A post treatment question for women

[LB10]

Hi,
This is such a private subject, it's hard for me to talk about, but here it goes. After radiation treatment there have been negative changes to my vagina. The narrowing, shortening, dryness. Normal intercourse with my husband is not possible and too painful. My last radiation treatment was in September. I was using the vaginal dilators that they gave me but had to stop as I had surgery in January. I'm finally healed enough to think about sex again but now things are even worse than before. Is there hope of this getting better? I started using a night time moisturizing cream so I'll see if that helps any. Of course I'm grateful to have a good chance of being cured but this makes me very sad. I can live with the neuropathy and even the colostomy but I would so like to not have to give up intimacy with my husband too. Has anyone been through this with improvement? Thank you.

[lauragb]

You might want to ask your gynecologist about getting some Estrace cream to use a couple of times a week. This really helps with being able to tolerate the dilators and work your way to intercourse. In addition, keep using the moisturizer.

Hope this helps. It is a very tough side effect.

[Peabody5422]

To say this is difficult for me to get into is an overstatement and really "redfaced" but I had the same problem. I got the item from the doctor and it did no good at all. Painful and just plain hard. But then I got a vibrator from a catalog on line and let me tell you to order that thing was over the top for me personally. But it is softer and easier to use and has helped me get back to no pain with my husband. I used to dread the thought just because it was so painful. Now it is even better than before the surgery, chemo and radiation as I was having dryness and pain prior to that as I am now 66. It does a better job of stimulation and lubication with the thing and what it stimulates physcially really has helped. Just give it a little time. I started out thinking I had nothing to loose and everything to gain. Hope this helps and good luck.

[kellywin]

I'm in the same boat. If I use the Estrace cream every other day, I can tolerate sex, if not, holy hell it feels like razor blades. Things were fine through radiation, and I had sex a lot during radiation to prevent potential damage, but I think it's now due to the menopause that radiation caused, it just doesn't want to stretch. My gyno won't prescribe hormones because of my family history of breast cancer, so it sucks. Between that and the hot flashes it's really hard. I actually have an appointment today with my gynocologist and I'm going to rant and rave again that he needs to do something.

So, let's just be brutally honest, I don't understand what a dialator is going to do that using my husband can't. Lol. Seriously. I don't have any desire to sit around and jam something up there. It hurts already, so I don't want to do it. What's the process supposed to be? Are you supposed to use it like every day? And for how long? Honestly, I have no sex drive anymore, so the thought of having to do this is not something I look forward to.

Anyone willing to share exactly what do to? Every day? For how long?

[LB10]

Thank you all for responding. I know this isn't easy to talk about. It sounds like there is hope , so thank you for that. I was half afraid to hear what people had to say. I guess my next step should be to go see my gyn. I haven't been there since I was diagnosed.

Peanut- thank you. I wasn't able to respond to your message, I think because I'm a new member.

I appreciate the support here on this forum. I so wish I knew about it a year ago.

[weisssoccermom]

I am so sorry you are going through this and more importantly, am so angry that your rad onc didn't talk to you BEFORE you began your treatments about ways to minimize these issues. Frankly, this is a topic that I am passionate about and many on this board will tell you that I have in many ways become an 'expert' at.

First of all, a moisturizer/lubricant will NOT solve your problems. You NEED to get on an estrogen based cream.. either Premarin or Estrace. Personally, I prefer Premarin cream because I have found it tends to work better than Estrace but either is better than nothing. The radiation has caused scar tissue in your vaginal canal and if you've had surgery before, you'll know that scar tissue needs to be 'stretched out'. Radiated tissue is very thick and not easily stretched....it is less elastic and the Premarin helps with this...something a moisturizer/lubricant will not accomplish. In addition, you have likely gone through menopause due to the radiation, and, if not, your estrogen levels have likely diminished because of the treatments. Less estrogen means less elasticity AND less lubrication......both problems that need to be addressed.

