I WANT MY MOJO BACK!
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I have a problem that I have not seen on this forum before. Even before BC, my vaginal walls had become paper thin and tear during intercourse. Very painful and opens one up to all sorts of infections. My gyn was going to give me some estrogen cream to plump up my walls. However, I was diagnosed with ER+ BC before I could get an Rx for the estrogen cream. Now my onc and gyn are absolutely against anything estrogen. Lubricants of any kind don't take care of this problem. Does any one have the same problem and what did you do without using an estrogen Rx? It doesn't matter how much mojo/libido you have when sex literally tears you apart. Also, I know there are many other things DH and I can do, but sometimes you just gotta have penetration or it becomes perpetual foreplay.
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Firni, I absolutely am dealing with the same thing. I get bruised and torn each time we try. I read somewhere that they can do an estrodiol test, then let you use a little estrogen cream (less than the recommended dosage) then do another estrodiol test in a month to see how much of it is actually getting into your system.
I'm thinking of asking my gyn about doing this. My oncologist will veto it without consideration so he may not get a vote.
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Yes, Texas, that's what my gyn was going to do for me before BC. Now both she and my onc won't let me have any estrogen of any type at all. In fact my onc is disappointed that I'm on Tamoxifen and not Femara so ALL the estrogen can be eradicated from my body. Any suggestions besides estrogen?
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Firni and Texas, I don't know what to tell you. From people I've talked to once the walls get that thin the only thing that works is some local estrogen. Once they're built back up you can sometimes go off using it. Lube isn't enough when the walls get that thin. I picked my Onc precisely because we discussed this ahead of time and she understood that for me it was a quality of life indicator and if I needed it she would let me use it. Anyway you can talk your oncs into it?
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I'm sure my onc won't go for it. Maybe my gyn will do it without his blessing, but I doubt it. I may have to switch oncs or gyn or go see an endocrinologist to get my hormones balanced. I will absolutely make sure an endocrinologist will Rx estrogen if I do that. I understand it's my onc's job to keep me alive and disease free if possible, but with lingering SEs from chemo, SEs from anti hormonal tx and not able to have sex, quality of life just pretty much sucks. And the docs wonder why we get depressed.
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It should be okay. Have fun!
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hi guys
About the estrogen...
I have interviewed a lot of docs on this topic.
The best way to get it is through a dissolvable tablet that you insert. You have much more control over the dose than if you were to use Estrace, the cream.
Many docs do an estradiol level before and then test you three months later. 99% of the time there is no change.
If you are going to use the topical, the pill form that disolves, Vagifem is the best way to go.
Atrophy, thinning tissue and pain CAN BE REVERSED. You CAN get your body back. It takes time and patience. And if a little topical estrogen can help build you back up again and improve your quality of life, you should do it.
hugs
g
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Can anyone answer my post about the coconut oil please? (it was a few posts back).
It got kind of overshadowed by the posts to do with vaginal atrophy. I got that too......not had any problems until recently, despite being told years ago that I had thinning walls.I get a lot of burning after sex now and often UTI's too.
A while ago some people were suggesting using coconut oil to help with lubrication......I just wanted to clarify if it could be used inside the vagina.What if there are small tears there...would it be ok still?
Thanks,
Sam
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Thanks everyone for the atrophy/estrogen issue. Just a matter of someone prescribing it for me.
Sorry we overshadowed your question Sam. It seems that it had been discussed on this thread a while back. My chemo brain is thinking pure coconut oil is ok. But I don't know about if you're getting small tears. I'm sure someone else will chime in.
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Sam do a search with the key words coconut oil lubricant. That will take you to a bunch of posts on the Mojo thread addressing coconut oil as a personal lubricant. Seems like quite a few women use it.
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I guess I am the exception to the rule. I had a hysterectomy in my early thirties and our love life when for a shitter. Wow, since I've been on tamoxifen for 1 year my MOJO is back. I haven't enjoyed sex like this in years. Maybe its just me but I'm sooooo greatful.
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After reading Gibby's message, sign me up for tamoxifen!
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Thanks, Firni.....found the posts I had been looking for. Seems I was searching in the wrong way initially.(on the site rather than the discussion boards......silly me).
I am about to try the coconut oil. Will report back.
