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I had radiation to the pelvic area because of uterine cancer and 2 brachytherapy treatments,its been around 8 months and I am still having pain with intercourse and can only handle it with my husband and I on our sides him behind me can't seem to do it belly to belly is this the norm as I'm getting really fustrated.The doctor never gave me one of those dilators would one still help at this point.Any info would be appreciated
Cancer Taxol Surgery Hysterectomy Uterine cancer Radiation therapy Chemotherapy Menopause Pain Endometrial cancer Carboplatin Vaginal cancer
HI, I had pelvic radiation and chemo. I have this problem too. I talked to my radiologist's nurse. She gave me a dilator. Talk to your dr or nurse, they should be able to help you.
The downside is having to do this ever day. It is so annoying! I have no idea if I will have to do this for the rest of my life or if things will get better.
Stupid cancer.
Me too. Radiation is really, really tough on your vagina. I had stage III vaginal cancer and had a lot of radiation (including three rounds of brachytherapy). Here is my problem. My radiation oncologist told me to have sex, otherwise my vagina would atrophy or scarring could occur. And if I didn't have sex, then I would have to use the dialator (not very appealing). My husband wasn't too interested in sex (afraid??), so I started with the dialator. When we finally had sex, 5 months after diagnosis, it was REALLY painful (penetration, ejaculation and then the abrasions - although I did have an orgasm so the event was not entirely without merit). The doctor said keep trying. Right! It hurt like hell. And scared the living daylights out of my husband.
Well, here's where I am today (2 months later). I have surgical menopause (do you?). That alone can cause pain during sex, but I also had post radiation/surgical pain and found the "miracle" physical therapist, as I call him. I had limited range of motion on the right side and he did wonders for my hip. He also did some internal pelvic floor PT (make sure you have a specialist do this treatment). Huge improvement.
In addition to the PT, I also saw a "sex doctor." Also wonderful. If you can find a sexual medicine doctor in your area, he/she can help you in so many ways. So, not only did I have problems from the cancer treatments, but I was also having menopause problems. No one told me that my labia would shrink and that my lubication glands would turn off. My gyn onc did offer the patch if the hot flashes were too much, but I declined b/c I was worried about the cancer risk. The doc did not argue, just moved on. Now, knowing what I know, I would say to hell with the hot flashes, I want my sex life back. But I digress.
Side note: One of the biggest problems in the cancer care aftermarket is that once the specialists (onc and radiation folks) have cured your cancer, they don't have the bandwidth to help you with the recovery. Their jobs are really hard. They deal with death everyday and once you're cured, they are done. It is a big problem, especially for me since my cancer is rare and it is hard to find someone like me for support and advice. I am so glad I found this group.
So after a three hour doctor appointment, some lab work and a bunch of tests, the sex doctor, as I call him, prescribed some topical estrogen and a little testosterone and I just started treatment. No estrogen is not good for your sex life, too much can increase your cancer risk. This doctor does regular blood work to check your hormone levels.
Remember you may have a different problem/situation than me, so be sure to consult your doctor. And the sex doctor got approval from my gyn/onc. Google sexual medicine and see what you find. My doctor here in SD sees people from all over the country and wants to help women and men return to good sex. I just went to a seminar last night and the room was packed. He explained all the controversy over HRT and with good health care and management, you do not have to put yourself at risk.
For the first time, I feel like I have a doctor who listens. I have HOPE and that is a rare find in the cancer world.
Contact me directly for more information. Good luck.
Me too. Radiation is really, really tough on your vagina. I had stage III vaginal cancer and had a lot of radiation (including three rounds of brachytherapy). Here is my problem. My radiation oncologist told me to have sex, otherwise my vagina would atrophy or scarring could occur. And if I didn't have sex, then I would have to use the dialator (not very appealing). My husband wasn't too interested in sex (afraid??), so I started with the dialator. When we finally had sex, 5 months after diagnosis, it was REALLY painful (penetration, ejaculation and then the abrasions - although I did have an orgasm so the event was not entirely without merit). The doctor said keep trying. Right! It hurt like hell. And scared the living daylights out of my husband.
