Can we talk about sex?

red1976 · November 2017

I'm almost 8 weeks post my initial surgery (total hysterectomy and left ovary removal where mass was) and 1 week post omentectomy and right ovary removal so I know it's premature. But I'm 40yrs old and prior to all this had a pretty good sex life with my husband. I desperately want it to be similar post all these physical changes. I know when I start chemo there is also a safety issue as I'll be cytotoxic at times.

Is anyone comfortable sharing about sexual changes post surgeries and treatments? I am going to ask my oncologist on the 15th but I would love feedback from women who have actually lived it.

kastoyles · November 2017

Before we started having sex after my hysterectomy (complete abdominal), I was into chemo treatments. Yes, there is a time frame for caution after your treatment. My oncologist said to use condoms within the first week. Well, really who feels like having sex in that first week???..!!! We were well into my treatments before having sex and there was some discomfort initially, but things returned to normal before too long. Try a lubricant, it can help until things return to normal. Listen to your body. If it doesn't feel right, or is painful, get it checked out. Remember your body has been through a major shock and things are bound to feel different for a while.

red1976 · November 2017

@kastoyles thank you so much for sharing your story. I truly appreciate it

Marilyn · November 2017

Hi @red1976 and @kastoyles. I hope other women will share their stories here too! It can be a difficult topic for people to discuss yet it is one that most have questions and concerns about so thanks for starting the discussion!

There is a section in By Your Side that addresses intimacy (p.94-96) with some resources listed including 2 books by Anne Katz, "Women, Cancer, Sex" and "Sex When You're Sick: Reclaiming Sexual Health after Illness or Injury. " Surgery also puts you into immediate menopause which can also create new issues regarding sex along with treatment. You might want to check out www.menopauseandu.ca and/or www.hystersisters.com

red1976 · November 2017

@Marilyn Thank you so much! I will definitely check out the books. Thank you again

Claudia · January 2018

Hi @red1976 - thanks for starting this conversation. I had surgery three months ago and have now finished 2/3 of my chemotherapy treatment. Unfortunately my sex drive, which was pretty normal before, has gone down to almost zero, which really worries me. I think it's more related to the surgery than the treatment. I was not in menopause before and am worried that the removal of the ovaries and the hormonal change has had an impact on my libido.

red1976 · January 2018

@Claudia I'm sure our hormone changes will affect our sex drive. I'm not on hormone replacement but I know that can help with sex drive and will consider it if I need to!

KarenMari53 · January 2018

@red1976...
Good luck at your Dr appointment today!

Flowergirl · January 2018

Thank you for starting the topic and sharing. This can be a difficult issue and not for the subject matter, but the complexity of issues.

Hello everyone and @red1976 ; @kastoyles ; @Claudia ; @KarenMari53
I've posted below 2 very different, yet insightful articles.

How to feel closer:
https://tinybuddha.com/blog/what-to-do-want-feel-closer-to-your-partner/

Preserving Sexual Function in Women Treated for Cancer:
http://www.ascopost.com/issues/january-25-2018/preserving-sexual-function-in-women-treated-for-cancer/

KarenMari53 · January 2018

Excellent articles...thank you @Flowergirl....I have yet to have my post surgery internal exam and am very anxious about resuming sexual activity. I hope thats a normal response, I have read some horror stories about women who had issues.

Flowergirl · February 2018

Hi @KarenMari53... that is most understandable. I'll encourage you to discuss with your health care team or nurse practitioner. Sometimes, they can provide samples of lubricants so you can see which one will work for you.
one such is http://www.repagyn.ca/ and can also be found over the counter (but sometimes kept behind the counter - just ask your pharmacist) or KY

KarenMari53 · February 2018

So...I finally convinced my husband he wouldn't hurt me if we had sex. Well, lo and behold, things didn't go well...apparently my vagina has tightened from the surgery and we could not complete the deed. 😞 So at my pre-chemo appointment, I chatted with the nurse about it..awkward...but she told me that the hospital provides dilators for this purpose. Apparently its common. So armed with some lubricant and my new hospital-issued sex toys, I am going to hopefully make my vagina a welcoming place again!😂😜 If you are having this issue, talk to your nurse or gyne...you are not alone and they can help.

red1976 · February 2018

@KarenMari53 Thank you so much for sharing! I have only once attempted sex post the surgeries and it didn't feel like my old self. I've been wrapped up in chemo land and am not even sure when it's safe to attempt again. Did they mention when it's safe for sex during chemo? I plan on asking at my appt March 9th as well.

KarenMari53 · February 2018

Just use condoms first week and a half I think. After that is safe.
I was so surprised...knew it could happen.

Flowergirl · February 2018

Thank you @KarenMari53 and @red1976 for sharing - I forgot about the dilators! Our group attended a gyne education session and a woman explained her experience with them. I hope it all works out for you.

Flowergirl · February 2018

and yes, you'll want to chat with your DR....as per the guide, precautions to help prevent infection while receiving treatment.....since sexual activity can cause tiny scratches or tears in sensitive tissues, condoms suggested if having intercourse.

KarenMari53 · March 2018

Also @Flowergirl, I believe we are considered cytotoxic, which is why the protection as well. We can wait, best to be safe.
The sex ed nurse came to see me during chemo today to talk more about the dilators and also, b/c I am not on HRT, she suggested Vagifem for vaginal moisture and I think she said premarin, which is for maintenance.

Flowergirl · March 2018

Exactly @KarenMari53 - that is good you have all the support tools as well

Flowergirl · July 2018

Hello everyone - came across this resource:
http://survivornet.ca/news/watch-our-most-recent-webinar-staying-mindfully-connected-and-experiencing-intimacy-after-a-cancer-diagnosis/

Ingrid_Canon · July 2018

I am willing to talk about my experience @KarenMari53 @Flowergirl. Before I was diagnosed I was already menopausal which posed sexual issues to begin with (dryness and discomfort). A doctor wanted me to go on HRT, but this wasn't right for me although I did try Premarin for a while. Then I was plagued with the pain of my cyst and my love life went to the back burner for the most part. Come 2017, I had 2 surgeries and when I was finally ready to explore sex again my husband was having issues entering because I was so tight. I never had children so I thought that it may have been related to the long time we had been without sex. I appreciate that there is a solution (dilators) to assist but I am on a fixed income. Does anyone know what they cost and how long it takes?

KarenMari53 · July 2018

They were free at the hospital @Ingrid_Canon. There is a s

KarenMari53 · July 2018

Oops...hit the wrong button
@Ingrid_Canon....you should talk to your gyne onc and see if they will refer you to a sexual health counsellor or someone at your hospital that deals with sexual issues. The dilators should be free through them.

Ingrid_Canon · July 2018

Great thanks @KarenMari53. I will follow up with my doctor at my next visit.

Flowergirl · December 2018

tonight is for couples if interested:
https://register.gotowebinar.com/register/1989534799851828747

Flowergirl · April 16

Hi everyone ,

This started today online through De Souza institute

Gynecological Cancer Support Group: Restoring Body Image & Sexual Health After Cancer

Direct message me and I can pass you the info.... or you can connect here:

https://cancerchat.desouzainstitute.com/

Can we talk about sex?

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