I WANT MY MOJO BACK!
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Hi, all. Hopefully not hijacking this thread, but can we talk about the external area and what to use for cleansing that doesn't cause itching and even bleeding? I keep asking OBGYN, and he says to eliminate all fragranced soap and detergent, rinse underwear a 2nd time, dry it without a fabric softener even unscented, and dry the pubic area with hair dryer, not a towel. I'm not noticing a lot of improvement from that regimen. I'm even trying the most basic, no frills, toilet paper. Sometimes my perineum spontaneously bleeds a bit. Skin feels raw and itchy all up and down. Help!!
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mary625,
There's lots of good info in the thread Everything No One Tells You About Cancer and Your Sex Life (in forum Sex & Relationship Matters).
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Mary: Try a little aquaphor on the area.
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Mary, - Cetaphil makes a liquid cleansing lotion that is very gentle. After showering an application of coconut oil helps, too. (but it's greasy, so a panty liner is a good idea.)
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By the way, we created a blog with your suggestions! Of course, we can always add or delete!
Take a look at our Blog posted today with your suggestions: Member tips for improving sexuality
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Hi mods, I noticed you left Monalisa Touch off the blog list.....
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I don't use any soap on the skin in the crotch area, little soap on the pubes and just water on the rest. Our bodies have a natural way of keeping clean in the vaginal area, no soap or scrubbing needed
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Nice blog moderator! I'm sure it will be appreciated by many, manyusers!
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Mary if I was bleeding I think I'd try lots of water and Vaseline or aquaphor initially. That's quite irritated. Then maybe graduate to a cleanser. I definitely had problems with all the body washes until I got Body Shop Shea shower cream which I received as a gift and yay, it didn't bother me.After every shower I apply some coconut oil.
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Thank you for posting this. My husband and I too had amazing sex life and i'm terrified that once i'm on treatment, which will include total removal of ovaries along with pill to supress other body chemicals being converted to estrogen, that I'll not only not want it but it will hurt when i do. Seems like all I hear are the horror stories and not many success stories, perhaps that is because they are too busy off having sex to keep posting?? Lol
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I should post this because it might give people hope. We have tried a couple of times since I finished treatment. The first time I couldn't um…finish. The second time I did! I was really happy. It didn't feel as good as before but it was a start. I was really worried I couldn't do it anymore. So I hope this gives you hope.
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Trvler - thank you, you did make a diff. Lying here next to DH in great hotel room. He's asleep and I am feeling badly because we didn't even bother to try. Morning will be different
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Hope it went well, BL!
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Hi!
For about a year I used the Estring ring......it did work but it was always uncomfortable for the first day and then didn't feel that great being removed....so....this may sound lame but it's working for me. Every morning I insert Astroglide and it lasts all day. I've been doing it now for about three months and have no issues. Just an alternative/suggestion if you want to give it a try!
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Without going through the entire thread, can I ask if there are single women in here trying to navigate this part of their lives while also undergoing ovarian suppression/oophorectomy? A lot of discussion and advice seems to center around existing relationships and testing out what does and doesn't work, with an existing partner. I felt good on Tamoxifen alone, but I feel like I've been neutered since I was put on Lupron. It has seemingly taken away my interest in dating whatsoever, and at least for me, it is not about body image or the psychological effects of cancer and its treatments (not that those things don't bother me).
I can't even begin to think about how I would "test the waters" feeling like this as a single person, and so, I've been in limbo for about a year and a half now. My other single friends are dating and having fun and I feel like I've had to throw that part of my life away. It makes me so sad.
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I've had BC for 9 years, including 2 recurrences. I have grieved deeply and for many years the loss of breast sensations first from 33 rounds of radiation, then 1 by 1,( 09 and 2014) they were removed. I try hard to pretend and to remember or recall how good arousal felt. My husband has never treated me differently.(he still fondles my chest,even!) But life is weird. I pleasure him and enjoy the fact that I can still give. The sexual union is important from how I believe in the oneness in marriage. I'm surprised I'm the first to mention grieving and just plain accepting that we can't fix it or get something back that is gone. I'm on Arimedex ; any hormone replacement is an invitation to cancer, so why would I do that? I've not talked about this before, so I thank you for listening. Hope this thread is still being used. I had experienced menopause and a huge drop in libido 5 or 6 years prior to BC. This effect of cancer is nothing but cruel.
