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All TopicsForum: Sex & Relationship Matters → Topic: Mona Lisa Touch Wed. Hope fixes Incontinence/uncomfortable sex!

Topic: Mona Lisa Touch Wed. Hope fixes Incontinence/uncomfortable sex!

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: Mar 5, 2017 01:06AM

macb04 wrote:

Hi, haven't seen much recently about this, so thought I would start up a new thread. I am 4 years out since all this misery started. Pushed me abruptly into menopause. I used to love sex, not always exciting, but still enjoyed it, way to be close to DH. Taking vaginal Estriol 2 or 3 times per week. It has helped with my vaginal dryness, but keep getting UTI's every time we have sex. Also I leak a little bit of urine when I am on my way to the toilet. The Urge Incontinence doesn't happen every time, but enough to really make me mad. I wish my stupid insurance would pay for this problem they created with their stupid"treatment "

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May 31, 2017 01:57AM macb04 wrote:

Hi GirlPowerDebbie, glad you joined the thread. I bought myself Vibrating Dialators. The Mona Lisa actually seemed to tighten things up a bit, was actually having less sex for the last 3 months concurrently with getting Mona Lisa, which was NOT a good combination. I definitely notice better Clitoral sensitivity, and I think the urge incontinence is also decreased. The Dialator/Vibrator combo is a smooth silicone set which is keeping everything from being too tight for the rare occasions that sex happens now. I hoped for more sex, not less after getting the Mona Lisa, but it is really hard to get things coordinated now with my husband, who doesn't seem to care about the loss of this major part of our marriage.

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May 31, 2017 08:53AM - edited May 31, 2017 08:55AM by Runner81

I'd like to report that I've been very happy with the results from my Mona Lisa Touch procedure. After 3 treatments I have seen pretty good improvement. I know I will never be "normal" again, but I would say I am maybe about 70% improved, which is a huge improvement over where I was. My case was so bad I was pretty miserable. Not only was sexual intercourse painful, but I had a sticky discharge that made me miserable, and the exterior tissue around my vagina was so thin and friable that I would get hot spots that would bleed and sting in the shower. Miserable! After 3 treatments, the discharge is decreased by about 50% and it is a more healthy type of discharge rather than the yellow sticky unhealthy discharge. Also, the surrounding tissues are not as sensitive. My doctor recommended I get an additional treatment on just the external tissue, and I will probably go ahead and do that. Intercourse is still a little bit of a challenge, but it is much less painful than before. All in all, I thought the procedure was well worth what I paid for it.

The doctor who did my Mona Lisa Touch procedure also recommended Wet Platinum Silicone as a lubricant, and I have to say it is much better than any other product I've used.

Dx 7/21/2014, IDC, Right, 2cm, Stage IIA, Grade 1, 0/5 nodes, ER+/PR+, HER2+ (FISH) Surgery 8/21/2014 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 9/12/2014 Lumpectomy: Right Surgery 10/24/2014 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy 11/24/2014 Herceptin (trastuzumab) Chemotherapy 11/24/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 4/10/2015 Reconstruction (left): Nipple reconstruction, Silicone implant; Reconstruction (right): Nipple reconstruction, Silicone implant Hormonal Therapy
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May 31, 2017 11:08AM macb04 wrote:

Hi Runner81, nice to meet you. Glad you have had such a good response with Mona Lisa Touch. It is encouraging for me to hear that. I go in in a few weeks for the 3rd treatment. I would like more improvement then I have at present, especially with this tendency toward repeated UTI's, even more frequently after sex. I am doing the usual pee before and after sex, and still feel like I have a UTI every time I have sex. I have started on D-Mannose to help with treatment/ prevention of UTI's

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Jun 1, 2017 03:01PM Runner81 wrote:

Hello, Macb04, I hope you will get some more improvement after your third treatment. I had pretty much no change after the first treatment, pretty good improvement after the second, and even more improvement after the third. So hopefully you will see some good improvement with the third treatment All the best to you.

