After effects of Radiation

colleens said:

Hi Tiny One
Sorry, I don't know your real name so I'll respond to you this way for now. How are you feeling today? You sounded pretty frustrated the other day and totally understandable. I'd like to help if I could, even if it is just to lend an ear - or a virtual hug. You've fought the battle of all battles and lived to tell of it, so take one moment to feel proud of yourself - it wasn't easy I'm sure. Now back to bitching - I understand the frustration of wanting the old you back - me too! And I'm trying - just hit a big roadblock last week. But I'm not ready to give up yet.

I don't know details about the procedure you had that is causing you bathroom problems, but sure understand those frustrations. Send a message back if you'd like to vent or ask any questions. I'm 40 now (this all started 6 yrs ago) and I feel like an elderly person as far as making sure I'm near a bathroom whenever possible "just in case" and even often wearing Poise pads "just in case" when I'm out - how sexy is that?! It's degrading and embarassing. My daughter is 8 and I avoid the long fieldtrips on school buses and don't dare tell the other parents or her teacher that I fear going on them because when I have to go, either one, there is sometimes NO warning. So I go on all of her other field trips where I can drive and be in control. If I need to stop at a gas station on the way, well, at least I have the option. It's very frustrating and frankly limits some of the activities I'm comfortable doing, like hiking in the woods. We go boating to some beautiful remote islands with friends who like to go on long hikes, and I'm so afraid of getting a massive diarrhea attack that I make stupid excuses not to go with them on the hike. It's embarrassing and frustrating because I love to explore. Anyone else going through that? Has anyone found any medication or anything to regulate when their system is going to act up out of the blue?

As in my previous message, I have vaginal shortening and narrowing too, but now my GP has told me it's rigid and will not stretch. Can you at least stretch the walls (so personal - sorry you don't have to answer that - just trying to help). I hated the dilators too. I had NO idea going into all this that my sex life would be affected so dramatically. I am grateful to be here to **** about it of course, but it feels like a tremendous burdon. All these years I thought the painful intercouse was partly in my head because I had such a horrible brachytherapy experience - long story, but it was put in by an intern and I can't begin to describe the agony I went through when 5 nurses couldn't "yank" it out at full force. Horrible horrible experience. That's mainly why I've thought for years that intercourse was painful. I'm sure they did some damage in there and I always thought I tensed up every time my husband came near me because of that experience. More to that story but I don't want to drag this on - I know you ladies are busy and I apologize that my first few messages have been long. And look, this one is too. Sorry. Let me know if I need to keep these shorter.

Anyway, tell me more about your situation and if I can help in any way, even just listening, I'd be happy to help you.

Big hugs from Colleen in Vancouver Canada.

shanaladee said:

after effects of radiation - what i'm doing for them.
After reading all this, I knew I had to respond.

I am 42 years old and in 1998, I was diagnosed with cervical cancer. They did a hysterectomy and found out that the cancer had spread to my lymph nodes. I had to go through radiation; 35 treatments along with radiated rods and radiated seeds inserted into my vagina and rectum
:-/.

My vagina did shrink and shorten. I was told to use a dilator also or have sex as often as I can. Well, I didn't use the dilator and opted for the sex route since I am married. I am like everyone else; sometimes I have problems with bleeding during intercourse and sometimes it can be painful. I found that changing sexual positions and being creative in the bedroom helps. I use Replens or KY on a daily basis and the doctor has given me Estrogen in a tube to use in my vagina(a small dime size amount once every other week). This does help tremendously.

I am very lucky in that I have a wonderful understanding husband that constantly makes me feel like I am the only one he notices and is willing to do whatever is necessary for me to feel better.

Because of the radiation, I have problems with my bladder and my rectum/colon. I have had kidney cancer in 2004 and had a full nephrectomy. I had to go to three different doctors before one finally found it. Persistence pays off. I have been diagnosed as having Radiated induced Cystitis which means that my bladder inflames and causes LOTS of pain and some blood when I urinate, much like having a bladder infection. I may also have radiated induced colitis or something along those lines: I will be going in a couple of weeks to get a colonoscopy to have it all checked out but I noticed alot of inflamation around my rectum. It always seems that these problems seem to go hand in hand.

What has been helping me with my stomach, bowels, colon, rectum and bladder issues is to make sure that I keep regular. I eat lots of Activia yogurt, I take probiotics and I follow a Low Oxalate Diet. I also try to keep hydrated. It's not always easy but when I am being good and following all this, I feel better and I almost feel normal. When I don't follow all this, then I begin to have problems all over again.


I have had to go to a few doctors before finding the ones that I have now who seem to know and understand these issues. Within these post radiation years, I have been to some stupid doctors that generalized my issues as having IBS, nerves, etc..etc...etc..
Great doctors and persistence on my part has made a difference. I am constantly reading up and researching what I can.


It seems that when I am ok in the other areas (bladder, stomach, colon and rectum) then I have no pain and no discomfort during intercourse. Don't get me wrong, I am not healed and somedays things aren't great but they are much better and I am much happier.


Hopefully all this will help someone else. If anyone has questions, please email at shanaladee@gmail.com. I don't always check my emails right away but I will write back.

Dee

funbeadgirl said:

after effects of radiation
Hi Ladies,

I can identify with you all regarding the vaginal issues with radiation. I do believe everyone will respond differently, and the type of radiation one has also makes a difference.
I was diagnosed with vulvar adenocarcinoma, it was stage 3, so after my surgery I had 28 treatments of external radiation in entire pelvic area. I too experienced issues in the vagina. First of all, I think KY jelly is the wrong thing to use, since it is alcohol based, which will dry out tissues even more. My doctor told me to use a product called Liquid Silk, it is silicone based, it is wonderful. You can order it online at drugstore.com.I also am using a bio hormone gel vaginally at nighttime. I also use dilator every other night, and before intercourse. I have only attempted intercourse 3 times, since I recently finished radiation, but I want to take care of this issue because I don't want to wind up with recurring infections or painful pelvic exams. Sex is not the end all of my relationship with my husband, but I also am not ready to throw in the towel. I don't think these issues are addressed readily by doctors, especially if they are male, but I found a women's health specialist that deals with women after cancer treatment and menopause, which I also am going through instantly because of the radiation...fun, right?!
Don't give up, there is hope out there for us, but please look into the Liquid Silk instead of the KY jelly. Hang in there.