I WANT MY MOJO BACK!
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I was so scared after my mastectomy and recon. I had no choice but a mastectomy, but afterwards got so scared about what it would mean for exercising, wish I could remember the thread, its been a several months, but hearing you describe getting back into running and exercising with the expanders made me feel like I could get the important things in my life back. Can't thank you enough
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I know its a little off topic for the mojo thread, but I do feel better about how I look after exercising so the mojo is better too
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Marin-- you are my idol..I sure hope I will have the same results that you did!! I tried to do this before when the one I thought was The One cheated on me...but right after that guys sorta fell into my lap as it were...two of them were good candidates (not losers) but there was no chemistry on my side and/or I wasn't really ready yet after the bad breakup..there was one other one who I had some chemistry with (but who was a loser and the one that I just broke off with because he is basically just irresponsible)..so I thought about settling for him, he does love me and of course is begging for a second chance, says he'll change etcetc, but deep down I know that would totally be "settling" on my part.
This time I have more resolve to take a sabbatical and just cuddle up w Mr Big, haha! But I waver and get lonely sometimes...I still feel like on a Sat. night I'm a loser if I'm not out on some fantastic date or at least having fantastic sex with a hot guy...and at my age (soon to be 57) I aint getting any younger..so I worry about taking too much time "off"..but I'm really going to try..you have inspired me, once again.
I KNOW I should be putting all this energy into my career and housing search (hoping to buy a home soon)...rather than all this run-around with losers or guys that just aren't right for me...
wishing all of us BC sisters a holiday weekend filled with love, joy, and great mojo, whether with a partner or not!!
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kmmd and soccermom...thank you both for your kind words! All I can say is that this is what we do here...share our experiences in order to support and help one another. I can't begin to count the number of times the other women on this board have inspired me and given me hope, so I will always try to pay that forward.
One additional note, soccermom, about my post-bc dating experience. Although I got back into the game after a bit of a break and came back with the intent of finding a man who respected me and cared about me, my approach was that I would date whoever looked good and have no expectations of it turning into a romance. I decided to date men I met on websites like plentyoffish.com and try to just have a good time. In that way, I actually met some interesting guys and really did have a few enjoyable experiences. If I found the man to be a jerk in any way, I simply moved on and it wasn't a big deal. And then, as I've reported, I got lucky. But really, if I hadn't met P, I would still be exploring and having a good time. It's all about knowing that you're completely okay alone, but you truly appreciate and enjoy what a good man (or men
) can give you. Then again, some of that can be provided by Mr. Hitachi.....!~Marin
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Hi Ladies. Well, I've been using the Estrace cream for just over a week. I have to say... WHAT A MIRACLE!!!! We decided to give it a try to see where I'm at. OMG. We were like newly weds all weekend long. I had really forgotten how great good sex is. Anyway, if you are having any problems in this area, keep after your doctors. We really shouldn't have to beg for some quality of life. It took me years to convince my doctors I needed this and I'm so glad I didn't give up. I'm just damn near giddy. Exhausted, but giddy.
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So happy to hear that it worked for you Firni, and what a shame that you had to go through such hoops to get it. Quality of life is so important!
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So Firni, what's the game plan? Are your doctors monitoring your Estrodiol levels? Isn't the estrace cream over-the-counter or do you need a prescription? I'm thrilled you got such great results!!!
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Maybe more of our doctors should feel what we feel without the cream. They might be more agreeable to Rxing it. Especially the male docs. Altho, I do have to give my PCP pretty much all the credit for making this happen. If he hadn't called my Onc and told him I need this, I don't think Onc would have agreed to it with just me asking for it.
Texas, Estrace is an Rx. My Gyn got it for me. She said there is so little if any of the estrogen that crosses into the bloodstream she isn't worried about my levels with the cream. Besides, I am taking Tamoxifen so if any did cross and try to do bad things, the Tamoxifen should block it. I did start taking DIM which will help keep the good estrogen levels up and the bad ones down. You can get an Estriol cream that is made with wild yams without an RX. It's supposed to do the same thing as the Estroidol. It's a lot cheaper and because it's a natural plant based product there is no government control over it. Thus, you don't need an Rx. I might try that after this tube of Estrace is gone. Just because of the cost factor.
