I WANT MY MOJO BACK!
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Hello Gardencontessa, this is my first post on breastcancer.org but your writing touched me and I feel so bad for you. I have felt all that you are feeling but have not had the dreams they do sound awful!
I have now had three lots of lazer therapy. (Similar to Mona Lisa therapy but a different brand)Helped but still not good enough for full penetrate sex(: will go back for another in October.
I have now started after seeing a gynaecologist who specialises in oncology, my surgeon and my oncologist and all agree that vagifem is safe for me. It has taken a lot of heartache and soul searching to take the risk of vagifem but I have decided to trust the experts. I am only on day four but already it seems to be helping. I have also found that Yes is the best lubricant. I am also on replens and hyalofemme alternating. Sylk did not work for me at all. I do hope you find some solutions.
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Gardencontessa~ There needs to be more survivorship support in your life. There are therapists and gynecologists who specialize in oncology.
We all need more of this kind of help and the problem is, it's hard to find in rural areas. Are you isolated in that way?
Sex does matter.This is hard work. Please don't give up.
((Big hugs))
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Hi, Gardencontessa. I agree with gardengypsy. I don't know where you are, or what resources are available to you, but I feel your pain and feel myself slipping down the same path. Just last night for the first time sex was so painful - after tons of foreplay, after feeling like I'd missed the orgasm train several times, and then I was just needing for it to be over. And last year I was having multiple orgasms for the first time. Talk about feeling ripped off.
My MO is a sweet not native English speaking older gentleman, and it's worse than trying to talk to my dad about sex with him. But I just spent a week in the hospital and my MO there was a woman in her mid to late 40s like me. I talked to her about it and besides the whole patience speech, the hospital has a sex department. She called it something else, but basically that's what it boiled down to. I'm going to get a referral over there to at least see what it's about.
My fabulous toy came in and I took it for a whirl and it was like I -- missed the bus? It's like the record is skipping.
And I really, really should have more even more patience. After a week in the hospital and 3 weeks PFC -- but I spent too much time during chemo just fine. I don't want to give up. So, let's not give up. There has to be some answer out there.
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I keep reading the posts on this thread, and I thought of coming and saying what actually really helped me - besides the weight loss - getting back in the mood so to speak. I thought logically, as there are issues with my vagina that will need lots of care and "moisturizing" so to speak, why don't I try to get an arousal that would not involve the vagina. So I got one of those Venus butterflies and practically set a daily time when I would use it. Slowly slowly my body started to respond, and amazingly I started even getting "natural lubrication" if you get my drift. The next step was one of those "massagers" called "wanachi". Don't ask me why they call them massagers. I chose the type that looks like a question mark of sorts that has a very small penetrating part but a lot of stimulation in other areas. Again, I established a daily time of using it. Took a few months but I got as close to back to normal as possible.
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thanks Seachain! That info really helps
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Thanks, Seachain. I can see how daily . . . um, training? retraining? . . . would be something that would be helpful. It's like any other muscle.
I just recently even got one of those vagina weight lifting things - because in my 20s I could have vaginal orgasms. I had literally practiced at it in high school. I know, I know, . . . I lived in the country, I had nothing better to do I guess. But for whatever reason, probably lack of practice and not communicating with my partner at that time, I lost the ability to do it. I guess it's the same as what I was doing back then, only minus the teenage hormones. But I worked at it every day, lol. I thought maybe working on that would help with the other. I haven't started using it because of what seems like right now my paper thin chemo vagina?
I told DBF last night, saliva was not lube, and we were just going to have to start reaching in the drawer next to the bed and using some. My poor vagina is - now that my MO explained it, is just tearing or something and we'd probably have less blood if we used more lube. Hopefully. He was ok with that. He just doesn't know. He has been through menopause with his ex-wife, though, so this all isn't completely news.
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Frill, have you tried Astroglide? It works pretty well for me.
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Gardencontessa, I hear you. I find myself in the same situation. I know that I could figure out the mechanics, I have spoken to a gyno who does specialize in cancer related issues, and I have tried a number of various products for lubrication, but a big part of me just doesn't even want to try. I feel bad for my dh, he has been more than patient with the whole situation, but I know, as you said, it does matter to him. Please know that you are not alone having these feelings.
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dutchgirl, try my method. You got nothing to lose. I had absolutely no drive in the beginning, at all. But I dutifully did my 5 minutes "workout" with the toys daily. Slowly slowly it all came back. To be very honest, nowadays I very, very rarely need extra lubrication. I am pretty much the way I was before all this ordeal.