Dx 7/21/2014, IDC, Right, 2cm, Stage IIA, Grade 1, 0/5 nodes, ER+/PR+, HER2+ (FISH) Surgery 8/21/2014 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 9/12/2014 Lumpectomy: Right Surgery 10/24/2014 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy 11/24/2014 Herceptin (trastuzumab) Chemotherapy 11/24/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 4/10/2015 Reconstruction (left): Nipple reconstruction, Silicone implant; Reconstruction (right): Nipple reconstruction, Silicone implant Hormonal Therapy
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Jun 2, 2017 12:22AM macb04 wrote:

Crossing my fingers for even more improvement.

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Jun 4, 2017 11:01PM Raelan wrote:

macb04 - If you don't mind me asking, which doctor or facility did you use in Seattle? I'm from the area and am seriously considering looking into this treatment. Have been dealing (unsuccessfully) with vaginal atrophy for the past couple of years, and things have now progressed to recurrent uti's. I'm at my wits end and need to do something to break the cycle

Dx 3/10/2012, IDC, Right, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Surgery 4/4/2012 Lymph node removal: Right, Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left Chemotherapy 5/4/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 8/8/2012 Breast, Lymph nodes Hormonal Therapy 10/8/2012 Surgery 3/21/2014 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 10/13/2014 Reconstruction (right): Latissimus dorsi flap Hormonal Therapy 1/3/2015 Arimidex (anastrozole) Surgery 2/10/2015 Reconstruction (left); Reconstruction (right)
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Jun 4, 2017 11:38PM macb04 wrote:

Hi Raelan,

This is where I went. The doctor seems nice. Expect to go for 3rd treatment there in a few weeks. Then will wait and see if I go for a fourth. Seems like the bc patients get a fourth treatment more often than "regular women".

http://www.integritymedicalaesthetics.com/service/laser-treatment-services/monalisa-touch

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Jun 5, 2017 05:46PM - edited Jun 5, 2017 05:50PM by Raelan

Thanks macb04. That's the location I was considering. I believe they were early adopters to this protocol, at least in Seattle, and most likely have the longest track record. Need to get my recurrent UTI's under control first, then will consider next steps. MO is very hesitant to put me on topical estrogen, and so am I, but may need to do so for a short period of time to get things turned around.

By the way, I've also started taking DMannose as well as cranberry supplements and a probiotic that targets vaginal PH (Refresh PH). Apparently, our PH becomes less acidic as part of menopause, which also encourages bacterial growth. Feel like I need to buy stock in the supplements market.....and this is coming from someone who struggled to even take a daily multi-vitamin pre-menopause!

Please continue to post on your progress and results. It's very helpful to hear from others how well this new procedure is working.

Dx 3/10/2012, IDC, Right, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Surgery 4/4/2012 Lymph node removal: Right, Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left Chemotherapy 5/4/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 8/8/2012 Breast, Lymph nodes Hormonal Therapy 10/8/2012 Surgery 3/21/2014 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 10/13/2014 Reconstruction (right): Latissimus dorsi flap Hormonal Therapy 1/3/2015 Arimidex (anastrozole) Surgery 2/10/2015 Reconstruction (left); Reconstruction (right)
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Jun 5, 2017 11:26PM macb04 wrote:

Hi, I am also taking D Mannose too. I have had UTI's a few times lately, but none for over a decade before that. I have gotten good results taking Uristatin by Thorne Research. I have used that a successfully a few times to treat a UTI when the symptoms were just beginning and I didn't want to get another course of Antibiotics. Initially it was recommended to me by a Naturopath friend. Thorne Research has a great reputation with Naturopaths for being an excellent, supplement manufacturer with great quality control. I buy Co Q10 from Thorne, and Meriva Curcumin from Thorne as well.

https://www.amazon.com/Thorne-Research-Uristatin-Support-Capsules/dp/B009LM4KN6

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Jun 6, 2017 12:44AM Raelan wrote:

Thanks so much for the suggestion. I'm going to give it a shot

Dx 3/10/2012, IDC, Right, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Surgery 4/4/2012 Lymph node removal: Right, Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left Chemotherapy 5/4/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 8/8/2012 Breast, Lymph nodes Hormonal Therapy 10/8/2012 Surgery 3/21/2014 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 10/13/2014 Reconstruction (right): Latissimus dorsi flap Hormonal Therapy 1/3/2015 Arimidex (anastrozole) Surgery 2/10/2015 Reconstruction (left); Reconstruction (right)
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Sep 14, 2017 05:47PM Raelan wrote:

Just a quick update. Decided to bite the bullet and go for the Mona Lisa treatment. Had my first one today, then go back for 2 more, spaced 6 weeks apart. The next two treatments will use a stronger pulse, so results should start to really kick in after that. This first one today was basically to "lay the foundation". A little sore at the moment, but overall the treatment is pretty straightforward with minor discomfort. The doctor did indicate that basically AI's/Tamoxifen really trash the vagina of us BC girls, so 4 treatments may be necessary. She indicated we'll wait at least 3 months after the final treatment to see how things look, then reassess from there.

Because of my recurrent UTI's I ended up on local estrogen (was switched to Tamoxifen in order to be able to use it), as well as a prophylactic antibiotic. Good news is, I finish my 5 years of anti-estrogen hormonals in 36 days (yes I'm counting). I'm hoping to be able to get off all meds once I finish my 3rd Mona Lisa treatment....not to mention getting back to some semblance of a normal physical relationship with my poor long-suffering spouse.

I'll provides updates on my progress, since I know this is something others may be interested in pursuing.

Dx 3/10/2012, IDC, Right, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Surgery 4/4/2012 Lymph node removal: Right, Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left Chemotherapy 5/4/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 8/8/2012 Breast, Lymph nodes Hormonal Therapy 10/8/2012 Surgery 3/21/2014 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 10/13/2014 Reconstruction (right): Latissimus dorsi flap Hormonal Therapy 1/3/2015 Arimidex (anastrozole) Surgery 2/10/2015 Reconstruction (left); Reconstruction (right)
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Sep 14, 2017 11:47PM macb04 wrote:

Hi Raelan, Good for you! I did 2 and think it helped with the incontinence and the dryness, but still want to go back for the 3rd and a possible 4th treatment. I will update too, and will be interested in seeing your progress.

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Sep 21, 2017 11:34AM Runner81 wrote:

I thought I would update on my status as well. I have had 3 Mona Lisa treatments with a 4th treatment to the external tissue only. I have had pretty good results. My case of atrophy was really bad, but I would say that I'm maybe 60% to 70% better than I was. I can at least have intercourse with my husband now, it does not feel normal to me but it is not near as painful as it was before. I still struggle with "hot spots" on the external tissue, which is why I had a 4th treatment on that area. I have found that using a lubricant daily and frequently helps with the "chafing" feeling in that area. I use Wet Platinum Silicone, which is the best lubricant I have found and was recommended to me by the GYN who did my Mona Lisa procedure. Before I was just using it for intercourse, and I don't know why it didn't occur to me to use it for general daily usage, but using it daily helps with the general discomfort. I was not having UTIs like some of you ladies, so I don't have any experience to share about that.

This vaginal atrophy problem has been devastating for me. It is a problem that affects my daily life. Just wearing certain clothes feels uncomfortable because my vaginal area can be so sensitive. I've done a lot of crying over it. I get frustrated when doctors just want to limit the problem to intercourse, when really it affects me every day and pretty much all the time. For me it has been a huge problem, and I've considered stopping the tamoxifen because of quality of life.

Dx 7/21/2014, IDC, Right, 2cm, Stage IIA, Grade 1, 0/5 nodes, ER+/PR+, HER2+ (FISH) Surgery 8/21/2014 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 9/12/2014 Lumpectomy: Right Surgery 10/24/2014 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy 11/24/2014 Herceptin (trastuzumab) Chemotherapy 11/24/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 4/10/2015 Reconstruction (left): Nipple reconstruction, Silicone implant; Reconstruction (right): Nipple reconstruction, Silicone implant Hormonal Therapy
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Sep 21, 2017 11:22PM macb04 wrote:

I did stop the tamoxifen, but that was a bit ovr a year ago, but my vaginal health has never stopped being a problem since then. The incontinence and frequent UTI' really aggravate the crap out of me. I have only gotten 2 Mona Lisa Treatments, so I am planning to go get a third and see if it will improve some more. It got a bit better after the second treatment, but I still frequently get UTI symptoms after any sex, hell even when not having sex. The incontinence improved and so did the pain with sex, to some degree, but not enough to make me happy.

