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Will I ever have sex again? I'm so scared

laylacat
Posts: 2
Joined: Dec 2012

My chemo and radiation will start after New Year and I am so scared. Not just the treatments themselves, but the vaginal aftereffects, shrinkage, using a dilator, and all of that. I got married in July and I am worried that we may never have sex again. I wonder if it's best, or even possible, to begin using the dilators right at the beginning of radiation to prevent shrinkage. Does anybody know about this?

mp327's picture
mp327
Posts: 2818
Joined: Jan 2010

I'm sorry your diagnosis has led you here. Hopefully, we can help you with your questions and support you during your treatment and afterwards.

As for the vaginal issues associated with pelvic radiation, these happen to most women who have undergone this treatment. However, having sex again post-treatment doesn't have to be impossible with regular use of a vaginal dilator and use of estrogen vaginal creams or tablets, along with OTC products, such as Replense. Most likely you'll find that lots of lubrication will be necessary and I would recommend a water-based type. I happen to use AstroGlide.

As for using a dilator at the beginning of treatment, you need to pose this question to your radiation doctor, as I'm not sure if it would have any adverse effect on your treatment. I do know that at MD Anderson in Houston at least some of the radiation oncologists who have treated patients for anal cancer have done so with a dilator inserted during each radiation session. You may want to ask your radiation doctor about this and if he/she is not familiar with this practice, perhaps a phone consult with one of the rad oncs at MDA would be a good idea before you begin your treatments.

I will just tell you that based on my own experience during treatment, I could not have used a dilator once I started having side effects. However, I did begin regularly using one about 2 weeks after treatment ended and have been doing so every since. I am now over 4 years post treatment.

I wish you all the best with your treatment and hope you'll keep us posted on how things are going for you. We are here to help you.

sephie's picture
sephie
Posts: 514
Joined: Apr 2009

sorry you are here ...many people have sex within a few months after tx is finished...i did not... i had a friend who was at MD Anderson after me who they placed the dilator inside the vagina while radiation tx was administered. they had not started this practice when i got my tx but seems to help... i did not start my dilator until 1 or 2 months after tx was finished ... your spouse will have to understand that you need to heal from the radiation before sex is possible but yes, it is possible. your vagina will stretch back out. and you will be ok... just another thing that you will learn to deal with after tx but it is doable. sephie

pamela_preib's picture
pamela_preib
Posts: 51
Joined: Nov 2012

I just had a crying jag in my husbands arms over this very thing. It's scarey to think about. I'm thinking a dilator is not going to feel very pleasant during treatment and you would start with that after healing completes???

Marynb
Posts: 1134
Joined: Aug 2012

You are both blessed to have loving spouses to go through this with. With time and patience, all will be well. Try to take one day at a time and do not think about every single worst case scenario. It is time to think positive. The chances of either one of you never having sex again is miniscule. Think about getting cured and healing. All will be well. Getting yourself all upset about something that will probably never happen is not helpful to your body. Time to think positive, healthy thoughts. It matters so much in your healing.

Hugs.

Angela_K
Posts: 370
Joined: Jan 2011

I hate that you are here, but happy you found us all at the same time. My ob/gyn told me early on that if I kept the sex up on a semi regular basis, there was no need for a dilator and actually, I have found that to be true. Of course, toward the end of treatment and a few weeks after, intercourse was out of the question but other types of intimacy weren't. Shrinkage takes a while, so I don't think it's necessary to start with the dilator until your body heals some after radiation but talk to your doctor about this. Mine said waiting was fine and she was right.

Be prepared to discover that your desire may be the biggest barrier, due to drastic changes in hormones. I encourage you to carefully read about artificial hormone creams, etc and make an informed decision on what's best for you. My husband and I have had to reinvent our sex life and now use "interesting" lubricants and extended foreplay and that has been fun. Honestly, it's not what it used to be for me primarily because of my lack of desire and some loss of feeling in the vaginal area. I've started bio-identical hormone replacement and that has helped. It's enjoyable and now reach orgasm during intercourse ~ but, meh, I can take it or leave it. I am going to start a little testosterone next month which I hope helps me get me get back that loving feeling, whoa, whoa, whoa that loving feeling . . .:) (And please understand that I addressed this topic rather candidly because it was such a big deal to me, too and I wish someone would have put my mind at ease and given me a heads-up on the hormone havoc.)

