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

dragonfly1

Jancie Your post is encouraging-there is hope in sight! My Gyn wrote a script for the SC and I found a compounding pharmacy a week ago. They emailed me that it should be ready early this week. I am so hoping that this will be a solution because the Replens/KY/Astroglide were useless.

I'm getting conflicting info on the Vagifem. One onc tells me no, one onc says it's ok and my Gyn says it's fine even though I'm 90% ER+ (looks like another issue that we are left to make our own informed decision about) My Gyn argues that it's a significant quality of life issue and believes it's safe. My plan is to try the SC first and if I don't have results then I'll likely try the Vagifem. Not having sex at 42 is not an option and I want to feel normal again.

jancie

Dragonfly - once you use SC you won't need those other products.  Besides it is not messy, greasy or slimey.  I would use some here and there even though I knew we weren't going to have sex just to keep my body going in the right direction.  I am low on it now so I am using it sparingly.  I am on my 3rd jar of it already.  I need to get a refill this next week.

I also used the SC with a dilator for the first week before I let my dh know that I was ok again.  I was scared that I would try the SC - have pain - and give up.  After the 3rd time of using the SC and the dilator I knew I was ready to go.

ritaz

Jancie:  Thanks for sharing your experience with Scream Cream...I copied the PDF that someone listed on this thread a couple of months ago when I had an appointment with my new Onc - however - the appointment got rescheduled until yesterday...Holy Cow what a difference a new Onc can make!  My last one didn't listen to me...acted surprised when I had told her how going gluten free had made all the joint pain go away - I had just told her the last appointment (apparently, she didn't feel it was necessary to write it down that time either because the new Onc found no record of it either! ugh!) Anyway, my new Onc was VERY intrigued with gluten free thing as well as the Scream Cream - had NO problem writing the script...She must have said to me at least THREE times, now let me know how this works!!!  LOL  She said if it works that she would take the recipe and post it in the doctor's lounge...How funny is she?  I found a compounding pharmacy about 20 miles from my home...I read the directions to them and she said (like others had posted on this thread) that she would have to order in some of those ingrediants, but she was sure she could make it...

If you are here, reading this thread, then you too are suffering painful sex due to your estrogen blocker...Doesn't make you want to do it, you know?  Hoping for the best with the Scream Cream...Will report back with results when I receive and use it...

OH HAPPY DAYS!!!

Anonymous

Hi, to Scootaloo & Co. - saw this on the active thread, and jsut sneaking in to say you don't NEED ice cube trays to make a suppository with coconut oil.  Small pieces of SARAN WRAP ( cling film to the Brits), roll into "right size" - put in refridgerator.  Done.  It's the onyl thing I've found to moisturize without pain.  A lot cheaper and better than Replens, those awful beads, etc.

1openheart

Scream Cream works!  

Del11

Okay, funny story about SC and Northwestern... I asked my gyn onc for it back in December. I had an appt with her in Feb, and I mentioned the SC prescription to her spacey assistant, who wrote it. She interrupted me and said "oh, yeah, one of our patients told us about that. It really works!".



Well, I'm the patient who gave it to her I took that to mean they prescribed it for other people after I brought it to their attention, and ironically I haven't even filled my scrip yet. This weekend though! You guys have given me new motivation.

3jaysmom

i got a small (they fit into bottles) ice tray, and froze the coconut oil.. the saran wraps a great idea, too.. its working really well for me. i was afraid id be allergic, but a ok..

 ...still waiting!  on SC.....3jays

Anonymous

3jaysmom

and I took the advice of smeone on this thread who mentioned Cocoa Butter - yummy - I used to used it only on my face - now I "chip" a piece ( without warming in microwave, as I do to use it on my face) and have used it as a suppository!  EVEN BETTER THAN COCONUT OIL.  Oh, my what a relief.  I was in SUCH pain ( after 5 years on Arimidex) sometimes even walking could hurt ;(  I'm at the point where I do NOT want to hear if it's bad for E+ to use cocoa butter.  I got a jar at health food store- it's made by AURA CACIA: organic cocoa butter 4oz jar costs $7.  Lasts forever.

Enjoyful

Cocoa butter is awesome!  Haven't been able to use the SC on anything other than a rehearsal since I haven't seen my long-distance unicorn of a boyfriend in 6 months.  GRRRRRRRRRRRRRRRRR

Stanzie

Ok, I don't know what on earth I bought but it costs $27.00! I got it at whole foods, the only thing they had similar.

 It was Raw Caco Butter -  Cacao poder- mayan superfood. Is this correct? Will this work? It came refridgerated in a square thick piece. Really hoping this is the correct stuff as I'm in terrible pain. No BF but just need help for day to day. Thanks.

Del11

Stanzie- That's the stuff!  You can probably find it cheaper online, like Amazon, or maybe even at a health food store.  But that's what I've been using, I bet it'll give you some relief.

Stanzie

Thanks!!!!!

Cyborg

I found some cocoa butter by NOW and it's food grade.

3jaysmom

thanks ladies, for the heads up.. i like the coconut oil, but when i get low, i'll switch to the coco butter.. im at the point, that ill use it, if it doesn't have soy, or er in it!!!3jays

Stanzie

I'm gathering you have to use it every day, yes?

3jaysmom

i do, sometimes every other.. its like the sahara down there. i was in menapause, before, but its sooo much worse, now.. good luck!!!3jays

Pennythoughts

Hi ladies, I saw this thread a few months ago and determined I would get some of this SC.  After almost a year of severe pain, burning, itching, paper-like cuts and bleeding from using toilet paper, (it's pretty bad when you can't even wipe yourself!!), I finally got in to see my gyn today.  I told her that at this point, I'm not even going to consult my onc, and that I wanted some form of topical estrogen.  She agreed that it has become a quality of life issue and gave me Vagifem.  I then showed her the Scream Cream recipe and she promptly copied it out and faxed it to our local compounding pharmacy.  So I'm really curious as to what this stuff will do . . . according to a lot of you, it will be fantastic!  I'm looking forward to it, and so is my hubby.

