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Topic: I WANT MY MOJO BACK!

Forum: Sex & Relationship Matters —

A safe place to talk candidly about how your romantic relationships and/or your sex life has changed following your diagnosis and treatment.

Posted on: Oct 17, 2004 12:45PM - edited Feb 9, 2016 12:04PM by Moderators

Mena wrote:

Hey girls,

You know, this loss of libido thing is just unnacceptable. I was in the chat room earlier today and mentioned it and man, you should've heard how many of us are experiencing this problem. I promised the ladies I'd post my rant, so here it comes (or....doesn't ).

If bc were a man's disease, not only would there be a cure for bc by now, but certainly there'd be a plethora of non-hormonal therapies available for whatever the female version is of "erectile dysfuntion". I don't think I'm exaggerating. I'll make the damn commercials myself (no pride here lol).

Prior to the news of my recurrence/mets (August) my husband and I had a phenomenal sex life. I absofreakinlutely loved making love to my husband. (Btw, I'm 43; and as part of tx for mets, I was chemically oopherized with Zoladex and take Femara daily).

I still enjoy loving my love. Emotionally, spiritually, mentally, I do. Even physically I still like it. It's just not rockin' my world, as they say, like it used to. I miss that. And I refuse to accept this as acceptable. It is not. If the genders were reversed, this would be the first &%$#* problem they'd address! Well, ok, the second.

I know the clinical reasons for the low libido, but there's got to be something out there for us that's not contraindicated with treatment. Here's what I've tried so far: a Zen approach; a "go w/the flow" attitude; a "get started and it'll all just kick in" mindset; a "try not to think about it at all" focus; et al.

I'm interested in hearing what the rest of you have to say about this matter, and I know it is an intimate one. But we're all sisters and I do hope some of you will share your experiences and whatever help you've found for missing mojo.

Thanks for letting me vent. God Bless.

Mena

****************************Addition from February 4, 2016***********************************

Hi All,

We've gone through a lot (not all) of the pages on this topic, and tried to compile your suggestions.

Do you feel that this is a complete list of what has been discussed here? Please help us make a comprehensive list of your ideas!


Member suggestions for helping the libido:

Watch romantic movie or soft-porn on Netflix

Romantic music

Watch porn or visit short videos on Tumblr, YouTube, or other internet site

A little wine, or other substance to help relax (e.g. medical marijuana)

Sexual photos

Massage and massage oils

Literotica: Erotic/sexual stories as an alternative to images

Super sexy lingerie or fun clothing

Have partner practice foreplay and/or oral sex

Practice masturbation on a regular basis

Mindfulness, i.e. focus on what your five senses are experiencing in the moment --To keep your thoughts from dwelling on cancer and scars


Member suggestions to improve vaginal moisture:

Coconut oil works best as a moisturizer (freeze small balls to make suppositories)

Vitamin E suppositories

Almond oil

Replens long-lasting moisturizer

Luvena vaginal moisturizer

Shea butter melted into olive oil at a 2:1 ratio

Cocoa butter

Olive oil

Gynatrof gel

DHEA vaginal suppositories

Tip to use an applicator to insert moisturizers and apply a few times a week.


Member suggestion for lubrication during sexual activity:

Astroglide Natural (free from glycerin, fragrance, flavorings, and hormones)

Slippery Stuff (free from glycerin and parabens)

K-Y warming Jelly

K-Y Sensual Silk Liquid (paraben-free)

K-Y Liquibeads

K-Y UltraGel (paraben-free)

Astroglide, X (silicone-based)

Platinum Wet (silicone-based)

Replens silky smooth lubricant (silicone-based)

Sliquid natural lubricants (free from DEA, gluten, glycerine, glycerol, parabens, PEG, propylene glycol, sorbitol & sulphates)


Additional member suggestion to reduce pain:

Topical Lidocaine solution for use at the entrance of the vagina


Member suggestion for sex toys:

Vibrators (e.g. Hitachi Magic Wand, Pink Dot Vibe, Pocket Rocket, the Rabbit)

