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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 12:06AM

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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Mar 5, 2017 05:48PM gardengypsy wrote:

mac~ I am waiting to here that your world is a more sensual place!! Was this prescribed by an MD? How much did it cost?
Dx 10/29/2015, ILC/IDC, Left, 5cm, Stage IIIA, Grade 3, 1/1 nodes, ER+/PR+, HER2- Surgery 12/3/2015 Lymph node removal: Sentinel; Mastectomy; Reconstruction (left): Tissue expander placement Chemotherapy 1/9/2016 AC + T (Taxol) Surgery 5/23/2016 Hormonal Therapy 5/28/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 6/5/2016 Whole-breast: Breast, Lymph nodes, Chest wall
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Mar 5, 2017 08:13PM macb04 wrote:

Not prescribed, wish it was and would be covered by insurance. It will cost me a mint, $2500. That is the cost for 3 procedures at least 6 weeks apart. I go for it this Wednesday. I hope it isn't too uncomfortable/painful, although I would put up with that if it works. Other women said it wasn't bad. I am crossing my fingers.

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Mar 20, 2017 07:58AM trinigirl50 wrote:

Hi Macbo4

I would be forever grateful if you let us know how things turn out once you've had the procedure. I am considering doing it and would appreciate some feedback.


thank you!


trinigirl50 Dx 3/7/2015, ILC, Left, 6cm+, Stage IIIC, Grade 2, 20/24 nodes, ER+/PR-, HER2- Surgery 3/7/2015 Lymph node removal: Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 4/13/2015 AC + T (Taxotere) Hormonal Therapy 9/14/2015 Arimidex (anastrozole), Femara (letrozole) Radiation Therapy 10/1/2015 Whole-breast: Breast, Lymph nodes
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Mar 20, 2017 11:42AM lekker wrote:

I don't mean to hijack this thread, but I've been wondering for a while - why isn't this covered by insurance? Viagra is covered and there's absolutely no medical benefit to that the waythere is with incontinence issues and Mona Lisa. Seriously!

Colorectal carcinoma in situ January 2000 (age 30), and now this... Dx 7/2012, ILC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 8/5/2012 Lumpectomy: Right Surgery 10/2/2012 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 3/11/2013 Reconstruction (left); Reconstruction (right) Surgery 4/10/2013 Prophylactic ovary removal
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Mar 21, 2017 12:39AM macb04 wrote:

Ha! leker. You are so right! Of Course Viagra is paid for. It is critical to the health, and wealth of our great nation that men should ALWAYS be able to get it up! (Pardon my burning sarcasm) Remember incontinent women like us can always wear adult diapers. SHUDDERRRRRRRRRR.

Trinigirl50, I had the 1st session about 2 weeks ago, and go for the second in about a month.She numbed up my vulva for 5 minutes, then she treated myvaginal and vulvar areas. In actuality, I felt very little at the time of the procedure. I was worried it would hurt, but really felt very little. That night I was kind of irritated at the opening to the vagina, and felt a dull throbbing ache in my vagina that wasn't too bad. The doctor gave me this special cream she has compounded to help with discomfort. I paid 30 dollars more for that, but I think it helped me be more comfortable. Also, I poured water over my vaginal area when I had to pee, because I was worried it might sting.

The next day I was pretty comfortable. I have to say, no real changes yet, maybe slightly less Urge incontinence, but not really sure. Just waiting to see what kind of improvement I'll get after the next 2 treatments.

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Mar 22, 2017 09:42AM trinigirl50 wrote:

Thank you for the update! Please do keep me posted. I will have to travel to US to do this, so I am really interested in finding a 'real' person who's done it. I know not everyone will have the same results but...




trinigirl50 Dx 3/7/2015, ILC, Left, 6cm+, Stage IIIC, Grade 2, 20/24 nodes, ER+/PR-, HER2- Surgery 3/7/2015 Lymph node removal: Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 4/13/2015 AC + T (Taxotere) Hormonal Therapy 9/14/2015 Arimidex (anastrozole), Femara (letrozole) Radiation Therapy 10/1/2015 Whole-breast: Breast, Lymph nodes
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Mar 23, 2017 03:39PM Southern-girl wrote:

Hi ladies, so glad I found this thread. Just had my first Mona Lisa touch treatment ( both vaginal and vulva) yesterday. Felt like I had a slight burning sensation externally afterwardsbut dr prepared me for that. Did not even need a Tylenol but I did put Vaseline to area like she suggested so it wouldn't burn when I peed. Was a little surprised at the blood tinged watery discharge however. After being so dry for so long I had to go out and purchase panty liners! As I researched it, I discovered this is very normal and should pass in few days. No change in activity for me but dr says no sex for 5 days. That's kinda funny because it's been way longer than that because of the vaginal atrophy caused by lack of estrogen! She also suggested coconut oil for lubrication for later. Specifically, to make little balls out of it and put in fridge, inserting one into vagina prior to intercourse. Hope this helps.

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Mar 23, 2017 04:09PM macb04 wrote:

Hi Southern-girl. We are at the same point in the treatment cycle. Will have my 2nd in about 4 weeks. I hope it mskes a big difference and isn't too uncomfortable. Keep us posted on how it goes, and I will do the same.

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Mar 23, 2017 08:48PM Stefajoy wrote:

hi. I've had all three, the last one being almost two months ago now. I would say there was a marked improvement, although not perfect. One more may help. In the meantime I still use a drop of lidocaine on one raw spot, and coconut oil as lubricant. I can say that sex IS pleasurable again after Mona Lisa...and it had not been for years.

Good luck ladies

Dx 7/29/2011, Left, Stage IV, metastasized to bone, ER+/PR+, HER2- Radiation Therapy Chemotherapy TAC Targeted Therapy Ibrance (palbociclib) Surgery Mastectomy; Reconstruction (left): Fat grafting, Silicone implant, Tissue expander placement; Reconstruction (right): Fat grafting, Silicone implant, Tissue expander placement Hormonal Therapy Aromasin (exemestane), Faslodex (fulvestrant), Femara (letrozole)
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Mar 24, 2017 10:44PM macb04 wrote:

Hey Stefajoy. I am glad to hear it was such an improvement for you. I'll cross my fingers that I get a lot of improvement with the next 2, especially stop the incontinence thing, and getting these frequent UTI's. I also hope sex is more fun, like it used to be, with real orgasms happening reliably. Currently, I only get a vaguely enjoyable sensation, sometimes I think hardly worth the effort

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Mar 25, 2017 01:19AM Stefajoy wrote:

Mac, hardly worth the effort is something I totally understand. I truly hope you get some relief and find some level of comfort. I do recommend lidocaine...not tooo much, just a drop, or you lose all sensation and can't orgasm anyway. And I can't say enough about coconut oil. It's not messy, not oily on the sheets, no smell or taste (well, maybe slightly coconutty) and very lube-e.

Hope it works out for ya.


Dx 7/29/2011, Left, Stage IV, metastasized to bone, ER+/PR+, HER2- Radiation Therapy Chemotherapy TAC Targeted Therapy Ibrance (palbociclib) Surgery Mastectomy; Reconstruction (left): Fat grafting, Silicone implant, Tissue expander placement; Reconstruction (right): Fat grafting, Silicone implant, Tissue expander placement Hormonal Therapy Aromasin (exemestane), Faslodex (fulvestrant), Femara (letrozole)
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Mar 25, 2017 11:15PM macb04 wrote:

Thanks Stefajoy. I am not having pain, just getting UTI's frequently after sex, and not getting much pleasure out of it, if you know what I mean. I enjoy the closeness with DH, but that all it is, no vavoom. I want the fun, some kind of "O" in capitol letters back. I feel robbed of being able to enjoy my body, and I never feel safer, so it is always a loss.

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Mar 26, 2017 02:47PM Stefajoy wrote:

it's such a huge loss to our bodies and to our lives. And not too many people talk about it. Sex will NEVER be the same..not even close. And I was one who thoroughly enjoyed it, and had planned on enjoying it frequently throughout my older years. I mourn it constantly, but I also have to wrap my head around the new 'normal' I now have. Some people lose their legs, their sight, their hearing, thier ability to speak, their minds, etc..

I've lost all of my womanness. No breasts, no ovaries, no moisture, no libido..... I guess it could be worse. We all have our demons. Doesn't make it any less sad though.