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Prior to my diagnosis of the BC, I had gone through menopause and had flashes that were regular but activated aggressively with sexual arousal and somehow I decided that I lost my desire. I had always been sexual and loved the thought and the act with the love of my life. Funny, October 2012 we start watching a spot that never changes; in the meantime, in an attempt to get back to the sexual me (my hormones were flat lined) my naturopath prescribes bio id hormones since I would not take any prescribed medication for hormones. I was just beginning to get back what I thought I had lost when diagnosed with BC (hormone aggressive) November 2015. I look back on what has transpired and have decided that I will consciously remind myself of my feelings, thoughts, touches, and internal believes. I love my other half who happens to have a nickname of "MO" and not to be lost in translation I am "JO". I do want my MOJO back and come hell or high water I will work with belief, God's help and faith. BC cannot take that away from me nor can the growing old that I had blamed for my loss of interest and sexual response. Reading everyone's notes and hopes and thoughts makes me realize that it is only in my mind and I can express myself as I always have to the one I love.
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I skipped a few pages catching up, but here's what I have been doing.
I signed up for a study a year or so ago, that compared a couple of vaginal moisturizers and potentially some "equipment". I am in the trial but only on the mental component of it. The moisturizers were Luvena and Hyalo Gyn. I bought both on my own and decided to try them. Luvena burned like fire. I tried it for six times thinking that as things got better, it might hurt less. No. and inserting was messy. So quit that. I like Hyalo gyn a lot and use it for a while and then forget.
I gave my GYN a copy of the lidocaine study and he prescribed it and told me to let him know how it worked and he would try it with other patients. It is 5%. I use it like I did for my port, which he also recommended. I put some on a cotton ball and them just put it down there at the entrance without rubbing in for about 20 minutes. Numbs it right up. That helps a lot for the penetration pain which is the worst for me.
I have pretty thin tissue also, so have some tearing ocassionally, which hurts for a couple days. I use the scream cream to help libido, and it is definitely good. I gathered up all my courage when I waltzed in to my GYN with the ingredients for Scream Cream and told him I needed a script. He takes it and says "oh this is just a vasodilator" no problem. I think we need to rename the Scream Cream.
I tell my DH that he just has to give me 20 minutes notice, so not as much spontaneity but it works.
There is a chance that I will go off Arimidex at my five year mark depending on what the study results are from the reported at the ASCO conference. If there isn't a huge difference between 5 and ten in survivorship, he will let me stop.
Has anyone graduated, and did anything normalize in that area? Any shot of returning to some normalcy or is it just expected to stay the same?
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i tried to buy scream cream from the original company and they said they no longer made it with the vasco dilater which had gotten too expensive. Without that it was not going to be very effective. I asked my compounding pharmacist and he said it would be extremely expensive if he could even get the ingredient
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I think I paid $60 last time and they gave me a bunch of filled syringes. Each syringe has eanough for three or four use
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Hey, arby,
I am feeling that grief right now and so thanks for putting it out there.
It's helpful to have an on-line community, but some of these solutions sound really burdensome. I guess I need to go to the GYN to discuss how I can work through this.
Your husband sounds like a gem.
gardengypsy
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Thank you.
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I haven't read far back and I haven't been on this thread for quite some time (a couple or few years), so forgive me if this has been asked.....
Who has done The MonaLisa procedure? Experiences? Did it work? Any side effects? I've tried all sorts of things over the years, but still struggling with lack of libido as well as "Sahara desert" down below. Sex? What's that!!!
