The solution to painful intercourse!!!!!! Yipeee!

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  • K-Lo
    K-Lo Member Posts: 2,743
    edited June 2012

    Spam do you have a GP? Another doc you can turn to?  This is topical, I really dont think the Oncologist needs to find studies on it for gosh sakes.

  • etherize
    etherize Member Posts: 423
    edited June 2012

    NCbeachgal, I haven't tried Zestra but thanks for reminding me -- I was going to order some.  I remember when it came out and TV networks were refusing to air commercials for it.  (If it were a men's product, there would be no problem, of course.)  I'm surprised and pleased that Walmart carries it.

  • SPAMgirl
    SPAMgirl Member Posts: 1,470
    edited June 2012

    I went to a doctor who specializes in sexual problems, especially menopause. She really wants me to try a testosterone cream every night to reduce the dryness. She is going to test my current testosterone level in my next blood draw. I meet with her in four weeks to talk about progress.



    FYI, our pharmacy calls it 'Oh Baby Cream'

  • Ann97
    Ann97 Member Posts: 156
    edited June 2012

    I have been following this thread and trying everything mentioned for a few months now. I've been on tamox for 1.5 years but I expect July to be my last month and I will be switched over to Arimidex. Does anyone know if this problem gets any better once on Arimidex? My onc said it would but I'm pretty sure I've seen a lot of posters in here from people on Arimidex so I'm not holding my breath that it will get better.

    I have tried the SC three times but I have not noticed any less pain than without it. :( I've been very disappointed since everyone here has had good results. DH gets cold sores easily so I did ask for it without that one ingredient. Could this be why it is not working well for me?

    I'm going to go to Walmart tomorrow for some Zestra.

    It was my GYN who prescribed the Scream Cream (and said I could not have the estrogen creams) but when I saw my onc and told him about it, he said that I could use the estrogen creams since I've had a BMX and don't have any breast tissue the cream can't give me BC. But I'm afraid to believe that. I thought they leave a thin layer of breast tissue behind? I'm not sure I'm willing to take the risk. But I am going to end up with a very unhappy DH if I don't find some way to make this problem better. Cry

  • TinaT
    TinaT Member Posts: 2,300
    edited June 2012

    Ann97 - I can't give you a Tamoxifen / Arimidex comparison, but considering that Tamoxifen allows your body to still produce some estrogen and Arimidex totally shuts down all estrogen production I doubt that things will improve once you switch over....sorry Cry.

    Interesting how all our doctors have a different take on things.  Mine are all very conservative with meds, follow-ups, etc. because there are always breast cells left behind after MX.  In theory anything that crops up after MX would be easily palpated as it would be just under the skin surface.

  • SPAMgirl
    SPAMgirl Member Posts: 1,470
    edited June 2012

    I'm on arimidex and I think it's worse than tamoxifin. The sex/wellness doc was very insistent that I try a testosterone cream. She also prescribed a boric acid vaginal suppository. Things are much softer today. I can't get the testosterone cream until after we get the blood results back. She did tell that it would cause me to scream until I had some hormones down south.

  • Ann97
    Ann97 Member Posts: 156
    edited June 2012

    SPAMgirl, how did you find a sex/wellness doc?

    TinaT, I've been told the same thing, that with the tissue that is left it would be easy to find a lump - that is the whole reason I chose to have the BMX. My tissue was so dense before I was getting false negative mammos and I was so lumpy that I and the doctors did not feel any lumps in exams. My dr is very conservative too with lots of follow ups and tests, but he did make that comment about not having tissue. Funny because I just had an ultrasound and the tech said they left tissue behind. Argh! I'm not going to obsess on that issue and just press forward with trying to find a product that works. Maybe I should try the SC with the ingredient that causes the cold sores and just have DH deal with them or talk to a dr about taking something to prevent them? He already uses Lysine.

  • MargLiz
    MargLiz Member Posts: 1
    edited June 2012

    The cocoa butter definitely helps and seems 'plumpier' than the coconut oil--but I hate smelling like chocolate!  Has anyone found such a thing as cocoa butter that has no scent?  But thank you, everyone, who recommended them. They're both far, far better than anything I've found and so much nicer than the yucky OTC ovals and creams. 

    Ann97: I'm on arimadex and was wondering if tamoxifen would be better. So probably the answer is no for both of us.  

    I got the SC, but the compounding pharmacist wouldn't put in all the ingredients. They wanted to try it with only two.  Men! Even when given all the directions, they just figure they have to mess with it, right?  