As for the dilators, again, without some estrogen based cream, dilators can only do so much. Kelly....to use the dilators effectively, it can take months....MONTHS to help stretch the tissue out. That is why rad oncs should instruct their patients to use them DURING their treatments (with Premarin) OR to have sex a few times a week. That way, you avoid having the scar tissue build up and by using the cream from the get go, you help keep that tissue from completely losing its elasticity. Once the scar tissue/adhesions do form, it is very difficult to stretch them out, try to get that tissue to once again become more 'elastic' and to accomplish all of this without extreme pain. Dilators come in a set....starting with the smallest which is approximately the size (diameter) of your little finger....and many women find that this is the only size that will comfortably fit. The idea is that you use that for a few weeks, and SLOWLY work your way up....staying at each new size for a few weeks....hopefully by the end without pain. Again, though, without an estrogen based cream.....no matter how much 'lubrication' one uses, it won't be successful. Some women resort to having their vaginal canals stretched and 'massaged' by special PT.....something I could personally never imagine doing. Remember that in addition to the scar tissue/adhesions, the radiation has caused the vaginal tissue to dry out and become thinner....also causing more pain...particularly during penetration. This is a life long problem and one that just won't go away when the tissue is 'stretched'. Just like with menopause, a woman who has undergone pelvic radiation will need to either have sex on a regular basis and/or use a dilator to help keep the vaginal canal open and patent. That same woman will also have to use an estrogen based cream (these are safer than oral estrogen.....less overall estrogen ends up in the patient and is only absorbed vaginally) on a regular basis. For me, Premarin only needs to be used 2-3 times a week to be effective.

I won't lie to you....many women just give up because the pain isn't worth it. While my original rad onc was a jerk, he did inform me of this side effect and because I had been on an anal cancer site, I knew about the things to do to avoid the problem right from the beginning. Studies out of Australia have shown that when women utilize the dilator/have sex during treatment and use an estrogen based cream, they suffer few problems and can lead a normal sex life with relative ease....compared to those who wait until after treatments and surgery. By then, the damage has been done and it is much harder to 'undo' the damage than it is to minimize it or avoid it from the very beginning.

[peanut_8]

Thank you all for responding. I know this isn't easy to talk about. It sounds like there is hope , so thank you for that. I was half afraid to hear what people had to say. I guess my next step should be to go see my gyn. I haven't been there since I was diagnosed.

Peanut- thank you. I wasn't able to respond to your message, I think because I'm a new member.

I appreciate the support here on this forum. I so wish I knew about it a year ago.

Once you get a few more posts under your belt, you will be able to use the PM function.

[kellywin]

Kelly....to use the dilators effectively, it can take months....MONTHS to help stretch the tissue out. That is why rad oncs should instruct their patients to use them DURING their treatments (with Premarin) OR to have sex a few times a week. That way, you avoid having the scar tissue build up and by using the cream from the get go, you help keep that tissue from completely losing its elasticity. Once the scar tissue/adhesions do form, it is very difficult to stretch them out, try to get that tissue to once again become more 'elastic' and to accomplish all of this without extreme pain. Dilators come in a set....starting with the smallest which is approximately the size (diameter) of your little finger....and many women find that this is the only size that will comfortably fit. The idea is that you use that for a few weeks, and SLOWLY work your way up....staying at each new size for a few weeks....hopefully by the end without pain. Again, though, without an estrogen based cream.....no matter how much 'lubrication' one uses, it won't be successful. Some women resort to having their vaginal canals stretched and 'massaged' by special PT.....something I could personally never imagine doing. Remember that in addition to the scar tissue/adhesions, the radiation has caused the vaginal tissue to dry out and become thinner....also causing more pain...particularly during penetration. This is a life long problem and one that just won't go away when the tissue is 'stretched'. Just like with menopause, a woman who has undergone pelvic radiation will need to either have sex on a regular basis and/or use a dilator to help keep the vaginal canal open and patent. That same woman will also have to use an estrogen based cream (these are safer than oral estrogen.....less overall estrogen ends up in the patient and is only absorbed vaginally) on a regular basis. For me, Premarin only needs to be used 2-3 times a week to be effective.

I won't lie to you....many women just give up because the pain isn't worth it. While my original rad onc was a jerk, he did inform me of this side effect and because I had been on an anal cancer site, I knew about the things to do to avoid the problem right from the beginning. Studies out of Australia have shown that when women utilize the dilator/have sex during treatment and use an estrogen based cream, they suffer few problems and can lead a normal sex life with relative ease....compared to those who wait until after treatments and surgery. By then, the damage has been done and it is much harder to 'undo' the damage than it is to minimize it or avoid it from the very beginning.

But these problems aren't just caused by radiation damage, they can be caused by menopause as well. My Radiation Doc did explain the whole thing and I had no issues during radiation or after and she even referred me to my gynocologist before treatment. But once menopause kicked in, totally different story. I don't have any scar tissue or damage (according to my gynocologist) and moisture doesn't seem to be a problem while using Estrace, so that leads me to believe that the problem is from the menopause. So I guess my question is, is the same protocol used for menopause issues?? Maybe I should try and switch to Premarin. My gynocologist suggested Physical therapy - no way in hell I'm doing that. I'll take a piece of wood to bed and bite down on that before I have a PT stretch me.

