We found the ACS pamplet on the subject helpful. There are versions for both men and for women with cancer. Print it out, offer it your partner, and perhaps use it as a starting point for the conversation. Worked for us.
6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021
Last edit: 6 years 10 months ago by Jack R. Reason: signature
I just read your post about intercourse after surgery and during chemo. Thank you so much for putting this difficult subject into such easy to read terms. I am looking ahead at having surgery including pan Ileal conduit. It is so foreign to me I can't even wrap my head around it. I am feeling very depressed and don't know how it will affect my life with my husband. But your words and advice, give me some hope that I may be able to implement into what my doctor refers to as the new norm.
You asked a question that was hard for you and you deserve as honest of an answer. For anyone that is easily offended by sexually frank discussion this may be more than you want to know.
Unless we bring it up as woman sexuality and cancer is not touched a pone by our doctors. The limited studies of woman and RC looking at sexuality show that as many as 50% have sexual problems following RC of one sort or the other. And of course sexuality and chemo is a story in and of its self.
First let’s look at some of the factors that the RC brings with it.
A. If the back wall of the vagina was taken it can cause shortening of the vagina and make intercourse difficult. Many woman need to use what is called a vaginal dilator and it takes patience and time to lengthen and stretch the vagina.
B. The onset of menopause due to hysterectomy. This can cause vaginal dryness and lack of desire.
C. A change of body imagine due to surgical scars, stomas or outside appliances.
D. Our partners have a problem moving between the caregiver to the lover roles. They worry about hurting us, they worry about urine discharge.
E. Emotional and physical fatigue from dealing with all the ramifications cancer brings to our lives.
Now let’s look at some of the factors that we face as woman sexually while doing chemo.
A. Lack of desire due to fatigue or feeling unwell.
B. Lack of desire due to menopause caused by chemotherapy.
C. Changes in body image due to hair loss, weight gain or weight loss.
D. Our partners are worried about us and often times have trouble moving between their role as caregiver and lover.
E. Our partners are fatigued due to their expanded responsibilities during our treatment.
Now here is the good news my partner and I have faced this and in the last two years came to the place that we now have a deeper intimate relationship than we did perhaps prior to blc. It takes patience on both parties’ parts but with time can be done.
Here are a few suggestions that worked for us and have been suggested by other woman.
A. If leakage is a worry empty right before starting.
B. Don’t place so much importance on intercourse for a while. Exploring other forms of intimacy can actually add spice and intimacy to a relationship.
C. I you suffer from vaginal dryness make sure that you find a good lubricant.
D. When you try intercourse again even if the posterior wall of the vagina was not taken it will take some patience that area has been through a lot. Do not be surprised it takes a while to have success it is a matter of stretching. Make sure that you have plenty of foreplay this is not the time for a quickie.
E. If you lack desire due to menopause many woman find that the desire may not be there but they still enjoy the act once they get going.
F. Some women talk to their doctors about hormone replacement. Have an honest dialog with your doctor about the benefits versus potential health complications.
G. If body image is a problem lingerie can help a lot. Mae West once said that any woman should never let a man see her comply naked or in anything but candlelight. I took her advice as I have a continent umbilical diversion I would cover my stoma with a light day pad and wear a teddy.
H. If your partner is scared of hurting you give it time. Start by cuddling and pleasuring each other and take it a step at a time.
I. Talk to your doctor about the possible need to use a condom during chemotherapy.
J. Except that some of the problems we face during cancer treatment is situational and time is the answer. Once treatment is over and life returns to a more normal routine and the emotional pressure returns to normal things will happen in a natural way.
K. If you don’t feel like making loves during treatment find the energy to pleasure your partner. It is a loving gift that leaves you both feeling cared for and close.
L. If your doctor give an ok to a vaginal dilator some woman have found success obtaining one the same size and shape as the medical one in adult stores or online that had the vibrating feature. The found this helped relax the muscles and increased feeling and sensitivity. Helping make what could be a chore more enjoyable.
M. A lot of us past the honeymoon phase forget how much fun necking was and need a refresher course in foreplay anyway this is a good time to start at the beginning.
N. For some this is a good time to seek couples therapy. Find someone that has experience with couples dealing with serious illness.
Don’t be too hard on each other there has been a great shock to your relationship in many ways. I know for us roles in some ways shifted and stress was incredible on many fronts. You are both scared while trying to do what is best for your children without a road map on how. The family pressures and problems that were there before blc do not magically disappear when you hear the C word. You are facing chemotherapy and that is an unknown to you. This is very hard on relationships and everyone is just trying to find out what reality is again. Yes no performance pressure here.
I can only tell you how we got through it; imperfectly with a great deal of love. Sometimes we puffed and sometimes we were in a huff, sometimes we said the right then and sometimes not and we forgave each other for being human. He forgave me when I was feeling so bad I forgot his needs and I tried very hard to remember them when I could. And through it all we held on to each other in a physical and emotional way. And one day we realized that we had made it through and the world was normal again or should we say a new normal but good. Make sure that you both keep the fact that these are early days and one day treatment and healing will end and you will enter a new phase of survivorship. Print this out for your partner and share it if you like he may be the strong silent type but I bet he would like to know that what is going on here is normal and you two are not reinventing the wheel on the fact that intimacy is complicated by blc.
Here is the link to our woman and sexuality links page.
Thank you for your reply it is helpful. This is a painful subject, but I think it's important which is why I forced myself to write about it. Your response was very helpful. I might take you up on that email offer. Other avenues for intimacy won't be a problem for me. I'm just pissed that cancer gets to affect this aspect of my life to. I will relate your answer to the dribble question to my hubby. Hopefully this will help him.
I remember being very nervous about sex after the RC - we were newlyweds which made me very very nervous!
1. It has been over a year from my RC and I still worry about that. I think it s my bone pain that causes me that though - I have bone met in my hip.
2.We have our foreplay in the shower alot! My husband was not worried about leaking but I was. With the shower right beforehand - we I have done all I can and it has not been a problem.
3.We all have our own time frames - you will know when you are ready. My hubby was most patient - that helped.
4.Sex during chemo....this is my experience....Penetration while getting chemo was beyond painful even with tons of lubrication. Chemo somehow effects those sensitive tissues dramatically. I would suggest looking into being sexual with out intercourse - weird as that sounds. We explored other avenues for satisfaction to maintain intimacy.
The sex side of this is another step back into your life and a healthy step too. If you want to email me about these things that is ok too. I was lucky that Claire initiated pms with me on this - she had been there and was very open.
God Bless and hope this helps, Holly