Hi there,

I had six weeks of radiation/chemo from August - October of '05. Then on 11/17/05 I had a total hysterctomy in addition to my rectum removed, appendix,ileostomy etc... I am currently on my last cycle (!!!!!) of Xeloda and will go in for my reversal in mid july...

TMI ALERT:
SO my question for the ladies w/similar experiences is this...does the extremely painful intercourse ever go away??? I use Vagi Fem tablets, which I am trying to use every day, and of course lubricants, and take .9 Premarin, but everything (and I mean EVERYTHING) about sex with my husband is painful. I am only 33 and would love to be intimate w/my husband more often, but it hurts SO bad, and he is so worried about hurting me that it just doesn't happen. Feels like I am being ripped apart every time! (Also have recurrent yeast infections - likely due to chemo or radiation)... I also am having bladder trouble as well. It will feel like I have to pee but I can only get dribbles out...then later I might be able to empty my bladder at full force.

Any advice you have would be great. :confused:

Take care and thanks for listening to this "delicate" subject ...probably common --but not talked about side effect of radiation/hysterectomy.

Love to all,
cats

I am sorry Cats, We have the same problem in reverse! :rolleyes: Larry and I were so relieved to find out that his "equipment" was in working order after his surgury, only to find that intercourse was painful for him. We used condoms (because of the chemo) on the couple of occasions we were inimate and his semen came out bloody:eek: and that sort of freaked us out and we havn't tried since. We also are wondering if intercourse will stop being painful for him in the future. Radiation also caused him painful urination during his treatments, but now it is only painful if he has a really full bladder.
He did get a perscription from one of his oncologists to help with the lingering numbness and pain in his hands and feet. The drug is GABAPENTIN 300 MG capules . Is anyone else using this? He is to take 1 capsule 3 x daily for 2 weeks. If there is no improvement he is to up his dosage to 2 capsules 3x daily. There is a long list of side effects such as fatigue, dizziness,confusion ect ect ect. I just hope it helps and that the side effects stay at a minimum.
Cat, I am keeping fingers and toes crossed for sucessfull reversal surgury for you and my larbo:D Hugs Kathy

Hi Gocats

I had TAH April 05 but did not need any further treatment, so cannot comment on effects of radiotherapy, etc. However, I still have moments where i experience discomfort and i put this down to scarring or possibly adhesions. It has got better as time goes by though but you really have to be patient, dont over-do it and take things really slowly. It sounds like you are doing all the right things by lubes and hrt already. You have had a lot more surgery than me and i think that you need to give yourself more time to heal internally. Hope this advise is not too frustrating for you.

Regarding the bladder issue, your surgoen will almost certainly have had to pull your bladder to one side during surgery and this can cause problems later. In the short term it hurts like heck to have a pee and control can be sporadic and long term there is a risk of prolapse. I would advise you talk to your surgoen about this but do make sure that you are practicing your kegal exercises because this will be the first thing that he/she would recommend in helping bladder control and i have to say that it did work for me. Some ladies do occassionally need tacking up though.

hope all goes well
good luck
ktee

Thank you Ktee and Larbo's Wife for the advice. I've been wanting to post this question for a long time...I'm glad to hear that it will get better w/time. I was starting to wonder. I will mention the bladder trouble to my surgeon since he will have me opened up next month anyway.

Kathy - just curious - why condoms when he is on chemo?? We have not been using condoms since I have no more female plumbing - preganancy is not an issue and we have been monogomous since we were high school/college sweethearts.

I will be patient - between the ileostomy, chemo and menopause I'm not exactly "in the mood" a lot. My husband has been the MOST patient, loving, understanding man through this...I know how lucky I am. I am just worried that the longer we wait the worse it will get. I know that the radiation shrinks things without use. UGH. You know, when you are discussing side effects of surgery w/your doctors you are just so anxious to get the cancer out that you don't care about this other stuff... I still wouldn't change a thing, it is just ANOTHER change in my life to figure out and deal with.

Thanks for letting me vent...it has been a while since I had a down day...guess I was due.

