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

Jennt28

I'm in Australia and gave the printout to my onc yesterday. Same reaction - dubious... But did promise she would look at the ingredients and dosages. Said some of the ingredients were "serious" drugs. I'm not holding out much hope here...



Jennt28

Enjoyful

I'm guessing the "serious" part is the vasodilators - I think one of my docs mentioned that it the cream contains nitroglycerin.  

suz45

Heh heh heh, Love the scootaloo, but your going to confuse me (not hard to do) lucky you kept the avatar. WHOOO HOOOO ya got it! Time to make a friends with benefits call or a trip to Canada. We know how to stay warm.

Jenn, I think printing off a few posts from here where Oncs have given the green light helped me to get mine right away (I know my gp kept a copy for herself) The compounding pharmacy told me exactly what each ingredient does but I can find the paper I wrote it on. I know that the "one that is hard to get" is now used in a pill form so they cant compound it. One of them is also used for diabetics. I'll try to see if I can get him to write it out for me then post it here in the next week if I dont find it.

hugz suz

wow over 8000 views on this thread!

lindatwo

Okay, went to my oncologist yesterday with the SC "recipe" in hand.  He was very attentive, listened to my whole spiel and said he would check with the local compounding pharmacy and see what he could do. He was very open and thanked me for printing out the ingredients.  He said if it is helpful, he will recommend it to other patients who are also having this SE.  As we walked out of the examing room he said " I will call you next week about this", and I said "Oh, okay, I will let my HUSBAND know that I won't have an answer for a week"!   He grinned and said "I will do it as soon as possible".  (I just love him!).  So I am very encouraged and excited to give it a try!  By the way, I'm sure my DH would croak if he read these posts.  One time when I mentioned a conversation I had with my sister, he said  "Do women really TALK about that stuff?"  LOL.  Thank goodness we have each other.

Enjoyful

Yay for understanding oncologists!!  I love mine; he's the only one who'd listen to me seriously.  The other doctors are still screen-shotted.  *muttering darkly*

S(E) 

lindatwo

It IS nice to have a doctor who takes you seriously.  My dd & I were discussing that yesterday.  The family dr. we had when she was a teenager treated her like an idiot.  Now that I have had to deal with so many doctors I am much more sympathetic and feel like I did her an injustice by not dealing with it at the time. (I guess I was just as guilty, I obviously didn't take her seriously enough either).  Anyhoo, can you screen shot him?  I have a couple of other doctors I could add to the list too!  Aren't WE hiring THEM?? Back to the Scream Cream, when I commented on the name of it, my onc said, "Yeah, we'll just call it SC, and he blacked out the word Scream.  Also when I said we had a compounding pharmacy in our small town, but I wasn't sure how I felt about filling the RX where everyone knows everyone, he said he has a compounding pharmacy that he uses all of the time in "the city", and would call and talk to them. Now it is just a matter of crossing my fingers (and legs!) until he calls me back.  I am so thankful for all of you on this thread for sharing!

rgiuff

Does anyone know if there are compounding pharmacies in NY, or more specifically on Long Island, that would make this?  I'm assuming I can't just go to my neighborhood CVS to get this filled.  And how pricey is it?

lovinmomma

I took my copy to my onc on Thursday and she said she had not heard about it, but did not see anything that would bother her to prescribe it. She asked if she could keep the copy and I said yes. She said she had lots of women that this would really help!!!!!! She was calling the copmpounding pharmacy on Friday to get it going for me.

jancie

Rose - my pharmacy said that it would cost $50 without insurance and that is enough for 10-15 times.  Maybe more for others but I use quite a bit.  CVS pharmacy won't do.

I went to google.com and typed in compounding pharmacy, long island, ny and got at least 7 hits for pharmacies in the Long Island area.  I don't which one is closest to where you live.

jancie

I saw my oncologist on Tues last week.  I told him that I only had 1 refill left of the SC and that I am going to ask the pharmacy to send in a request for triple the amount.  Apparently DH and I are making up for 2 years of lost time

My onco was thrilled that I wanted to get more of it and I have this sneaky feeling that maybe his wife is using it because he was just grinning way too much.

suz45

Edited as I posted on the wrong thread..

that said, good to see more doctors jumping on board with this

kriserts

Rose, maybe Bigelow's in the Village? Think they're on 7th. A friend of mine gets meds compounded there for her cat. So it sounds as if they compound.

Also, a doc here in NYC had me order high-dose Vit D from this place, so maybe you could give it a try. It's mail order, they're in Chappaqua: http://thehealthychoice.net/

cfdr

I will be asking my med onc and PCP about this as well...fortunately both are women! My MO says that daily moisturizing is key, and that Replens can  be used daily but there's no reason to go to that expense. She suggested making my own suppositories out of coconut oil or crisco and freezing them, and using them daily....yeah, that sounds pleasant! And I can't wait to spend a Saturday afternoon rolling up little balls of grease to freeze.

