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sex after hysterectomy and chemo

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1586
Joined: Jun 2015

Ladies,

OK, this is personal and embarrassing but....

Had my fourth try at intercourse since my hysterectomy and I still hurt (a lot) and have slight bleeding afterwards.

I used the KY Jelly as directed. Doesn't seem to make a difference.

I'm 3 weeks out from chemo so I don't think that would cause this.

It has been 5 months since my surgery. Seems like that shouldn't be an issue either.

Now, I'm scheduled in 3 days for my first brachy. Yikes!

If anyone has input but you don't want to post to the world, please email me. I can't imagine this being the end of sex?

Thanks in advance.

Love and Hugs,

Cindi

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2675
Joined: Mar 2013

Cindi, I'm single and hope to have sex someday again!  Cool

I was told the only time the size of a woman's vagina would be affected would be after brachytherapy, and THEN - they give you a dialator to use, in addition to any sex you might have.  They will tell you to use the dialator 3 times a week but a dear warrior friend of ours, Jazzy Jan, said to use it EVERYDAY.  10 minutes, but everyday.

I'll always be honest with you all, it was hard at first, but it gets easier.  I sometimes have visits with the oncologist associated with my gyn onc's office and she said sex should not be a problem.  The dialator is for life, but that's ok. They come in different sizes and I was told most women use Medium.  My gyn onc said I should try a Large.  Holy cow!!!  I have gotten used to that and the nurse at his office and I laughed about it.  She said she has never seen any woman use the Large and that, "you're the woman".  Ha!  Gotta laugh sometimes.  

Now, as for the bleeding, I would suggest just calling the doctor's office and ask them about it.  I guarantee you they have heard it before and will be happy to help.  We are sexual beings and there is nothing to be ashamed of.  

We say "you can ask anything here", and we mean it!

Kaleena's picture
Kaleena
Posts: 1980
Joined: Nov 2009

I was originally told to use the dialator daily for 10 minutes or have intercourse at least 2x a week.  Was having problems - painful etc.

I eventually had enough and just gave it up  - my husband is a saint.  

 

 

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

Were any of you told to expect this before surgery?  I wasn't.  It wouldn't have changed the course of things, but I still would have liked to know.  

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

This was never mentioned as a side effect of surgery that I remember.  It wouldn't have changed anything for me, either.  Ironically, my BF had prostate surgery about a year ago, followed by radiation, so he has his own set of issues.  We are an interesting pair at this point!

 

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

back in October, when I had the appointment with radiologist #1, he did a brief internal exam and it was NOT comfortable at all.  He said there was already some stenosis.  From surgery, non-use, whatever.  Afterwards, I tried sticking a finger up there.  Yeah, kinda painful.  I have been using a Cool Water cone in the small size.  Very soft, self-lubing, and I have found that things have gotten better.  When I first started, anything down there just burned like heck.  Now, very little pain.  Might move up to the next size soon.

Also several years ago, after a "dry spell," when I first started having sex again, it was painful.  At that time, I used Vitamin E suppositories and they helped a lot.  That might be an option.  

Chris

 

 

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

It happened to me.  I had the surgery, chemo,brancytheropy(5) no one said a thing.  Husband was up for three times a week, but I couldn't even go once, the pain was unbeleable, bleeding and I had the extra two open heart surgerys to contend with.  The dialator was no good at all, husband wasn't happy, I sure wasn't happy about the pain.  I asked why I was different and she told me that the vigina is only 3-4 inches long moist anf flexable.  My surgery took two inches off for the cuff and sewing, the lack of hormones caused the dryness and unflexability, and the brackytheropy radiation burned the inside of the viagina to the point that all mucus membranes were dead.  So I have a two inch viagina that is not moist reguardless of the lubercants, and cannot streach, thus the pain and bleeding.  The last year and a half there has been no sex.  It has cost me my marriage of 46 years.  He told me the other day that he cared for me, but he no longer loved me since all this cancer could have been preventived.  I should have taken better care of myself.  If I die, it won't be from cancer, but a broken heart.  But I chose to live and do everything I could to completely kill the cancer.  Would I do it all over again....yes.  We still live in the same house, but he has no reguard for me because I did this to myself.  You ladies with husband/boyfriends that understand and support you...hang on to them.

Cindi, you know every one is different and you may be the luck one that it does get better for....I was not so lucky.  Best, Debra

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1586
Joined: Jun 2015

I remember your story and I'm so sorry that you have zero support. Not sure why anyone would think you can do anything to control getting cancer. Unrealistic expectations all the way around.

