination, but it provides some comfort after. You can pick one up at local pharmacy for a very low price...around $15. I hope that helps you, and best of luck with rest of your treatments.
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #3
    stopping treatment may not be an option
    but interrupting treatment temporarily is. If you are this bad now, 11 more treatments will make you very much worse. I hope they are examining you, not just talking to you. And by examining you, this may mean several times a week, given your precarious situation. The radiation physician may or may not be the one to decide this. Is there a Gyn oncologist involved on a daily basis?
  • juliamary
    juliamary Member Posts: 11
    #4
    longtermsurvivor said:

    stopping treatment may not be an option
    but interrupting treatment temporarily is. If you are this bad now, 11 more treatments will make you very much worse. I hope they are examining you, not just talking to you. And by examining you, this may mean several times a week, given your precarious situation. The radiation physician may or may not be the one to decide this. Is there a Gyn oncologist involved on a daily basis?

    Burns
    I know how bad this is, i got so burnt down there my Oncologist admitted me to hospital so i could finish treatment, which was the best thing as they can give you stronger painkillers.
    I think you need to ask your Oncologist as the treatment gets worse after you have actually finished.
    julia
  • juliamary
    juliamary Member Posts: 11
    #5
    longtermsurvivor said:

    stopping treatment may not be an option
    but interrupting treatment temporarily is. If you are this bad now, 11 more treatments will make you very much worse. I hope they are examining you, not just talking to you. And by examining you, this may mean several times a week, given your precarious situation. The radiation physician may or may not be the one to decide this. Is there a Gyn oncologist involved on a daily basis?

    Burns
    I know how bad this is, i got so burnt down there my Oncologist admitted me to hospital so i could finish treatment, which was the best thing as they can give you stronger painkillers.
    I think you need to ask your Oncologist as the treatment gets worse after you have actually finished.
    julia
  • doneil
    doneil Member Posts: 3
    #6
    thank you all for your
    thank you all for your comments, yes there is a daily checks happening, today I was advises to use lignocaine gel, take the morphine, 4 salt baths a day, and a fan on the area overnight, keep it clean and dry and it should hold at this level. I do pray it does not get any worse and I can handle it to the end!

    9 more to go now, Dr said its like running up a hill, your have been through so much, with lung clots after Bracy almost died, now you can see the finish line and you have a stitch in your stomach, do not lay down keep running and i will see you at the finish line!

    Well he gave me strength for today

    Best wishes to all of you!
  • eihtak
    eihtak Member Posts: 1,473 Member
    #7
    doneil said:

    thank you all for your
    thank you all for your comments, yes there is a daily checks happening, today I was advises to use lignocaine gel, take the morphine, 4 salt baths a day, and a fan on the area overnight, keep it clean and dry and it should hold at this level. I do pray it does not get any worse and I can handle it to the end!

    9 more to go now, Dr said its like running up a hill, your have been through so much, with lung clots after Bracy almost died, now you can see the finish line and you have a stitch in your stomach, do not lay down keep running and i will see you at the finish line!

    Well he gave me strength for today

    Best wishes to all of you!

    Burn Help
    The comment about pain meds is correct....don't try to tough it out. I had radiation for anal cancer with lymph node involvement so was also badly burned front to back. They kept increasing my pain meds and that helped a little, but I too was admitted to the hospital. Standing or laying on my side with a pillow between my knees was most comfortable. I did discover that Dermoplast...an OTC spray that is usually recomended after childbirth was very helpful. Since its a spray you dont have to irritate the area when applying it by touching. I used it after a shower or sitz bath and several times throughout the day. Wihin a couple weeks of stopping radiation I began to heal quickly, but the last couple weeks were killers because you already cant stand it and know its going to get worse. NEVER apply anything right before a treatment as that can aggrivate it even more. I will add you to my prayer list, it is so hard to make others understand what you're going through unless they've been there. Be strong...there is light at the end of the tunnell!!
  • ppaseka
    ppaseka Member Posts: 70
    #8
    burning
    I know this is probably too late but the doctors gave my wife an oral med that numbed the urinary tract that virtually relieved her of all burning of that area during her pelvic radiation for Bartholin gland cancer.
  • BeStill2010
    BeStill2010 Member Posts: 3
    #9
    Hurts to Pee after radiation - Idea that Helped me
    Everyone,

    I had vaginal adenocarcinoma and it hurt so bad to pee after internal radiation (intersitital brachy therapy) and external beam radiation that I would just not drink and hold it as long as possible. My radiologist told me that I could pee in a sitz bath and she'd heard that helps. I didn't love the idea of peing in water I sat in so i just began to fill a large cup of warm water and pour it over myself as I peed and it was a huge life saver and not time consuming. I could do this at the office bathroom even and noone ever knew.

    Would love to connect with some of you that have had the same type of cancer. There are not many of us, so shoot me a message.

    God bless.