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Sep 30, 2017 08:52PM Raelan wrote:

Runner - I totally hear you on this. The vaginal atrophy problems I've been dealing with were so unexpected and have required a huge amount of time, effort, and cost to try and figure out how to deal with it all. I finish up my five years of estrogen suppressing drugs in 2 1/2 weeks and can't wait to be done. I don't know if being off them will make a difference, but hoping for the best.

Here's another thing I'm hoping for.....a UTI vaccine. It can't come soon enough:

https://www.pharmpro.com/news/2017/07/sequoia-scie...

Dx 3/10/2012, IDC, Right, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Surgery 4/4/2012 Lymph node removal: Right, Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left Chemotherapy 5/4/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 8/8/2012 Breast, Lymph nodes Hormonal Therapy 10/8/2012 Surgery 3/21/2014 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 10/13/2014 Reconstruction (right): Latissimus dorsi flap Hormonal Therapy 1/3/2015 Arimidex (anastrozole) Surgery 2/10/2015 Reconstruction (left); Reconstruction (right)
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Oct 3, 2017 01:36PM Runner81 wrote:

Thank you ladies for discussing this. I feel so alone in this whole thing. Nobody understands and most of my doctors don't get it. The GYN who did my Mona Lisa procedure is really the only person who sort of gets it because she had "surgical menopause" and had vaginal atrophy symptoms.

I HATE what the tamoxifen has done to me. But I don't feel like I can stop taking it. Damn breast cancer.

I'm probably going to continue with the maintenance treatments with the Mona Lisa procedure because even though it hasn't fixed my problem it was the only thing that helped to any degree. I still have issues but I'm maybe 50% better. I still feel like my vaginal area is still so irritated all the time. I'm so sad about it.

Dx 7/21/2014, IDC, Right, 2cm, Stage IIA, Grade 1, 0/5 nodes, ER+/PR+, HER2+ (FISH) Surgery 8/21/2014 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 9/12/2014 Lumpectomy: Right Surgery 10/24/2014 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy 11/24/2014 Herceptin (trastuzumab) Chemotherapy 11/24/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 4/10/2015 Reconstruction (left): Nipple reconstruction, Silicone implant; Reconstruction (right): Nipple reconstruction, Silicone implant Hormonal Therapy
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Oct 4, 2017 01:36AM macb04 wrote:

I am going to have Mona Lisa number 3 next Thursday. Ineed more improvement, really need more. I had sex this weekend, I was very, very dry and uncomfortable, just waiting for him to be done. I thought it was going to be good, but it just wasn't. I really need to probably get back on the Vaginal Estrogen. I will see how much improvement I get after the next Mona Lisa. Just one more awful thing done to me by the f*cking bc industry. Ruined my health and tries to perpetually ruin my happiness as well. I regret deeply ever listening to the medical morons. I never feel safer, just that it was all for nothing. I used to enjoy sex. I am starting to feel that it is all hopeless to get any improvement. To say I am discouraged would be the epic understatement of the century.

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Oct 4, 2017 06:34PM Raelan wrote:

macb04 - I'm glad to hear you're going to go for a third treatment. I totally get the frustration. BC has robbed us of so many things.....a good relationship with our husband's should not be one of them.

I've resigned myself to the fact I may also need to be on vaginal estrogen for a long time, even with the Mona Lisa treatments. At this stage in the game I'm willing to take the risk. I just think there's been too much damage done to completely reverse things. I may be wrong and only time with tell. I have treatment #2 in 2 weeks. Also, my 5 years on an AI/Tamoxifen are up this week. Well, I decided I was sick and tired of some of the vaginal issues I was experiencing (lots of discomfort, felt like I had a UTI, etc), so I took my last pill 2 days ago. MO doesn't know, but who cares at this point. Was planning to stop when I see her in 2 weeks, so just pulled the trigger a little early. I'll let you know if I start to experience any improvement. Anything would be better than what I've been dealing with for the past 10 months. Feel like I've been white-knuckling it to get to my 5 years.....it's been quite the vagina fest.....not.