Well, here's where I am today (2 months later). I have surgical menopause (do you?). That alone can cause pain during sex, but I also had post radiation/surgical pain and found the "miracle" physical therapist, as I call him. I had limited range of motion on the right side and he did wonders for my hip. He also did some internal pelvic floor PT (make sure you have a specialist do this treatment). Huge improvement.
In addition to the PT, I also saw a "sex doctor." Also wonderful. If you can find a sexual medicine doctor in your area, he/she can help you in so many ways. So, not only did I have problems from the cancer treatments, but I was also having menopause problems. No one told me that my labia would shrink and that my lubication glands would turn off. My gyn onc did offer the patch if the hot flashes were too much, but I declined b/c I was worried about the cancer risk. The doc did not argue, just moved on. Now, knowing what I know, I would say to hell with the hot flashes, I want my sex life back. But I digress.
Side note: One of the biggest problems in the cancer care aftermarket is that once the specialists (onc and radiation folks) have cured your cancer, they don't have the bandwidth to help you with the recovery. Their jobs are really hard. They deal with death everyday and once you're cured, they are done. It is a big problem, especially for me since my cancer is rare and it is hard to find someone like me for support and advice. I am so glad I found this group.
So after a three hour doctor appointment, some lab work and a bunch of tests, the sex doctor, as I call him, prescribed some topical estrogen and a little testosterone and I just started treatment. No estrogen is not good for your sex life, too much can increase your cancer risk. This doctor does regular blood work to check your hormone levels.
Remember you may have a different problem/situation than me, so be sure to consult your doctor. And the sex doctor got approval from my gyn/onc. Google sexual medicine and see what you find. My doctor here in SD sees people from all over the country and wants to help women and men return to good sex. I just went to a seminar last night and the room was packed. He explained all the controversy over HRT and with good health care and management, you do not have to put yourself at risk.
For the first time, I feel like I have a doctor who listens. I have HOPE and that is a rare find in the cancer world.
Contact me directly for more information. Good luck.
Thanks for all the info the sex is getting some better I can't have any form of estrogen because of my type of cancer(leiomyosarcoma)I will ask for a dialator on my next visit in July We can't seem to get as deep a penetration about half way in is it to late for the dialator do you think? and cant seem to get far at all in the mission position.I want me sex life back to if I new it was going to be like this I wouldn't of went through with it.Thanks again for your response God Bless You Brenda
I have had total hyst and radiation tx due to uterine cancer and within 8 mos the cancer came back.
The doctors are talking about pelvic exentoration or just chemo. Has anyone been there: I have a 5y/o daughter and hubby.
Even though this post was 2008, it was the most informative I have found thus far. Why don't they tell you all this? Not that you would, most likely turn down the treatment, but it is awful to have all this crap happen. Do you have an email address to ask a few other questions? I dont want to put some of the things on this forum. Thank you and may you have continued healing.
i was diagnosed with endometrial cancer stage 1 in July 2007, i had complete hysterectomy with also my ovaries, fallopian tubes, cervix, oomentum, and some lymph nodes removed in August 2008. At that time my cancer was at stage 3b. I had 6 months of chemotherapy with taxol and carboplatin in Fall 2008 and Winter 2009. Then I had 3 radiation treatments called HDR (high dose radiation) vaginal brachytherapy in Winter 2009.
Note: When my use of vaginal dilators began, it was 9 months past my actual surgery. I would not have been recommended to use them until my body was healed up from the surgery. Be sure to check with your doctor about "when" to start using them, you would not want to injure yourself. There may be some unknown good reason that your doctor did NOT prescribe their use to you, so be sure to ask.
But if you were given the doctor's permission to resume sex... chances are, you would be able to use the dilator.