Sam
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Hey thanks guys, I've been reading here for about a month and appreciate all the suggestions. Back in Dec I was dx'd with extensive bone mets (surgery for a broken femur too). I had rads, am on Femara and zometa and needless to say, haven't been interested in sex. I've had my first follow up scans, stable, and am starting to feel I'd like to enjoy my life again. My DH has been wonderful but good Lord, how much can he take? Or not take, I guess. LOL My head and heart wants to but my woowoo doesn't seem to be intersted at all. Plus I am limited body wise for any of the yoga positions mentioned a few pages back. But......I finally tried it with hubby. I agree with the oral, that's what always got me there but while it felt great I just couldn't get over that edge. So................I ordered the Magic Wand (with attachments). OMG I tried it out alone, and I am not kidding or exaggerating, 60 seconds, tops. ONE minute. (without attachment) I couldn't believe it! LOL What a happy camper! Now, I at least feel like I can try more with DH and if needed we can finish off with Mr B. the Magic Wand.
Thanks guys!
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WAY TO GO, MARSHA! I swear that I cannot think of any one woman's situation that wouldn't be improved by Mr. Big (Hitachi)! Even if you're in a fabulous and fulfilling relationship, the Wand just enhances things now & then or can keep your juices flowing when your partner isn't available. I think that it can be seen as as vital as water!
~Marin
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Firni -- I have the same problem as you, including the bruising, tearing, pain and infections. My oncologist told me when I first started Arimidex that vaginal drying and thinning could become a problem, and he sure was right about that! He also mentioned a product he feels pretty comfortable prescribing called VagiFem and I plan to talk with him about it at my appointment next week. --bonnie
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thanks Bonnie, I've been reading up on Vagifem and if Onc won't Rx it (which he most likely won't), I'll go to my gyn, if she won't I'll go to my PCP. If he won't, I'll find an endocrinologist. I'll find someone who will give it to me. I checked on line and you can't get it from anywhere without an Rx. So, this has become my new mission. Once my walls are plumped up, I don't think I'll have any problems at all.
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I have been on AI's for almost a year, now. First on Arimidex, now on Femara. I was amazed how fast the vaginal atrophy came on. After healing from the TRAM DH & I tried several times to have sex - wanted so badly to get somewhere close to our normal life back - but it was horribly painful for me. We tried KY and pretty much every other lubricant Walgreen's had on the shelf - nothing helped. Besides being painful, I honestly have had no desire at all. When I had my annual gyn appt in January he, of course, noticed the thinning immediately. We had a long discussion and he prescribed Vagifem for me - using it twice a week. I may regret not asking my onc, but I was afraid he would say no. As I told my gyn - it had become a quality of life issue. I can tell a difference, but sadly, it's still very painful even though we use a lubricant. My very, very sweet husband and I had a talk about it a couple of weeks ago. I asked him his feelings about it, because he doesn't seem interested in sex anymore either. I told him that I felt that part of our problem is that I have gained 30 lbs and I know that I don't look the same and it has to be a distraction for him. He acknowledge that yes, he's having trouble adjusting being next to a body that is so totally different that what he's touched for the last 30+ years. He choked up as he was saying this to me - I know it was hard for him to do, for fear of hurting my feelings, but I so appreciate him being honest with me. I told him that my fear is that 3 years from now we'll suddenly realize that we hadn't had sex in that whole time. He told me that it's OK, the only thing he really wants is for me to be here with him in 3 years. I'm tearing up right now as I type this. We were never one of those couples who "did it" every day, or at times every week even. We still hug a lot and clearly love each other. I guess I'm naive, but when all of this began I really thought that if I had the surgery and took the pills and did all things they told me to I would get my normal life back - I now realize that it's never going to be "the same" again. But I'm here and very thankful that I am.
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Deb, my husband hasn't wanted sex in about 4 years. He was diagnosed with 3 brain tumours in 2003 and we don't know if that's it. We have sex maybe every 3-4 months! I have found that when he gets me tea, or makes dinner, or rubs my back, I think of it as sex and get almost the same warm glow. After all, I can "do it myself" if it's just the big O I want. I do miss the physical part terribly, but would never give up my husband for it. So I know how your husband feels! I think my DH was sadly glad with my double mast as I won't be attractive to other men....
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Barbe:
I'm so sorry to hear of your and your husband's illnesses. You have really been through it, haven't you. I agree with you that at this point I really get a warm fuzzy feeling when he does the dishes or gets me tea or gives me a hug and especially when he took care of me after my surgeries. I hope that things go well for you both. We are both satisfied (well, sort of ) at this point and neither wants to put unnecessary pressure on the other - it's just not worth the stress at this point. I was so relieved that he was willing to discuss it with me. Hopefully, we'll figure it out sometime soon. I hope the same for you.
