Can we talk about sex?
Hi Ladies,
I am approaching two years of survivorship next month. I was diagnosed at 32. Stage IIb, mutlifocal IDC, ErPr+ Her -, I choose a mastectomy with no reconstruction, Dose Dense AC and 12 weekly Taxol, followed by 25 rounds of chest wall rads. I am BCRA-, but my mom passed from mets in 2007.
I am cool with no recon, and it is not an issue for my hubby either. We had a 1 year old at the time, and I just wanted to be able to hold him and be back to "normal" after surgery.
Chemo put me into menopause, and my periods have not returned. I have been very candid with my MO and my OBGYN about my issues. I have pain every single time with penatration. Sometimes bleeding. I am just over it. A lot of times when this subject is brought up I get use plenty of lube, the more you try the better it will be. I am telling you, it is not for lack of trying or lube. My MO has me using a compounded DHEA vaginally daily, and my OB recommended Luvena (a more natural version of Replens) that I use every other day.
I can not be the only one going through this. When I do have the desire I want to be able to act on it! My hubby is awesome and we make do, but I am ready to have this part of my life back without pain.
Has anyone tried dialtors? Has anyone tried vaginal estrogen?
Thanks for sharing.
Comments
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my GYNOB recommended coconut oil.....on my husband and myself. It has helped tremendously. I am much older than you but thought I would pass it along.
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Hi politicomama. I just finished by 6th and final chemo treatment 3 weeks ago & am starting radiation next week. I had my last period 3 months ago. Not sure if it's coming back. I just started noticing pain during penetration a week ago, despite using Astroglide lube, so I'm also searching for a solution. I'm sure it'll get worse after I get put on Tamoxifen after I finish radiation. I am ER/PR+ like you. We shouldn't take anything with estrogen because that could help cancer cells grow back. I just picked up a jar of coconut oil at Whole Foods yesterday to try as a moisturizer, based on what I've read on other boards here. If you search "painful sex," "vaginal dryness," "vaginal atrophy," and "vaginal physical therapy," you'll find more info on this topic, like what others have tried & how well they work. Different people have luck with different things. I have an appointment with my MO Thursday, so I'm also going to ask her for help. Good luck!
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Search for "scream cream" here or find the "I want my mojo back" thread here. Lots of good advice and ideas from many women. Good luck.
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I was 39 at dx and am now 40..just finished chemo in June and Rads a week ago. So, I brought this subject up to my MO last week and she told me she thought it was mostly a psychological issue. I have shared with her my struggle with depression thru this and now she tells me this. I'm sure that plays some part in it, but not all.Anyway, I have read on this board that coconut oil is good and about the scream cream. Good luck
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tangandchris that makes me want to hit your MO. Blood and tearing is not psychological, it is real! Thanks for the ideas. I will share that I posted here, that I know our age plays a little different role in this. I will search those key words and see what I can come up with!
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Doctors need a good smack up side the head when it comes to how they respond to us about sexual issues. Sorry tangandchris about your experience. Here is my vent ( this happened to me several months back and I still fume when I think about it) - I was talking to one of my doctors about sexual issues I was having since my ooph, forced menopause, and these cancer drugs. This is the response I got - "Well, you just may need to fake it for your husband's sake." Seriously. I can not make crap like this up. Who responds to a patient that way?! Last time I saw that doc. Idiot.
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We fight for our lives and that includes our sex life.
I have been using coconut oil for over a year. In the past I have had some horrendous effects from commercial lubes like AstrolGlide. I swear a bottle went bad and caused chemical burns internally. Terrible experience so that began the search for a good lube.
We found organic, extra virgin coconut oil. It smells great, its antibacterial (no more UTI), and usually does not have to be reapplied. And it tastes great. Plainly speaking coconut oil transforms oral into a magical experience both ways (blushing now). I highly recommend it for skin care . I have been using it after rads treatments and so far it has reduced the redness and irritation better than any of the products recommended by the radiologist.The down side is that it will destroy condoms and can stain some linens.
However setting lubrication aside, female sexuality is not just about lubrication. We are not rusty locks that need oil so the key can fit . Our sexuality is directly linked to hormones. Both Tamox and AI effect estrogen of course and estrogen is the female "feel good" hormone. We are more sexually needy when estrogen is on the up-swing in the menstrual cycle. Post menopause women still have estrogen though no cycles and the estrogen is produced from the adrenal glands, fatty tissue and other.
Luckily testosterone which is the biggest sexual hormone is not effected by either Tamox or AI. I heard that some MO will RX a compound of low dose testosterone in a cream. I am doing more research.