[weisssoccermom]

Yes, to some extent the same issues can be caused by menopause. The reduction in estrogen, regardless of the 'reason'...whether menopause occurred naturally or due to radiation.....causes the tissue to become thin, brittle and less elastic AND causes a dramatic decrease in lubrication. Fix one problem and it doesn't mean that the others will be 'fixed' either. A woman must 'fix' all of them.....and without the elasticity issue (which is where the Premarin come into play) being addressed, you can have all the moisture in the world, and it's not going to make sex less painful. Ok, think about it....your vaginal canal must 'stretch' to accommodate a man during sex and more importantly, will 'widen' to accommodate a child during birth.....so we know that the vaginal canal is quite capable of performing this task. I was once told to think of the vaginal canal as having lots of 'folds'.....when necessary, those 'folds' can open up...as in the case of sex and/or childbirth. IF, however, that tissue has lost it's 'elasticity'....it's ability to 'unfold' so to speak, then PAIN is quite evident...regardless of how much lubrication/moisture exists. That's why when the docs only address the 'lubrication' issue, it makes little difference. Premarin IS different from Estrace....particularly if you are using oral Estrace. Talk to your doctor about it...and remember that it isn't the same as taking systemic HRT.....only minute amounts of hormones are absorbed via the vaginal canal.

As for PT...there are some things that I also would be willing to do and that is NOT one of them. I can't even imagine the humiliation and degradation of having to have a PT 'stretch' that tissue. Maybe GYN's and PT's accept this as 'normal' but no way do I. The thought of the whole process is just so 'out there' and disgusting......NO WAY!

[LB10]

Thank you for all the information. It is very helpful though a bit depressing. My rad onc did tell me about the potential of this happening but did not tell me there were things I could do to minimize it. They didn't even give me the dilators until after treatment was over. She also told me that the etiology of the pain was moisture related but that doesn't seem right. Everything that you said weisssoccermom makes sense to me. I made an appointment with my gyn today but it's not until may. I could not imagine going for PT. I don't even know what to say about that. I wonder if my oncologyst could give me a prescription for the estrogen cream. I feel stressed waiting until May. I don't want things to continue to deteriorate.

[Leeloo]

Hi LB,
You'll see from my signature that my troubles were of a different but related sort. I had instant menopause with my surgery. The Gyn doc was a gem, and prescribed HRT, yes it carries a risk of breast Ca, but it reduces risk of colon ca recurrence, as well as helping my brain fog and stopping the hot flushes, and for me that was more important. And yes, both oeastrogen cream and HRT helped "down below".

I had a physio for pelvic prolapse, seeing her was less embarrassing than going for a smear test, so I would recommend giving a physio a try if you can get one that specialises in Gyn issues. Even just getting good advice on exercises that will stimulate internal healing and muscle control may be of some help. I thought I would be very uncomfortable with the examination, however it was not as bad as I expected. My mental embarrassment was worse than the event and now that is in the past.

I know my situation is different from yours, but I do think there is some hope and help out there. Can your primary care doc prescribe the cream in the meantime?
Hope you get some comfort soon, Leeloo

[weisssoccermom]

Yes, your onc can Rx something like Premarin but I might also suggest you call your GP....particularly if you have a good relationship with him/her.

[teachpdx]

I was three years into menopause before I had my diagnosis. I had a complete hysterectomy along with my LAR and the changes that I've noticed afterwards is dramatic. I don't have anyone to have sex with and I can see the upper part of my vagina is white, not pink as it used to be. Don't think that's going to change color any time soon and I have to be extremely careful with all of my skin care down there. The smallest amount of bacteria and I end up with a sore. I hope some can get help with the cream. Personally I couldn't stand the mess. I don't really have an incentive.

I don't think things are hopeless, but there definitely needs to be more discussions with providers. My surgeon said it was OK for me to have sex at a certain point. Didn't have any discussion re pain, etc. Post treatment QOL is a huge issue.

[Nik Colon]

I just wanted to say, don't ever feel awkward asking anything here, after all, look at what the forum is about, lol. We are all adults and I'm pretty sure everyone here has had sex and this disease and treatments can really mess that up. Ask away!

[LB10]

Thanks all. I will see if my onc will give me a prescription since I can't see my gyn until may. I don't actually have a gp at this time. I was in the process of looking for one when I was diagnosed.