Everything No One Tells You About Cancer and Your Sex Life

karen1956

Agree with Allison. Ask your pcp or gyn for a Rx for the e-string. MY oncologist agreed with my using an e-string. I forget who wrote the Rx, either onc or gyn. But it really didn't do much for me....Sex? whats that!!!

anotherNYCGirl

My current onc said no to e-string, vagifem or anything estrogen related. My previous onc said ok to vagifem, but i did not find that it helped much at all, so I stopped it. I am currently trying Hyalogyn and using coconut oil on the other days. So far, this regime seems better than the vagifem!

kareenie

At one time my onc and gyn allowed me to have an Estring.

I always pronounced and thought of it as Est-Ring it is a ring not a string.

Of course that was before my recurrence. Now it is off the table.

It was a QOL tradeoff and low risk they felt at the time as the estrogen is local does not circulate in the bloodstream. Worked pretty well as I remember but some docs are firmly against it under any circumstances.

Frill

AnotherNYCGirl: We're both on the same regimine. Maybe I just need to be more patient. I'm still going to bug the heck out of the MO when I see her on Monday. If they'll let me have a Progesterone IUD, I think a little somein' somein' after 7 months now - I'd even try it on a limited basis to see if it works.

Dafne

Logang, how do you use the coconut oil, I mean how do you apply it? Using a syringe or something similar?

How much and how often do u use it? Did you choose a bio oil?

Thanks!

amylsp

@Dafne, store the coconut oil in the refrigerator so it remains solid. I just use a butter knife to scoop out a small chunk (about the size of a fingertip) and insert it up into the vagina with my fingertips. Easy as pie. I try to do this every evening before bed and sometimes first thing in the morning as well.

Logang

I don't even refrigerate my coconut oil. It is cool enough in my bathroom that it stays semi solid. I just use a finger for application. The amount for me took a while to get just right, but it doesn't take much. I use mine twice daily, in the morning and just before bed.

Dafne

amylsp and Logang, thanks for the info girls! You rock!

yoga_girl

'Mona Lisa Touch' Laser – Clinical Trials

Vaginal atrophy, also known as atrophic vaginitis, is an uncomfortable condition that many women suffer from in silence.

Vaginal atrophy is often caused by hormone changes associated with menopause, but may also occur in women who experience decreased estrogen production due to cancer or breastfeeding. It is characterized by thinning, drying, and inflammation of the vaginal walls and causes intercourse to be painful and may also contribute to problems with urination.

http://www.medicaldaily.com/fda-approves-mona-lisa-touch-laser-vaginal-dryness-caused-vaginal-atrophy-313184

http://smilemonalisa.eu/clinical/

http://www.clinicalconnection.com/clinical-trials/listings/location/Utah/Mona

https://clinicaltrials.ucsf.edu/trial/NCT03124160

Many hospitals are now applying for grants/clinical studies.

Check for Mona Lisa clinical studies in your location, hospital, or clinic.

Be sure to do your research, have a complete exam by the medical professional offering this procedure during a consult. Discuss the prep, procedure, device to be used, possible damage to tissue, healing, bleeding, discharge and recovery. Although this device is FDA approved it is still considered investigational and is not covered by any medical insurance regardless of the cause to include cancer. To date studies are limited to very small populations, more testing is needed on all populations, reactions and combinations of vaginal atrophy.

jamigb

What? That Mona Lisa Laser thing sounds AWESOME! Has anyone had this procedure done or know if it's even offered in the US as of now?

corky60

smilemonalisa.com

Although my urologist offers Mona Lisa Touch I haven't had the procedures. Because I experience urovaginal atrophy, she said that I would still have to use estrogen to treat the urinary atrophy. Also, Mona Lisa Touch is expensive and not covered by most insurance.

Trvler

I am still on the fence on this Mona Lisa thing. I have seen several women say it's great but some of the online reviews are iffy.

macb04

Hi All.

I had 3 Mona Lisa treatments. I thought it helped with the dryness a little, but seemed to cause me to feel more painful tightness with sex. I decided instead to go back on Prescription Compounded Vaginal Suppositories of Estradiol/Hyaluranic Acid and Vitamin E for 14 days, then on to Estriol Suppositories 3 times per week thereafter. (I get the Prescription for Estadiol and Estriol from my Naturopathic Doctor) It is feeling immensely better in my vaginal area, and I don't need lube for sex anymore. Now I am just going to try Intensity Vaginal Kegel/Vibrator Device to see if I can get a decent orgasm again. Not cheap, but I am so bummed having nonexistent orgasms, that I will give it a try and report back.

https://3q7irwdczgu2la3k83jh3jqe-wpengine.netdna-ssl.com/wp-content/uploads/2013/06/intensity-inflated.jpg

Intensity Personal Stimulation Device

Intensity's scientific design heightens the female sexual response, improving intimate experience.

According to the Journal of the American Medical Association, 43% of women experience sexual dysfunction at some point in their life. Sexual dysfunction includes low sexual desire, vaginal dryness, orgasmic dysfunction, difficulty maintaining arousal, and painful intercourse.

• Pelvic Muscle (Kegel) Exerciser
• Inflatable Shaft
• 10 Levels Of Muscle Stimulation
• Clitoral & G-Spot Vibrators
• 5 Speeds – 20,000 RPM Max
• 100% Medical Grade Silicone
• Made In The USA
• Super Long Battery Life
• Easy Cleaning
• Requires 4 AAA Batteries

gardengypsy

Thanks for the link, Mac.