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Firni, good luck on your quest. I hope you find a doc who will prescribe it for you. I think some of these Oncs just don't get it about the quality of life issue and just have a one track mind, not realizing that the stress we go through with this issue can also contribute to reoccurences! And what really gets me is that I see many of us with this issue are at low risk for reoccurence!
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Thanks rgiuff. I think I should have found a female onc whose been thru menopause. For the most part, I don't think oncs do get it. They are number crunchers and the male oncs have no way of even having a clue what we go thru. I may have to just sit there and cry to get results, but at this point, that should be easy enough to do.
Over the next two weeks, I have appts with onc, gyn and PCP. So, by the end of the month, I hope to have this on the road to resolution. My DH has a job where he's in people's homes all the time. I know (or at least I think I know) he wouldn't cheat on me, but you know, sometimes things just happen. Do oncs ever think about that?DeblnTn, what a wonderful DH you have. My DH and I have been dealing with this atrophy issue for a year before I was diagnosed. No one seemed to know what was going on. Finally, two weeks before my biopsy, a new gyn figured out what the problem was. Too bad the Bx came back pos. and now estrogen is an issue. So, my DH has been very patient for almost 2 years now. Gotta love him. I want this as much for him as I do for myself.
Barbe, it is wonderful that your DH will show his love in other ways and that you are ok with that. I hate what cancer and tumors and all of this does to us, physically and mentally.
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Firni, I don't see my gyn until August but I plan to ask him about the Vagifem as well. He's pro-hormones BIG time so I think I'll be successful. If you start it first, let me know how it works.
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DebinTN, I thought about you when I woke up this morning with the extra 30 pound issue. I truly believe that if you had LOST 30 pounds he would have the same reaction. Men are creatures of habit! I colour my hair, curl, long, short all the time so my DH used to joke he was with a different woman all the time! hehehehehe Just put a different spin on it. Also, I've talked to a lot of guys about this and they all have said the biggest turn off is when a woman is too conscious of her body size/shape, etc. They don't care, as long as we're naked!
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Barbe, I know that the weight is not the real issue here. He knows that I am always tired (can't sleep), and always hot (varying degrees of hot flashes), and my joints (especially hips) hurt most of the time - not to mention the stuff I spoke of before. He also knows that I am numb over a good portion of my frontside. I try to hide it, but he evidently realizes that I am pretty miserable most of the time. I believe he thinks it would be selfish to want to "pleasure" himself when I am so uncomfortable. And he said he's just unsure where to touch anymore (I do guide him - it's just not the way we've "always done it") We both realize that we will have to work at this, but for both of us right now it's just not at the top of the list. I hope that by the time the end of Sept rolls around we will be ready to make an attempt at some good ol' vacation sex 0
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My onc is sending me to a gyn who will prescribe either vagifem or an estring (no, not a g-string!), depending on what she thinks is best. For me it is a quality of life issue even though there is a small risk, according to my onc, because my tumors were hormone +. I might be 62, but giving up sex is just too much to ask after all the other things that have been taken away within the last year. -bonnie
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Good for your onc, Bonnie. I see my PCP on Tues. and I'm going to start with him. Then Gyn, then I'll cry to my onc. I know he won't want to co operate no matter the quality of life. Let me know what you get. Maybe you'll want a g-string soon!
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My original BS and Onc. said I could use either Estring or Vagfem, but I was to scared too. Now a year into Arimidex the who who is broken so II spoke to my new BS (new city) and she stated " even the most conservative BS are now saying okay to either one" she went on to explain that testing did not show an increase in estradiol(sp?) So, I am using Vagfem and we will see if it improves the who who (:
I remember reading early on in this thread that someone was part of an estring study, is she still part of this thread and what were the results?
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I'm not so sure my ultra conservative onc will agree to anything estrogen no matter how bad the who who is. I'm afraid that my PCP and Gyn won't agree if onc says no. So just in case, I've been looking into the natural estiol which is plant based estrogen so no Rx required. Has anyone here ever tried that? If so, did it work for vag. atrophy?
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Firni, you're going to get in just as much trouble using a natural estrogen! In fact, in the hospital my Dad was in for his lung cancer, there were posts all over the hospital warning people to tell their doctors about "natural" supplements they took or over-the-counter drugs.
Your woo hoo may go boo hoo for a little while longer....
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