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

Angela_K said:

Hormones
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 said:

Yes some places do use it at the beginning
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

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 said:

to worry or not to worry!

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

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 said:

I hear you!

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

 

 

 

How come it is no longer beneficial?

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

torrance said:

Premarin

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

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

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!

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.