Runner81 - Feel free to vent all you want. This is a safe place. I know there are a lot of ladies out there that deal with this, but just not to the degree that we experience. I believe we are the extreme cases for which the medical community only has limited options. Totally sucks if you ask me!

Dx 3/10/2012, IDC, Right, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Surgery 4/4/2012 Lymph node removal: Right, Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left Chemotherapy 5/4/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 8/8/2012 Breast, Lymph nodes Hormonal Therapy 10/8/2012 Surgery 3/21/2014 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 10/13/2014 Reconstruction (right): Latissimus dorsi flap Hormonal Therapy 1/3/2015 Arimidex (anastrozole) Surgery 2/10/2015 Reconstruction (left); Reconstruction (right)
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Oct 5, 2017 12:45PM Runner81 wrote:

Tell me about this vagina estrogen and how you apply it. The actual drug name would be helpful. Thanks, ladies.

Dx 7/21/2014, IDC, Right, 2cm, Stage IIA, Grade 1, 0/5 nodes, ER+/PR+, HER2+ (FISH) Surgery 8/21/2014 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 9/12/2014 Lumpectomy: Right Surgery 10/24/2014 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy 11/24/2014 Herceptin (trastuzumab) Chemotherapy 11/24/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 4/10/2015 Reconstruction (left): Nipple reconstruction, Silicone implant; Reconstruction (right): Nipple reconstruction, Silicone implant Hormonal Therapy
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Oct 5, 2017 10:45PM macb04 wrote:

There are 2 forms of Estogen women use, Estradiol and Estriol. Estradiol is the stronger Estrogen, and the form that ebs and increases intermittently during a normal menstrual cycle. Estriol is the form of Estrogen that predominates during pregnancy, and is a less potent Estrogen, and has much decreased risks of increasing the thickness of the uterine lining (uterine dysplasia) Women can use either of these Vaginal Estrogen forms, even women who had ER/PR positive bc are still able to safely use them because it doesn't have a systemic effect. Rather the Vaginal Estrogens stay localized in the vaginal/uterine area. They help to reverse thinning of the vaginal lining, decreasing pain, irritation and possible tears with sex.

Estradiol comes in the form of a prescription Vaginal Ring Insert called an Estring (that is left in the Vagina for 90days), Estrace, vaginal cream, ( same usage as the Vagifem and Vagifem, a Estradiol Vaginal Suppository., (used 1 daily for 2 weeks, then twice per week going forward)



Estriol is also by prescription, but is usually a specially Compounded Prescription Vaginal Suppository, that is more often prescribed by a Naturopath or a MD interested in Natural Medicine.

Whether to use Estradiol vs Estriol depends on several factors. Estradiol is the stronger Estrogen, and will more rapidly improve the health of your vagina. However, it is also known to increase the thickness of the Uterine lining, without Progesterone to counterbalance Estrogens effects, thus possibly increasing the risks of Uterine cancer.. Artificial Progestins are known, in and of themselves to increase the risk of breast cancer, which is why they finally stopped HRT. Natural Progesterone does not have a harmful proliferative effect on breast tissue, as has been shown through some well designed French Studies. Natural Progesterone has been safely shown to counterbalance the Vaginal Estrogens without increasing breast OR Uterine cancer. ( see the French Studies)

That seems like a no brainer, why Would you use an Artificial Progestin ( like Medroxyprogesteron) as a substandard, and dangerous substitute for Bioidentical Progesterone??? Here is a quote that explains it all

Synthetic progestins were originally developed to overcome the short half-life of progesterone and its high production cost.

Basically FOLLOW THE MONEY.

