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

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  • jancie
    jancie Member Posts: 2,631
    edited December 2011

    Suz - sorry for the disappointment.  I had to also wait for the "stuff" the pharmacy had to order so they could compound this cream.  Add on top of that the pharmacist continuously faxing approval for the lidocaine cream and not the scream cream so 4 days of tracking that down....well let's just say I should have had the scream cream on a Tuesday and it was a week later before I could pick it up.

    However, I must say it is so worth the wait!!!!  Now when I get low - I go ahead and get a refill made up.  My oncologist said he would approve refills - as many as I want - when I want - he is just happy that finally my issue got resolved.  He took it personal when he couldn't resolve the problem with painful intercourse and he referred me to the best gyno he knew - but unfortunately that guy didn't do anything but an exam - refer me to a urologist and give me a dilator which neither worked.

    I feel guilty for posting in this Stage 4 thread but I just can't help myself!  I hope me posting here is not offending any of the Stage 4 women.

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  • Enjoyful
    Enjoyful Member Posts: 3,591
    edited December 2011

    It sure doesn't offend me, Jancie!

    I just emailed my oncologist, begging for a prescription.  The only possible bump in the road is the effect on my boyfriend.  He has blood clotting problems and scream cream is a vasodilator and blood flow enhancer....  I asked him to ask his doctor about it.

    Do you use enough that it gets smeared all over your partner, or should it not be a problem?

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  • jancie
    jancie Member Posts: 2,631
    edited December 2011

    Enjoyous - just reading your tag line had me cracking up!!  I so remember those days!

    I don't know for sure the answer to your question regarding your partner.  I would think that by 20 minutes of waiting that most of it would have been dissolved into your system.  Sorry the word disolved is not the word I want to use but chemo brain has just hit me.

    I would ask the pharmacist - I think they would know more about the ingredients versus the doctors.  JMHO

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  • Mary-Lou
    Mary-Lou Member Posts: 2,230
    edited December 2011

    I see my Onc this week Embarassed Guess what I'm going to ask about. Wink

    Great info. Have you shared with the MOJO thread ?

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  • Enjoyful
    Enjoyful Member Posts: 3,591
    edited December 2011

    Jancie -

    HAHAHAHA!  The funny thing is, what does one even DO with a screenshot?  Other than doing the nanny-nanny-boo-boo-I-screen-shotted-you dance?

    About how much of the scream cream do you use to get the desired effect?  Are we talking a dot or 1/2 cup?  If it's a dot or so, it probably wouldn't be a problem but I'm going to ask a dr. anyway.

    E

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  • scuttlers
    scuttlers Member Posts: 1,658
    edited December 2011

    A dot works for me. ;-)

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  • jancie
    jancie Member Posts: 2,631
    edited December 2011

    I wish only a dot worked for me but I use the equivalent of about 1/4 of a teaspoon total because I have to not put it on the outside of me but also on the inside.

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  • Enjoyful
    Enjoyful Member Posts: 3,591
    edited December 2011

    Hmmm...I think 1/4 tsp functions as a "dot" in my book.  So here's a funny thing - my oncologist is on board with it, but my ob/gyn is having fits because it includes a vasodilator.  No kidding!  She's worried about heart issues...anyone else heard that?  This is the same ob/gyn who prescribed localized ESTROGEN for my sexual difficulties, knowing that I have strongly ER+++ cancer.

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  • jancie
    jancie Member Posts: 2,631
    edited December 2011

    I have heart issues - and my onco had no problem with me using the scream cream.

    Ummmm.....sex = less stress = lower chance of heart attack?

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  • Enjoyful
    Enjoyful Member Posts: 3,591
    edited December 2011

    Makes sense to me.  I'll talk to her tomorrow and, if she refuses, I'll get it from my GP.

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  • suz45
    suz45 Member Posts: 796
    edited December 2011

    OK, Mandatory results are in... Kiss Kiss Kiss Kiss 4 out of 4 SC smileys

    Wow! I am soooo glad I went through the effort to get it as all I can say is WOW! It felt so natural & my body was actually working. DH thought it was pretty amazing too. Said it was like going back to 1986 (the year we met)  Heh heh, he wanted seconds but that would have been a little much for the first time. I only used a tiny bit of the lidocaine (the size of a small pea) I will use at least double next time.

    I cant believe all the frustration & pain Ive endured for no reason for 4 years! The Cancer Centres should be giving every woman that goes through chemo (or menopause for that matter) a handout & prescription for this! I was sent to 2 different Docs by my female Onco & also asked my female GP for help... nada. Until now, sooo glad my GP didnt question it and wrote the rx!