Dildos for pleasure, to stretch the entrance, prevent vaginal atrophy and strengthen muscles


Member suggestion for estrogen or hormone-based treatments

(MUST discuss first with oncologists as not typically recommended for women who have had breast cancer)

Vagifem® (estradiol vaginal tablets) inserts

Testosterone patch or gel

ESTRING® (estradiol vaginal ring)

ESTRACE® CREAM (estradiol vaginal cream)

Scream Cream - contains a combination of prescription and non-prescription components described as blood flow enhancers and vasodiolators to apply to your clitoris (adding here, as it contains a bit of Testosterone- 0.25mg per dose)


Other member suggestions:

Kegel exercises to strengthen pelvic muscles

Pelvic physical therapy

Dilators to stretch the skin in your vaginal area and re-train the pelvic floor muscles to relax

Observe which antidepressant you take, and make necessary changes

MonaLisa Touch: A minimally invasive laser treatment for vaginal rejuvenation.

Easier if she "goes first".

Regular activity is important.

Read the book, COUPLES CONFRONTING CANCER: KEEPING YOUR RELATIONSHIP STRONG, by Fincammon & Bruss, published by the American Cancer Society.

Share this thread with your husband/lover to create a new bond of intimacy, normalize what others are going through and open communication.

Take a look at this resource: https://sexualityresources.com

Dx 8/8/2004, IDC, Stage IV, Grade 3, 1/20 nodes, mets, ER+/PR+, HER2+
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Posts 211 - 240 (4,308 total)

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Jan 10, 2005 07:23PM richmondnan wrote:

Hooptie,
Oh yes, our own self image is a big factor in the mojo equation...(I think they say the brain is the largest sex organ?)
And yes, its nice to have energy for something besides "fighting" the bc!
Hugs
Nan
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Jan 12, 2005 02:17AM Sphynx wrote:

Just bringing this back to the top so Pharmacygirl can find it.

Dx 2/28/2003, Stage II, Grade 3, 1/3 nodes, ER+/PR-, HER2-
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Jan 12, 2005 07:39AM Ltb3105 wrote:

Seriously folks, I am thinking of seeing a sex therapist. SOMEthing HAS to be wrong with me! I was never that enthused about sex in the first place, but since dx, tx, menopause symptoms, it is practically nonexistent. I mean, the nuns in the convent must be having a better time than I am!

Where do I even begin to find a sex therapist, or should I seek out a marriage counselor?

What do you all think I should do?

Laura
Laura Dx 7/1/2002, IDC, 1cm, Stage I, 0/0 nodes, HER2-
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Jan 12, 2005 08:56AM May64-2004Nov08 wrote:

Thanks, found it! I'm reading!

Love,

Barb
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Jan 12, 2005 08:59AM May64-2004Nov08 wrote:

Hey,

Regarding the dryness issue, does it also mean "outer" sexual organs like clitoris? I got an "infection" that was treated with Metrogel last month. It hurt me when my husband touched my clitoris. That was what made me know something was wrong. Its better now, but I was reading that this wonderful problem could affect that too? What do you all know about this??

Thanks!!!

Barb
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Jan 12, 2005 09:23AM May64-2004Nov08 wrote:

Hi,

Ok I ordered my first "pocket rocket". I even threw in the batteries!!! ha ha ha. At this point I'm willing to give it a shot. I'll let you know how it works out!!!

Barb
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Jan 12, 2005 10:44AM Kathy_Verett wrote:

Barb,

As for the dryness issue, Astroglide works wonders and I saw that it comes in flavors, too. Be careful! A little goes a long way.

God bless your day!
Kathy
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Jan 12, 2005 11:34AM richmondnan wrote:

Y'all, I've found the K-y works great too. I think it is a bit cheaper? Also helps if things take a bit "longer" if you know what I mean
Nan
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Jan 13, 2005 03:36PM Mena wrote:

Hi Rachel -- Yes, several er+ ladies here have or are now using testosterone successfully. My onc said "no", but probably because I'm only in tx for mets for five months and she feels I'm doing well and doesn't want to mess with anything.

