I WANT MY MOJO BACK!
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Lula,
I'm in Los Angeles - specifically the Pasadena area. I have Blue Shield of CA PPO, and I'm about to hit my yearly out of pocket max, so I'm trying to squeeze in every doctor visit, scan and surgery I can before the end of the year. 😁😁😁
Thanks again, Lula. You have been such a great resource for so many of us, especially on the DIEP flap threads.
Trish
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Bottom line on the DHEA is that there have not been enough studies to prove either way whether or not it is safe for us survivors. I was surprised that my team was so willing to prescribe it for me since I was ER/PR+ and taking AI's at the time. It's still so new. But for the short time I was on it, I consider it a miracle drug. The only downside I see to it is if your partner wanted to go down on you, it might taste nasty. So maybe refrain from it a day or two before? I didn't get that far so I don't know. I started out on a compound mixture from my clinic pharmacy just before Intrarosa became available. Someone here who posted they take it every other day might have the right idea. Even taking a little bit vs. none would help. And if I were stage 4 - would I take it? If I wasn't ER/PR+ ? Yes, yes, YES! It's a quality of life issue, but every woman has to be able to make an informed decision. Problem is, most docs aren't fully informed themselves. So again...you have to be your own advocate and weigh the risks and benefits.
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- Intrarosa 0.5% DHEA nightly vaginal suppository contains NO estrogen and is safe to use in women who have to avoid estrogen.
I found the above interesting statement by a doctor from the Cleveland Clinic on this website:https://speakingofwomenshealth.com/column/genitourinary-syndrome-of-menopause
Now I'm really confused. Is this website commercial? It looks commercial, sort of. But who is advertising what?
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Jaycee- I just read the article. It was quite fair balanced in almost every regard. If it had only discussed Intrarosa I would be skeptical but it discusses other options across the board for VVA which is what we're suffering from. The author does point out different treatments for different patient profiles too. It looks like it's a women's health online publication with providers as authors of the different columns/articles. I would say it's a legit article not a marketing piece. That's a pretty bold statement she makes on using Intrarosa in BC and I know the manufacturer isn't paying her to say it - they would be in court faster than you can say lawsuit. The FDA takes statements like that when made by a manufacturer or someone representing them VERY seriously and action is swift including pulling the medication from the market for false advertisement with additional fines in the billions of dollars. No pharma company wants to take that risk with today's FDA especially not a small company like the one making Intrarosa. As small as they are it would put them out of business quick. And the online publication is sponsored by Cleveland Clinic..
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I used the "ask a nurse" link in the article to ask my questions. I'll let you know if I hear anything back.
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Hi ladies, I sometimes stop by here for updates, what do you ladies do for the unspoken odor that comes with our situation? and do any of you ladies do bio-identical hormone therapy? where they match your personal hormonal make up by saliva. Any thoughts?
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First, someone here mentioned a bj grapefruit or something like that. Am I the only one who doesn't know what this is, or should I not even ask. As far as a lubricant, there is something called “Yes" and it has to be ordered on line. This works ok fine. My gyno prescribed Intrarosa suppositorylast month. She said it was safe to use. I don't think she knew I was triple neg or any status. So I hope it's ok. Am not supposed to have sex for a month so not yet sure how well it will work or not. My one month is up so I “should" test it.
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So I was intrigued about this mention of a grapefruit bj. I looked it up and found a tutorial and review. For those that are interested: https://www.bustle.com/articles/32156-does-the-grapefruit-blowjob-technique-work-i-tried-it-and-the-verdict-is
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That is the funniest article I've read in a long time! Thanks for looking that up, I was to chicken to. 🍊
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Okay. Still laughing. That would be fun if I had anything even remotely resembling a sex life. Sigh.
Trish
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Don't forget about those of us on meds that don't allow grapefruit. Might another citrus fruit work?
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Well dang on the grapefruit bj - those of us on Ibrance can't have grapefruit! DH will have to be happy with regular bj!😂 Alsoon the other lengthy medical journal article where they discuss lubricants, they missed an important natural one - oral sex! Works great for me and puts DH in the mood!
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Lula73, you come through for us again😂😂😂.
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I had my first treatment yesterday. I go back in six weeks for the second one. I already feel so much better... almost normal again.
Coach Vicky
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How many are recommended? Or is it a case by case basis?
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Hi coachvicky, why did you choose this procedure, how does it differ from the other ones out there?
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My GYN has been researching this for several years. He had talked with me about a similar procedure that another medical group in our city used. He also started me on the DHEA cream which I found little benefit from.
At my last annual, we discussed this procedure that he started a first with his staff and now offers to patients.
I will need at least three treatments due the estrogen blocker (Arimidex) that I daily take. After the first year, I don't know how many treatments that I will need as long as I am on Arimidex with 3 years and 7 months, some days to go.
I believe after the second treatment, I may be able to go off my daily diuretic. I can empty my bladder!
Before considering this, please do your research. Please note that this procedure is not FDA approved.
Coach Vicky
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CoachvickyThis is exciting, another avenue for you 😃
With little to no success for me, I would try this method!
Keep me posted!
Thanks,
Lamp
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Lamp,
It does feel like an internal and external sunburn for awhile and I feel almost normal again.
I will keep you posted.
Coach Vicky
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Hi All,
I had a lumpectomy to my right breast, with partial reconstruction to the left, back in February. I had a lymph node dissection in March. I had 8 rounds of chemo over the summer, and I had a bilateral mastectomy on August 9th. The plastic surgeon was able to put implants in on the same day. I hate the implants, or maybe I just need to get used to them, but that's a story for another day.