I read something a while back on this site for "alternative" options for sex that does not involve actual penetration. You might want to take a look at it. I am keeping the suggestions in the back of my mind in case.... But, from what you said a while back, he may  not be open to anything else.

You are very special. And, it truly is HIS LOSS with that attitude. I'm glad you are choosing to live and enjoy your kids and grandkids!

Stay Strong Debra.

Love and Hugs,

Cindi

 

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

How horrible to be told that you could have prevented cancer.   I also think it is very unfeeling for him to want sex when he knows that you are suffering through it.  Almost everyday I hear something that reaffirms how blessed I am to have the husband that I have.      47 years in February.  

We have solved the sex problem, by finding other ways to be intimate.  He understands how very tired I am, and I think he is afraid of hurting me.  We do a lot of cuddling.  Not ruling it out in the future, but not right now.  Lou Ann

EZLiving66's picture
EZLiving66
Posts: 1383
Joined: Oct 2015

This is where my husband and I are - cuddling.  Right now sex is the farthest thing from my mind and he is fine with that.  We'll be married 45 years in September and been together for 47.  He is the best thing that ever happened to me and I have never felt more loved and protected.  Our son was engaged on New Year's Eve and I know he's going to be a wonderful husband and father because he had a great role model.

Love,

Eldri

EZLiving66's picture
EZLiving66
Posts: 1383
Joined: Oct 2015

I'm so sorry, Debra.  How can your husband think this is somehow your fault?  That's just crazy!  I am lucky because I have never felt so loved and protected and it just breaks my heart you have to go through this alone.  (((Debra)))

Love,

Eldri

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

I happen to be married to a man who had never had an illness in his life!  His brother told me they all(his family) have superior genes!  You've heard the old song"Lord it,s hard to be Humble(when your perfect in everyway)?  Well, that the whole bunch of them!  I have dark times when I think I've wasted many years.  We were engaged right ofter my 15th birthday and married exactly two weeks after my 18th birthday, so I should have seen the  writting on the wall, but I was RAISED this way, I think I married my Daddy, just not as bad!

@ Annabellrose, I hope I explained it correctly.  I kept asking, and searching for answers and like you I was told it all looked good, all healed.  Well, yes, but forever altered. Healed, yes, the same,uhmmm, not even close!

I have had the very thought of the postrate cancer, God forgive me!  LOL!  I have to tell y'all a funny although CSN might boot me off.  I live across the road from an Ultra religious, Very, Very Pentacostal lady and have for years.  She spends a LOT of time praying for this or that.  She has a husband that makes mine look like a saint!  She told me that she was praying for her husbands,uhmm "member" to dry up and shrivel!  She came over the other day and told me that God had answered her prayer.  I wondered which one since she prays all the time.  She told me "God has shriveled up her husband manhood praise God"!  She was just pissed the He had taken 25 years to do it!  It was so comical, and shocking that a religious person would ask for such a thing....Now I kinda know!  LOL!

EZLiving66's picture
EZLiving66
Posts: 1383
Joined: Oct 2015

OMG, I was truly "laughing out loud" when I read that last paragraph of yours!!!  Especially that she had prayed for TWENTY FIVE years!!!  

I'm not religious, so I guess I would have just used a knife (I'm just kidding!!).

Love,

Eldri

Annabella Rose's picture
Annabella Rose
Posts: 59
Joined: Jan 2015

to me before. I have so much pain and achy ness even without sex. I kept asking my doctors why? He said he dosen't know why because when he did the internal exam every thing looked fine and was healed. I started to have this kind of pain from the brachatherpy. Five treatments. I would have liked an honest explanation why I am in so much pain even just trying the small dialalator. 

Thank you for explaining what has happened to my body.

Hybridspirits's picture
Hybridspirits
Posts: 209
Joined: Nov 2012

my gyno/oncologist is a woman is very open about this.  I can't recall what she suggested as an alterntaive to KY jelly.  But you could try the dialator for a little until the pain subisdes.  This has been recommended by my gyno.   I do know that with internal radiation you need to use the dialator or have sex at least 2 x a week or you can build up scar tissue and internals will be a problem. 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1586
Joined: Jun 2015

Thank you all for the responses! Burning is the correct description for the type of pain. Beyond any I have ever experienced.

And, NO! I was not told this could be an issue after surgery.

Chris - where do I get this Cool Water cone ? Never heard of it. Maybe I can do an on-line search?

I even thought about using an ice pack afterwards.

The burning is gone now but I'm still quite sore. Hopefully that will resolve before Thursday.