Ciaci

Am I the only woman here who doesn't miss sex? I mean, it was good before all this started, but I now have ZERO interest in it. If you told me I would never be able to have sex again, ever, I'd say, "okay fine... just don't take away my chocolate!" Seriously, though, I have no desire, therefore no interest in doing anything about it.

My husband misses it, I suppose - we don't talk about it - but I take care of him (if you know what I mean), a couple of times a week, so he seems happy enough. It's only been eight months since diagnosis, and maybe it'll change as we keep going down this road, but right now, it is what it is, as they say...

mustlovepoodles

No, ciaci, you're not alone. Its complicated. I was sexually abused from ages 7-12 and i found sex to be...problematic. The DH became seriously ill and the meds they use to treat cause impotence. Of course, he felt terrible about it and tried to make things work, but it was just awful. Then i got BC and Femara happened. And THEN, in the midst of my treatment DH got prostate cancer. Removal of the prostate put the final nail in the coffin of our sex life

At this point, we have agreed that we are happier without sex than we were when we were making frantic and embarrassing attempts to have sex. We love each other tremendously and we spend a lot of time together. Its sad that we no longer have that physical connection, but it's also a relief to me to not have to try.

Trvler

Awww...Mustlovepoo....I am happy that you and your husband ended up in a good place.

I don't doubt for one second that there are plenty of women who don't miss sex. I hear friends and family make comments about their lack of interest in sex all the time. I think for some women, cancer is an reason not to have it.

My body doesn't feel the urge like before but I do it anyway because A) I feel good after and I feel like I owe it to my husband to make an effort.

klvans

Why is premarin more dangerous than vagifem?

klvans

A couple of times on this thread its been noted that premarin is more dangerous than vagifem. Can anyone tell me why?

Trvler

Isn't premarin a pill and vagifem a cream (topical)?

yoga_girl

Estradiol (medication) (Redirected from Vagifem)

Estradiol, also spelled oestradiol, is a medication and naturally occurring steroid hormone.

https://en.wikipedia.org/wiki/Estradiol_(medication)

Premarin is the brand name for an estrogen medication.

https://en.wikipedia.org/wiki/Premarin

yoga_girl

Atrophic vaginitis (also known as vaginal atrophy, vulvovaginal atrophy, or urogenital atrophy) is an inflammation of the vagina (and the outer urinary tract) due to the thinning and shrinking of the tissues, as well as decreased lubrication. These symptoms are due to a lack of the reproductive hormone estrogen.

https://en.wikipedia.org/wiki/Atrophic_vaginitis

corky60

Vagifem is a pill inserted into the vagina.  Premarin is available in two forms: a pill taken orally and a vaginal cream.

klvans

I see. The oral pill form of Premarin would be systemic and therefore more "dangerous" to breast cancer patients. That makes sense. Thank you.

Trvler

Makes sense.

DagnyT

Hi all. I've read through the whole thread and I have three unanswered questions -

1. Are these problems associated with the hormone therapy medications (as compared to chemo)? I will have radiation in a few weeks and they will want to put me on tamoxifen afterwards. Is Tamoxifen alone enough to trigger these problems?

2. Do these problems seem to be more likely with an AI compared to Tamoxifen? I am on the cusp of menopause and was considering delaying the start of medication so I could take AIs - since there are more options.

3. Do these problems go away if you stop taking the medication, or are they permanent?

Thanks

Trvler

I am going to give you my opinion. I have only taken Tamoxifen. So I can't compare to Als. I think chemo can cause some of the issues but if you are not taking any hormone blockers, chances are that the conditions could improve over time. However, you will probably experience some issues with sex taking any hormone blockers at all. It doesn't mean you can't have it get better. In the beginning, I couldn't have sex without lube and now I can.

TwoHobbies

Dagny, I can provide my experience. Initially I did not have chemo or radiation, was pre-menopausal, and on tamoxifen. No noticeable change to my sex life except I did get a couple of UTIs. My doc said add lube, which surprised me because I never noticed feeling dry. I had a local recurrence, was taken off tamoxifen, did chemo first, radiation next, then lupron shots (shot into menopause as I call it) and started AI. I didn't start having trouble until a couple of months after the sudden menopause and AI. I know menopause can cause these troubles - I can't really weigh in on whether its worse with the AI because I did both at the same time. But if you think about it, an AI prevents you from turning other hormones into estrogen, so it could also have an effect.

As first line of defense, I would recommend lube and try not to pause your sex life which I notice makes things worse. Hard to do when we are recovering from surgeries and radiation and chemo and anxiety- I know. If you do run into problems, don't be afraid to advocate for yourself with your docs. I found the ob/gyn to be more helpful than the MO, because they are the "experts" in that topic.

Can't answer on what happens when off the medications. I have at least two more years to go.

corky60

Dagny, my experience only.  I started on Exemestane (Aromasin) and quit due to severe knee pain.  The knee pain went away.  Switched to Tamoxifen and got terrible reflux.  Had to take meds for that and they barely helped.  My MO said that tamoxifen didn't cause reflux but she was wrong.  I quit it and the reflux went away.  Both of those meds caused insomnia and that never went away. Now I don't take any hormone blockers.  I didn't need chemo but did the course of radiation.

Stopping intercourse causes only more problems.  Use lube.  Try everything until you find one you like.  I recommend Sliquid but we're all different.  Some women use coconut oil, cocoa butter or even Crisco!  I also use estriol/cocoa butter suppositories.  That little bit of local estrogen makes a difference with urovaginal atrophy.  It's not supposed to be systemic.

Kali44

Trvler you have given me hope and I thank you from the bottom of my heart.In my mind I feel like one day we can have sex again, maybe not the same way for me but for my husband