    Thanks Zoh & K-Lo you gals absolutely ROCK!

    Another tip for anyone ordering it, have the pharmacy put it in a "Topi-Click" dispenser. Absolutely no waste and it dispenses it sort of like the deodorant dispensers that you turn a dial at the bottom & it comes out of the top (the gel deodorants). It clicks for every 1/4 of a gram which is a 1/4 of a turn, so 4 clicks is one use. I clicked it 3 times at first and applied it, then one more click after for where I thought I wanted more. It has just one small hole at the top and a dial on the bottom. One click gives you the amount of a small pea, absolutely no waste and no having to try to scoop it out of a jar. I haven't checked the website but its www.Topi-Click.com I didn't have to order it or anything, Moe the compounding pharmacist just put it in one and said it would be much easier to measure (and cleaner too)

    Also the pharmacy didn't label it Scream Cream as he thought it would be harder to claim it on insurance. He just listed the ingredients on the label.

    So thanks again Gals, Hugs Suz

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  • suz45
    suz45 Member Posts: 796
    edited December 2011

    Forgot to add Moe is looking into the cost of compounding me a 500 gram jar since it takes the same amount of time. Hoping it will be a big cost saver as in Canada it cost me $140.00 for 30 grams. If you think about it as per use its not as bad, less than $5 per session.

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  • Frapp
    Frapp Member Posts: 1,987
    edited December 2011

    Thanks for the update Suz.  So many are endorsing this, I think I'm going to have to suck it up and ask my doc.

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  • jancie
    jancie Member Posts: 2,631
    edited December 2011

    Suz - so happy for you!!  I believe it is worth the wait and the hassle of getting it since it does work so very well.  I also give it 4 stars out of 4 stars!  Heck I would give it a million stars if possible.

    Frapp - do ask your doctor about this and get some!  However, now that you have responded here you MUST give us an update! Laughing

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  • suz45
    suz45 Member Posts: 796
    edited December 2011
    I checked out the website for these dispensers http://www.topi-click.com/ I know I mentioned it above but that was a long post. The compounding pharmacy will carry them, but I bet you have to ask for it. It dispenses such an exact amount at the top (pea size for each click) and you just swipe your finger across the top so you can apply. Works soooo well.
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  • Annabella58
    Annabella58 Member Posts: 2,466
    edited December 2011

    Wow, this is an amazing thread...I am hoping I am OK to be on it, since we all seem to be jumping on this scream cream...

    Question tho....If it makes you numb, aren't you tearing anyway and just not feeling it?

    Thanks!!!

    (we had success with Very Private moisturizer used regularly, and KY sensitive, buckets of it.

    Cranberry supplements have done away with UTI for me.)

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  • lauri
    lauri Member Posts: 267
    edited December 2011

    My onc told me "although the pdf does provide the ingredients, I do not know enough about the compounding procedures to know how to write for this"  Has anybody any suggestions on this ?? (Will ask my primary when I see him in a few weeks ... but since he's old-school 65+ doctor, with mostly 70+ patients, I'm not sure he'll be much more help.)

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  • suz45
    suz45 Member Posts: 796
    edited December 2011

    Lauri - I just asked my GP for it (gave her the name) and handed her the ingredients. She wrote out the ingredients on a prescip & wrote X 30 applications. Lol she didn't want to do the math & get it wrong. I then went to the compounding pharmacy and explained what it was and gave him a copy of the pdf write out along with the prescription sheet. (just to make sure they were both the same) All they do is mix it up (like a recipe) and add the base cream. Its pretty easy. Just tell them you have a compounded RX that you need.

    Anniealso - Personally, what I found was that the SC which you apply about 20 minute before hand actually gets your body to naturally loosen up and create its own moisture as well. I didn't use quite enough lidocaine as I didn't want to numb DH. So I felt it a bit after the fact.. which would be normal for anyone after doing without for so long. But, I didnt get that painful razor-blade feeling or tearing that would last for days, just feel a little sore (rambunctious DH)

    Hope this helps, Hugs Suz

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  • kks_rd
    kks_rd Member Posts: 363
    edited December 2011

    OK here's a dumb question. How is a compounding pharmacy different from a regular pharmacy?  I wouldn't know where to start....

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  • jancie
    jancie Member Posts: 2,631
    edited December 2011

    Anniealso - The lidocaine is for pain and yes....I have spotted a couple of times afterwards because like Suz's dh - mine dh was rambuntious. 