By the way, the paperwork I got from the Radiologist says to use the dialator EVERY day for 2 weeks then 2-3 Xs per week after that.  Let me just say that if it causes the same kind of pain, I'll never make it on a daily basis!

Love and Hugs,

Cindi

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

Yes, they have a website with more information.  http://www.coolwatercones.com/

You store the cone in the refrigerator so it is cold when you use it.

They send 2 day priority mail in discreet packaging.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1586
Joined: Jun 2015

Ordered! Great information on the site too.

Kaleena's picture
Kaleena
Posts: 1980
Joined: Nov 2009

judt for informational purposes if you use KY Jelly or other lubricants a day prior to your Pap smears if your doctors still do them (all my doctors did except my new one) that it can cause an abnormal result in the test.   Not always but that's a possibility so if it happens not to worry

Annabella Rose's picture
Annabella Rose
Posts: 59
Joined: Jan 2015

The internal exams are awful! It will be a year in April I believe since my last treatment and I stopped using the dilator about 2 months ago because the pain never got any better. Then at my office visit my doctor said to stop using the dilator because I was all healed inside so no need. I don't know who or what to believe in the medical field. I know since I stopped using the dilator I'm not aching in my verging and pelvic region as much. Sex is not even a thought at this point in my life.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1586
Joined: Jun 2015

I wonder if most of the doctors even understand what we are trying to describe.

I will say that my Radiologist is the first and only doctor that has tried to help. He is the warmest, kindest doctor I have ever had. I feel very fortunate for that. Even before I opted to go forward with the Brachy, he offered a prescription to help with my problem. I haven't tried it yet, but plan to after I get over all of this cancer treatment stuff. And, he uses a prescription level lidocaine that works great prior to my brachytherapy. I have had no pain with my first 3 treatments. (2 to go!)  I continue to question why our GYNs don't offer this prior to our exams. It is so easy to apply and could even be given to us to apply ahead of time.  I understand it may not be a viable option if a pap will be done. But, exams only - no excuse to hurt us. Sorry, I know I keep harping on this particular subject!

Really glad that your pain is getting better. Hopefully, it will go completely away before too long.

Love and Hugs,

Cindi

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

You ladies are wonderful!   After re-reading my post I can see where I come across as angry and negitive.  The last thing I want to do is discourage anyone from internal radiation!  I've tried all the "fix-it" things and perscription gels and for about three years they worked to an extent.  Sex was tollerable, but the last 18 months I guess the scar tissue just got worse, plus, I'm old! LOL!  I don't miss the sex(I was married at 18), and to tell the truth, I'd rather be cancer free.  It's just the tenderness and and my youth I miss!  Thank you all again!  Hugs to all of you!  Debra

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1586
Joined: Jun 2015

You did NOT come across as negative or angry. Just sad. And rightfullly so. I suspect many of us are mad for you however!

Hard to say whether my libido will ever come back.So much energy directed at treatments at the moment. But, I do still want the "connection" that intimacy provides. Like LouAnn said, there are other ways to get that. And, I'm lucky - my husband is very understanding and open to ideas. I wish that were true for you as well.

Love and Hugs,

Cindi

 

molimoli
Posts: 514
Joined: Aug 2014

Debra thanks for your honest post ,it's an insite into the other side of dealing with Cancer and selfish unsupporting spouse.Good thing you have 'shut shop' on him, because you are a wife doesn't mean that you have to accommodate unfeeling single focussed penis owners. You didn't cause your cancer ,it's a cop out  for him because of no fault of yours you are no longer able to support his third leg,so thats a reason for such treatment after so many years Smmh !!  Some men are worse on women psyche than the darn cancer itself.Do not re- open shop for such a customer, even if vagina urges you to. 

Thumbs up to the men here supporting their wives,  That's what better or worse means.some one should have told him.

You are so loved here Debra , enjoy life if only on your own my darling sister friend. Feel the hug. Moli.

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

   

I haven't laughed so hard in years!  I am litteraly laugh-crying right now!  Penis owners?  Third leg?  OMG that is rich!!! Nope the Vagina Shop is closed for business(gee, never thought I could make money off the darn thing!)  I think the thing that hurts me the most is that the 49 years we've been together as a couple  and the vows we took, like death do you part, didn't mean as much to him as it does to me.  That's just sad...and his lose.  Maybe it will right itsself, maybe it's not, who knows.  Life goes on!  I thank you for the Nuff love and the big lifting laugh!  I am saving this to re-read when I get down again!  Life is good Moli...God doesn't close one door if he doesn't at least open a window!  Love you girl!              