:

Dx 7/29/2011, Left, Stage IV, metastasized to bone, ER+/PR+, HER2- Radiation Therapy Chemotherapy TAC Targeted Therapy Ibrance (palbociclib) Surgery Mastectomy; Reconstruction (left): Fat grafting, Silicone implant, Tissue expander placement; Reconstruction (right): Fat grafting, Silicone implant, Tissue expander placement Hormonal Therapy Aromasin (exemestane), Faslodex (fulvestrant), Femara (letrozole)
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Mar 26, 2017 03:05PM macb04 wrote:

Yes, Stefajoy, you totally get where I am coming from. I am also thinking about the "O" Shot. I am not willing to feel so neutered.

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Apr 9, 2017 09:25AM trinigirl50 wrote:

How do you use the coconut oil ladies? I cant think of how to do it other than injecting it? How do u make little balls? I would prefer to use coconut oil rather than replens or vit e suppositories. Saving my money for Mona Lisa!

trinigirl50 Dx 3/7/2015, ILC, Left, 6cm+, Stage IIIC, Grade 2, 20/24 nodes, ER+/PR-, HER2- Surgery 3/7/2015 Lymph node removal: Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 4/13/2015 AC + T (Taxotere) Hormonal Therapy 9/14/2015 Arimidex (anastrozole), Femara (letrozole) Radiation Therapy 10/1/2015 Whole-breast: Breast, Lymph nodes
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Apr 9, 2017 09:02PM Stefajoy wrote:

I just put a 'wad' of it on my finger and insert it while I'm sitting on the toilet. It melts almost immediately and can be messy. But it gets in and I wash my hands and all is well. Then right before intercourse my husband uses his finger ...and gently inserts more. I put some on him to make him more slippery and....so it goes.

Dx 7/29/2011, Left, Stage IV, metastasized to bone, ER+/PR+, HER2- Radiation Therapy Chemotherapy TAC Targeted Therapy Ibrance (palbociclib) Surgery Mastectomy; Reconstruction (left): Fat grafting, Silicone implant, Tissue expander placement; Reconstruction (right): Fat grafting, Silicone implant, Tissue expander placement Hormonal Therapy Aromasin (exemestane), Faslodex (fulvestrant), Femara (letrozole)
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Apr 10, 2017 08:42AM 4happygirl wrote:

My MO has prescribed Vagifem which is estradiol (estrogen) that is inserted as a little pill in the vagina, even though I had ER+ BC. I used it only twice a week while I was taking anastrozole to suppress estrogen. Other women are allowed to use e-strings. The current thinking, as I understand it, is that it's ok to elevate estrogen levels for a very short time as long as they fall again right away. The Vagifem doesn't have much uptake because it blasts the system with a burst of estrogen, which fades away after 24 hours. Part of the reasoning is that what ultimately allows metastatic disease is when ER+ cancer cells mutate and lose their estrogen receptivity. This is also the reason whey hormone therapy is now limited to 5 years. The cancer growth is then much harder to control. So little bursts of estrogen encourage possible cancer mets to stay ER+, then when the estrogen levels fall to near zero, they die. On the down side, you end up being on an estrogen roller coaster and going through hormone ups and downs every week as the levels rise and fall. On the up side, you have a couple of days a week when sex is going to be much easier and less painful. Also, those are good days to do weight bearing exercises and make sure you're taking your D3 and calcium to help your bones. The estrogen+exercise increases how much new bone you're able to lay down.

Dx 12/4/2014, IDC, 1cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- Dx 1/26/2015, DCIS, <1cm, Stage IA, Grade 1, ER+/PR+, HER2- Dx 1/26/2015, IDC, <1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 2/19/2015 Mastectomy: Left; Reconstruction (left): Tissue expander placement Hormonal Therapy 3/31/2015 Arimidex (anastrozole) Surgery 2/25/2016 Reconstruction (left): DIEP flap
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Apr 10, 2017 08:51AM 4happygirl wrote:

My ob-gyn said to lubricate the vagina every night whether having sex or not. She recommended vitamin E oil suppositories but these are expensive so I use them only once or twice a week and use coconut oil the rest of the time. I used those inserters for vaginal suppositories for coconut oil. I got a huge tub of organic coconut oil at Costco and then filled he inserters by jabbing them into the coconut oil about 1/2" The coconut oil stays solid at room temp so I just keep a whole bunch of those in a baggie in the nightstand drawer, so they can be inserted anytime. The inserters are good because you can get them in really deep. I also massage coconut oil into the vulval area to combat that obnoxious papery dry feeling and it helps make urination and bowel movements more comfortable. The coconut oil but turns into liquid as soon as it touches warmth and will drip out during the night. Its messy so I wear a pad to bed.