After radiation therapy, I was sent home with a set of vaginal dilators, in sizes small, medium, and large. I was told to use them daily for at least 15 minutes per day, by inserting them into the vagina as far as was comfortable, while lying down. I was told to use a whole bunch of water-based lubricant like K-Y gel. (I purchased some generic stuff from Wal-Mart, it works ok, it just dries out quicker than the K-Y gel... but for inserting the dilator it works perfectly.)
For me, i had to experiment with inserting them and finding the right angle etc. I found that i could insert mine up to about 1 inch from the end comfortably, if i practiced some relaxation techniques before attempting to insert the thing... and if while inserting it, i bent my knees and spread them apart very wide, then pressed down with my lower back (similar to what they make you do when you get a regular female physical... they are usually saying "ok, press down with your butt and lower back against the table" when trying to insert their instruments etc).
After the dilator is inserted, i keep my knees bent, with my feet on the bed, and i bring my knees together so that the pressure from my legs pressing together, kind of keeps the dilator in place. I try to be sure i have inserted the dilator as far as possible without it hurting (but so that i feel a little pressure). Ask your doctor how far they want you to insert yours.
While it is in, i can read or play games on my ipod touch. You could talk on the phone i think... but i don't because it feels weird to me. You could probably crochet or do all sorts of things during your 15 minutes. Try to make it enjoyable and a useful 15 minutes, in as many ways as you can. I like turning on some good relaxing music!
I also found that it is easy for me to insert the dilator while i'm kneeling. I usually don't insert it this way though, because then i end up needing to kneel for 15 minutes and i prefer lying on my back instead (it's difficult for me to shift over onto my back after i've got the dilator inserted... i prefer staying in one spot, after it is inside).
I was accustomed to my own body long before needing to use the dilator. Its use may seem awkward to you at first, but don't let that stop you. If you have a husband, ask for his help with inserting it very gently -- after all, he is used to inserting things there! Ask him to help guide your hand to the right spot and angle.
If you have no husband, or if he is unwilling or unable to help, just get a mirror for yourself, if you need to. Be gentle with yourself, and remember that you need to use lots of water-based lubricant, which will make it much easier and less painful for your first week or two of using the dilator. Don't give up.
(I have known of women who never used tampons and were literally frightened of trying to use the dilator. Don't be frightened. You made it through cancer treatment, you can make it through this daily maintenance too!)
If you have trouble getting your dilator inserted, ask your gynecologist, or his/her trusted nurse or assistant, to help you with it. Don't be afraid to ask for help. This is a very important thing!
It's really no different than inserting a tampon, but 2 things are different: The dilator is smooth so it is not as hard as inserting a tampon. But, the dilator may also look larger and longer than a tampon, so at first it SEEMS a bit scary! But it is NOT. And the goal is simply to use the dilator every day for however long your doctor said.
Yes, it is going to need to be done for the rest of your life. My radiation specialist said it would, at least. She said that scar tissue continues to form, and the dilator keeps things stretched out and provides some resistance against the scar tissue growth, at least that is the way it was described to me.
The dilator also helps to keep your vagina more elastic, if what they told me is correct. I will be daily using this thing for the rest of my life. I encourage you to do the same with yours and stay healthy.
I stopped using it for a week when i was sick, and i already could tell a big difference when i tried to use it again. i had bleeding from the vaginal walls having somewhat closed in tighter. I never want to stop using this again because...
Physical exams are important for us who are cancer survivors. We MUST have them. And in order for us to have them comfortably, our vaginas must stay in good shape. A dilator (or daily sex, if you have a husband etc) is the main way the doctors know which can help the vagina to stay in good shape.
One other note: if you experience bleeding after using the dilator, then be sure to let your doctor and radiation specialist know about it. They can tell you if it is normal or not. And what they want you to do about it, if anything.
I encourage you, all of you, if your doctor has recommended use of a dilator, by all means, use it. Don't give up on it. Don't get too busy for it. Don't neglect it. Good luck and all my best to you!
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