    Now I don't know if the other stuff would be better and--as if it wasn't embarrassing enough--I have to call back and say, "That didn't work."  I'm sniffling just thinking of having to get up enough courage to call; it took me a couple of months the first time   Cry.   

      

  • tenaj
    tenaj Member Posts: 1,052
    edited June 2012

    MargLiz- I just switched to tamoxifen 3 wks ago because I wanted to use an estrogen cream & my MO wouldn't OK it unless I switched from femara. My GYN thought it would be OK but I didn't want to go against my MO so I switched. I tried most things, replens, olive oil, coconut butter, SC......things got a little better but not good enough. Things have improved already in this short time, I don't even have the same joint pain!!! Yay!!!!!

  • cfdr
    cfdr Member Posts: 549
    edited June 2012

    Has anyone tried using vaginal dilators? My MO recommended that since moisturizing alone is not having the desired effect.

  • cfdr
    cfdr Member Posts: 549
    edited June 2012

    Has anyone tried using vaginal dilators? My MO recommended that since moisturizing alone is not having the desired effect.

  • 1openheart
    1openheart Member Posts: 765
    edited June 2012

    Good evening, Ladies.....question for all of you Scream Cream users.  I have used it with success.  I like it a lot.  I was wondering how long of a shelf life your pharmacist gives it until it expires.  I wanted to use some last night and noticed that it had expired nearly 3 months ago.  I used it last week and it seemed fine.  It only had a one month shelf life from when it was filled.  There is no way we can use it all in one month.  I WISH...but that is not going to happen!  I think I will ask if my pharmacist if he can give me half the amount.  I hate to spend $60 and then have to throw half of it away.

    Thanks! 

  • jancie
    jancie Member Posts: 2,631
    edited June 2012

    CFDR - dilators did not work for me at all.

    I have an excess of scream cream - guess we hit a slump for a little bit so I am sure my stuff is at least 2 months old but used it last week and no problem whatsoever!  I went through the first SC in about 15 days!

  • 3jaysmom
    3jaysmom Member Posts: 4,266
    edited November 2012

    today i went to the ob/gyn, and got a BIG surprise!!!in so. fla. with a dr that primarily txs infertility; i found a GENTLEman, thats' very knowlegavle with chemo/meno pause..  his response to me, was see all those woemn up there with their babies?? they'll be sitting in the same chair as you, less the chemo pause hopefully>> and, then proceeded on discusing scream cream (he knew it , but not the name) he roared when i told him i was on bc.org, and thats' the only name we have for it..

      after examining me, he said the walls aren't thining, as much as we both thought they would be, but he wants me to try "almond oil" and see if it works better than the coconut oil.. less greasy, he said.. then, call him, and he'll get sc; he doesn't think i need it, though, as i "seem responsive there" i hope i wasn't with him.. i couldn't tell!!!OMG WHAT does that mean???

     anyway, he siad the compunding pharmacy i use there, at te hospital does com pound it.. and then, he says "shame on any ob/gynthat doesn't ask or rx for it" you've had cancer, lived a long life, and why should you forgo the most enjoyable part of that life"!!!i think i hit the "jackpot" ladies.. of course, this is all conjecture.. dh won't start "trying" till this dr. said ok.. he got his answer today, in spades.. so, i'll et you know.. he wants my DH to get the ky for him, and see if it will help him.. me,it'll be no prob, he says.. we'll just use sc laugh laugh, if we need to.

      sure put my mind at rest.. he said i had a bad UTI; and the pain was there.. who knew!so, off to the urologist and than a (not so) dry run, i hope......3jays

  • debbierobbins01
    debbierobbins01 Member Posts: 1
    edited July 2012

    I have  this problem and have been looking for something that works. Alot of pain during intercourse. My doctor  brought this up  that one of her other patients found it on the internet. But she could not remember the compound and what to prescripe.   What  is the actual compound version of this?   So I can  down load  and take it to her and hopefully get started on fulfeeling my husbands needs. Chemo of course caused this change for me and has been such a downer . Chemo stills away so much along with the breast cancer and having to adjust to losing your breasts.

  • jancie
    jancie Member Posts: 2,631
    edited July 2012

    I found this on google - my old link wasn't working anymore but this is the same stuff but from a different site.

    I saw my oncologist yesterday and he thanked ME AGAIN for bringing him the formula and has been passing it out with a prescription to other women with BC having the same issues.

    Also ask for 5% lidocaine cream which  will help with the pain - you insert it using your fingers (mine came in a small jar) and then wait 5 minutes and you are ready to go.  The scream cream - I put it in 15-20 minutes prior to penetration.

