Oncologist told me I could never have sex - I’m determined to prove him wrong!

For all the women on here that are scared of or haven't been able to have sex I'm going to document my learnings in the hope it helps some of you. This is an explicit post, so be warned!

I have radiation Proctitis (damage to rectum) and radiation colitis (damage to large colon) from my brachytherapy and/or external beam radiation. This damage causes your body to build fragile blood vessels to help heal, which break and bleed very easily. What does that mean? I have a GI bleed that causes severe anemia and requires IV iron transfusions. I believe the same thing has happened in my vagina, it just gets less "action" than my bowels so only bleeds with dialator or attempted intercourse.  I use my medium sized dialator twice a week, and don't have issue getting it in. When I attempted sex it is painful and I bleed A LOT so I have to stop after a couple minutes. I spoke to my gyn onc (who isn't the nicest person) and he said my vagina had shrunk in length and width and frankly he was surprised I could get anything up there and that vaginal sex would no longer be an option for me. I intend to prove him wrong!! Here's my plan of action so far:

- Vaginal estrogen pills. I insert a 10 mg pill twice a week. It's not too bad if I slather the insertion thing in lube. This is supposed to make my vaginal skin thicker and less likely to tear. 
- Replens vaginal moisturizer every 3 days. This is over the counter and I also slather the insertion thing in lube. 
- Physical therapist that helps women have sex. I never knew there was such a thing!! My primary doc told me about this. I have an appointment in a couple weeks so I'll let you know how it goes. 
- I'm also going to purchase a ring that goes over the penis that lessens the depth of penetration but supposedly the man doesn't notice the difference. We'll see if it works for my husband. Ohnut is one brand that sells these. I'm going to ask the physical therapist if she has a recommendation. 

Bottom line, I'm 43 and not ready to throw in the towel on vaginal sex just yet. Plus I dislike that doc and would love to prove him wrong. I'll keep everyone update on if and how anything has helped. Wish me luck!

(Also, I hope for those of you who can't have vaginal sex this isn't offensive. I may end up the same, but will feel much better if I try everything I can before I close that door.)

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Slicnik!! You go girl!!

I had my entire vagina removed and a new one built from my thigh. How dare he suggest you can't be repaired!!

All is good here in the marital department. You prove him wrong!

Karen x 

 

 Hi slicnik

 I've had a radical hysterectomy (top half or so of vagina removed) plus chemo-radio; both the surgical and chemo-radio  teams advised that if I wanted a penetrative sex life then I should continue to use dilators regularly.  The surgical team also offered me a referral for psycho-sexual counselling.  Your gyn onc seems to be on the extreme end of negative regarding the sex thing - sigh. Maybe it's another example of some oncologists having scant regard of the side effects of their treatments - in my case I felt they were somewhat casual about my lymphoedema.

 It's good that your primary doc has referred you to a Physical Therapist; this might be what I know as a Womens Health Physiotherapist.  I had a series of appointments with one, maybe a couple of years back, when I was having physical/psychological problems with dilators. The physio was very helpful; actually I got a bit emotional because I realised that I would have benefitted from meeting her, 10 or so years earlier, when I stopped attending for smear tests - partly because of menopause related vaginal changes. Like you, I'd never heard of this type of physio until recently - if you feel like sharing it'll be interesting to hear how you get on.

Hope all goes well

 x

Great post, interested to follow your progress. I'm due for first follow up/end results appt next week and have been having bleeding with dilators so am interested to find out what they find. Look forward to hearing how you get on x

Thanks Karen!! Your story was actually a big inspiration to me. I told my husband about it, how if your doctors were willing to go to those lengths for you, why would I just get written off? Which is what made me determined to work hard on my own (with the help of my primary doctor, who is more supportive). Thank you for being such an inspiration on this forum!

Thanks Jazza! The counselor is a good idea. I will ask about that. 
For your work with the dilators were you given different sizes? I was given one size, medium, and told to use it for 10 minutes twice a week for the rest of my life. I'll be interested in hearing what more the physical therapist recommends. 

Hi slicknic

I was given a set of four dilators and advised to work up to the biggest size I could manage; 5 minutes - 3 times a week.

x

Thank you for sharing. I will definitely be following. I am really hoping one day sex in a relationship is possible for me. I have been in remission for 3 years from chemorad and have not been intimate since before diagnosis. 
I am so surprised by others' dilator advice - my oncologist tells me to use it as much as possible, at least 3-4 times a week for 15 minutes at a time. 

Love your determination!