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Firni, I totally agree with what you're sayings. The docs are only too happy to come up with a new culprit that happens to be a daily factor in our lives that is something new that we can do without. Pardon me, but sex is not just for men!!!! And sexual relationships are a vital and necessary part of our relationships.Now they've decided that we can't even have wine anymore...Someone who is an expert on human biology once said that the safest bet to is to minimize *everything* that goes into our bodies, because anything you take in has to be filtered... just to show how you can take every thing to a ridiculous conclusion.I say..the focus of research should not just be on quantity of life, but quality, and it seems a little ridiculous that the only way we can find out how to improve the quality of the intimate aspects of our life is in our own self-constructed laboratory, right here at the mojo thread.0
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Firni way to go! Your post made me so happy. Good for you for fighting hard for what you needed. Now get back to the bedroom!0
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I've been reading a lot about testosterone cream and how it really helps women who have a problem with clitoral sensation and orgasms, as well as with getting back the desire for sex. This sounds like just what I need. I'm thinking it can't be any worse than allowing estrogen creams. I've tried estrace but it didn't really solve my problem. It does help with the dryness and atrophy, but I didn't find it to do much in the way of improving the libido itself or with the sensations.
Just wondering if anybody has ever used this and found it to be of benefit. And also if any Oncs have said yes to this. I asked my Gyn but she was scared about it. I see my Onc next month so will ask him.
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Well I wanted my fabulous libido back and so does my husband but oncologist and BS say "No" to testosterone, I believe it increases production of our estrogen(not sure how that works)...I am using Vagifem but it doesn't make me think about or want sex. It is so sad, I tried to tell my OB that my motto used to be If your not having sex everyday then your missing out on the best thing mother nature gave us! and orgasms are so sad too.
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I looked into testosterone cream awhile back. It looks like women should only use a 1% cream. You can buy it online without an Rx. Prices are around $60.00. From my symptoms I didn't think I needed the testosterone, but the estrogen. I would have bought the Etstriol online without an Rx if I couldn't get the Estrace. I don't know if you guys are that brave to do some hormones without a doc's guidance. Do some research and see what you think. I don't know what if any adverse effects the testosterone would have in regard to BC. I don't understand why if all the medical community knows testosterone will increase libido in women, why something hasn't come out on the market for us. Where is our little blue (or pink) pill?
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I'm calling to make my gyn appointment today. I've been taking copious notes. Fingers crossed I walk out with the Rx.
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Good luck, Texas. I hope you get your Rx!
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OK, Rgluff, I tried this about fifteen years ago because I suspected that I was low on testosterone and I know that it is a strong component in libido. I had very little body hair which is usually an indication of low testosterone levels. I think it might have improved my libido slightly, but a lot of strange things happened. It required sequencing with other hormones and I am not particularly good at that, and I often forgot to take something. Around the end of the month I started getting very bad pimples, kind of an extreme pre-menstrual syndrome. Then I started getting strange swellings at odd places in my body..like my heel. The dramatic climax to this medical regieme came when I ended up in the ER in the middle of the night with a tongue swelling that nearly choked me to death. At the time I was also taking other drugs, like Ibuprofen. I was told never to take either drug again because I could die from an allergic reaction.That was my reaction which is by no means a yardstick to measure others by...but it made me think very carefully about fooling around with hormones again!!! I'm with Firnni on the Estrace cream, I use it and it totally totally does the trick!!
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Mississy, I'm with you on researching quality of life
Firni: so happy for you, so sorry it took so long to convince them to give it to you
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Mizsissy, were you using it regularly? And if so, where did you put it? Because I was thinking, just a dab in the appropriate spot to heat things up, at least that's what I've read can be done. Maybe I'm wrong, though, maybe it has more of a cumulative effect and therefore requires that more of it be used regularly?
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Rgiuff, I was taking pills.
Kmmd, Firni, others, I think *quality of life* during cancer treatment is a huge factor and is something that has been grossly overlooked in breast cancer treatment. Most of the doctors are men, and most of the patients are women.