Take your time and try not to put too much pressure on yourself. Marynb is right in saying now is the time for positive, healthy thoughts! Stay relatively (vs obsessively) informed and be your own best advocate by being honest and direct with your health care provider and you will find your way!!! Blessings! Angela

Marynb
Posts: 1134
Joined: Aug 2012

Hi, I am wondering about what you said about hormones. I was post menopausal whenI went through treatment, so I didn't notice anything. What does treatment do to our bodies that may cause problems with hormone production? I had no idea.

Angela_K
Posts: 370
Joined: Jan 2011

For me, it was like surgical menopause. My doctor explained it was sudden loss of hormones (due to radiation "killing" ovary function)which can really send the body into chaos, where natural menopause is gradual and for most women, doesn't deplete the body completely of, say, estrogen. Following treatment I thought my fatigue, irritability, insomnia, hot flashes, complete loss of sexual desire . . .as partial side effects of treatment with some menopausal symptoms. After some research and conversations with doctors with knowledge in hormone therapy, I decided to try bio-identical hormones. (It was also discovered that my thyroid was WAY low.) I am currently on the highest dosage of thyroid that my body can handle without being symptomatic and am taking a tiny dose of bio ident estrogen and a larger dose of progesterone. The results have been remarkable. I haven't slept better in YEARS due to the progesterone. And I mean REAL sleep, not Ambien induced sleep. My mood has evened out. No hot flashes. Sexual function has improved. We're still tweaking (may increase thyroid again and start a tiny bit of testosterone.) I am a different person than I was just a few months ago. All for the better.

lizdeli's picture
lizdeli
Posts: 520
Joined: Jul 2009

I was treated at MD Anderson and they did use it from day one. I'll be honest with you, it was embarrassing, but I got used to it and it did help. If your oncologist is interested in reaching out, Dr. Christopher Crane or someone on his team might be a good point of reference. From the internet: Dr. Christopher H. Crane, director of the Resident Training and Fellowship Program, program director and section chief of the Gastrointestinal Section, associate medical director of the Multidisciplinary Gastrointestinal Center and professor with tenure in the Department of Radiation Oncology. If I recall correctly, he told me in 2009 that he was one of the first who thought of the concept.
Wishing you well,
Liz

torrance
Posts: 118
Joined: Jan 2012

Liz,

You are a trooper and a trail blazer!  I can't imagine how uncomfortable that must have been emtionally and physically?  Not bad enough we have to get up on that surf board and bare our backsides, but that too!  Did you ever in a MILLION years think you would saying that "you got used to it?"  LOL, I can relate.  I NEVER thought I would be discussing these topics openly, EVER!  I got so used to "things" I was a speaker at a conference where photos from pelvic exam under anesthesia were on a huge screen behind me.  Amazing what we can now do after enduring this treatment.

Love to you,

Joanne

torrance
Posts: 118
Joined: Jan 2012

Liz,

You are a trooper and a trail blazer!  I can't imagine how uncomfortable that must have been emtionally and physically?  Not bad enough we have to get up on that surf board and bare our backsides, but that too!  Did you ever in a MILLION years think you would saying that "you got used to it?"  LOL, I can relate.  I NEVER thought I would be discussing these topics openly, EVER!  I got so used to "things" I was a speaker at a conference where photos from pelvic exam under anesthesia were on a huge screen behind me.  Amazing what we can now do after enduring this treatment.