Dx 12/4/2014, IDC, 1cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- Dx 1/26/2015, DCIS, <1cm, Stage IA, Grade 1, ER+/PR+, HER2- Dx 1/26/2015, IDC, <1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 2/19/2015 Mastectomy: Left; Reconstruction (left): Tissue expander placement Hormonal Therapy 3/31/2015 Arimidex (anastrozole) Surgery 2/25/2016 Reconstruction (left): DIEP flap
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Apr 10, 2017 09:05AM - edited Apr 10, 2017 09:08AM by 4happygirl

The other thing that has helped tremendously is that I purchased a medical grade vaginal dilator set. It's a set of hard plastic penis shaped inserters from tiny to very large. You're supposed to start by inserting the smallest one that fits comfortably and work your way up from there to gently combat atrophy. I use plenty of coconut oil and do this on the day after I use Vagifem. I find that it takes about 24-48 hours after using the Vagifem to be sexually functional, so I use the dilators and a vibrator while I have the house to myself during the day. Hope this helps!

Dx 12/4/2014, IDC, 1cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- Dx 1/26/2015, DCIS, <1cm, Stage IA, Grade 1, ER+/PR+, HER2- Dx 1/26/2015, IDC, <1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 2/19/2015 Mastectomy: Left; Reconstruction (left): Tissue expander placement Hormonal Therapy 3/31/2015 Arimidex (anastrozole) Surgery 2/25/2016 Reconstruction (left): DIEP flap
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Apr 10, 2017 09:31AM trinigirl50 wrote:

Thank you. I just bought a set of dilators, so hopefully that combined with coconut oil, will help matters.


trinigirl50 Dx 3/7/2015, ILC, Left, 6cm+, Stage IIIC, Grade 2, 20/24 nodes, ER+/PR-, HER2- Surgery 3/7/2015 Lymph node removal: Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 4/13/2015 AC + T (Taxotere) Hormonal Therapy 9/14/2015 Arimidex (anastrozole), Femara (letrozole) Radiation Therapy 10/1/2015 Whole-breast: Breast, Lymph nodes
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Apr 11, 2017 11:16PM macb04 wrote:

Hi trinigirl50 and 4happygirl, nice to meet you. Thanks for the suggestions and input.

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Apr 24, 2017 06:51PM trinigirl50 wrote:

Just got my dilator set. Starting today!!


trinigirl50 Dx 3/7/2015, ILC, Left, 6cm+, Stage IIIC, Grade 2, 20/24 nodes, ER+/PR-, HER2- Surgery 3/7/2015 Lymph node removal: Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 4/13/2015 AC + T (Taxotere) Hormonal Therapy 9/14/2015 Arimidex (anastrozole), Femara (letrozole) Radiation Therapy 10/1/2015 Whole-breast: Breast, Lymph nodes
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Apr 25, 2017 11:25PM macb04 wrote:

Hi trinigirl50, Enjoy those dilators! I had my second Mona Lisa Treatment last Wed. I am a little sore, but I think the urge incontinence is better, didn't leak any urine even when I was rushing to go pee. Yay! Hope it will get even better.

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Apr 27, 2017 12:17PM trinigirl50 wrote:

I am. I got up to number three in one week. Number four a little daunting, but use it or lose it! I found someone here in Caribbean who does Mona Lisa, so am using you as my guinea pig before I try it. Thank you from the bottom of my heart for sharing and updating. I hope it keeps improving for you!

trinigirl50 Dx 3/7/2015, ILC, Left, 6cm+, Stage IIIC, Grade 2, 20/24 nodes, ER+/PR-, HER2- Surgery 3/7/2015 Lymph node removal: Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 4/13/2015 AC + T (Taxotere) Hormonal Therapy 9/14/2015 Arimidex (anastrozole), Femara (letrozole) Radiation Therapy 10/1/2015 Whole-breast: Breast, Lymph nodes

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