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

Hello Ladies . . . I haven't been on the forums for quite a long time, but this issue brought me back.  I didn't even take Chemo, but I might as well have, for the way I feel down there.  It's absolutely horrible.  Problems actually began pre-Breast Cancer with generalized pain of the vulva, and painful intercourse.  I was diagnosed with vulvodynia, for which there is really no generally prescribed treatment.  A lot of physicians still believe that all physical sexual problems are in your head and emotionally related.   That was about age 45.  Then at 48, ER+ BC, treated with two lumpectomies, radiation & Tamoxifen.  Then 6 mos later, 10cm ovarian cyst.  Finally got hysterectomy and BL oopherectomy & cervix removed in June.  Instant menopause . . . gotta love it.  Hot flashes went from 2 or 3 a day to 40 or 50, and are still terrible, although maybe only 10 or 20 a day now, and night sweats.  I'm on Effexor and Gabapentin to try to control the hot flashes - not working.  Vagina and vulva went from mild discomfort to something I can't even describe.  Burning?  Stinging?  Itching?  Tearing?  Like a ring of fire?  Like a knife stabbing?  Do any of these come close?

None of my docs had anything to offer for relief.  They're just like, too bad, so sad - - you'll just have to live with it.  Finally my naturopath wrote me a prescription for a compounded Vitamin E vaginal suppository.  I alternate that with Replens every other day.  But it does not solve the pain and discomfort issue . . . only makes it marginally better and sex is still an experience that I am avoiding because of the memory of the previous painful encounters.  Libido is non-existent.  Now that might be in my head, but who can blame me after the last 5 years?  It's just so disappointing.  It just feels like I'm finished, at age 50.  Now that really sucks.  And believe it or not, the only thing I have found that gives me some relief during the daytime, is . . . wait for it . . . Penaten Cream - - the stuff I used to put on my babies bums when they had diaper rash.

So . . . I said all that to say this . . . thank you for this thread!  It gives me hope.  I'm going to see what I can do about getting someone to write me a prescription for the SC and probably the lidocaine too.  Although, I've tried testosterone cream (just a little dab) and I can't use it because it stings so badly.  Is this really worth a try?  Does the initial stinging or discomfort go away quite quickly?  If this works, I will do the happy dance and so will my DH!  He has been so patient and understanding, but we are both so frustrated!!!!

Janet - since the SC formula is long and some pharmacies don't even know what it is yet - I went to the compounding pharmacy with the formula and got them to send an approval to my oncologist.  I already had the talk with my oncologist as I brought the formula with me so that he could see the ingredients.  My oncologist had never heard of it and didn't know how to write it up so he told me to go to the pharmacy and have them send a fax approval form.  Worked just fine!

We checked out the meds in the system at the next visit and it did list SC as a med that I am on.  I just wish they would come up with a better name.

I posted before about something new my gyn suggested to me a few weeks ago. She suggested massaging olive oil on your lady parts during your shower. I was using replens with some relief but not great. I have found the olive oil to be helping and I'm not using it very long. Less burning to touch & feels smoother.

Janet - you need a prescription for the SC.  What is offered on-line is totally different.  Your onc needs to get screen shotted - talk to scootaloo about that.

lulu - I don't think I could explain it as well as Scootaloo so I will let her do so.

Zumba - the list of ingredients is totally different in the on-line SC versus the ONE we are talking about.

Here is the pdf file for the pharmacy compounding formula.

http://compoundingtoday.com/CNLSharedInfo/DownloadPDF.cfm?Item=Scream_Cream_Handout.pdf

And a printout of the pdf file:

Studies have reported that over 43% of the women in America experience little or no sexual

satisfaction from clitoral orgasm and only 25% achieve orgasm with intercourse. In fact, according to

studies, numerous women between the ages of 18 and 80 do not even know what an orgasm is or how it

is achieved. Whether someone is multi-orgasmic or among the 43% of women who are sexually

frustrated, any woman who desires maximum sexual fulfillment, greater intimacy, and enhanced

relationships stands to benefit from regular use of Scream Cream.

blood flow enhancers and vasodilators. Each ½ gram dose contains Aminophylline 15-mg., Isosorbid

dinitrate 1.25-mg, Ergoloid mesylate 0.25-mg, Pentoxifylline 25-mg. and L-Arginine 30-mg. Dissolved in

a water based hypoallergenic transdermal vehicle. The vehicle is designed to enhance the rate of

absorption and to cause the medication to be retained locally in order to maximize local effects and

metabolism while minimizing the potential for systemic side effects.

sexual relations and gently massaged in. Duration of effect ranges from 30 minutes to 2 hours and

heightens both ease of stimulation and intensity of orgasm.

Patients with a history of sensitivity to any of the listed ingredients should not use this product.

Patients with a history of genital herpes should use this product with caution as L-Arginine may

facilitate reproduction of the herpes virus. Scream Cream is available without L-Arginine upon

request. Onset is identical to the complete product but duration may be reduced.

Scream Cream is packaged in 30 dose multi-dose tubes.

Dr. J. Kaminetsky, New York Univ. College of Medicine; Univ. of Chicago College of Medicine; J

Berman, M.D., I. Goldstein, M.D., Boston Univ. School of Medicine, Dept. of Urology/Continence

As you can see there is no primrose or vitamin E in this formula.  I don't know if the stuff you get OTC on the internet really works but the formula above is what the ladies are using and they are all vounching for it as being totally awesome.

Zumba - welcome to the SC team!!  So glad it worked for you!  Another happy customer!

I ran this past my Dana Farber oncologist and the DF pharmacist (who is an expert researching  drugs and sexual issues) and was told that while the Scream Cream ingredients are safe and probably effective.

However, I got a stern warning that LIDOCAINE SHOULD NEVER BE USED "DOWN THERE" on any nerve endings! That's because lidocaine has been known to "burn out" nerve endings permanently and they never get their sensation back. That would be very bad thing on certain nerve endings.

The one thing I found worked WONDERS for my trashed genitalia was simply applying some melted cocoa butter (food grade) with my fingers on the vulva and a bit internally each night before bed. Within two days I was practically back to normal, plumped up and pain-free, whereas before the pain was so bad I could not even wipe with toilet paper.

Cocoa butter. Whoulda thunk it?

I use so little lidocaine that Im not sure if it would be an issue & I dont use it anywhere that would be pleasure sensors. Im nor a Dr so that definately gives me food for thought... Lots of girls are using just the scream cream.

A bit of input... I finally tried the SC & it really did help. Like I said before I recently have been using olive oil & that has helped also. But I am interested in the cocoa butter. Yippe to less pain!!

haven[t tried the sc yer, but did add ky suppositories there, for daily use.. not the jelly, which is YUCK.. they're calledKY  "liquid beads" and are working well for daily dryness,  better ( and cheaper) than replens, for me... just a thought...

  i'll start there, and work my way up, after the gyn appt..!....3jays

A melon baller?  If they turn too big, you could let them get just cold enough to cut them in half...?

Or...

What about a ziplock freezer bag with the corner clipped, to use like a pastry bag?  If the coconut oil was just slightly chilled (and you worked fast) I bet you could squeeze dollops onto a plate and then stick the plate in the freezer for five minutes or so to firm them up, and then pop them into a jar...? 

The melon baller sounds easier.

My onc also suggested Crisco instead of coconut oil. Somehow that seemed ickier to me, but worth a try if you can't do the coconut oil.