    After about 10 sessions I no longer needed the lidocaine cream.

    http://www.ijpc.com/_pdf/Scream_Cream.pdf

  • SPAMgirl
    SPAMgirl Member Posts: 1,470
    edited July 2012
  • Mopsy
    Mopsy Member Posts: 49
    edited August 2012

    August 7th 2012 article in New York Times Science Section by Jane Brody

    AUGUST 6, 2012, 12:08 PM
    Persistence Is Key to Treating Vaginal Pain

    By JANE E. BRODY
    Millions of women experience vaginal discomfort, and sometimes crippling pain, for a variety of reasons, most often a loss of estrogen. The resulting vaginal dryness and atrophy can make sexual intercourse, a pelvic exam, urinating, or even sitting, walking or cycling a painful nightmare.

    In addition to women near or past menopause, those affected include women who have recently given birth or are breast-feeding, women treated with estrogen-suppressing drugs for breast cancer or given chemotherapy or pelvic radiation for other cancers, and women whose ovaries were surgically removed.

    With women now living more than a third of their lives past menopause and more and more surviving cancer, sexual problems linked to estrogen decline are increasingly common.

    Yet, only about one-quarter of women with vaginal pain ever report the problem to a medical professional. And those who do speak up are often told - incorrectly - that nothing can be done and that they must learn to live with the pain.

    Among the many patients treated by Dr. Deborah Coady, a New York gynecologist and author, with Nancy Fish, of "Healing Painful Sex," are those told by other doctors that "It's all in your head," "You just need to relax," "There must be something wrong in your relationship," or "There's nothing physically wrong with you." One doctor even suggested that a patient tell her boyfriend to get another girlfriend.

    Small wonder that so many women with vaginal pain feel isolated and ashamed and think of themselves as damaged goods, said Ms. Fish, a psychotherapist and a sexual pain patient herself.

    "Whatever your age, when you have sexual pain it affects your whole sense of self," she said in an interview. "Regardless of the cause, for many women it can be a life-altering condition."

    She urged women not to be embarrassed and to start talking about it as a critical first step toward making effective treatment more widely available.

    The Hormone Connection

    As women approach menopause, estrogen production declines, then stops completely, or nearly so, as the ovaries shut down.

    When ovaries are surgically removed before menopause, or when premenopausal women with cancer are treated with estrogen-suppressing drugs or with pelvic radiation, the loss of estrogen is abrupt. Often women are not prepared for the consequences.

    Doctors focused on treating cancer are unlikely to consider the effects on a woman's sexuality. But Dr. Coady said there is a new quasi-specialty called "oncosexology" that is trying to educate oncologists about how to handle this side effect more effectively.

    Vaginal atrophy, also known as atrophic vaginitis, involves a thinning, drying and inflammation of the walls of the vagina from a loss of estrogen. The symptoms may include dryness and burning; a shortening of the vaginal canal; urinary burning, urgency and incontinence; and frequent urinary tract infections.

    This Week: The science of cheese; the buzz about yeast; and a painful subject for older women.

    "As estrogen declines, there are huge environmental changes in the vagina," Dr. Coady said in an interview. "Cells on the surface of the vaginal canal don't mature, resulting in thin skin."

    The vagina becomes less acidic, she added. The good bacteria that normally predominate, lactobacilli, disappear and are often replaced by harmful bacteria and fungi. The result may be a yellowish secretion that can be irritating. The vaginal lining splits easily, too, which can lead to infections.

    When vaginal walls are fragile, penetration and thrusting during intercourse, if even possible, can cause tiny tears. When sex hurts, a woman may try to avoid intimacy altogether, which can jeopardize an existing relationship or keep her from entering a new one.

    "Ironically," Dr. Coady said, "women who are fit and lean tend to suffer more from a loss of ovarian function, because women with a lot of fat cells make more estrogen in their body fat."

    The effects of hormone loss are also greater among women who smoke and those who have never given birth vaginally.

    Treatment Is Possible

    Dr. Coady urges women with sexual pain not to give up, no matter how old they are or how many doctors may have told them that nothing can be done to relieve their discomfort. It is important not to delay treatment: The longer sexual pain persists, the more likely it is to result in nerve pain and dysfunction of the pelvic floor, making the problem still harder to treat.

    Patience is also important. It can take weeks or even months to achieve the full benefits of effective treatment, which may involve several complementary approaches.