SO I plan to use Vaginal Estrogens only with concurrent cycling of Bioidentical Progesterone, off for the first 5 days of the month, and on for the remaining 25 days of the month (to mimic the cycling that would naturally occur during menstruation)


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1974841/

Progestins and progesterone in hormone replacement therapy and the risk of breast cancer

Carlo Campagnoli, Françoise Clavel-Chapelon, [...], and Franco Berrino

Additional article information

Abstract

Controlled studies and most observational studies published over the last 5 years suggest that the addition of synthetic progestins to estrogen in hormone replacement therapy (HRT), particularly in continuous-combined regimen, increases the breast cancer (BC) risk compared to estrogen alone. By contrast, a recent study suggests that the addition of natural progesterone in cyclic regimens does not affect BC risk. This finding is consistent with in vivo data suggesting that progesterone does not have a detrimental effect on breast tissue. The increased BC risk found with the addition of synthetic progestins to estrogen could be due to the regimen and/or the kind of progestin used. Continuous-combined regimen inhibits the sloughing of mammary epithelium that occurs after progesterone withdrawal in a cyclic regimen. More importantly, the progestins used (medroxyprogesterone acetate and 19-Nortestosterone-derivatives) are endowed with some non-progesterone-like effects, which can potentiate the proliferative action of estrogens. Particularly relevant seem to be the metabolic and hepatocellular effects (decreased insulin sensitivity, increased levels and activity of insulin-like growth factor-I, and decreased levels of SHBG), which contrast the opposite effects induced by oral estrogen.

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Oct 9, 2017 06:41PM Runner81 wrote:

Macb04, thanks for the information. I'm pretty sure my oncologist is going to say NO to this. The GYNs who did my Mona Lisa procedure are receptive to prescribing it but don't want to do that without the consent of my oncologist. The GYNs are receptive because they see it as a compromise for quality of life because they see the patients like me with their severe atrophy problem. The oncologist only cares about the cancer recurrence, so many, like mine, are not sympathetic.

I will try to talk this all out again with my doctors. Thanks again for the information.


Dx 7/21/2014, IDC, Right, 2cm, Stage IIA, Grade 1, 0/5 nodes, ER+/PR+, HER2+ (FISH) Surgery 8/21/2014 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 9/12/2014 Lumpectomy: Right Surgery 10/24/2014 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy 11/24/2014 Herceptin (trastuzumab) Chemotherapy 11/24/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 4/10/2015 Reconstruction (left): Nipple reconstruction, Silicone implant; Reconstruction (right): Nipple reconstruction, Silicone implant Hormonal Therapy
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Oct 10, 2017 01:29AM - edited Oct 12, 2017 10:23PM by macb04

Runner81, even if your onco says no, you can make an informed decision and go ahead anyway, and ask the GYN to prescibe it for you. You live with it, not the oncologist.

Here is one more option that sounds interesting.

Intravaginally applied oxytocin improves post-menopausal vaginal atrophy https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4566058/
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Oct 10, 2017 02:52AM runor wrote:

Reading this and feeling horrified at what I have coming at me next!

I struggled with UTIs for years and years when I was young, had different tests to find out the cause and eventually I got over them, but it took years. One thing I learned to do and still do is take a higher than required dose of vitamin C. Your body can only use so much vitamin C and the rest is passed into your urine. It makes your urine more acidic and thus more hostile to the beasties that can grow there. This will not cure a UTI once you have one, but can be a preventative when you need it. A thought to try and see if it helps at all. Hope it does. Would be nice to find an easy fix for a change.

Dx 3/23/2017, IDC, Left, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 7/5/2017 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 12, 2017 10:50PM macb04 wrote:

So I was reading more about the Vaginal Oxytocin study. It was done by a Swedish company. They had unexpectedly insignificant results of another Phase 2 study of their Vaginal Oxytocin gel, (called Vagitocin), but were very durprised that the gel they developed to be their placebo was as effective, if not more so than the Oxytocin Vaginal Gel. So they plan to release a nonprescription, NonOxytocin gel product next year in Europe called VagiVital. So who knows, maybe this will be something helpful.

I am going back on Vagifem Estradiol Suppositories tonight. I had a third MonaLisa last week, and still feel like I need help getting vaginal comfort back to close to normal. I am tired of half crappy sex, where I just want intercourse to be over with It makes me so angry and sad. . I plan to go for a 4th MonaLisa in 5 weeks. It will cost me $900 for another treatment, as I finished the series of 3.

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Nov 1, 2017 12:32PM cajunqueen15 wrote:

Hi ladies! I'm with you on this being a MAJOR life issue. I can't have sex at all, UTIs frequently (gyn told me today that up to 9 per year is normal after a hyst!!!), discomfort, you name it.