The other news is that I'll be getting botox injections . . . just not between my eyebrows where I would really like it.  Too bad . . .   A new gyn in her office has been researching and using botox for uro-genital problems.  I have had vulvodynia for several years pre-breast cancer, and the pain/irritation is more of a neuropathy caused by nerves in the vulvar region over-firing.  The problem has only been compounded about 1000-fold by the cancer treatment.  She really believes that the botox will help.  Who knew?

weety

LOL!  Maybe botox can cure cancer as well!

Enjoyful

Wouldn't that be a kick in the head?  I'm holding out for the chocolate cure, myself.

Brendatrue

Yeah, I've invested big money in the chocolate cure myself....

By the way I just got the SC last week from my gynecologist, who had never heard of it until I brought her the info. The compounding pharmacist was going to put 20 mls worth in a huge syringe (that's an opening for a huge joke as well...) and said he could not do vials, but I think I shamed him into putting the cream in small, one use only syringes. He seemed freaked out that I was standing there calmly talking about the prescription; he could barely make eye contact. He also said my insurance probably wouldn't cover it, but I told him to try it anyway, so I could fight the denial; turns out my insurance was willing to pay a whole $10.10 (out of $40) for the 20 doses.

The instructions say: "massage into clitoris in order to achieve orgasm," to which my husband asked, "Are you going to even need me?" My gynecologist said she thought SC should probably be used only externally, but someone else mentioned internal and external use. What's the verdict?

Enjoyful

I think we decided a few pages ago that the best dosage was a lima bean-sized amount on the clitoris, and the same just inside the vagina.  It does burn for a few minutes so be prepared!

tenaj

Thoughts on estrogen cream???? I've used the SC with improved results but still have the"sandpaper" feeling & occasional light bleeding.

Enjoyful

I wouldn't dare use estrogen cream since I'm stage IV and 100% ER+.  You're a lower stage so maybe your onc would okay it?

tenaj

I had asked him a few months ago & he said no. My gyn thinks it would be fine, a matter of quality of life issue. I feel like I've done what I can, chose a BMX, eatting better, exercising, taking femera. Do I tell my onc???

Enjoyful

I'd tell your onc everything so he knows to be more watchful, but explain that it's a quality of life issue.

tenaj

Thanks Scootaloo for some good advice. I will talk with him, but he is a "him" so hopefully he gets the quality of life issue. My gyno is female so it's much easier to talk to her & she gets it.

Pennythoughts

I didn't consult my onc because this is a decision that I had to make based on how desperate I was feeling from the constant pain/itch/burn/bleed/ whatever you call the extreme sensitivities I was having down there.  I was Stage 1, Grade 2, 100% ER+, but the literature all concludes that the estrogen applied locally in the vagina really only affects those tissues, especially at a very low dose.  The oncs/gyns are divided as to how they feel about 100% ER+ people taking it.  Depends who you talk to what answer you'll get.  I opted to do it for myself.  My gyn was absolutely on board, and knowing my onc, he would be as well.  He also believes in quality of life.  Besides, he will get a copy of everything my gyn does, so if he has a problem with it, I'll hear from him.

Have taken 3 doses of the Vagifem (in small tablets and inserted with it's own applicator) so far and feel wonderfully better already.  Only taking it twice a week.  My gyn wanted me to use tablets rather than cream b/c she says with cream, you never know how much you're actually getting, but with the tablet, it is delivering an exact dose of estrogen to the area

Just picked up my SC yesterday and have yet to try it   When the pharmacy got the prescription from my onc, they were actually familiar with the formula and said that they had their own version, which had some of the same ingredients, and some different but was basically the same thing as the SC, and much cheaper.  So I told them go for it and they got approval from my gyn to give me their version of the cream.  They said the feedback is that it works very well.

Compounding pharmacy also gave me an oral supplement called Cordyceps, which is supposed to be renowned for increasing libido. It is also very expensive and like most supplements, must be taken for awhile before finding out if it actually works.  So I guess we'll see . . . anything would be an improvement over what it has been.  Thanks for sharing, everyone . . . this is a difficult to topic to bring up to just anyone, even some doctors.  All the best to everyone who is dealing with these issues . . . they really suck.

tenaj

I picked up the estrace several days ago & have yet to use it yet. I'm nervous but really want things to improve down there. She told me to use an almond size amount every night for 2 weeks & then twice a week. I wonder if it would help if even a smaller amount is used.

etherize

Hello ladies, I've been reading this thread with interest for awhile.  

I developed vaginal atrophy (lovely word) during menopause, and now that I'm about to go on Arimidex, I'm worried.  I was on Vagifem last August when I got the bc diagnosis but stopped it immediately.  Yesterday I asked my MO about using it and he said no way -- or, I could use it but it's a "big risk."  Totally discounted the theory that once the tissues get plumped up, it's not absorbed into the bloodstream.  

I got the impression he didn't think my "problem" was really much of a problem.  Hmmmf.  The attitude (and comment) I always get when I mention side effects is "well, it's better than cancer."  Well, yeah, but?!?

Anyway, thanks to your suggestions, I'm going to try the cocoa butter!  What a lifesaver this thread is! :-)

hrf

I think you should talk to a gynecologist who knows about breast cancer. A MO is probably not the most knowledgeable doctor when it comes to this. QOL does matter.