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hysterectomy, pelvic radiation sexual side effects?

nevadavox
Posts: 3
Joined: Apr 2013

Dear all ~ My partner Michelle was diagnosed a month ago with uterine carcinosarcoma/MMMT. It's been a rough journey, and only this week is she slated to begin radiation treatments after a planned surgery was cancelled at the last minute. (The tumor has gotten too big to safely perform a hysterectomy, according to her oncological gynecologist/surgeon. Hopefully the radiation will shrink it enough to operate.)

She's lately too overwhelmed to be online doing research and communicating, so she asked me to take this on. And I recognize that my asking about sexual side effects might make some people uncomfortable. But I have to do what I can. And this is a priority question for her. (I will be there for her either way, and am much more concerned for her survival right now than anything else.)

She's been unofficially diagnosed as stage 3. Statistics available are pretty scary/grim. We're both very worried on many fronts.

She wants me to ask about the sexual side effects of doing pelvic radiation. Does anyone out there have experience of getting these treatments and still, somehow, having a sex life? Sensation? The possibility of orgasms approaching what they might have been like before? I realize it's an awkward question to pose, and that many people might be uncomfortable responding. For Michelle, knowing that some pleasurable experience is still possible after all this what she's really looking for. Sexuality is an integral part of her psyche and she feels as though something essential about her life force will be destroyed with these treatments. Anyone out there dealing with the same? Any ideas that have worked for you to maintain a sex life after undergoing this kind of stuff?

Thank you for reading. We are so grateful for this community!

~ Nick

Alexandra's picture
Alexandra
Posts: 1310
Joined: Jul 2012

Sorry about Michelle's condition and best wishes to both of you. You can read about sexual side effects of gyno cancer and treatment in detail http://www.cancer.org/treatment/treatmentsandsideeffects/physicalsideeffects/sexualsideeffectsinwomen/sexualityforthewoman/index.

It's not uncommon for chemo and radiation to trigger menopause. Oophorectomy always means menopause. Total hysterectomy (incl. cervix) means shorter vaginal sleeve length. Natural lubrication will decrease or disappear. She will still be able to reach clitoral and G-spot orgasm, maybe not every time, but it might take longer foreplay and lots of lube. Orgasms will not be like before, without uterus contractions they are shorter and shallower. Sometimes pelvic radiation causes vaginal burns and pain with intercouse. You might want to ask her radiologist about using vaginal dilators during and after radiation. Cancer diagnosis, chemo, radiation and surgery, all may cause depression, fatigue and lower / absent libido in some but not all women.

What will really happen is pretty unpredictable and depends on Michelle's overall physical, mental and emotional status. I suspect that this issue will quickly stop being a priority for her once she starts treatment. Let her take the lead and she will tell you when she is again ready for vaginal intercourse. And obviously there are other ways to be sexual until she heals and gets used to the "new normal".

Having said that it is fully possible to maintain active sex life during chemo and after hysterectomy. I did. Not quite as satisfying as before cancer, but active. However I have not had radiation.

nevadavox
Posts: 3
Joined: Apr 2013

Dear Alexandra ~

Thank you for your helpful (and fast) response! Michelle and I really appreciate any illumination we can get on the subject, and it means a lo to hear from others out there who have gone through it and are willing to talk about it. She is (only a little) heartened to learn that orgasm is still possible, even if shallower, as you say. I am not putting any agenda on her with this -- it's more about what she's afraid of losing, and I don't blame her.

Thank you also for the link. This is a great community, and we're grateful for it.

jazzy1's picture
jazzy1
Posts: 1385
Joined: Mar 2010

Sorry to hear about the rather large tumor.  Wow how large is it?  Sure be nice to get out during the hysterectomy, but thankfully there are alternatives to shrink it, as with radiation..  

I as well was diagnosed '09 with stage 3c MMMT cancer, found in 1 pelvic lymph node. I had chemo and 33 rounds of pelvic radiation.  Unfortunately, it was very difficult for me in terms of my bowels and intestines.  Today still dealing with issues on certain foods that I cannot eat or have side affects.  Radiation will zap that tumor and shrink it, but as with anything related to treatments there are side affects or changes in our bodily makeup.  I was given a dilator to use 3x/week, which I'm not as good with over last year.  It will keep this area open and espeically important, accessable for doc when doing exams.  