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VAGINAL MOISTURIZING WAS THE KEY FOR ME! I started Arimidex in March 2015 and was feeling dryness within a few months. Soon lubricants were not enough and sex was getting painful. I went to the ob/gyn but she did not have any suggestions that did not have estrogen. Sex was becoming less frequent because of the pain. My husband and I even waited two months hoping that mabey it was just soreness that would go away, but the pain was unbearable. I was getting desperate. I had a wonderful support RN that the hospital assigned to me when I had my lumpectomy so I called her. She told me I had to moisturize EVERY DAY and suggested Inserting a softgel vitamin E every evening when I want to bed. She also said I would have to continue to use lubricant EVERY TIME when we had sex. After only three days of using the vitamin E we tried having sex again and I could not believe the difference. There was slight pain in the beginning and then it was like the good old times were back! I have ordered the lubricant she suggested but have not got to try it yet. I found it on ebay. It is called "Good Clean Love" and is all organic. I am a believer that you have to keep trying and somewhere there is the right answer for you! I will post again with comments about the lubricant.
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I have been using seachain's method. I really think it's worth giving a try. I'm not having O's all over the place, but now maybe I can see it on the horizon rather than just getting a record skip. That may make absolutely no sense. It's like I'm getting closer, or maybe it's in my head, or fake it till you make it, idk. Based on previous experience, though, practice does work.
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Frill,
So glad it's working! Believe me, I did not have Os all over the place in the beginning either, but slowly slowly everything started coming back. As a piece of advice, in the beginning don't focus so much on the vaginal O, focus more on the clitoris O, until the mojo starts coming back, then you'll start getting some natural lubrication too.
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Anyone having "orgasm headaches"? My chemo doc sent me a web md page after i asked her about it. I don't think that she read page 2 where it mentioned strokes. I never had any such thing prior to cancer treatment. Would love to hear what anyone has to say about this topic.
On the lubrication front, by the time i am lubed enough for penetration, im too slick for my husband (sometimes). Any ideas?On the lubrication front, by the time i am lubed enough for penetration, im too slick for my husband (sometimes).
Dying to hear about the headaches, though. It's putting a crimp in my "practicing." Im afraid they'll find me dead in bed with a vibrator...
Also, in regard to the too tight, painful, penetration, mine is getting better. Still hard to start, but better later in the act. Ive been using replens several times a week, "practicing," and lots of lube.
Best.
Leigh
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Leigh, maybe you should try a muscle relaxer before doing it. A lot of times we tense due to expecting pain, and usually in that position it will be the neck muscles that tense, so you might be getting a tension headache. Taking a muscle relaxer about half an hour before doing anything, I would imagine it can do only good - as it would also relax the vaginal muscles thus allowing a less painful penetration.
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Mod test
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Leigh, I've always had orgasm headaches - not every time, but I get them. I don't know about it starting up since treatment, but my initial thought would be something along the lines of what Seachain is saying. Maybe you're tensing up more now in an effort to "get there"? I'm going by memory as to what causes those types of headaches, but it's something with blood flow to the brain. Drats, I was going to say to try taking an aspirin before practice, but it you're in treatment, I'm assuming all those headache reducing, blood thinning, flow increasing meds are going to be off limits.
I just left to go out of town for a week and gosh darnit I left my vibrator at home. I looked at the drawer right before I left and meant to pack it and then got distracted. ARGH. But I left all of my clothes on the bed, too, so I guess I have bigger fish to fry. Last time I left my makeup bag, which sucked because now I have to put on lashes and eyebrows. Clothes, seriously???????
One other thing I've found helpful in the lubrication department...or two things. Coconut oil is the bomb diggity. I love that it's sort of half solid, which leads me to the big helpful thing. I think it's way better when I'm in charge of the lube rather than DBF. I will have to say I have never had hangups about sex, but dealing with lube - so weird, but I never had to mess with it, then as it became more and more required, the less I wanted to even touch it. But this last, probably month, when I thought I was going to cry when we were starting to have sex, and the whole realization that "spit is not lube" came to me, I had to come to grips with it. And DBF wasn't reaching for it often enough, or was trying to get me to get wet, or using saliva, or whatever. That's how coconut oil is so wonderful. If I just insert a small bit of it before bed, it's enough. I don't wind up a lube covered mess. It's inside, and melts. If I need it, it's there and ready, if I don't, I'm moisturizing. AND - omg, I just realized, this time when I was home, I did not wind up a bloody mess after sex, either. So the coconut oil has been magic for my tender insides.
Lol - maybe I can Amazon Prime a friend here. I mean, I just don't want to not be practicing!!!!!!!
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Can you please tell what kind of coconut oil do you use? I have an organic unrefined coconut oi. It says on a jar perfect for skin and hair.
I also have some coconut oil that we use for food. So, which one is it?
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When I get home I will take a picture of the front. I think mine said it was for both.
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viktoryak: Also, if I forget......I go back home on Monday, so if you don't get a pic by Tuesday or so, PM me, reply to this post, something that will grab my attention. All I can remember is that it's in a clear sort of several inch high tub with a silver top and the label had blue writing and lots of blue on it. However, something my memory totally makes things up, even without chemo brain because on top of that I have traumatic brain injury. LOL!
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Viktoryak, the one you have is just fine.