P.S.  I do not like cooked goose and you will NOT be one!  The world would be too dim without you in it!  Debra

 

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

Gotta remember that one.

molimoli
Posts: 514
Joined: Aug 2014

If you have a husband or a partner ,they like to have us believe we are the owners of that tool.So don't let on that we know better. Therefore hear it here and leave it here.LOL

Nuff love, Moli

molimoli
Posts: 514
Joined: Aug 2014

Deb. when I wrote that I was pissing mad and didn't see the 'funny' but now that you guys pointed it out even I am laughing. We are laughing with each other and that' a marvelous thing despite our situation,

I am grateful that you all allow me to be my hot-headed crazy self ,without being offended by my unfiltered voiced opinions .

I am pretending you are all beside me and I am doing a big group hug.  Keep the spirits intact, we will get through this , in the overall scheme of life this is a slippery hill but we are climbing, no giving up.The tears the pain the laughter ,they all have their purpose although we won't, don't, can't understand it , it is part and parcel of our current life.We must vow not to dedicate all our time to it.we can't turn back,or get back time. Lets live,ok.

Nuff Nuff love always to all of you. I care.

Moli.

Dim Would be to not have all of you out there, my treasured and appreciated sisters. Dim would be that. nuff said in this one sentence.

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

Loved the way you stated that,  I am one of the lucky ones as my husband is so understanding.  I have much to be thankful far.

molimoli
Posts: 514
Joined: Aug 2014

OOps! you too ? yes my sister lots to be thankful for. Happy to chase frowns.Happy that he is 'all that' I wish you many more years of knowing  to whom you can run.

To all the God picked husbands of my sisters on this board  Thank God for you. I am hugging. (it's ok gals ,it's ciber hugs,ok? )

Moli. 

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

would be ok, too.  They deserve it.  When I get annoyed with mine, I remind myself of that.

molimoli
Posts: 514
Joined: Aug 2014

AAW!! Connie your short, to the point and honest post just jolted tears out of me only because I  imagine that he doesn't know how you have responded. please tell him what you are telling us and do it often my darling all  humans need to know they are appreciated and valued and validated in a relationship.Tell him now .Tell him often.

That being said, even the husbands who prefers to be jerks deserves to be validated as such. Count to three, take deep breaths and tell them now

PS. only do this one if they are not missing a screw. No pun intended

 

I simply Love you all, having the ability to make me cry or laugh at will. Oh my glass is near the brim.

Moli.

pinky104
Posts: 574
Joined: Feb 2013

I so agree with Moli.  I think you should throw the guy out or move out if you can afford to and look for a man with erectile dysfunction (maybe even erectile dysfunction due to a history of prostate cancer so that you have the history of having had cancer in common).  If there are cancer survivor support groups in your area, you could try to find one there.  Even if he doesn't have ED, he might be more sympathetic to your situation because of his having had cancer.  Someone with ED might even be glad to find a woman who doesn't put performance pressure on him.

molimoli
Posts: 514
Joined: Aug 2014

Dearest  Pinky104 !!! Of Lord  I could go many places with this suggestion but I gotta know when to run, I am runnin-nnnning from this one, yes Siree Bob.

Hugging and loving but running. Moli.

 

 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1586
Joined: Jun 2015

You are hilarious.  I bet if Deb called him on it, he would go into complete panic mode at the thought of losing her.... hmmmm.....

DebraJo - Did you ever think your post would lead to this?! lol lol lol  Kind of reminds me of mine with the original Orajel discussion. One never knows where this wonderful band of ladies will end up.

Love and Hugs to all,

Cindi

molimoli
Posts: 514
Joined: Aug 2014

I still laugh at the orajel thing that took on a life of it's own ,you will be remembered for that gift of laughter my sister, did you have to replant that in my head now, LOL,LOL.

Moli

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1586
Joined: Jun 2015

Moli, you are right.... I am crazy.

AND, I laugh at my own jokes too!  lol

TAyers's picture
TAyers
Posts: 86
Joined: Aug 2012

Cindi,

When we first started after surgery , I would have some slight bleeding as well. It does eventually heal. My doctor recommended Astroglide and it is great, we never go without it. Sometimes even know if my husband and I aren't positioned a certain way it will be uncomfortable. After my brachytherapy and I healed for awhile. I used the dilators everyday. Or I would tell my husband it I would need stretched, lol. My libido is terrible, but his is not. He never once ever made me feel bad about anything,so I am blessed and will hang unto him. Any other questions don't hesitate. 