Laura, yes, please see this sex therapist and come back with juicy tips for us...How's that for selfless motivation hahahaha...We can start up a coffee-can collection to pay for the sessions.

Are some of us still dry??? Oh my...The aforementioned AstoGlide is great, although not everyone likes it. I do, and I also like the KY Warming Liquid. See how damn easy I am????

Looks like poontang is on the menu for me...Got my results from my first set o' scans. Onc says I have "exceeded" her expectations! I am responding to tx, and my tumors are shrinking! I couldn't think of a better place to share this news than here with my hope-to-be-horny buddies. I'm sure Mojo has helped! And if I believe, then it it's true.
Dx 8/8/2004, IDC, Stage IV, Grade 3, 1/20 nodes, mets, ER+/PR+, HER2+
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Jan 13, 2005 03:44PM Kathy_Verett wrote:

Mena,
You go girl!! So good to hear that tx is working. ALL the tx hahaha.

God bless your day!
Kathy
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Jan 13, 2005 04:37PM richmondnan wrote:

Mena, I am so thrilled to hear your news!!!!!!!!! Hallelujah for good things.
Sounds like some celebration is in order.
HUGS
Nan
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Jan 14, 2005 09:06AM May64-2004Nov08 wrote:

Yeah Mena!
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Jan 14, 2005 09:25AM Sierra wrote:

Hi Gals:

I give up.. sorry you
all have fun for me.. though.
cant take it any more..
LOL..

Think Ill retreat to the North Country..


Sierra )
The Time is Now! Dx 1/2000, 3cm, Stage IIB, Grade 3, 1/14 nodes, ER-/PR-
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Jan 14, 2005 10:02AM scorpiox55 wrote:

YEA MENA!!!!!!!!!!!!!!!!! YEA MENA!!!!!!!!!!!!!!!!YEA MENA!!!!!!!!!!!!!!FANTASTIC NEWS!!!!!!!!!!!!!!!! SHRINK THOSE SUCKAS!!!!!!!!!!!!!!!!!!!!!!!!!! JO

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Jan 14, 2005 11:19AM Ltb3105 wrote:

How do I even BEGIN to look for a sex therapist? Call information and say, "gee, uh, ahem, do you have any listings for sex therapists in this area?" Do I call my insurance people or can i maybe look it up on the net, my ins. has doctors you can find in the network...doubt they'll list them as sex doc's, maybe a marriage counselor can steer me in the right direction???

Laura
Laura Dx 7/1/2002, IDC, 1cm, Stage I, 0/0 nodes, HER2-
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Jan 15, 2005 08:42AM Glad wrote:

Hey, Mena!! Hip Hip Hooray for tiny little shrunken tumors!! I am really pleased for you, honey!
xoxox
G
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Jan 15, 2005 05:01PM SpanArtist wrote:

YAAAAAAAAAAAAAAAAAAAAAAAAAY, MENA!!!!!!!! I am SOOOOOOOOOOOOOO PLEASED and THRILLED for you!!! SUCH WONDERFUL NEWS!!! And nooky too...YOU GO, GIRL!!!

Dx 10/28/2004, IDC, <1cm, Stage I, Grade 3, 0/4 nodes, ER+/PR+, HER2+
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Jan 16, 2005 12:17PM Sphynx wrote:

Got a mojo joke for you ... it may be too risque' for the humor section...

Airline Pilot

A jumbo jet is just coming into the Tampa Airport on its final approach.

The pilot comes on the intercom, "This is your Captain. We're on our final descent into Tampa. I want to thank you for flying with us today and I hope you enjoy your stay in Tampa Bay".

He forgets to switch off the intercom. Now the whole plane can hear his conversation from the cockpit. The copilot says to the pilot, "Well, skipper, watcha gonna do in Tampa?"