It was so easy for the doctors to tell us we had to give up our sex lives, even worse, it was so easy for them to prescribe treatments that ruined our sex lives and our relationships without thinking of the consquences, only thinking of our longevity. In my way of thinking, chemo is a real crapshoot that belongs to the medieval world.
To be frank: I am a close friend of Mena's, and I know when she has gone through over the past 2-3 years and it has been brutal. Her body has been tormented by every chemo ever invented by Man (gender distinction intended) and I am not sure whether this was good or bad. My experience with her has colored my own feelings about what I would do if I had recurrence and as a very high risk patient (high oncotype score, family history) this is a very real concern. I don't think I'd have chemo. I think I would prefer to go quickly, to focus on living, and to benefit from good nutrition, exercise, massage, my relationships with those who are close to me and love me (including my husband) and my own spiritual strength. I think I would want some good drugs.
Perhaps we need a new thread on quality of life during treatment.
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Can I say that, on the question of libido (as opposed to issues of atrophy or dryness) I am increasingly of the view that "if you build it he will come" (to quote Field of Dreams). In other words, I have sex whether I feel like it or not, and having sex makes me feel like having sex. I make sure I am not going to be hurt, of course (plenty of lube etc) but if I waited to be all ragged with lust I would have had none for the past 4 months. Having sex, even if I don't personally always have an earth-shattering time, makes me feel sexier because I am sharing pleasure with my DBF. And that makes me more likely to WANT sex the next time. And to orgasm more.
I know it is not a solution for extreme cases of loss of sensation, etc, but I have found it really has helped me to maintain my quality of life - sex has remained on the schedule, come hell or high water, and I know that I am the better for it.
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Have any of you tried that new increased sensation lube for women they're advertising on TV? I also saw a supplement for libido in the health food store yesterday. I didn't really look at the ingredients coz libido wasn't my problem. Just a couple more things you might look into before going with testosterone if your docs say no.
When I saw Onc last and told him I still needed the Estrace, I was ready to ask him if it would impact his life in a negative way if every time he had sex it felt like his partner was tearing the skin off his penis. I didn't have to go that far. I don't think anyone has ever been able to describe to them just how bad sex can feel without some help. I find it hard to believe they don't care. They just don't get it.
Quality of life is imperative. I don't know what all Mena went thru. I do know what some other women have gone thru with mets and more and more chemo. And ended up losing their battle in the end anyway. If it came to sex or life. I would choose life with a little less quality. If it came to torturous chemo and other procedures, I would choose quality. Altho, who can really say until faced with that decision. The will to live and to do anything to achieve that is pretty strong.
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How is Mena now? I thank her for this thread... as many do. How is she...
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Firni, Mena's life story is right here in this thread...you can read her posts from the beginning. She'll make you laugh and she'll make you cry.
Estepp, Mena currently has mets to her liver and lungs and has been in and out of the hospital with breathing problems and pain. A few weeks ago she was in the hospital with a very serious blood infection that required transfusions and we were worried that we might lose her, but she recovered and is back home now, on oxygen.
There is a thread for Mena called Updates on Mena, and she loves to hear from us. I spoke to her a few days ago and I read her posts from her thread and sometimes the mojo thread. She is very happy to know that the mojo thread is still going. I've been trying to convince her to get back on and post but this is difficult as she's quite sick now.
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Firni...back to issue of quality of life. I had a lot things happen to me in chemo that I didn't expect and were quite traumatizing. The main issue was that I lost the ability to paint; I discovered painting about five years previously to the dx and had worked very hard at developing some skill. Art is something requires a lot of focus and mental energy and during chemo I could not paint at all, which left a big hole in my life, as that had been the main thing. And after chemo I found that I had lost the ability. For the past two years since my chemo I have been working very hard at regaining that ability, but some of it has been permanently lost.
Other things that happened..during treatment I contracted some sort of antibiotic-resistant bug at the clinic and now have a problem with continual UTIs. The whole treatment experience was so traumatizing that I aged a lot during the process, and went from looking like a 40 year old to a 70 year old in two years. I recently had some face surgery to correct that, and I am very happy with the result. This was very expensive and I spent a good part of retirement savings on it.