Love to you,

Joanne

torrance
Posts: 118
Joined: Jan 2012

Layla,

Worry only about what you can control right now.  Find out about what you don't know about and make an action plan from there.  Vaginal stenosis (narrowing/shrinkage/etc) after pelvic radiation is a very common side effect.  The degree of shrinkage depends on so many things that are out of your control.  As stated already, check with your rad onc about the use of dilators during treatment.  Mine did not recommend it during treatment because of the pain and discomfort it would cause.  When I completed treatment it was more than six months before my rad onc had me try dilators because my healing was going so very slowly.  I remember after the visit he came out and asked the MA to get me a dilator and to send the perscription to the pharmacy for premarin. The MA discreetly put the mysterious dilator in its box in a plain brown paper bag and sent me on my way.  I never opened the bag, didn't know what I would be seeing!  I waited until I got home, went in the bathroom to check out this mystery.  Once I saw it, I thought, WOW, I guess if I can use this it shouldn't be too bad!  Then I opened the premarin and checked out the applicator and thot, this IS going to be a breeze!  So that evening came and it was time to put these "therapeutic" tools to use.  OK, so that didn't happen, there was NO WAY I could even use the applicator, which about the size of your little finger.  So I contact my rad onc who advises me to just apply the cream to the external area twice a week until the next visit.  Ok, next visit, still can't use the applicator yet and he has me request a smaller dilator from the nurse, she gives me a size small.  This time I opened it and looked and told her that I couldn't even use the applicator and this size small was larger than it was.  She was clueless.....long story, I ended up contacting my OB/GYN and telling her the dilemma and she immediately offered a referral to a Pelvic Physical Therapist.  I'm thinking to myself, OMG what is that, and it sure doesn't sound like much fun!  After my consult with the PPT we had to come up with a plan.  Improvise and innovate were the key to treatment.  She had never dealt with anything quite so severe and there is NO protocol for treatment.  Anyways after over a year of treatment, things are hugely improved and almost back to normal as far as function goes.  I've dealt with multiple bouts of cellulitis, infection and tears and can proudly say it was all DOABLE.  I hope my story serves as inspiration, that even the worst case scenario can have hope.  Sorry if this is TMI.  If you want more detail, please feel free to ask.

Joanne

debrossi
Posts: 5
Joined: Jan 2013

First to Layla I would like to say how sorry I am that you are going through this and have so much worry.  Just make sure you start using a dilator as soon as possible after you finish treatment and if no-one mentions using one to you mention it to them.  I'll keep you in my prayers.

Joanne, I am so grateful to find your comment.  I was never given a dilator until 4 months after I finished treatment and the only reason I was told about using one was because I went to my gyno for something else and he had to force my vagina open as it was totally fused together.  Thankfully I went to him!! But, like you, I couldn't even get the smallest dilator in and it took a lot of persistence and pain.  I took a long time to get up to the next size but eventually I did.  I mentioned this to by surgeon when he was going to do a biopsy on me and he said he was stretch it while I was under, even though it was not his department lol.  After that I could finally get the largest dilator in but sex is definately not going to happen any time soon.  Maybe I should think about seeing a PPT, I've never heard of them.

 

torrance
Posts: 118
Joined: Jan 2012

debrossi,

 

So glad you found my post.  I am on a mission to try to help, encourage and educate, both patients and the medical field.  I can not speak highly enough for my PPT.  I am thrilled to say that I am just about to "graduate" treatment.  ( Can you see the program now as I march through a giant pelvic arch!)  Lucky for me, my ob/gyn booked my consult with the PPT.  When they realized the dilemma I had my first pelvic exam under anesthesia.  They had considered "cutting" some of the fused areas, but decided against it as, as probably know, this tissue does not and will not heal properly.  I have had set backs with two cases of cellulitis and another infection.  My skin still stretches and tears each time I use my dilator!  Can't imagine that this is just the way it goes, who would have ever thought!  But, it sure beats the alternatives.  I am no longer using the premarin as it is no longer beneficial.  Glad to be done with that.  So now I just split and tear and bleed at both openings.  Give your tissue plenty of time to heal, mine took forever.  Just touching the tissue was excruciating  and unbearable.  What a difference a year can make.  Please feel free to contact me if I can be of any further assistance or support.

 

Joanne

 

 

 

Phoebesnow
Posts: 447
Joined: Apr 2011

How come it is no longer beneficial?