Cyborg

Cfdr

Made the coconut suppositories and they are great

cfdr

Cyborg, how did you make them? Do you have something to use as an applicator or just insert them with your fingers?

Denise2730

I want to laugh but I don't want to insult anyone here. "Rolling up little balls of grease". I'm sorry I can't help it. ROFLMAO!

This is one of the few times I'm glad I'm a widow. I don't have to worry about sex right now.

Denise

cfdr

Has anyone tried "Dream Cream"? It's non-prescription, different list of ingredients, but was also developed by Dr. Kaminetsky.

 http://www.dreamcream.com/

bedo

OK, going to the oncologist next week and the surgeon tomorrow.  What do you do, ask if they will write a script for Scream Cream?  I'm afraid they will look at me like, Whaaatttt?  Arimidex is doing a number on me.

bedo

 Deleted. Dtr came into room. Very nosey. Nothing exciting. 

Enjoyful

I need help with application/amount.

So I followed the directions and applied a pea-sized amount externally.  Nothing.  The following night, I applied some externally and internally (though not very far in).  Other than some warming, I noticed nothing different.  Now, this is just me and I haven't done anything...er...penetrating but I'm almost afraid to now.

What am I doing wrong? 

gentianviolet

Scootaloo,

Perhaps a pea size amount works for some however I used more than that.  My directions read to apply .5 MG.  I used a pea size for the external and large lima bean size internally.  Hope you can find the right amounts for you.

I believe Jancie uses much more.......perhaps she can give you more help.

DFC1994

I went to a sex therapist for the VERY 1st time in my life,actually hubby went with me. We went to try to get our sex life  back and get past this pain when trying to have sex.I say trying because we have not been able to for 2 years,since I had my ooph. anyways she had us get NEXXUS humectress hair conditioner and mix it 50/50 with water and I be darned,it has helped so much already. Not full penetration just yet(sorry)TMI. But halfway there without pain.It is the best by far of any lubes we have tried. also got some coconut oil,haven't tried that yet.

I was a little scared at first thinking it may make me itch or burn but nothing at all so far.

I will try the coconut oil soon.

jancie

Scootaloo - Jancie waves hello

I put at least 2 lima bean size on my clitorus, 2 lima beans inside the labia area and at the mouth of the vagina.  In addition I put 2 lima beans inside of me as far as my finger can reach.

I then wait 20 minutes.  No, there is none of that "I can't wait for insertion" type feeling but you will find that your body is lubricating so there is some arousal with it - just not the "I am going to scream if I don't get any" type arousal.

You might want to do those exercises also where you squeeze inside - do that on and off for 10 minutes - you will definately feel different.

cfdr

I'm recently post-chemo with just a smattering of ultra-short hair. I love the idea of going hatless to the salon and buying some fancy NEXXUS hair conditioner! I just hope they don't ask what I plan to do with the conditioner...

suz45

Im gonna use clicks instead of amounts when describing SC & Lido. My prescription dose is:

1 gram of SC = to 4 clicks. The pharmacy actually made me enough extra SC to use 5 clicks each time just in case I needed more. Each click is 1/4 of a gram, the size of a small pea. 

Now here's what works for me... I say DH when writing because Im describing DH & I. You can substitute DH for whatever partner or toy you have or use personally.

I use about 2 clicks on & around the clitoral area (gently massage it around) then 1 click around the labia/opening, then another 1-2 clicks internally... this one I put in just a click at a time so I get it everywhere I want.

There is no instant stimulation, but after about 20 minutes with a bit of cuddling or putting on sexy underwear I start to feel moist.. inside and out. Jancie is right... its not the "Im gonna scream for sex now" but it starts to feel very naturally stimulated..

Then I add to this some sort of stimulating from dh or vibrating toy externally. Note - the vibrator itself is a really good one and at this point is enough to bring me to an orgasm if I want it to (this would be if I was alone)! The interest is now definitely there! Up until now its been all about me.

Yup, I obviously have DH's attention. This is where the lidocaine part comes in, I squeeze some on my finger tip and apply it to the areas that I would normally have very sharp dry pain with intercourse (avoid clitoral area or it will be numb.. bad idea) My pain is at the lowest part of the vagina opening & same area but about half a finger internally. I dont apply a lot of this as I dont want dh to get too numb (especially the first time) the lido can tend to make him last a lot longer & be more rambunctious than normal. Thats ok when you want a "long drawn out night", but for most of us this is the first in quite a while.. less is better as its been a long time since we got to utilize our kittens in an enjoyable way. I would suggest to your partner that you want gentle sex the first few times so you dont look like a cowgirl the next day

If I were to have intercourse the SC has gently made my body lubricate & soften itself, and the lido has numbed the pain in advance that I get when Dh enters me. This should all feel natural... Dh or a toy will still have to work at bringing me to an orgasm... it could be before, during or after. But in my house everyone has to get their cookies... its not a one way street.