But having gone through all that, if I had recurrence and were faced with the prospect of taking chemo again, I am not sure I would want to go through with it. I don't think I could give up painting again, it is too vital a part of my life. I did have to give up my sex life for about a year, but that has returned mainly because of advice I found on this thread. I wouldn't want to put my husband, family, and friends through the long ordeal of nursing me. And losing my hair was no small thing!!! It took a good two years go get a healthy head of hair back... these are all very big issues for me.
I think the issues of treatment are going to be very different for younger and older women. If you have children, you are going to want to do everything possible to be there as long as possible to raise and nurture them. I am not a mother myself and I can hardly imagine the heartbreak of not being there for your children, it must be wrenching. What happens to the orphans and children of women in breast cancer treatment is a whole issue that I feel has never been properly addressed. But as an older woman, quality of life would be much more important to me. I think doctors and the medical community need to think more about the impact of treatment not just on the individual, but on overall health of the marriage and the family.
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I don't think any of us quite expected the long term impact that cancer would have on our lives and our bodies. When I was first diagnosed, I lost count of the number of people who said they knew women who had had breast cancer years ago and now didn't think about it at all. "Life would soon be normal" they'd tell me.
Even my gyn. told me this would be a tiny blip and soon forgotten.
I've got a long list of side effects that I doubt will ever go away, plus the aches/pains from the aromatase inhibitors, not to mention the tearing/pain from sex we've been discussing here. I feel badly that my youthful looks are gone. And of course in the back of my mind is always that fear of recurrence. Now my husband understands what I mean by "new normal" but I'm not sure my family or friends will ever comprehend.
Quality of life is what keeps us going. I'm determined to keep moving forward and trying to regain as much of what I've lost as possible. But I HAVE lost parts of me unrelated to my breast. I just wish that others could understand that.
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I think maybe we should start another thread on this.
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Mizsissy I think you are right. I'll start a Quality of Life thread later today in the Tests, Treatments and Side Effects forum. Unless we share, we can only relate to what we have gone thru ourselves. Each story is so different. I'm so sorry you lost the ability to paint. Any type of art, whether it's painting, dancing, writing, etc becomes such a part of who we are. Losing your ability to paint is losing part of you inner self.
Texas, I know your story well as we started this journey together as youthful, active, busy, productive women. We were the ones who would just be bumped by the "Mini Cooper" with treatments. Now here we are riding on the grills of Mac Trucks. Yours with the extended cab.
I'll find Mena's thread and write her a note. I'm sorry she's going thru so much.
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I want to recommend a book that I read which explains a lot about the whole Mojo issue. It's called "For Women Only, a revolutionary guide for reclaiming your sex life" written by Drs. Jennifer & Laura Berman. These are 2 sisters, one is a urologist, the other a sex therapist.
They analyze all the different sex problems that women go through and what causes them, as well as what can be done about them. They are also researching ways to avoid cutting essential blood vessels and nerves during any type of pelvic surgery, because as they point out, much research has improved prostate and other pelvic surgeries for men to keep their sexuality intact, but the same research has not been done for women's bodies.
They also discuss all the possible solutions for the various types of Mojo problems.
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Just had my gyn appt this afternoon and ONCE AGAIN discussed the dryness problem. She said that I was "not bad", a little irritated, but she feels that probably since I was not sexually active for 22 years, then diagnosed with the breast cancer, now menopause...perhaps that could be the reason for the dryness. I did get a prescription from my medical oncologist for the e-string, but sooo afraid to use it. The gyn doc said it must be okay if the oncologist recommended it. Still leary though
. We have been using vaseline and it seems to be fine, and we don't have to use it everytime. Also, the gyn doc mentioned that with increased sexual activity, I should be okay and maybe just need to use the e-string for a short period of time.I don't know. Just so scared.
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I can recommend the estring! I only used 2 (for 3 mos each) and then no longer needed it.
My onc had NO problem ordering it and that was 6 years ago.
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