Tami

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1586
Joined: Jun 2015

Thanks very much for sharing your experience!

Seems like we all have similar stories...

I'll try the Astroglide. Great name, right?! lol

Love and Hugs,

Cindi

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

i remember others recommending it.  I think Alexandra was one.

Fayard's picture
Fayard
Posts: 436
Joined: May 2011

Hola,

I only had surgery and chemo, about 5 years ago, and I still have issues with sex. The dryness is the main cause of the problem. Because I am so dry now, it hurts when having intercourse. I use Aloe Cadabra lubricant gel, but it is still uncomfortable. While in treatment, I did not have sex for about a year. We now have sex, sometimes, every two weeks. My husband is a a sweet heart.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1586
Joined: Jun 2015

All - I appreciate everyone sharing their experiences and the suggestions for things to try.

Someday, they may come up with a better dryness solution for us. In the meantime, maybe I'll mix Astroglide and KY, if the Astro alone doesn't work. I'm not likely to be willing to try anything until after the brachy is finished and I do my "own thing first!" with the dialators. :-)

Moli - Only you could come up with a response like that! I am still laughing and I read your post an hour ago! You missed your calling my friend!

I continue to be grateful for this wonderful group of women.  It truly is a special gift to be able to ask anything and everything.

Love and Hugs,

Cindi

molimoli
Posts: 514
Joined: Aug 2014

Laughter is our anchor, it draws us back to life.If we could only beg or borrow some once a day it would cut into the pondering and give  our brain a 'think nothing' break. Glad I caused that today without even trying.

We are loving and hugging you back Cindi. Keep the smile on. Moli.

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

I think we should vote Moli in as our Resident Ray of Sunshine!   Thank you for the pissing mad also!  I have had a chip on my shoulder for waaaay too long.  I can't get back to age 15, or get rid of this extra 80 pounds, but by Gosh, I can still belly laugh, even at myself!  Thank You, Thank You, Thank You, Moli girl!  I feel soooo much better!  You are petter than Prozac and Xanax together!  Lol!  Debra

P.S. I think we "hijacked" a thread here(sorry ladies!), but oh so worth it for the joy of laughter!

molimoli
Posts: 514
Joined: Aug 2014

We are bouncing off of each other , as we feel the different spirits of each other, we feel the support , In our own different ways we embrace this sense of group sounding boards.  Our lives are different,maybe, but our hope for our selves is the same , therefore becomes the  bond, which becomes one hope for all.

Debra we will continue to shine as a group so that we can spot when each other's rays getting dim and flick the on switch for them so that we all stay shining in our own way, till 'then' If we maintain the group and each others lamps, dim or bright, What marvelous fulfillment we will feel at the downing of our sun. I am reaching on tippytoes for that fulfillment.

Our life on Earth is a cycle and so we should all do the best we can so someone somewhere will smile (NOT FROWN) when they remember us as we were before darkness came.

I am not religious but I have my beliefs from which I get my peace with life.

Moli.

Soup52's picture
Soup52
Posts: 903
Joined: Jan 2016

My husband is a saint. We haven't had sex in a long time. Way too painful! I just have one more internal radiation and that is very painful itself. My radiology oncologist has a terrible bedside manner so I get no sympathy from him.

Sandy3185's picture
Sandy3185
Posts: 228
Joined: Oct 2013

Soup52 that is really unacceptable! It is his responsibility to make sure that you are comfortable. There are things he can do to ensure that. I'm sure Cindi will be able to give you more information about that. My rad/onc was wonderful- he took the time to talk to me and answer all my questions, made sure I was comfortable every step of the way. I know you have only one treatment left (Thank God!) but please don't let him manhandle you! Demand he take your pain into account.  I hope his PA will be more sympathetic when it comes to giving you instructions for your aftercare.  Sandy

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1586
Joined: Jun 2015

Sandy is right! There is absolutely no reason for you to hurt with Brachy.

My rad/onc applied a prescription level lidocaine on my vaginal opening and inside too. He let that sit for about 5 minutes before he inserted the tube.

I had zero pain. And, believe me.... penetration was very painful for me without the lidocaine.

I seriously wish everyone could have a doctor that cares as much as this guy did/does.

Love and Hugs,

Cindi

Actiquser
Posts: 3
Joined: Oct 2016

Yes after surgery, chemo and radiotherapy and brachy therapy the vagina is much reduced in size and has no elasticity.

Even my oncologist will not attempt an internal examination. So thats an end of penetrative sex unfortunatly due to treatments. Fortunatly I had a very loving understanding partner but he died.

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