That said...when I use SC in a complete non-sexual way it does not stimulate me.. it makes me feel like my old (young) self in a natural way. Like right now Im sitting here and when I think about it I feel very dry inside... if I where to use the SC right now (just one click) rubbed around externally, my vagina would feel good... as in not dry anymore inside & out. Its a very pleasant feeling.

This is pretty personal stuff & quite a few gals have posted in the last 8 pages what worked for them too. This is just what & how it works for me. I really hope its clear enough... Everyone will be different just like in real life our sexual preferences are different. I really hope you find what works for you! Ive embarrassed the heck out of myself now so Im gonna go make a cup of tea.

If someone finds it doesn't work at all for them this would be good for everyone to know. But please get your refills... I'll buy then from you as I have to pay $150.00 for a small 30 gram jar..  Hope this helps

 Hugz Suz

edited  for sp

Oh & yes doing keegles (sp???) help to stimulate... the tightening exercises Jancie is talking about

lindatwo

Well, went to the compounding pharmacy today and picked up my SC.  Yesterday I picked up the Lidocaine, but I now see that mine is gel not cream, and is 2% instead of 5.  Also, the nurse from my onc's office called me yesterday and said that the pharmacy knew what the cream was, had several patients who used it, and they use a little different formula.  They said some of the ingredients do not make the cream any more effective, just make it cost more.  They did say that if it did not work for me they would make it the way the print out said to.  It still cost me $55.00 for 5 grams!  Supposedly I can use 0.2 to 0.5 grams per use. Of course my insurance denied payment.  Did anyone else get their insurance to pay?  I think I may contest that.  It's ridiculous that they won't pay for treatment for a side effect of cancer treatment.  Anyway, I will let you all know what the verdict is tomorrow!  Has anyone tried this and NOT had it work??

By the way, mine came in 5 syringe-like tubes with 1 gram each.  I want to use GOBS of it, but seems like I may have to try with less first.

suz45

Linda, I think a few other girls had them in a syringe too. In the earlier posts... I wonder if their pharmacies gave them the the same thing. 

I know my compounding pharmacy said that all the Rx ingredients were important & He followed the formula exactly...maybe the non-prescrip was different? Also yours probably has more Rx in it than compounding base cream. Hence the .5 grams instead of 1 gram per use, yours is probably much stronger. I was pretty adamant that mine had to be exactly the same because I was afraid it wouldn't work if  they changed it. I'm also in Canada so mine seems to have cost a lot more than what most gals in the US are paying. So far I think their paying about $30- $50 for 30 grams. I paid $150 for the same quantity but.. there was only one pharmacy in Canada that had one of the Rx ingredients and it was on the other side of the Country (supposedly a very old type of drug that they rarely use nowadays) I might have had the shipping cost included as well. Canada also tends to be behind the States with a lot of drugs... might be ok there but not passed approval here yet.

Not sure if I can get my prescriptions in the States... its definitely worth looking into before I order the next batch. I live less than a half hour from the Washington border, plus the lineup wait. Guess I'll ask my GP next time I go in... soon as I have no repeats on it.

I don't understand how they can charge you that, then say they will make the other if this doesn't work? (Im sure it will if they suggested it) Would be cool if they replaced it at no cost!! This way you could compare them both & let us all know which one is better... teeheh... take one for the scream team (Im cracking me up... its the drugs) also did they say what the compounding one would cost compared to the one you got?

Someone did get theirs covered by insurance but don't know who or what page it was on.. or if it was on the Canadian board where I re-posted this thread?? Mine wasn't, even though the Dr said it was  "chemo induced vaginal atrophy" (now thats cracking me up) ours Insurance doesn't cover Viagra either... so I guess that might be why. Last time I saw her She was putting in a special application through the Gov palliative plan but they didn't think that would work either.

Oh and I dont think the lido gel over cream will make too much difference... unless it turns sticky from friction.. some use non-prescip EMLA cream and it worked for them too.

Sorry about the long post again... I'm bed ridden today so I have way too much time on my hands and am trying to relieve my boredom on-line  I don't do "all day in bed" well.

Good Luck & Do Tell  Hugz Suz

Enjoyful

suz -

Many thanks for your detailed instructions!  I now have hope.  :-)

jancie

My insurance paid a portion for the SC.  It cost me $34 whereas without insurance it will cost $50. 

suz45

Scootaloo no screenshotting me arse! Honest Im a good little peep. Yes I type/talk WAY too much and my puncuation is always in the wrong spot. I talk the same way.... without taking a breath.

Jancie, next time you go in can you do me a fav  could you ask the pharmacy if there allowed to make Rx from a Doctors fax for out of State or Country then deliver by mail. I have a post office in Point Roberts, WA that I can use (would order 6 months supply & have the Doc double my dose to twice a day) This way I could personally clear it through customs so as not to have a hassle. Would really appreciate it (((extra hug)))

hugz Suz