    K-
  • ronmybaby
    ronmybaby Member Posts: 20
    #10
    BeStill2010 said:

    Hurts to Pee after radiation - Idea that Helped me
    Everyone,

    I had vaginal adenocarcinoma and it hurt so bad to pee after internal radiation (intersitital brachy therapy) and external beam radiation that I would just not drink and hold it as long as possible. My radiologist told me that I could pee in a sitz bath and she'd heard that helps. I didn't love the idea of peing in water I sat in so i just began to fill a large cup of warm water and pour it over myself as I peed and it was a huge life saver and not time consuming. I could do this at the office bathroom even and noone ever knew.

    Would love to connect with some of you that have had the same type of cancer. There are not many of us, so shoot me a message.

    God bless.

    K-

    I am new...
    I am scared and need to talk. I'm 55 yrs old and had a hystarectomy (i know it's misspelled) 2 weeks ago. They removed a grapefruit size tumor in that area. Now I'm told I must have radiation and chemo. This will start up my first meeting with one of two docs is Sept 26th. I guess my concern is peeing and pooping. I don't have any female organs now and the radition will probably be placed in my vagina. My doc. said it's at the end of the vagina and some cancer left on the rectum she couldn't cut it out or I would have had to have a "bag" for waste. So she left it on the rectum. I am so worried and don't have anyone to talk with about it. I don't know what stage I am since I haven't been yet to my first visit. Did your pain in peeing go away? I'm so afraid this radiation will cause more problems than help me. I dont' want to have a lifetime of problems with peeing and pooping due to this internal radiation. Please give me some encouragment. thanks. My name is Kitty. I live in GA.
  • debrajo
    debrajo Member Posts: 1,095 Member
    #11
    ronmybaby said:

    I am new...
    I am scared and need to talk. I'm 55 yrs old and had a hystarectomy (i know it's misspelled) 2 weeks ago. They removed a grapefruit size tumor in that area. Now I'm told I must have radiation and chemo. This will start up my first meeting with one of two docs is Sept 26th. I guess my concern is peeing and pooping. I don't have any female organs now and the radition will probably be placed in my vagina. My doc. said it's at the end of the vagina and some cancer left on the rectum she couldn't cut it out or I would have had to have a "bag" for waste. So she left it on the rectum. I am so worried and don't have anyone to talk with about it. I don't know what stage I am since I haven't been yet to my first visit. Did your pain in peeing go away? I'm so afraid this radiation will cause more problems than help me. I dont' want to have a lifetime of problems with peeing and pooping due to this internal radiation. Please give me some encouragment. thanks. My name is Kitty. I live in GA.

    Kitty, I don't know if this
    Kitty, I don't know if this helps, and each of us are different, but I had five rounds of internal radiation and did not feel a thing. You may want to call the dr. early as you might have a UTI. I had a radical hysterectomy for UPSC cancer(I'm on the uterine boards)six treatments with Taxol/Carboplatin and the radiation. You will have some problems with BM due to the cancer your dr. couldn't get, but we call this "the new normal". Don't worry about staging, grade,type,ect. Slow down, give the dr, a call and try to rest. Two weeks is not very long after any operation. You need to heal and calm down...stress is very bad for you. All the boards are here for you, ask ANYTHING you want, nothing is out of bounds! By the way I am 28 months NED...NO EVIDENCE of DIEASE ! Thank God! Best, debrajo
  • dragoneye539
    dragoneye539 Member Posts: 1
    #12
    BeStill2010 said:

    Hurts to Pee after radiation - Idea that Helped me
    Everyone,

    I had vaginal adenocarcinoma and it hurt so bad to pee after internal radiation (intersitital brachy therapy) and external beam radiation that I would just not drink and hold it as long as possible. My radiologist told me that I could pee in a sitz bath and she'd heard that helps. I didn't love the idea of peing in water I sat in so i just began to fill a large cup of warm water and pour it over myself as I peed and it was a huge life saver and not time consuming. I could do this at the office bathroom even and noone ever knew.

    Would love to connect with some of you that have had the same type of cancer. There are not many of us, so shoot me a message.

    God bless.

    K-

    Hurts to Pee
    I too have vaginal adenocarcinoma at the end of may I had surgery to remove alot of the left side of my vagina. September 24th I started my external radiation 25 of them.Now today I had my first internal and I have 4 left.When I got home I had to use the bathroom and I thought I was going to shoot through the roof.So I am going to try the cup of water and pray that it works.I hope you are doing well and God Bless
  • ppaseka
    ppaseka Member Posts: 70
    #13
    dragoneye539 said:

    Hurts to Pee
    I too have vaginal adenocarcinoma at the end of may I had surgery to remove alot of the left side of my vagina. September 24th I started my external radiation 25 of them.Now today I had my first internal and I have 4 left.When I got home I had to use the bathroom and I thought I was going to shoot through the roof.So I am going to try the cup of water and pray that it works.I hope you are doing well and God Bless