"Well," says the skipper, "first I'm gonna check into the hotel and take a big crap.... then I'm gonna take that new stewardess with the huge tits out for dinner.... then I'm gonna wine and dine her, take her back to my room and put it to her big time all night."

Everyone on the plane hears this and immediately begins looking up and down the aisle trying to get a look at the new stewardess.

Meanwhile the new stewardess is at the very back of the plane. She's so embarrassed that she starts to run to try and get to the cockpit to turn the intercom off. Halfway down the aisle, she trips over an old lady's bag and down she goes.

The old lady leans over and says: "No need to hurry, dear. He's gotta take a crap first."
Dx 2/28/2003, Stage II, Grade 3, 1/3 nodes, ER+/PR-, HER2-
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Jan 16, 2005 02:29PM slr38 wrote:

I haven't had that good of a laugh in a long time. Thanks for the belly laugh!

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Jan 16, 2005 03:29PM Ltb3105 wrote:

I've got one too, and it's an airplane joke as well. This one's more risque as I have to use the F word so here goes:

Seems there was gonna be a crash...only three people on the plane, the pilot, co-pilot and one stewardess.

The pilot laments on the fact that there are only two parachutes to make a quick escape.

So the co-pilot goes, "what about Cathy?" and the pilot goes, "oh, fuck her".

The co-pilot replied: "do you think we've got time?"

HAHAHAHAHAHA.

Laura
Laura Dx 7/1/2002, IDC, 1cm, Stage I, 0/0 nodes, HER2-
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Jan 17, 2005 05:51PM Claiire wrote:



Lingerie or no lingerie... how do you feel? Does it make anything any "better" or "sexier"?

Dx 10/3/2002, LCIS, 6cm+, Stage IIIB, 0/9 nodes, ER+/PR+, HER2-
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Jan 17, 2005 09:16PM connierc wrote:

Hi Laura,

IMHO, I think seeking out a sex therapist is a FANTASTIC idea! I have a friend who is in that field, and she has spoken with me quite a bit ... and HER mother had a double mast. So, she understands from whence I come :-) (or not, as the case may be! LOL....)

Now, where to find one? I would first call the local hospital. Indeed, look in a phone book under "therapist, sex' or "sex counselors." This is not something I have tried to do, but if you use the internet yellow pages, you might have some luck.

Also, if there is a BC Support Group in your area (usually associated with the hospital or chemo place), they could help you.

Hey, chemo place! Bet the chemo nurses would be able to help you find someone! They HAVE heard it all, are TOTALLY aware of what happens to us, and could point you in the right direction.

IF I manage to have 1/2 a brain this Thursday, I meet with my local BC Support Group, and I'll ask them about it.

And, no, this is NOT a stupid thing to ask, at all! Maybe it could work for EVERYONE who is interested (and has insurance!), and couples could go, as well -- since that is the idea, right? Of course, if "you" (the collective you) is single, then talking with someone about "getting excited and staying excited long enough to have the big O" is very important.

Laura, thanks for bringing this into the discussion -- STUPENDOUS! WE can ALL benefit from what anyone finds out about this particular subject of sex counselor/ therapist.

Warm regards,
ConnierC
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Jan 19, 2005 05:23PM May64-2004Nov08 wrote:

Dear Claire,

Hi! Regarding your lingerie question. I think it absolutely helps. Here's what I found. I had a mastectomy with a reconstruction that didnt go to well. I have about 80% of my right breast. I could never find a bra that fight right or that made me look "normal". My husband went on Victoria's secret website and was "looking". He showed me a padded bra that had no underwire. He ordered two of them for me for Christmas. I was very skeptical. Well they look great! It did wonders for my self esteem. I look balanced again. I ordered some of their lingerie and it looks great. It makes me feel better about myself. That and some KY jelly and warming lotion and things are working out for us. I actually had a pre BC orgasm the other night. I was so happy because I was beginning to think it would never happen. I had my last treatment in June 2003. I think what helped me was the lingerie/bras. I just keep them on and in my mind I feel like "me". Does any of this make sense? Anyway, I've been meaning to post but I hadn't gotten to it. I highly recommend this to everyone. Worked for me!