    Like Suz said - the scream cream will just allow your body to lubricate naturally which in turn allows you insides to be more accepting to those girthy dh's.

    KKS - google "compounding pharmacy" and your city and state and your should find a compounding pharmacy - typically the smaller family owned pharmacies.  Target, Walmart, Cosco, Walgrens, etc. are not compounding pharmacies.  A compounding pharmacy is able to take a list of ingredients and make a batch of whatever you are looking for.  The scream cream is made up by the pharmacist upon order.

    Lauri - I got the same response from my oncologist -he didn't know how to write it up.  He had me go to a compounding pharmacy and have them fax a form for his approval.  I went to the pharmacy with the PDF file and gave them my doctor's name and fax number and explained to him (the wonderful cute guy) that my doctor was just waiting on something to sign because he didn't know how to write it up.

    Funny thing is that when my oncologist checked his computer this last appointment - the stuff was listed as scream cream on my records.  Oh my.....I so wish they would change the name!

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  • Enjoyful
    Enjoyful Member Posts: 3,591
    edited December 2011

    OMG my ob/gyn refused to prescribe the scream cream for me!  Something about vasodilators and their effect on the heart muscle.  This lady gave me a scrip for ESTROGEN, for crying out loud!  Next stop, GP.

    Good grief!

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  • scuttlers
    scuttlers Member Posts: 1,658
    edited December 2011

    Oh. For crying out loud! The vasodilatation is local and not systemic. Maybe the pharmacist could call the doctor. That doctor probably thinks sex itself has a negative effect on the heart muscle, after all we are terminal and what on earth are we thinking??!!



    The SC (or esseee as my DH affectionately calls it) jump starts your own body to lubricate (and with the lubrication, relaxation seems to follow) and we have not had dry tearing issues at all.



    I took the PDF to both the oncologist and the pharmacy. And yes, a small, family pharmacy is where it is possible to have it compounded. The portion dispensing jar is a MUST.

    and enjoyous - waiting for a screenshot of your OB/GYN's ass ...

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  • Enjoyful
    Enjoyful Member Posts: 3,591
    edited December 2011

    LOL scuttlers!  She is SO screen-shotted!

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  • texasrose361
    texasrose361 Member Posts: 1,829
    edited December 2011

    Reaching a climax isnt an issue for me but its like my insides are swollen, like the cervix or something- so intercourse can be painful most times, i have talked the gyno (no help there) he sorta just blames EVERYTHING on my chemo- everyhting "looks" normal...

    Will scream cream work for that or should i seek another gyno to get to the bottom of it????

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  • sling99
    sling99 Member Posts: 106
    edited December 2011

    Thank you all for this info. I've got to try this because its been just way too long! My onc could only recommend the usual stuff like astroglide, KY. Those didn't help one bit. Onc prescribed Vagifem but I am reluctant to use more hormones (already on tamoxifen). Found out about Pur on this forum somewhere and that helped me get farther but still pain even the next day. It was if the insides were so thin something was going to rip. This is one side effect of chemo that the onc didn't mention! If SC gets the blood and natural juices flowing, does that help plump up the insides or at least make it feel that way so no more hurting? Don't see my onc for a while so will ask my GP for prescription.

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  • jancie
    jancie Member Posts: 2,631
    edited December 2011

    Texasrose - do you mean swollen because you have shrunk up inside there?  When I think back - it probably appeared to me that I was swollen inside when actually I just got more and more narrow.  The gyno could barely get a teenager size speculum inside of me.  I asked for the smallest size. 

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  • Enjoyful
    Enjoyful Member Posts: 3,591
    edited December 2011

    Okay, just faxed the recipe to my GP along with a very sad note BEGGING for this stuff.  The GP's receptionist got a good laugh out of it.  Glad someone's happy about my plight....*grumble*   She's screen-shotted, too!

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  • scuttlers
    scuttlers Member Posts: 1,658
    edited December 2011

    I also printed about four of the "this really works" from this thread (copied and pasted, without any identifying words, just the what it does for me part) and stapled it to the PDF for the Oncologist's review.

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  • Enjoyful
    Enjoyful Member Posts: 3,591
    edited December 2011

    That's a good idea!  Wish I had done that.  If he refuses to write the script, I'll screen-shot HIM too!  HA!

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  • suz45
    suz45 Member Posts: 796
    edited December 2011

    I did the same I copied a few of the "this works & how to use posts" and gave then with the pdf...

    I don't get it, why doesnt anyone (dr's) think that this is a really big deal! Shoot its our relationships and the Cancer Drugs did it! We are giving them the fix for it.

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