Thanks for all these tips and sharing your concerns. It is incredibly isolating to be going through this in my 30s, my friends just don't get it, there is nobody I know in the same boat.

35 @ dx. BRCA2. Disciple, wife, mother of twins (4) & son (3), attorney. e3 trial (complete). Blue/MammaPrint, High-risk Luminal B. Prolia (start 6/16). Dx 7/22/2015, DCIS, Left, <1cm, Stage 0, Grade 3, ER+/PR+, HER2- Dx 8/28/2015, IDC, Left, 1cm, Stage IIA, Grade 3, 2/11 nodes, ER+/PR+, HER2- Surgery 8/28/2015 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Silicone implant Surgery 4/12/2016 Prophylactic ovary removal Hormonal Therapy 4/19/2016 Arimidex (anastrozole) Surgery 8/1/2017 Reconstruction (left): Silicone implant Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Chemotherapy AC + T (Taxol)
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Nov 1, 2017 11:49PM macb04 wrote:

Hi cajunqueen15, up to 9 UTI's PER YEAR? This is supposed to be a viable "treatment"??? Have they friggin lost what's left of their minds? Men wouldn't put up with this much disfigurement, debasement and loss of every thing that constitutes a decent quality of life. I have horrible regrets that I listened to them into letting them torture me. I never, ever feel safe and have so many, many problems. I feel like I am discovering new problems all the time. Sometimes the UTI problem is so bad that my sleep is completely wreaked, having to get up to pee multiple times during the night. It helped when I went on Vagifem after the last Mona Lisa, but I need to have another treatment. That is NOT paid for in the slightest with the stinking insurance. It will cost $ 900.! ! !

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Nov 8, 2017 10:57PM 2FUN wrote:

ok, so I was having 6 UTIS a year b4 hyst, now on AI s and I'm on prophylactic antibiotics and getting them right before I'm due for my next dose. Sorry u r going thru this at your young age cajunqueen.

I hope we all find a solution to this problem. This is worse than all 3 cancers I have survived!

Hormonal Therapy Surgery
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Nov 9, 2017 12:03AM sas-schatzi wrote:

Two things to add to the discussion.

Incontinence: I'll leave the story out and talk about what helped me. I started a swimming program. When ever I return to it, I use three strokes, 1. common back stroke, 2. modified breast stroke, and 3. elementary backstroke. Never new what the elementary backstroke was named until someone here on BCO said it with in the last couple of weeks.

I was using the stroke to strengthen the deltoid(falls) and outer hip muscles(balance). So I drew the arms high (straight up over head) and the legs in a high frog position. Then snapped them down with force. Normally this stroke is use to conserve energy, not expend it. It really helped for the purposed I intended.

Then I noticed, I had better bladder control. Yay. I thought about why? The leg action is essentially like kegels, but much better. Here's a link to the stroke

https://www.youtube.com/watch?v=WPgt7djgloQ

Vulva problems: Much mentioned here with great suggestions. For a different vulva problem created by RAI-131, but brought great comfort was Sitz bath with cider vinegar. Sex was going on in the problem time which made the next day extremely uncomfortable. The worse the problem the more cider vinegar I used. Generally, 1 cup. The unit I bought off amazon was brand name Seatz. It has a wide brim for a wide and even normal bottom. Soak for 20 minutes, beyond that your legs will go to sleep. Then you fall and go back to swimming (attempt at humor).

Thanks everyone here for all the info :)

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Nov 9, 2017 12:49AM macb04 wrote:

I do a bunch of Kegels, doesn't really help. I have what is called urge incontinence. If I can distract myself enough with thinking of something besides going to the bathroom on my way to the toilet, no accidents happen. It is just from the stupid, f*cking tamoxifen which shriveled me up and destroyed me, and deleted my estrogen, so now I have the vagina of a senior.

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Nov 9, 2017 01:20AM sas-schatzi wrote:

Mac, I never thought much of kegels' I just thought I'd throw it in re: the swimming. I went through enough of an unusual period of incontinence I was eval'd for MS. Uncontrolled versus urge. Hahah it trully was both. With the swimming it disappeared. May have been related may not. I was happy.

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".

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