e-string works great

IrvineFriend · 04-21-2014, 08:12 PM

I thought it was really brave when one of our members posted about discomfort during sex which is a symptom of menopause. I'm still in my 40's and it really inspired me to resurrect that aspect of my life now that I'm over the really hard stuff. To be honest, once on Tamox I lost all interest. My Oncologist had no problem prescribing the e-string estrogen ring and it really helped. My partner has been so great and so loving that I didn't want to take that aspect of our relationship away. Quality of life is also important and I'm glad I had that conversation with my Oncologist. So I'm going to show some bravery and let you all know that if you still want that lifestyle element back, it works

And I'm ER/PR slightly positive for one of the cancers but this has the least hormone released systemically. If you sign up with the company they reduce the co-pay in half

AlaskaAngel · 04-22-2014, 11:59 AM

That's wonderful, Julie! I do think sharing that info is so helpful, especially for those who are not far out from diagnosis or treatment, so that they might benefit.

On the darker side, age matters, as well as often the amount of treatments and type of treatments. So many times people post their experience without giving their age. Posting your age was helpful, Julie.

Here's one more anecdote, just for another perspective:

Although I am strongly HR+, my onc prescribed the E-string for me as well, even when HR positivity was not thought to be an exception. I was 51 at time of diagnosis about 12 years ago. I used it for a while and got by in that it reduced the painful dryness (and I think it probably helped me to avoid dry skin and thinning hair, as well as preserving more of my vision for a longer time). So maybe it had some systemic effect, but still... I've had no recurrence, and it DID help some for a couple of years. It didn't increase libido for me, which has been pretty much zero since treatments in 2002.

A.A.

suzan w · 04-22-2014, 01:05 PM

Well said, AA. I tried everything, including the e string. Nothing really worked. I was 54 and post menopausal when diagnosed. Pre cancer, everything was in working order!! I attribute much of my vaginal discomfort/ pain to the terrible side effects I had with A/C. Adriamyacin/Cytoxan. I had painful mouth and vaginal sores. I don't think that arimidex helped the situation either. Personally/ when I would read about the good results (mostly advertising claims as my oncologist told me that nothing really worked) I would feel so defeated that nothing was working for me. I would get my hopes up, only to have them dashed. I am glad to hear that you have had good results, Julie.

jaykay · 04-22-2014, 01:21 PM

I used the e-string my first go round with femara. Tamoxifen didn't affect me too badly even though I was post-menopausal. The femara was a killer, though. Oncologist recommended e-string, which did help with the dryness. Used it for about 2-3 years then stopped. I didn't expect it to help with libido and it didn't.

BTW, AA - I was 53 when I first used the e-string.

Julie - glad your onc recommended. Funny thing is that my gyn objected because of my ER+ while my oncologist said the amount of estrogen released was negligible

Best
Janis

AlaskaAngel · 04-22-2014, 01:41 PM

I have a LOT of sympathy for both of you, Suzan and Janis... The myths about this problem among health care providers end up leaving the average age patient struggling and then frustrated and very disappointed. Sure, we can "accommodate" our partners out of love and use alternative methods of expressing physical contact, BUT.... only with steady sacrifice of our own pleasure.

The outcomes are a bit more complicated for HER2 positives as compared to the larger group of all bc patients. The larger group of bc patients is made up overwhelmingly of those who are age 50 and predominantly MUCH older, whereas the group of HER2 positives includes a few more younger patients.

A.A.

P.S. A couple of years ago I attended an introductory session for newbies at the major cancer center where I had been treated. I limited my input in order not to frighten newbies there, but talked with the oncology nurse presenting the session. She insisted that my situation was "rare". Denial on the part of health care providers is truly unpleasant and unwelcome.

AlaskaAngel · 04-22-2014, 02:38 PM

At least one other potential solution for us remains in limbo.

I've been following the development and clinical trials for the use of ospemifene for many years now. I tried to get into a clinical trial for it, but could not because I'd had breast cancer. But it has been approved for general use for these problems. Interestingly, it, like tamoxifen, is a SERM.

I would think a SERM that could help with these issues logically could be a better choice than tamoxifen, but based on my attempt to participate in a clinical trial for ospemifene as a breast cancer patient, that doesn't seem to have been investigated thus far in our behalf, possibly on the usual basis that they don't want to put any of us at any additional risk simply to find better solutions for our care. I personally don't agree with that, although can understand if others prefer to minimize QOL to minimize risk. However, like the use of the E-string, it should still be available to those of us who are willing to try it.

Adriana Mangus · 04-22-2014, 06:30 PM

Hi Julie,

Glad you got your groove back! I tried it a few years back and it does work.

So, ladies there is a bright light at the end of the tunnel, just be brave to explore it..

Love,

Adriana

IrvineFriend · 04-23-2014, 05:25 PM

I was highly productive/hormonal at my diagnosis at 48 and still having regular periods. Not even close to menopause. I still have breakthrough periods on Tamox so I think not being close to menopause also helps. With our population aging, they're going to need to find something for libido though. 50 is around the corner for me.