My husband has been over-the-top supportive, and has done things as far as bandages, wound care, hand holding, etc., etc.
I am so depressed about our sex life. It's early - I know. He is still into it. It's me. There are times during sex when I know he would squeeze my breasts or play with my nipples, and now, there are no nipples! The implants are smaller than my breasts were. I can barely feel anything. I am still bald from chemo. I have a little peach fuzz, but the thick wavy hair is gone. I just feel so bad about it all, and I feel even worse because like I said, he is still into it. On top of all that, I've been reading about people having vaginal dryness with hormone treatment! I just started Tamoxifen.
I don't know how to get over my self-consciousness (?), sadness (?) with my new 'less than' body.
Any words of wisdom Ladies?
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NotKathy63 (from a Kathy) read your post and it filled me with emotion, I just want to hug you. It’ll be o.k. Having a supportive husband is so helpful! I know I’m not the same and my husband is still attracted to me and easily turned on. True love! There is help for vaginal dryness and it may not be that bad for you. Our sexiest organ is the brain, plan a nice relaxing sexy evening with your DH. He loves you and wants to love you, let that love in! Your body is not less, you still deserve love, intimacy and affection. Once you get started you may surprise yourself and get into it as well. It does still feel good! Thinking of you and wishing you a fun sexy night (day) with your DH.0
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NotKathy63, my advice is communication, communication, communication! My husband and I tried to talk about the difficulties as temporary as much as possible. We also laughed a lot at the “difficulties". It does get better but it might not feel like it when you're in the worst of it so talking about the other side really helps. Knowing how each other feels and not letting insecurities or resentments build up is such a big part of the battle. Tamoxifen does have side effects but there is help for that as well:).Hang in there, it really does get better!!
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I just edited my last post to say It really DOES get better. Darn auto correct.
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Hi ladies,
Some great thoughts here. I am currently seeing a pelvic floor physiotherapist. I had seen a Gyn. First, who confirmed that I had “tone" in my vagina (tightening) and could benefit from this therapy. It's a combo of the physical with mental: learning exercises and how to self palpate to help the muscles relax. Mindfulness is a part of it too, of course. I'm just at the beginning of all this, meaning I've just started the pelvic floor relaxation work, and self palpation. Then there is using vaginal moisturizer frequently. Then there is the lube for sex. There is saying to yourself “I will not have sex if it's painful" so that the mind starts to realize over time that sex won't be painful. It's accepting that sex MAY be different forever and that intimacy can be many different things and not just penetration (as stated above). I use a vibrator EVERY TIME and am done comparing myself to how I think i should be. Having orgasms regularly helps lead to muscle relaxation, restoring some vaginal flexibility. I'm trying very hard not to give up on an intimate life; it's not fair to him and yet I need to honour the new me. I am trying to remove all expectations and be gentle on myself. Spend some time with myself, trying to do my exercises and stretch things, etc. I threw out two Lubes yesterday because they created that horrid burning feeling. I just share everything with my husband. I'll say “stop please" when something hurts, I'll tell him exactly what to do next to help, etc. It doesn't remotely look like Hollywood sex, but I'm attempting to reshape my “sexual vision" based on my present reality. I get that term from a book I'm reading called “sexual intelligence".
Does this sound like a lot of work? Ya, it really does and seems like it now. But I'm hopeful that if I keep up with my regimen (just like flossing my teeth and cleaning my face every night), I will form new habits and they will help.
It sure would be nice if there was a miracle cream or whatever, but there is not. So I'm putting some effort in. I don't want a sexless marriage. I've never had a huge sex drive and could easily go a month without thinking of it. But it's my marriage; it's our closeness, andhe wants that physical side. And once I put myself into the activity, I find myself warming up to it. And then it feeds my realatipnship...just knowing we both tried.
Just some random thoughts in case this resonates with anyone here...I'm 49 and would like to continue to get naked with my husband...;
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oh PoseyGirl! You are such an inspiration and write very well.
Yes, I think you have nailed how to make this work.
Vicky
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Nice “seeing” you, Vicky. I haven’t been on the TP thread in some time. How are you
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Nice hearing from you to PoseyGirl. There are so many newbies on the TripleP thread that I find myself backing off. It gets hard to read about their struggles.
I do well. I have accepted the minimal side effects from Arimidex and have an arsenal of exercises and mental gymnastics to fight them.
It is one day at a time.
Vicky
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I am heading out for my third Mona Lisa Touch treatment today! My gynecologist uses a numbing cream prior so there is little discomfort. This procedure has been a game changer and I am finally comfortable. I had severe vaginal atrophy during and after chemotherapy and now that I am on an antihormonal and had my ovaries removed, my condition worsened. I am glad to report that the Mona Lisa Touch has worked so far and I only had two treatments up until today. My treatments were spread out over a course of many months, though, due to my surgery and wanting to wait for the last one until after the oophorectomy. Besides that, I regularly use coconut oil twice a day and that seems to work. I hope this treatment is available long term. After today's treatment, I then go for treatments once a year. I'll check with the doctor to find out if it's just one treatment each year for me or more due to my history of BC.
This is such an important topic for BC patients. Hopefully, improvements and new products and treatments will continue to develop!!
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LillyDuff ... tell me about this coconut oil ... the kind from the grocery store? Where and how do you apply it? If this is too personal, please PM me. I am doing the Juliet Laser Treatment and vaginal expanders (those were a strange Amazon purchase, LOL).
Coach Vicky
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