    Local treatments found to be helpful include a vaginal estrogen ring (Estring) that is replaced every three months; an estrogen tablet (Vagifem) used daily for two weeks, then twice a week thereafter; or vaginal estrogen cream (Estrace, Premarin and the like) applied daily for a few weeks, then twice a week thereafter. Used in small amounts as directed, these result in very little bodywide absorption of estrogen. Estriol, a less potent estrogen, is considered safe for women who have had an estrogen-sensitive cancer.

    But insertion of an estrogen into the vagina does little to relieve "entry pain with penetration," Dr. Coady said, so treating the vaginal opening is critical as well.

    Whether vaginal discomfort is mild or severe, regular use of an over-the-counter lubricant like K-Y Jelly (by both partners) or a vaginal moisturizer like Replens can help to make sex more pleasurable. Dr. Coady has found that applying a coating of natural oils like vitamin E or safflower, coconut or olive oil three or four times a day for a month or two can hydrate the vulvar skin, strengthen it and even heal fissures.

    These oils are even more effective when combined with small amounts of pharmacy-compounded estriol and testosterone, she said.

    Physical therapy can also be an important component of treatment. Sexual pain often involves changes below the surface: shortened connective tissues and weakened muscles that contribute to sexual discomfort. Dr. Coady said use of a dilator or vibrator can increase blood flow to the vaginal area, and a soft doughnut ring at the vaginal opening can elongate the vaginal canal.

    In addition, exercises like yoga, Pilates, qigong and others that strengthen the pelvic floor and increase flexibility can be very helpful, Dr. Coady said.

    Finding Help for Vaginal Pain

    Doctors affiliated with the following organizations, among others, can help women avoid the frustration and discouragement often encountered when seeking treatment for vaginal pain.

    National Vulvodynia Association. (301) 299-0775

    International Society for the Study of Women's Sexual Health. (847) 517-7225

    International Society for the Study of Vulvovaginal Disease. (704) 814-9493

    International Pelvic Pain Society. (847) 517-8712

    American Physical Therapy Association, Women's Health Section. (800) 999-2782

  • LadyFarmer
    LadyFarmer Member Posts: 12
    edited August 2012

    I have tried to get a prescription for Scream Cream from my Family Doctor, my Medical Oncologist, and my Gynecologist Oncologist -- but none of them are comfortable to prescribe it for me based on the printouts I gave each of them, from the link on this forum for Scream Cream.  They are concerned about 2 of the ingredients in Scream Cream. 

    I am in Ontario and am wondering if there are any other Ontario women on here that have managed to overcome this hurdle, and if so, how did you do it?  From everything I have read on here, I am anxious to give the Scream Cream a try as I am suffering from Vaginal Atrophy, as diagnosed by my Gynecologist.  She has prescribed Vagifem for me and symptoms have improved with regard to burning on urination, but still need help for pain relief with intercourse.  Never had a problem until after chemo brought on menopause.  I was reluctant to use the Vagifem as I am ER+/PR+, but I have been reassured by both my MO and Gyn Onc that it is safe, and it boils down to being a Quality of Life issue.  I could not go on the way I was living.  So the Vagifem has eased some of the problem, but I would say...not enough.

    Any suggestions?  I also read in this forum about Zestra from Wal*Mart, but have checked and our Wal*Mart doesn't carry it....

  • SPAMgirl
    SPAMgirl Member Posts: 1,470
    edited August 2012

    My pelvic pain doctor prescribed testosterone instead of vafigfem and it's helped a lot, and I don't have to worry about the estrogen. For some of the effects of scream cream, have you tried KY Intense. It's not quite the same, bit it's not bad. My pelvic pain doctor was most concerned with the irritatetion of the 4 glands surrounding the cliterous. She gave my some suppositories of boric acid so level out the ph and give the vagina some immediate moisturizing. She said it worked a lot better than the replies.

  • LadyFarmer
    LadyFarmer Member Posts: 12
    edited August 2012

    Thanks SPAMgirl for your reply.  I appreciate any advice I can get.  Smile I will ask my doctor next time I am in about the possibility of testosterone then!  Sounds like a great idea, and then not to have to worry about the estrogen!  Wonder why they didn't automatically think of that for those of us that have BC and are ER+? 

    I did try KY Intense once and didn't like it -- seemed that it burnt, but it could have been because of the state I was in at the time.  Perhaps I was going to burn anyway, no matter what I used?  So will have to try it again.