Thinking of doing the procedure, but want to hear what "sistahs" have to say. My DH read about it and sent me the links. He is really excited to see something that might help. I thought about asking my pop, but if she doesn't believe in it, I don't want to know! My DH said to ask one of my gf who is an MD. Need to think about it! Thought?
TIA, Karen
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Anyone try the cream "Intivar"? Thoughts? Would greatly appreciate any feedback. TI
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I don't know what to try first. My cancer was ER and PR positive, so I can't do anything hormonal. I'm all dry, though, and I feel like the top of my vagina is "locked up." Starting sex is painful, and if penetration is too deep, it's painful. My husband is one of the wonderful ones. I'm very lucky. We've tried half a dozen lubricants, but nothing really works. My doctor gave me some kind of prescription cream in applicators, very expensive, and with an increased risk of cancer recurrence. I haven't tried them yet. I'm scared to. Right now, I'm getting kind of raw in my breast area from the radiation, but I am having some sexual feelings (for the first time since diagnosis). Where do I start?
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hi, I'm still working on the missing libido thing, but have found great relief from the horrible fissures and dryness that had me literally cringing anytime anyone said "use it or lose it" with 2 things - of course, your mileage may vary, but if it can help anyone else I thought I'd mention my experience.
First off, it turns out that for me now, if I have a yeast infection my "only" symptom is fissures. My gyn said sometimes unusual symptoms like this happen when hormones are wacky. Turns out all the moisturizers / lube / whatever in the world wasn't going to heal them without treating the underlying infection.
Second, this awesome yellow stuff called "Rebecca's soothing vaginal salve" by a woman who's had bc herself. For me, it's been awesome for the now thinned, dry, sensitive skin. Her company is called "womens intimate solutions" and her packages come just saying the initials "wis" for anyone who's in a situation where they're sensitive to anyone seeing their mail.0 -
Hi, I too am struggling with very low libido since BC. My breasts were my primary source of initially getting aroused (foreplay) and now they are totally numb. Have not found a substitute foreplay that gets me in the mood. This has been doubled since our retirement and move out of home state, where my "safe" people and places were (I had PTSD and treatment for it before the BC occurred) I am feeling sad for both my husband and my self for our infrequent sexual relations. Not a pity-party over this, just reality.
What is the Mona Lisa procedure?
Leigh3232, For dryness, although it's probably been suggested by others, Astroglide seems to be the best lubricant I have found.
I haven't been on this board recently, but I would like some help with the foreplay issue very much. I know if I took the time I would probably find some good suggestions so if people want to reference an earlier post on this board (date and name) they made rather than taking the time to rewrite it, I would be most appreciative. Any other suggestions I would be grateful for as well! I am currently struggling with both abscessed teeth and a kidney stone so not enough energy right now to do my own search.
Hugs,
Peggy
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Hi PeggySull!
Take a look at the initial post, as there are a bunch of ideas, though I'm sure others have more to offer!!
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I didn't have hot flashes during chemo, and the dryness that appears is resolvable. My ability to climax...and this is the first place I've brought it up, doesn't have a quick fix. It started with FAC I think. I can barely have one myself, and it's not like with an anti-depressant. That's- the spirit is willing and the flesh is weak. This is just a meh half orgasm is all you get by yourself even? Wth?!
Has anyone else dealt with this? I'm sorry if it's tmi. I'm done with chemo, I finally get to go home. DBF probably already knows what's going on in our brief last two visits. It seriously feels like I went from 7 (I'm giving myself a break for Taxol because I wasn't exactly at peak performance but I could still have orgasms!) to 0. I'm 47 - does menopause kill your orgasms too?
I haven't started on that hormone stuff yet, the dr and I are still arguing over it.
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Frill, nothing here is TMI! This is the place to say these things! What you are experiencing is very common, and reported by SO MANY women! Don't be hard on yourself. Without getting overly personal, perhaps there are some things that you can use to provide greater stimulation. Take a look at the list in the first initial post (eg. "toys").
Other suggestions?
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