So its apparent that painful intercourse, atrophy etc are all caused by the lack of estrogen. The MO told me that if a problem arises he can RX an estrogen cream. Being topical and a low dose of estrogen, blood tests show that only about 1% is absorbed into the blood stream. Women on Tamox and AI have about 10% circulating estrogen. So these creams increase it to approximately 11% which is minimal.
Part of the sadness and hopelessness I feel is the fear of losing our sex life. I may go down but I am going down fighting.
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Makes one wonder what goes on in his bedroom.
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I agree with Obxflygirl1 about the coconut oil. I have been having vaginal dryness for months and I stumbled up on this website while searching the internet for help. There were many posts with women who have used the coconut oil with success so I decided to give it a try. I can say that it worked great!!! I've only been using it for three days but it has made a world of difference. I use it daily!!!!! I have to say this, I never post anything online but I had to create an account to share my experience and to say thank you to all of those in front of me who have shared their experiences. I thought I was the only one with this issue.
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We ought to call ourselves the Coconut queens. -
Coconut Oil with be your friend. Use it , every day. Its lovely. -
Now every time I come across a woman that smells like coconut I will think of this!
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I like the ciconut oil, mainly for lubrication. And I also use a compounded estradiol, estriol, and testosterone cream periodically when I feel that things are drying up down there. I started out using it every day for a week, then twice a week as maintainence. But now I find that once a week works well for me. This was prescribed by my GYN, who had me get permission from my Med Onc. Onc wholeheartedly agreed that this is an important life issue!
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I have to smile because any female doctor who says that you should just lie back and take things for your husband's sake is probably no great shakes in this department!!! Nor is any male doctor who says anything similar. The two-minute wonder???? The other thing I need to mention is that being relaxed and excited makes the whole issue of penetration go much better. Good foreplay and a day or so of teasing do wonders. Because I have learned that what goes on in the mind is at least as important as what happens physically.
Guys can be trained, as I am learning with the new guy in my life. So we are both still learning what drives the other nearly insane with desire. I had someone else in my life while going through active treatment, and it made a huge difference in how I felt about myself. In fact, he made it his personal mission to make sure that I still felt feminine and desired. (He didn't have to work too hard at this.) Alas, he is no longer with us.
If it's been a while, you will probably be especially tender. I have noticed this. As I said to my new guy, I will go for help if I need to as still a bit tender down there. (Tough times for these parts as I have also done some long cycling events recently.) And I will put things on the table with my medical team (younger guy, very vigorous and physical....both of us, think at least half an hour). A two-minute wonder is not going to understand those of us who are used to much longer sessions in the sack. I would not hesitate to bring that up.
From my training for cycling and skiing events, I am expecting my tissues in that area to recover as well. In fact, I think they are much recovered since our first time. For the record, testosterone (fortunately, not estrogen) is the sex hormone in women too, so that might be worth getting checked for anyone where lack of desire is the problem. Most women use something these days if not in a monogamous relationship as condoms (plus lubricant) are needed for self-protection.
I wish everyone good luck. Because this is so important, and I find an essential part of my being. I have been through a major drought in my life, but it was during my marriage. It's amazing when you rediscover this aspect of yourself. So love, attention, and being relaxed make all the difference. It really does. - Claire
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Hi Ladies,
I have experienced the same pain. After my last chemo in August hasn't been the same. I have an inverted uterus and had experienced some pain before but now after chemo and being on Tamox it hurts even more every time. I was getting to the point where I didn't want to think about sex at all. We started using coconut oil after reading an article called 101 uses of coconut oil. It has helped with the initial penetration however the pain continues. Lately I feel like we don't need the coconut oil as I feel naturally lubricated. However I still experience some pain.
Do any of you have a lot of discharge? I feel like I have the fertile mucus, so weird.
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You really do need to see an Oncology GYN. Coconut oil cares for dryness (lovely stuff by the way). but it will do nothing for vaginal atrophy or if anything else is happening down there. Once diagnosed with BC we attribute every discomfort to BC but the reality is that there may be another issue that can be taken care of.
Ladies we are complicated down there.
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I am waiting to see one but it won't happen until the fall. I wonder if I should go a regular gyn
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I thought I should come back and update you guys. So I had a very long and candid talk with my GYN. We decided that the best bet to fix the problem was Estrace. I did the loading dose for two weeks, and then 1mg once per week after I am still using the DHEA on the other days. After even using this I was still having pain. So I broke down and ordered a dialator. After two weeks of use I was finally, for the first time in almost two years able to have penetration. I am a little sore the day after, but I wanted people to know there is hope. Doctors don't seem to realize what a huge qol issue this is.
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