    Sounds like your doctor is willing to try to help you with other ways too.  Boric acid to level out the ph?  And I think you must have meant that it works better than "replens"?  You didn't say how that worked, so I am assuming you may have just got the boric acid.  Good luck and hope it helps.Wink

    I am hoping to hear from some ladies in Ontario as to how they are dealing with these issues, and if they are able to get their doctors to prescribe scream cream here or if they are using different products?  If my doctors won't prescribe scream cream because they are uncomfortable doing that because of possible problems due to a couple ingredients, then I understand that and respect them for that.  But I am wondering what other products are the other ladies using besides Vagifem?   

  • SPAMgirl
    SPAMgirl Member Posts: 1,470
    edited August 2012

    I liked the boric acid better than the replens for softening the walls. My pelvic pain doctor said anything I used, including the KY intense, would burn because my tissue was so irritated from lack of hormones.

    I'm seeing a pelvic pain doctor through the ogy/bn department, not through the onc. She did get permission for everything from the onc though.

  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited August 2012

    Ladyfarmer, some of the women on this thread had oncs who didn't like all the ingredients . Do the pharmacy made it up without that ingredient. You may want to page back, and see.if the ingredient your onc is against is one of the ones they left out. Can't hurt, and even a.shortened formula is a help good luck, don't give.up much love

  • hrf
    hrf Member Posts: 3,225
    edited August 2012

    Vagifem is considered safe for ER+. It helps a lot.

  • TAB55
    TAB55 Member Posts: 198
    edited August 2012

    I used Astroglide, and it worked well for me.  I'm post menopausal, but am still in radiation and haven't started hormone therapy yet.  My RO said she'd check out the scream cream.

  • LadyFarmer
    LadyFarmer Member Posts: 12
    edited August 2012

    SPAMgirl, thanks for sharing.  Now it makes sense that since the tissue was so irritated, because of the lack of hormones...anything I used would have burned.  I will try the KY Intense again. Wink

    Moonflower, yes I had read that others had their prescriptions filled by their pharmacy leaving out the 2 controversial ingredients.  Some had said they would have liked to have had the other 2 ingredients, thinking that perhaps they would have made a difference (positive), but as you say, at least it would be some help!  Something would be better than nothing at this point!  I will see my onc in 2 weeks, so will ask her again, but this time I will ask her to try writing it leaving out those 2 ingredients as you suggested. Wink I will lower my expectations, so that I will at least hopefully get something to try!  Thanks for your suggestion!   

    Hrf, yes I do agree that Vagifem does help alot.  I was just so nervous to use it, with all of the disclosures written in with it.  However I do feel that I am in the best hands possible with my MO and my GYN/ONC - brilliant lady doctors!  I am truly blessed.  I trust they would not give me something that would harm me.  They have explained that there is very little that gets in the bloodstream, but in fighting this battle so hard, I find it difficult to accept anything that would jeopardize my life.  As long as I am taking chemotherapy or hormone therapy to offset any trace of the estrogen that the Vagifem may put in me, I can accept that.  As for how well it works, I have only been on the Vagifem for a short time, for the Vaginal Atrophy and have found an improvement already, thank goodness. Smile

    TAB55, thank you for checking with your RO about the scream cream.  Smile

    Thank you ladies for all of your advice, comments and help.  It means alot and I wish you all well in your challenges and have a super weekend!  I hope to get back on here on the weekend!  Wink

  • etherize
    etherize Member Posts: 423
    edited August 2012

    I asked my MO about Vagifem and he said absolutely NOT, that it's not safe for ER+ bc, and that enough gets into the bloodstream that he wouldn't prescribe it.  The only thing he'd prescribe is the estring, which I don't want to use.  I'm really bummed, because I used Vagifem before for vaginal atrophy due to menopause and it worked beautifully.

  • hrf
    hrf Member Posts: 3,225
    edited August 2012

    etherize, I suggest that your ob/gyn might know more about it than the MO. The evidence is that estrogen does not get into the bloodstream when one uses Vagifem according to directions. However, you need to do what you feel comfortable with. 

  • etherize
    etherize Member Posts: 423
    edited August 2012

    Yeah, she might know more than my MO, I'll have to check.  I think she'd defer to him though, because I have Kaiser for insurance and all the doctors stick together.  I'd be comfortable using Vagifem.

  • TAB55
    TAB55 Member Posts: 198
    edited August 2012

    I got the prescription for scream cream from my RO today.  She was very negative about using vagifem on women whose tumors are ER+.  According to her, the estrogen will get into the blood stream if vagifem is used.  The astroglide helped me, but it's not perfect.  I'm hoping that the scream cream will do the trick.  Now I just need to find a compound pharmacy.... 

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