Thanks again,
Hugs to you all,
CAts

Hi Cats, We were told to use condoms as chemo is toxic and it comes out of the body in sweat ,urin, semen, ect.ect. Larry was also advised to double flush the toilet when dumping his bag during chemo treatments. We have friends that were actually told to sleep in seperate beds while the wife was on chemo due to her excessive sweating and they also washed her bedding and clothing in a seperate wash loads! :dizzy: Our Dr. never mentioned seperate beds, but did advise the use of condoms even though I have had a hysterectomy and didn't have to worry about concieving.
Larry has been feeling more energectic each day and as his last chemo was over a month ago is starting to feel a bit frisky:jester: Let's hope the third time is a charm:blob_fire Kathy

Cats:
You know I am not female, but... I can't resist jumping into a good post.

First off... PLEASE don't wait to post when you have a problem or question. We are an anonymous family here and REALLY DO want to help one another. So, what I'm trying to say is please don't be afraid to ask...look at what I have posted:eek: !!! And if it's happening to you, then chances are it's happening to us.

The pain you are feeling is MOST LIKELY due to the radiation you went through. It forever changes tissue in your body... shrinks it up like a little prune, and turns it to leather. You will, over time get some stretching so it is not so painful, and you may want to schedule an appointment with a urologist for some suggestions on excercises to stretch the tissue. Also, it's more typical for men to have difficulty urinating after this kind of surgery due to plumbing, but it happens to women as well. A urologist may want to do a urodynamic study and make sure you are voiding most of the urine in your bladder, otherwise you may start to develop urinary tract infections... which you may currently have, but since the surgery, have different symptoms.

Kathy, I'm glad to hear that your husband's plumbing is all intact. Blood in the semen the first couple times is normal as he is "cleaning things out." They manipulated his prostate quite a bit, causing some bleeding. His prostate is where most of the "volume" comes from, so the first few times it would make sense. If the bleeding continues, he might want to talk with a urologist. Lastly, your husband should DEFINITELY be wearing a condom during intercourse while he is going through chemotherapy. It is true that the toxins can pass in his semen from him to you... so protect yourself. Same holds true for women going through chemotherapy... there are toxins present in your vaginal secretions, which could irritate your partner... as far as a second bed, personally I think that's going a little too far for the toxins used to treat colorectal cancer. But that's up to your doctor to advise.

Good Luck Cats,
CancerDad:angel:

post deleted.

Cats:
I am CERTAIN at 33 that you must have had a yeast or thrush (although in the US we call oral candida Thrush) or Candida infection in the pre-cancer days. In the US, you know what we have available over the counter to treat Candida topically... Monistat (miconazole), among others. It might be worth a try, but I am willing to BET that you do have changes in your tissue as a result of the radiation, which is causing you significant discomfort during relations with your husband.

Also, even though it's topical, make sure you tell your onc/nurse that you have gone on a 1/3/7 day regimen of whatever med you choose. Although it's topical, many anti-fungals affect clearance of drugs.;)

Again Good Luck,
CancerDad:angel:

Thanks for the responses CD and rephyc. I KNOW I had a yeast infection because my gyn oncologist/surgeon took a peek. I did the treatment she suggested (Monistat for three days) and that seems to be gone for now. She thinks that it is a combination of radiation plus the lack of estrogen that is causing problems w/ elasticity. I am hoping that w/the increase in the use of the vagi fem (estrogen tablets) that things will improve. They also gave me dialators, but I have honestly not been very religious with those...VERY uncomfortable -- might as well just have intercourse as it does the same thing --and hubby doesn't mind ;) .

I have all of my pre op appointments next week so I will seek more help with all of this then.

On another note...anyone ever go to Cancer Center of America? I just came across them online this weekend. Ever hear of chrono-folfox?? I was having a hard time discerning whether they were a bunch of hooey or if they were the real deal. I was "chatting" with one of their service reps and he mentioned this chrono folfox but did not say what it was. Just curious.

Also, anyone else get TERRIFIED before a scan?? Mine are July 11 - first ones since October. I am having MAJOR anxiety about it -- I know it is unlikely that they will find anything but my brain can't seem to shut off the "what if" button.

Thanks, as always for the advice.

Hey CD when are you writing your book?? Seriously you should... in your spare time...:dizzy:

Take care,
Cats