When we go thru the change of life -- menopause -- it does tend to dry up that area, therefore, lubricants are necessary.  I use a more natural one with no hormones (which many over the counters have this ingredient) as my cancer is hormone receptive.  Everything else with my sex life in this area is pretty normal.

I'd ask the doc many questions on side affects and if he'd suggest a dilator and recommend a lubricant.  In the scheme of things, the best thing for your partner, reduce that darn tumor ---- the other things will fall into place.  

 Best to you both,

Jan

txtrisha55's picture
txtrisha55
Posts: 684
Joined: Apr 2011

Knowing that she has someone to go through this with her has to be a comfort.  I too have uterine carcinosarcoma/MMMT stage 3 and was found in one lynph node like jazzy1.  My treatment from my gyn onc dr was 6 treatments every 21 days of carbo/taxol chemo only.  I am 20 months out from last treatment and doing ok so far.  I had no radiation.  Since that is the case I cannot give advice on that.  However, I can offer my thought and prayers for the both of you.  trish

wendybru's picture
wendybru
Posts: 11
Joined: Jul 2016

My own experience has been awful, sorry to say.  I cannot put a happy face on this, sex seems over for me now, barring a miracle.  I am 62, had a happy hetero sex life with my husband until IIIA, hysterectomy, radiation and chemo.  Now I have a heavy vaginal discharge, burning pain, bleeding with dilator, extreme pain with any insertion.  Was not forewarned of any of this. If I was, I would have insisted on a clinical trial instead, despite their insistence on conventional treatment first.  My doctors have no solution, take the attitude I am lucky to be alive.  My advice would be take one treatment or the other, both together compound the problem. Chemo is less destructive to the vagina. I still feel slight orgasm after masturbation, but nothing like before. My husband is very understanding, but I know its hard on him, we both miss sex. Others have had better outcomes, not sure why, I was extremely healthy before all this.    Wendy

cmb's picture
cmb
Posts: 351
Joined: Jan 2018

Wendy,

I'm so sorry that your treatment has left you with such awful side effects. I haven't experienced the same problems as you have, but I only had external radiation, which may have made the difference.

I hope that another doctor will be able to help in ways that your current doctors don't seem able to do. But your post is an important one for other members to read as the potential side effects from radiation may be understated while deciding on treatment.

I know that my radiation oncologist described several possible short-term and long-term side effects, but frankly the extensive sexual problems you're experiencing weren't discussed.

For women like me, for whom radiation is a toss-up as to its overall effectiveness for my stage/type of cancer, the decision to undergo radiation or not may be strongly influenced by knowing the potential risks to a healthy sex life post treatment.

Thank you for sharing this important information during such a difficult time for you and your husband.

nuevobevo
Posts: 1
Joined: Jul 2018

Hi all,

I am brand new to this forum and grateful to find a space to share experiences and learn from one another.

I am stage 1B/high grade endo with 85% myometrial invasion and LVSI. I had total hysterctomy in Feb with resulting pathology neg for lymph involvement but positive for very rare giant cell component and majority of tumour made up of undifferient4ed cells. Currently on cycle 4 of carbo/taxol with 2 more to go. Radiation has been recommended but I want to wait til i get through the chemo to decide.

After much research I came across some compelling evidence for adding metformin to the chemo protocol. I now have a script from my GP -she was hesitant to give it to me with concern about over-stepping my oNcologist. Before I fill the script I will speak with my oncologist. However,I am at a major cancer centre and  my concern is that they are so "inside the box" of the carbotaxol protocol they dont support anything else. 

Would greatly appreciate hearing from anyone who has experience with metformin and endo and advice going forward.

cmb's picture
cmb
Posts: 351
Joined: Jan 2018

I'd like to suggest that you repost your question as a new discussion topic. I'm afraid that it may be overlooked here by those members who could answer your question since the thread title is so different than your question.

You can also search past discussions using the term "metformin" in the search boxes on the main page for this board. "Search by Keyword" will probably give you the greater number of hits. Metformin has been discussed quite often on this site.

 

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