Painful Intercourse cant use hormonal... - SHARE Breast Canc...

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Painful Intercourse cant use hormonal treatments Anybody heard of this topical treatment?

thriverx2
thriverx2

I had early postmenopausal breast cancer just requiring surgery and chose not to take any hormonal treatments for painful intercourse. I have tried so many unsuccessful topical treatments. Then without any genetic warnings I had stage 3c ovarian cancer. I had surgery followed by 5 months (18 treatments) of chemotherapy. As I have been getting back into living again painful intercourse once again was an issue.

I had the opportunity to use a botanical topical drug derived from green tea that was very beneficial to me. It has finally enabled me to" get back into my life" with my husband. Two well known women gynecologists, from NYU are now scientifically testing this drug in a clinical trial so I am sharing the link below.

My husband continues to be my best friend and our relationship has only grown closer as we have faced life's trials and joys together.

I hope that this information might be helpful to other "thrivers" like myself!

clinicaltrials.gov/ct2/resu...

15 Replies
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Thanks for sharing your personal situation with us. I asked a while back about sex and cancer. I have mbc a lot older than you but only been married 8 years to a younger husband. We tease that it’s a good thing when we dated for 6 months we didn’t miss a night. Well that’s changed mostly because it does hurt and I have it in my spine so things we did we changed up. We are very open about talking about it and he understands I need to be careful. However there are many other things to do until my bone strengthening medicine works. I’m glad you shared that info and I’m glad you are feeling well and doing better. What kind of cancer do you have? I’m Her2 Negative. ❤️

thriverx2
thriverx2 in reply to Clair19

Thank you for your support and sharing your journey. I had a double mastectomy for breast after diagnosis of LCIS in one breast and extreme ductal and lobular atypia in both. I do not think that they did receptors on the tissue. My ovarian cancer was estrogen and progesterone positive. Bone wise I am now on Forteo injections to be followed up with Reclast.

My other issue is neuropathy in my hands and feet. It feels like I am wearing gloves and thick socks all the time.

DGigy
DGigy in reply to thriverx2

Try Glutamine supplements it did help me a lot to subside the numbness .

thriverx2
thriverx2 in reply to DGigy

thanks any brand? amount ?

DGigy
DGigy in reply to thriverx2

I am using a brand called nature’s aid L-glutamine 500 mg . I was having it thru chemo too .

thriverx2
thriverx2 in reply to DGigy

got it Thank You! Iam 1 year out from chemo Pacitaxel/Carboplatin and still problem with hands and feet neuropathy.

I take prescription gabapentin, as well as liquid b-complex daily and weekly acupuncture for the neuropathy. All are helping

Hi!

Thanks for the information. I took a look at it and it does not apply to me. The study says it is for women who have not menstruated in a year or for those who have had surgery to remove their ovaries and uterus. My last period was in May, just two weeks after I started my treatment, and I have so far refused to have an oophorectomy. But I am sure this information will be really useful for women who fall into that category.

The last time I saw my oncologist I mentioned that I had started experiencing vaginal dryness since starting treatment and she recommended Vagifem. But as I am oestrogen receptor-positive, I was not keen to use it and she admitted it does contain small amounts of oestrogen. My husband and I have been using KY-Jelly instead and that has not caused any issues and the discomfort is gone.

Take care,

Sophie x

thriverx2
thriverx2 in reply to SophSP

I also do not want anything with estrogen or other hormones that my body can make estrogen out of.

I had same problem!!! Was taking Avllimil which boosted libido but was told to stop because it uses plant estrogen. Now zI just eat watermelon which works for me!

2016: IDC, stage 3A, mastectomy, lymphectomy 6/39, 8 chemo hits ACT, 28 hits radiation. ER+, her2-; oopherectomy to avoid monthly lupron; one year of bogus vaccination+herceptin study...essentially. I was diagnosed at 53.5 years old and was still getting my period monthly, religiously. Then the breast cancer diagnosis and the shock to my system of the treatments and hormone depletions.

I have dyspareunia from (now) thinned vaginal walls. On tamoxifen after bad times with anastrazole and exemesthane.

Yesterday, I looked up this study you posted (THANK YOU SO MUCH FOR SHARING!!!). I wrote to the physician, Lila Nachtigall, who is at NYU (my hospital) about it, even though I am on tamoxifen (my only medication, side effects are muscle cramps which is no big deal given my other chronic mastectomy pain and lymphedema issues...blah blah blah, but not really!). She emailed me today (yes, a Sunday) that she is away and will be in touch. She told me to not consider the treatments I mention below.

Husband is 62 and an every day guy, poor thing. We make do since intercourse is a very rare and an excruciating, bloody mess even when I use lidocaine intravaginally. We make do which is so unfair to him. But, he says I mean more to him than just my vagina.

Hence, gynos and oncs told me I could have estrogen cream in vagina or intrarosa (hormone-derivative steroid). I had an oopherectomy so there is no way I am playing with hormonal options. They also recommended the mona lisa smile intravaginal laser. I explained this in my email to Nachtigall. She said no laser to thinned vaginal walls. She said she may have options.

Doctors and what they do and don't know...

I will keep you posted on my progress. This is my email if anyone wants to reach me directly: shellylkb@nyc.rr.com

I'm in Manhattan.

thriverx2
thriverx2 in reply to ShellyLKB

Great. Keep us posted. BTW I found that the book "Love Medicine and Miracles" by Bernie Siegel MD saved me from being swallowed up by anxiety. My husband insisted that I read it soon after my diagnosis with ovarian cancer (I had had breast years before) so I did and it was so helpful washing away that overwhelming sense of dread that I stayed up all night to finish reading it. Later, I got a very helpful outlook on living forward from " I've Decided to Live 120 years" by Lee, given to me by a friend 9 years out with metastatic breast cancer. Lets keep going ladies!

I’m also ER+, and used Vagifem before diagnosis. About 6 months after all my treatments (surgery, chemo, rads) were completed, I had the Mona Lisa done by my gynecologist. In fact, my vaginal and labia tissues were so white due to atrophy before the procedure that the condition hid a mild case of lichen sclerosis. It was discovered after the labia turned pink again (after the 1st of the 3 laser sessions), which is now being treated. Moisture and plumpness returned, and intercourse has been successful so far after years of pain and avoidance. I know the procedure is controversial, but my gynecologist assured me that having it done by a skilled gynecologist is safe.

Newer heard of it -thanks for the info!

Try walnuts (if your cancer is not driven by estrogen), avocado, watermelon and dark chocolate. These will increase your libido naturally!!!!!

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