    Hurts to Pee
    Your doctor should be able to give you a med for that. I don't remember the name but taken orally it numbs everything so it doesn't burn. He kept asking her every week during her visits if it was burning to urinate and as soon as that side effect appeared, he gave her the script and it worked almost immediately.
  • ppaseka
    ppaseka Member Posts: 70
    #14
    dragoneye539 said:

    Hurts to Pee
    I too have vaginal adenocarcinoma at the end of may I had surgery to remove alot of the left side of my vagina. September 24th I started my external radiation 25 of them.Now today I had my first internal and I have 4 left.When I got home I had to use the bathroom and I thought I was going to shoot through the roof.So I am going to try the cup of water and pray that it works.I hope you are doing well and God Bless

    Hurts to Pee
    Your doctor should be able to give you a med for that. I don't remember the name but taken orally it numbs everything so it doesn't burn. He kept asking her every week during her visits if it was burning to urinate and as soon as that side effect appeared, he gave her the script and it worked almost immediately.
  • ppaseka
    ppaseka Member Posts: 70
    #15
    dragoneye539 said:

    Hurts to Pee
    I too have vaginal adenocarcinoma at the end of may I had surgery to remove alot of the left side of my vagina. September 24th I started my external radiation 25 of them.Now today I had my first internal and I have 4 left.When I got home I had to use the bathroom and I thought I was going to shoot through the roof.So I am going to try the cup of water and pray that it works.I hope you are doing well and God Bless

    Hurts to Pee
    Your doctor should be able to give you a med for that. I don't remember the name but taken orally it numbs everything so it doesn't burn. He kept asking her every week during her visits if it was burning to urinate and as soon as that side effect appeared, he gave her the script and it worked almost immediately.
  • ppaseka
    ppaseka Member Posts: 70
    #16
    dragoneye539 said:

    Hurts to Pee
    I too have vaginal adenocarcinoma at the end of may I had surgery to remove alot of the left side of my vagina. September 24th I started my external radiation 25 of them.Now today I had my first internal and I have 4 left.When I got home I had to use the bathroom and I thought I was going to shoot through the roof.So I am going to try the cup of water and pray that it works.I hope you are doing well and God Bless

    Hurts to Pee
    Your doctor should be able to give you a med for that. I don't remember the name but taken orally it numbs everything so it doesn't burn. He kept asking her every week during her visits if it was burning to urinate and as soon as that side effect appeared, he gave her the script and it worked almost immediately.
  • MYarn
    MYarn Member Posts: 2
    #17
    A friend is in pain and is

    A friend is in pain and is going to try hyperbaric chamber. After radiation she is a mess and doctors not sure what to do to heal so they are trying St. Joseph Burn Clinic and Wound Center.

    MYarn

  • mmcia
    mmcia Member Posts: 11
    #18
    burns

    I had 31 radiation sessions and ended up with deep 2nd and 3 rd degree burns. Luckily a 3 rd degree doesn't hurt as all the nerves are dead but flesh was falling off me in chucks so it was unerving. The radiation burns really hurt for less than a week, the doctors gave me morphine. I found urination painful till I figured out that I could fill a sitz bath with water and lower my urethra into the water to pee and then it didn't hurt at all. Within a week the area was all pink and healed.

  • Blessed0303
    Blessed0303 Member Posts: 1
    #19
    mamadawg said:

    I went through similar
    I went through similar treatments for my cervical cancer and I found that using a sitz bath filled w/ warm water helped a lot. It will not help w/ the burning during urination, but it provides some comfort after. You can pick one up at local pharmacy for a very low price...around $15. I hope that helps you, and best of luck with rest of your treatments.

    sitz bath

    you mention that she can pick one up. Im lost i thought a sitz bath consist of luke warm water and epsom salt. Is there something else?

  • Vajayjay
    Vajayjay Member Posts: 10
    #20
    Blessed0303 said:

    sitz bath

    you mention that she can pick one up. Im lost i thought a sitz bath consist of luke warm water and epsom salt. Is there something else?

    There are several

    There are several options....the hospital gave me a basin with a bag that resembles an IV bag with a tube attached. You fill the bag with water (I had to use iodine) and let it spray onto you. They are hard to use at home as you have to hold the bag up. Or you can sit in the bath with the same solution....much easier!

  • mtsilvestro
    mtsilvestro Member Posts: 1
    #21
    mamadawg said:

    I went through similar
    I went through similar treatments for my cervical cancer and I found that using a sitz bath filled w/ warm water helped a lot. It will not help w/ the burning during urination, but it provides some comfort after. You can pick one up at local pharmacy for a very low price...around $15. I hope that helps you, and best of luck with rest of your treatments.

    burning vaginal while urinating

    I found that pouring warm water from a plastic bottle while I'm urinating is total relief!!! I then apply A & D ointment or  aquaphor cream on.  It has helped heal and releave my burning.  Good luck..

     

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