All the best!

Barb
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Jan 19, 2005 05:34PM richards wrote:

Great one. I laughed out loud!! Thanks
Eilidh
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Jan 20, 2005 10:16AM Ltb3105 wrote:

I have an appt. with my pdoc next month, think I will ask her about it, since antidepressants *can* put a damper on the libido, I'm sure she's got lots of patients with the same complaints and can steer me in the right direction!!

I've got all kinds of whammies going against me: chemo-induced menopause, antidepressants, and a shitty relationship right now with my dh, that makes 3 strikes for killing the libido!

Sometimes, I wonder if I've still got it in me!!! I often think about having an affair just to see if I'm still interested in sex!!

Laura
Laura Dx 7/1/2002, IDC, 1cm, Stage I, 0/0 nodes, HER2-
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Jan 21, 2005 12:54AM connierc wrote:

PLEASE NOTE: This is a "clinically-descriptive" post. I do not want to offend anyone, so I am saying this "up front." Nothing in here is truly offensive, and no foul language had been used. ALSO NOTE: The links I have attached will bring you to pages on the "Adam & Eve" website, which is FOR ADULTS ONLY . Some might be shocked at the "presentation" of the items, but the great prices are worth looking at, for lubricants and other "toys." PLEASE, DO NOT open these links when minors are present or if you are easily offended! Thank you....


Hello Ladies! I know, it's been a while since I contributed anything USEFUL to our discussion .. life has just been a bit wearisome lately, I'm sorry....

OK, UPDATE:

"REKINDLE" ' - which is a over-the-counter, homeopathic pill-form medication (with NO hormones!), which is for WOMEN who need / want to increase sexual desire, function, and attain orgasm. A bottle of these pills cost about $14 (I think, don't have price label anymore, could be more...) for 90 pills, which are taken 2 a day. Says it takes about 3-4 weeks to "kick in."

Well, IT HAS! ! Or at least, something has changed. Is it taking these pills? I don't know, but at least NOW I'm getting self-lubrication, though it still takes TIME to get as lubricated, as before all this, I was TOO lubricated! Ah, life is so ironic sometimes... .

SECOND: We have used two "new to us" lubricants for me. One was the "KY Heating Gel." Sorry to say, but for us, it did ZIPPO. Nothing "heated," I'm sad to say.

HOWEVER, the other lubricant / sexual enjoyment-enhancement DOES seem to have some positive effect. This is called, " FINALLY : THE SOLUTION FOR WOMEN." Purchased at good old Walmart! Again, high price for VERY small tube .... $14 for .7 fl. oz. About four uses, I would say. This is a clitoral stimulator, heats up very nicely when gently massaged on clitoris and inner and outer labial folds. The box says "NOW UP TO 30 APPLICATIONS!" YEAH, RIGHT, IN THEIR DREAMS....

But -- it DOES seem to have worked.

One of the "problems" I'm finding, is that since it has been, and still is, a LONG time between bouts of sexual intercourse, my hubby is VERY intent on making sure I achieve the Big O! Gotta love a partner like that!

But...he's a bit too anxious, and I must remind him in a gently, teasing way, to take his time and "tease" the sensations from the clitoris, not try and "make it happen" as fast as he can! LOL! He's learning!

This may be true for many of you, as well. If your partners are truely thoughtful of your needs, they will be more than willing to listen to what you have to say.

And yes, it takes MUCH LONGER to achieve any pleasure than it used to, IF it happens at all. Sometimes, I will confess, I "pretend," since I know it's not gonna happen, so that HE can have his release. I think you all know where I'm coming from on that account, sadly.

The other interesting item: After a year of chemo-induced menopause, I have started menstruating again. "Auntie Flow" came back with a vengeance, trying to make up for lost time I guess, making me almost beg for hot flashes again.... . HOWEVER .... this ALSO seems to be helping in the self-lubrication process! YEEHAW!