 

Xx

 

Hello Ladies! Here is my follow up and progress to date:

- Vaginal estrogen pill: At first I didn't think this was doing anything. Even worse, I was kind of feeling (thru my dilator use) that the estrogen might have been making the lower part of my vagina, the part that wasn't scar tissue, a bit thicker and tighter, which is not what I need right now!  But, a couple months into using it my vagina, which wasn't producing ANY lubrication for sex, I think might have produced a little, which if that's true would be awesome. So I'm going to keep using it and I'll let you all know if I feel there are definitive results. 
- Replens: I used this every 3 days for 6 weeks and did not feel it did anything. I think it's helpful if you feel pain or irritation from daily vaginal dryness, which I don't. It didn't seem to do anything for sex. And it would make a mess in my underwear. 
- Physical Therapist: This has been the best one yet! She gave me such good advice! Here it is:

     - Don't just put the dialator in there and leave it for 10 minutes. That's fine if you only want to get thru a pelvic exam but if I want to have sex I need to give my tissue a little "trauma" to toughen it up. To start I would turn the dialator clockwise 12 turns, then the other direction 12 turns. After I could do that I worked on moving the dialator in and out a little. And I've worked up to turning and moving it the full 10 minutes. At first there was bleeding but it's gotten to be a lot less over time. She also said I need to work up to a dialator that is the same girth as my husband. I was given the medium dialator so I ordered the medium plus and large sizes and will work my way up. I think all of this is going to make the biggest improvement. 
- My therapist told me that Ohnut is the best place to get the rings that go over the penis, to limit how deep the penis can go. They arrived today! You get 4 rings so you can stack them to where it's comfortable for you and supposedly the man doesn't lose any stimulation. I'll let you guys know what my husband thinks after we try them out! I am excited about this one too, given I can tell there's a good inch or so that I can't get inside me anymore. 

I'll keep the updates coming, but so far this feels really promising!

 

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Thank you so much for sharing your experience, this is so helpful for many ladies. So happy you are.getting on with this!

I have never heard of the advice to put a dilator in and leave for ten minutes. I am interested to.know who advised you that. They could do with some retraining!!

Go for the plunge...

Karen x 

Thanks for the update Slicknic smile

Maybe I'm not explaining it well. Both my gyn onc and my radiation once instructed me to insert the dialator all the way into my vagina, and keep it fully inserted for 10 minutes, twice a week. I'm in the US, so I wouldn't be surprised to hear you're getting better advice elsewhere. What did they tell you to do with yours?

Okay Ladies - Here's an update on the Ohnut rings. These. Are. AMAZING!!  I also purchased the Uberlube they sell, and I really like it. I had been using Slippery Stuff brand, which was fine for my dialator but would dry out during intercourse. The Ohnut kit comes with 4 connecting silicone rings. I decided to start with 2. They slide on easily, my husband said they don't bother him and he can't really feel them. The first time I used them I was able to have intercourse for a bit before it felt uncomfortable and I was bleeding a medium amount (not nearly as much as without the rings). I kept working with the dialator and the second time we tried I could have intercourse for as long as I wanted, with only a tiny spot of blood. It was great!! I was so scared about sex and having anything hit my cervix too hard, and my husband was scared of hurting me, and now with 2 rings on that fear is gone! I think as I work up to the next sized dialator I can even try one ring. But I'm very excited to share this success with you guys - I can have sex!

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Slicnik many congratulations. Your brave story will be very helpful to so many. I think you should put all this in writing and send it to your oncologist!! 

It also shows a great determination and positivity. I think you will have a great life and achieve many wonderful things!!

Karen x

 

 

Jeej!!! So happy for you!!! ❤

Slicknic, great news to hear. I'm glad you kept trying and didn't give up and had a positive outcome.

I am going to follow this post as I am terrified of precisely what has happened to you. I am inspired by you and know what direction to turn in case my vagina stops working how i'd like. 

I hope to hear more updates if you have more to share. 

Hello My Friends! Thank you all for the words of encouragement- they mean a lot to me. Here is the latest on my progress. 
- The next two sizes up dialators arrived, the medium plus and the large (I'm currently using the hard, white plastic medium size). I'm not gonna lie, after 1.5 years of the medium I was scared to go up in size. But I put double the usual amount of lube on the medium plus and gave it a try. Although it took longer to get it in, there was no pain and once it was in I was fine. So now I've been working on twisting it and moving it in and out. I'm not sure I need to go up to the large, the therapist said to go up to the size my husband is since my goal was intercourse, and medium plus is a match. But I'll see how I feel after I get used to the medium plus. Might be worth trying as I'm sure sex would be even easier. 
- I went down to just one ring on the OhNut. Bled a bit but not much and there was still not pain because my cervix isn't getting hit, which is awesome. I can go maybe 15 minutes before I'm just too sore to continue. But I've only tried this a few times so I'll keep working at it!

Overall I'm really happy because I've made progress. I gives me hope that things will continue to improve. I know it will never be back to normal, but I also know I'm going to be able to actually have a sex life which is huge!

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Hi Southofthelake - There are so many fears during treatment, and ability to have sex is definitely one of them! My reaction to radiation was rather extreme, and I don't think most women have the issues I've had, so hopefully you're in the majority and things work just fine afterwards. But if you're not there are definitely things to try and therapists to help (as I've learned) so don't get discouraged! And feel free to message me if you ever have any questions about my experience. 
Good luck with your treatment and recovery!