 

i just had some fibroids emboli zed and I resumed using because of dryness and sores.

torrance
Posts: 118
Joined: Jan 2012

Apparently for us...the tissue is so damaged it will only "heal" to a certain point, the main point is to help increase the elasticity of the tissue.  Extended use has its risks, more so for an estrogen based cancer, but a risk for all.  I imagine there are other non hormone solutions for the dryness, I must use KY with my dilators daily.  Not sure about the sores.  Not sure this helps, but this is why I am no longer using it.  My ob/gyn had me taper off and had the PPT and myself monitor the tissue to see if I would "lose" any of the gains from using it.  I did not, so I am off of it for now.

 

Joanne

mp327's picture
mp327
Posts: 2818
Joined: Jan 2010

I have not tried this OTC product, but have heard that it does help.  You might want to give it a try.

svhagen
Posts: 2
Joined: Feb 2013

no information about the side effects from radiation.  I am reading your stories and am so glad that you have had some education and preparation about the future of your vagina and sex life. I only now found out that my onc radiologist should have prepared me for the eventual stenosis that has taken away my sex life. I was not told about a dilator or how important it is to keep the opening from developing scar tissue. The fact that this information was available and yet not shared with me is beyond belief to me now.  My stenosis has made my vagina very short. I believe I can stretch the opening further with a little effort, which is fine. But as far as I know, there is nothing I can do about the length. the stenosis basically covers the cervix and the sides of that area.  I did learn about a pelvic therapist a few months ago, I saw her a number of times but it did not help.  Maybe I should see if I can find others in that field who might have a different approach.  I'm so grateful I found this site. Joanne, I am sending thes message to you, as you seem to be very knowledgable and proactive. Anything that you or the other ladies can do to enlighten me would be so appreciated. Thank you all for sharing such intimate stories. I am grateful.

Sandy

ppaseka's picture
ppaseka
Posts: 66
Joined: Oct 2011

My wife 44 year old wife underwent 28 radiation treatments to pelvis for Bartholins Gland cancer. She had a partial vulvectomy. She had nine treatments of cisplatin and Xeloda. She made up her mind that cancer was not going to interfere with her sex life any more that it had to. She continued to have intercourse until the fourth week of radiation when it got to painful. She used her dilator daily when she could tolerate it. We started intercourse again three weeks after radiation ended. While it was not the most pleasurable, she ask me to try to help her maintain things. It has been a long 18 months for her but we are njoying a full and satisfing sexual relationship. She was so worried that she would lose sensation in the area due to surgery and radiation. That is not the case. Hang in there and hopefully things will work out for you.

cmccall's picture
cmccall
Posts: 2
Joined: Feb 2013

I am 2 years post treatment for anal cancer. None of my doctors warned me about the sexual side effects or the likliehood of going in to menapause. If I had known, I would have started using the dilators right away. However, with the help of the dilators and premarin cream, I have recently been able to have intercourse without pain. I felt like I was in my pretreatment body! The cream has been very helpful. 

I'm sorry you're going through this. I hope it helps to know you can heal!!!!

Best to you!

swordranch's picture
swordranch
Posts: 35
Joined: Feb 2013

I am a year in to treatments for lower rectal cancer and no doc has ever mentioned any sexual problems, but my husband is in hormone treatment for stge 4 prostate cancer as well, so maybe they thought it was not necessary.  I did start using a vibrator 1 month after surgery just so that I could see if I still had feeling but have not had intercourse so do not know how that will be.  I was sent to a pelvic physical therapist but that was to help with some other side effects that I was having during radiation, uncontrollable spasms and also to prepare my pelvic bed for the surgery that I had in July.

Hope that you come back full force and satisfactorily... but remember there are other ways...

TMI,

Laura

hjohnson13
Posts: 1
Joined: Sep 2012

When my husband was diagnosed with melanoma of the Anus that is one of the questions we asked. It it complicated but we had a break during chemo because white blood cells were low and the sensation came back. It may be hard while you are going through this but fight. 

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