**Hi, I’m almost 5months from treatment. I had stage 2 and chemo and internal and external radiation. It’s my first time on here and just needing some support on the vaginal changes. I’m using the dilators and notice the shortening of vagina and tightness. It’s painful to use dilators I’ve used multiple sizes. I’m having bleeding while using. I’m also going to physical therapy once a week for pelvic floor treatment. And I’m still so discouraged and even heartbroken in the change of my vagina. I’ve had sex multiple times and it’s so different now and painful I usually end up in tears afterwards. I try to use dilators as much as I can but it’s depressing and I end up crying during and after. I wasn’t told this was going to happen before or during treatment so I’m now mentally trying to get through this and I guess I’m just reaching out to see if anyone can help?
If your having bleeding with dilator use you should try vaginal estrogen. Make sure your using lots of lube with the dilators too. I shortened up quite a bit too, I find sex & dilators uncomfortable as well . Luckily I’ve never had any bleeding but it just doesn’t feel great in there. I’m using the vaginal estrogen because my urethra & around my vaginal opening would get pretty raw , thankfully it helped a bit. It definitely gets sad not having the same vagina as before, I’ve definitely cried about it as well. Try to be as gentle as possible.
Hi Amandale and welcome
I second Rissag’s suggestions about vaginal oestrogen and using lots of lube.
Additionally it might be worth using a vibrator which can confer various benefits: I recommend the Jo Divine website for advice and products: https://www.jodivine.com/blogs/sexual-health/jo-divine-health-brochure
x
Hi Amandale,
I cannot relate more to your post! What you are experiencing is normal. I found it very difficult with the dilators and the physiological part of this especially following brachytherapy.
My advise is don’t push yourself too much with sex as what you have been though is a trauma and you need to allow yourself to heal not only physically but also emotionally.
I was struggling a lot and I attended some session with a psychologists. It helped a lot so if you have the option I would definitely recommend.
Regarding the spotting following the use of dilators is normal however if you have concerns it is worth asking your consultant.
Unfortunately following the treatment no one prepares you about how your body changes and it is a long journey to learn it again.
My advise would be use a lot of lubricant before and during intercourse.there are different brands that can help, you can check out SYLK and YES. I use YES moisturiser and helps.
I am 2.5 years post treatment and i can reassure you that it gets better so be strong and give it some time.
Xxx
Xxx
I appreciate everyone talking to about this topic. I’ve been so depressed lately. I’ve taken all your advice. I ordered a vibrator and it helps so much I got a heated on which is nice. I thank you all so much for helping me feel less alone in this.
Hello. I’m in the same position 8 years on. I was grade 2b and had the same treatment . Sex had never been the same since. I spoke with my dr a few years ago who gave me some virginal eastrogen which helps a tiny bit bit it will never be the same again . I avoid sex now as it’s to painfull for me. U did use dialators for a year after treatment but again was always painfull. I relate to all your concerns. I don’t think the menopause helped either . I’m 43 now and probley had sex a hand full of times in all them years due to this. My partner still thinks it’s him that’s the problem. Don’t think anyone understands unless they have had what we have had done. Xx
Hi Amandale, I’m 18 months post treatment and had stage 2b plus the same treatment. It honestly does get better, I wasn’t prepared at all for the side effects, I think we don’t get told pre treatment as they don’t want to scare us. The bleeding during sex and when using the dilator was very distressing. The vaginal HRT didn’t work for me. I did my own research mostly on USA sites and found that Vitamin A and E oils help heal the damaged tissues. I checked with my consultant and she agreed so I started using natural oils with the dilator every day. I know it’s difficult but I got in to a routine, using it in the bath is easier for me and more relaxing. Avoid the water based lubricants they just run out. I use yes oil based during sex. I also take a pain killer just prior to sex. I have found that using the dilator regularly with the oil has stopped the bleeding over the past 5 months. I really hope this helps. XX
They don’t tell you how it can impact your sexual health. I did question this while I was going through treatment and the specialist nurse said it was nothing to worry about. I’m not in pain but it’s shrunk length wise and I don’t feel like I have the muscles inside like I use to have. It’s numb if anything. I miss feeling pleasure like I use to, getting turned on like I use to and having no g spot and my clit is not as sensitive as it use to be. I keep telling myself it will get better. I still bleed for no reason (not cancer related) and clots come out. My NHS gyneoncologist tells me I’m making it up. My private gyn tells me that my NHS gyn is an idiot. My on hrt and it’s helped. I’m on testosterone as well and it’s improved. But I’m not how I use to be. Nowhere near.
Harvitt, I completely relate to your message. I was so upset with my radiation Dr and his nurses. His exact words to me before the treatment was “ there will be minimal discomfort with intercourse and as long as you have sex 2-3 times a week on a regular you will be just fine.” No stated how your vagina will close up if you don’t use a dilator and or have sex 2-3 times a week til after the fact. I went into at office 6weeks post treatment and lay into that Dr and nurse. For I am a nurse but I’m not in that speciality so I don’t know all the in’s and outs of it. And I know better than to google smh. My vagina is so much shorter now. My husband is a nice 8in and now I’m only can take maybe 4-5in and it feels like he’s hitting a wall and it’s so painful. If I would have known all this before hand like I should had I wouldn’t have done the internal treatment. I’m still having severe discharge like I did before being Dx to where I wear a pad constantly. The thought of having to use a dilator/vibrator for the rest of my life so my vagina doesn’t close up breaks my heart. I’m only 40 and I’m in the peak of my sexual life and this is awful. I will say after taking everyone’s advise the vibrator is much better.