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I had my appointment with the "Sexual Dysfunction Clinic" today. I was so excited. I thought I was going to get some treatment, some help. Thank God for this thread, because I would have just given up. Basically I was told that's it. No more orgasms, at least you still want to have sex. I don't know why my MO wasted my time and set this up, other than the woman I met with said my MO tends to send anyone who brings up sex to her.
She told me the hormone pills after rads will make it worse.
And I actually thought I might be getting closer last night.
I'm so, so angry.
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OMG I am so glad I found this thread...here I thought it was me, should've known better. I say all of the time that BC takes away everything feminine. Befor DX I had a great sex life & could get there no problem...F*** You Cancer! I thought I had no desire because. I gained the chemo 20 and feel like a sumo wrestler, was bald, have two turtle shells where my boobs used to be, oh yeah and have sparce eyelashes and minimal eyebrows. Why in the world would my 'hubby' want to have sex with me?!? But after reading this, I know I'm not alone so thank you yet again warrior sisters for having my back. Looks like tonight before bed I'm going to insert some coconut oil & tomorrow will start my practice makes perfect sessions.
Frill glad to see you on this thread girlfriend! Sea chain, thanks for the amazing advice, you really hit home with the body image, I so feel the same way 💕 Garden contessa & garden gypsy thank you ladies
Hope everyone has a fabulous week
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Frill,
I'm so sorry for what they told you at the Sexual Dysfunction Clinic!
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I forgot about this thread.....glad I found it again.
My marriage is suffering because of our sex life, or lack there of. My libido is gone, I mean just gone. Not only do I not want sex, I do not LIKE sex. DH has been very patient and understanding, but recently he's made comments that I know means he is frustrated. I used to love sex, but that is gone now. I'm dry, have UTI's, no breasts, overweight and I just simply feel terrible about myself.
When dh wants to do something I will usually give in, but that is typically not intercourse. IDK, I'm just kind of depressed about it to be honest. I'm only 42, dh is 43 and I know he misses sex. I'm also worried about him doing something else, but I can't let myself go there.
I started using Replens recently, the box says every 3 days but maybe I need to increase that because it hasn't helped all that much.
Chemo pretty much kicked me into menopause, but I also had a hysterectomy at the beginning of this year and am taking Femara and things have gone from bad to much much worse.
anyway, I appreciate the insights here. I'm going to increase the Replens and try to work up the courage to ask MO on the 24th about this.
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Try Astroglide. Tang: I didn't like Replens. Can you O?
Frill: Why no Os? You are still very early in your treatment. I couldn't have O's at that point either. I had my first one almost exactly a year after starting chemo. Don't give up! Tell me your story again?
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Takes lots and lots of effort to O, but it is possible.....at least last time I tried a month or so ago lol
are you saying astroglide as a daily thing?
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AAaarh! Frill, don't accept defeat. That woman is toxic. That clinic is bogus. They took your money and provided worse than no help. What happened to "first do no harm"? Please don't give up finding real help.
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I'm 37, single and been on zoladex and aromasin for a year now. I recently met someone and when we got down to doing the business I couldn't. I had the urge and thought I was naturally lubricated, and I used another lubricant on him and me, but it felt like my vagina had closed up. And it stung like hell. I don't want to even try again. I've been using a gel called Multigyn, to moisturise but it doesn't seem to be working. I tried Replens but find I get awful white gunky discharge. I'm amazed how I'm no longer able to have sex anymore. I'm from Ireland so would like to hear from women in Europe as to what products they use
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Ok I will share another one of my "secrets". About the body image. What really really helped me with it was losing weight. It was a horrible process, I had everything against me, impossibility of exercising, age, chemopause, having had my thyroid burned out by radioactive iodine, etc. I had tried many diets, including the "cabbage diet" and practically starving myself, and nothing worked. Then I decided on the low carb high fat (Atkins) diet. It worked. It is a diet that you have to be VERY careful to do it exactly, otherwise you'll fall off the wagon and actually gain more weight. But if you do it properly it will work. I didn't push for my weight to come off fast, as when you're 53-54 that will mean lots of flabby skin. So I did it pretty gradually and used lots of coconut oil to treat my skin and help it tighten back up. As I was losing weight I started to be able to exercise too. I first started walking, in the beginning it was 2-3 houses down the street, even with the pain-killers. it was like my muscles were nothing but blobs of jelly. Now I can walk with no problems for miles. You might want to give it a try. I also think that the diet being mainly fat and protein and lots and lots of water that helps with the muscles and skin restoration, and well, we're talking vaginal muscles and lining here, so it must be something there too. Here's a photo that can show you better than I can with words how the whole body-image game changed and made me actually able to look at myself in a better light, and be able to dare again to go for getting my mojo back. The before is at 191 lbs, the after is at 140 lbs - the weight that I am now at, still on a low carb diet but not strict, I eat fruit and veggies but stay away from sugar, most breads and pastas and starchy stuff.
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You look great Seachain!
*sigh* I know you are onto something about the weight, but right now for me it feels like such a huge hurtle. Thanks for the inspiration and the hope!!!
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