Now I know this sounds like we are having WAY too much fun -- LOL! In actuality, sadly, I would say we have had actual intercourse maybe five / six times this past year. Most of the time, I happily "help him out," in any way that I can. And the last time, about a week ago, THAT was when I noticed that my OWN lubrication had returned!

So, there IS HOPE!

Oh, also, I am attaching a "sale" on the ever-popular "POCKET ROCKET." This link will bring you to an XX-RATED site, the "Adam & Eve" catalog website. THIS SHOULD NOT BE OPENED WHEN CHILDREN ARE PRESENT!

http://www.adameve.com/collection.asp?sc=E012005B&page=1&sortby=date_added&view=2

I DO hope this has come out so that you can just click on it. This is the SALE page, and the POCKET ROCKET is priced at !! $5.99 !! (with a few addition clitoral stimulators and waterproof, to boot!). Since one of my own "PR's" has died, I will be purchasing one or more of these.

A WORD OF ADVICE: If you are NOT going to be using it for a while, TAKE THE BATTERIES OUT! I left mine in, they corroded, and ruined the little beauty.... :-(

I also HIGHLY recommend their heating lubricants called 'Midnite Fire Massage Lotion." Link follows. Although these are smaller bottles than I have had in the past, these will give you a variety of flavors to choose from. We have enjoyed them in the past. Hope YOU enjoy them in the future! !

http://www.adameve.com/product_id=8524/category_name=ss_lubricants/catalog_name=adameve/product.htm

OK, I think that is about it for Connie's "Update" on various products. With great hope, these will be of some use to others out there who are in the, um, same postition, so to speak!

HUGS AND GOOD HUNTING!

Connierc
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Jan 21, 2005 01:29AM susan_CNY wrote:

Connie, thank you so much for the info! before my hysterectomy at 32, I had natural lubrication, after that the breakthrough bleeding was the only salvation I had. I wish there were docs that cared enough to investigate that subject.I am now 53 and hate to admit that my 3 weeks out of 4 while bleeding were the sexiest moments of my life, and the introduction of cancer, maybe I should have refused the hysterectomy, just could not afford to keep the Kotex company in business and support my 3 kids, gotta do what the big guys suggest! For what that is worth. If its nots your wife, who cares?

dx 4/1984 cervical /hyst 10/2002 stage 2 colon /hemi-colectomy/5FU and Leukovorin chemo 11/2003 stage 1 bc tumor 1.6 grade 3 no nodes, possible vascular invasion / lumpectomy and rads 7/2009 lumpectomy found to be benign
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Jan 24, 2005 04:47PM marie5890 wrote:

(bumping for flowergirl)

Jan '11 Biopsy Dx-ed a PASH tumor (rare, but benign tumor)....All I ask is for peace and serenity to the depths of my soul. Makes the rest of life more live-able.
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Jan 25, 2005 05:54PM SimplySouth wrote:

Dear Ladies,

I am a newby to this list, but have been uplifted by the very frank, funny, honest sharing I have found here on the subject.

As I have scanned through the massive number of posts, I realize, I am not alone and this is a MAJOR problem for so many Breast Cancer survivors, but yet so many medical providers are unable or unwilling to deal with the issue [at least here in north Florida].

I sign off tonight resolved to renew my fight to find a solution for my own situation and not allow the naysayers to rain on my parade any longer.......

A big thank you to each and every one of you....

Deborah
53
[Florida]

BC-T1 NOD-neg..... ER+ PR+
Hysterectomy - age 28 [Endometrial Hyperplasia]
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Jan 25, 2005 06:15PM Anonymous wrote:

Hi Deborah, where are you in North Florida? are you on the Gulf coast side? A bunch of us are planning on a get together this Spring, and if you live over on this side, maybe you'd like to join us. We thought New Orleans would be a central meeting place, since some of us live in Pensacola/Panama City area and some in Mississippi, and some in Louisanna area. Hope to see ya again soon on the boards.

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