I’m 44 too. I don’t know whether to be pleased or saddened that my husband isn’t 8in and it’s like a poke in a cave. Sex was always fantastic. My dr’s said that regardless of internal treatment the vagina issues still would have happened as the external beam does the most. I’m wondering if I need pelvic floor therapy as I have lost muscle tone on top of it. I had three c sections prior to cc so the tone was there. And just how can anyone with the hormones of a dead donkey want or need sex 2 to 3 times a week? I don’t. I use to. But not now. Plus, the stale cum and the lack of lubrication doesn’t smell great after.
I keep having to tell myself that life will get better. That it was this or probably death. I get a gynie and an oncology appointment every three months so I get poked and prodded as if I was a 18 to 30 week in the med. I get free prescriptions and time off work I don’t have to pay back for my medical appointments. The hrt has helped.thr testosterone has helped some what. It is early days for you. 5 months out the other side. The discharge will become less. It’s the tumor breaking down. Have you tried oil based and water based lub together eg you wear one and your husband wears the other. It adds to the slip and slide.
Hey all, really glad to have come across this thread.
I’m only two weeks post chem rad treatment and just starting to get my head around the idea of sex again.
I wanted to ask how soon after treatment did you start using dilators? And how long did you give yourself to heal before even attempting anything?
x
The week I finished. Not sex, well ok. I was so relieved it was over I ended up having sex. Gently. What stage using the dilators the same week. Slowly, gently.
Hey good to hear that you have completed your treatment. Hope you are feeling not too bad x
I’m really struggling with the dilators, I saw a pelvic floor physio and that helped, she taught me some breathing exercises to help to relax. I started using the dilators at 4 weeks but admit I did have a psychological barrier at first and somewhat still now. Finding the time and privacy is also difficult with two children and a husband in the house. As far as sex goes we tried but gave up for now mainly due to a feeling of tightness and stinging but also because each time we tried and it didn’t work out I felt like I had failed each time so just trying to take the pressure off for now.
Hope you continue to feel better x
Vaginal estrogen cream has been my game changer. It doesn’t work overnight. I used to bleed. It took 9 months for the estrogen cream to finally work its magic. I use my dilator every morning in the shower and I still do as part of my self care routine. I used YES moisturizing gel with it which you can get on prescription, it’s lovely stuff. You need to allow for time for getting your lady bits back. I remember using the dilator and thinking I will never be able to get to the biggest size, I just could it get it past the entrance and honestly thought I just wasn’t built that way. Never used anything like that in the past. But with the estrogen cream and daily dedication to self care I was able to use the largest size. It takes time. Maybe don’t worry about penis inside vagina at the moment, use hands for orgasms. I don’t know why vaginal estrogen cream isn’t standard treatment after the treatment we have had. It makes no sense. Anyway I hope that helps in someway.
Thank you for your response that did help. I went to my dr and she gave me vaginal valium which I haven’t tired yet. But apparently chills out your muscles in there so it’s less painful, I guess most of my pain is my muscles being tense. I use the dilators probably not as much as I should bc I get so upset everytime. The mental part of this is such a struggle. But I can use the largest size the circumference doesn’t seem to be an issue it the length I’m struggling with and breaking my heart. I can get about 4 1/2 inches in and that’s about it then I just hit a literally wall and it’s uncomfortable. But I keep telling myself to just keep using dilators and see if it gets longer again. But I’m definitely gonna call and have them order the estrogen as well and see how that works as well. Thank you!
Yes!! This is not struggle as well. I went to see a pelvic floor therapist as well and learned the breathing. But like I keep telling everyone everytime I use the dilators which is not as much as I should because I have a mental break down everytime. It breaks my heart that my vagina friend is broken and I can’t go as deep and sex doesn’t feel the same. But I have the worry in my head of my vagina closing shit which they keep telling me will happen if I don’t have sex or use dilators. It’s stressful. And trying to find the time with 4kids and work it’s hard to find that time to use them knowing it’s gonna put me in that mind space. But I’m staring therapy to help me with this mental state all this cancer treatment as left me at. And gonna try this vaginal Valium and estrogen cream. I’m too young to have a broken vagina and I’m gonna just keep trying to push through. But your post is 100% how I feel. Keep using them I know it’s gonna help and even if you cry when doing so we are strong we made it this far and this damn cancer is not gonna ruin our lives!! We got this!!
Suppose to say my struggle not , Not…
Hi, so I was so hard headed bc I didn’t want this cancer to change my life. Chemo and radiation was hell and stopped my life for months so once I was done they told me nothing in vagina for a month. Well I had sex 2 days later. It was painful but I pushed through. I started using dilators 4-6 weeks later and have struggled with them since. I’ve had sex as well but not as often as before bc it’s not the same and has shorten so much. Circumference wise doesn’t feel different but I do notice the adhesives that form if I don’t have sex or use dilators weeks and cause bleeding and pain when you break them up. I also have muscle pelvic floors tenderness that I try to work out with dilators and now my dr has given me vaginal Valium it was between that or CBD oil. Its purpose is to chill your vagina muscle out so you can stretch them out and hopefully be less painful. I still struggle 7 months later after treatment mainly with the mental part it’s so devastating to me that my vagina fells broke and I can’t go as deep and enjoy sex as usual and the dilators make me cry everytime bc I hate this is where I am. But therapy is something I think we all need we went through a traumatic life experience with all this cancer and now dealing with all this after affects. We need all the support we can get.
Sorry to hear you are having these issues. I hope you are getting support at home. I do remember going down a self hate rabbit hole with bleeding every time I used the dilator or having sex. It just reminded me of my tumour and the brachytherapy. It takes time to heal. I am back to living a full life. I never thought I was gonna get me back at one point. I some times think I fought cancer in recovery. It’s so tough and can feel really isolating.
