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I WANT MY MOJO BACK!

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Comments

  • InnaB2018
    InnaB2018 Member Posts: 766
    edited January 2020

    My gynecologist recommended Luvena moisturizer. It really works! Bonus: you only need to use it every three days, not even every day.


  • raelan
    raelan Member Posts: 84
    edited January 2020

    Hi Ladies - I've been away from the boards for awhile living life and doing my best to deal with the vaginal issues that come about from being slammed into menopause overnight. I'm now 8 years out from my diagnosis and have been on some form of an estrogen inhibitor for 7.5 years. I was on Tamoxifen initially, then moved onto an AI after 2 years once my MO was convinced I was truly menopausal. 2 years in to the AI I was having all sorts of vaginal/urinary issues, and after much testing to rule out as many causes as possible, was diagnosed with vaginal atrophy. At that point, my MO was comfortable letting me use estradiol cream and switched me back to Tamoxifen. I also underwent a Mona Lisa treatment (series of 4 treatments spaced closely together) that really made a difference in my vaginal tissues....more moisture and plumped them up. I'll be on Tamoxifen until I hit my 10 year mark.

    Fast forward to now. Had my annual Mona Lisa “booster" about 4 months ago, and while it helped I don't think one annual update a year is enough to keep me ahead of the curve. The treatments are expensive and I am a bit concerned about the long term effects of zapping your vagina on a regular basis with laser beams....particularly if I need to do so several times per year as a BC survivor. So I'm back to trying to figure out different/new options...which is where this amazing board comes in.

    My current routine includes a .25 gram (pea sized) dab of estradiol cream on the outer labia and urethra every other night. Every morning I insert 1/2 of a Carlson Key E suppository. I also take several supplements daily to help fend off UTI's: AZO cranberry tablet, 1 t. of powder D-Mannose, and Rephresh Pro-B probiotic.

    My sex life with my DH is pretty pathetic. I have zero drive and while we do have intercourse occasionally, it's not comfortable for me (probably because it's so infrequent). He's amazingly understanding, and has never had a strong drive either, so we've sort of settled into this state of complacency. I know if we had sex more frequently it would help with the atrophy (ie more blood flow to the tissues, keeps vagina stretched out), but I think you all understand the vicious cycle. I really do want to make this a priority in our lives, but feel really stuck sometimes.

    So, I'm going to start following this board to see what successes others are having with different treatment protocols. I feel that at a minimum I need to up my estrodial dose a bit (discussion for my PCP), and may need to try some different vaginal moisturizers. I’m also interested in what some of you had to say about localized testosterone and may check it out.Other than that, I'll keep researching and listening.

    You ladies are all so amazing and I'm always blown away by the degree of information I get from these boards that is no where to be found out in the mainstream medical community


  • 2002chickadee
    2002chickadee Member Posts: 79
    edited January 2020

    Hi all,

    I've been on Imvexxy 4mcg since September 2019, after about 3 months of using Hyalogyn 4x/week. The Imvexxy was approved by my MO, even with me being relatively high-risk due to recurrence. I continue to use Hyalogyn 2x week and Imvexxy 2x week. I've also started using pantyliners on the nights I have inserted something, then use a small layer of Acquaphor to keep the panty liner from drying me out. My husband and I haven't rebooted our intercourse (which was super painful) -- I have a torn rotator cuff and he has a broken shoulder, don't ask! we are a mess in my house! but we can't really manage -- however I have definitely seen a difference in my vaginal comfort. It still takes a lot longer to get aroused than pre-BC, but I can have a decent orgasm now if I'm patient. My GYN (new, I switched because my old one just shrugged at me when I raised these issues) said I will continue to see improvement from the Imvexxy.

    I agree these issues are so, so difficult and fill us with a big sense of loss. Sometimes you don't know if you should just give in and give up, or keep fighting for improvement. I'm happy I kept pushing for this to be better.


  • Rocket
    Rocket Member Posts: 910
    edited February 2020

    I got a call yesterday from my new gynecologist with the results of my Pap test. She said it showed abnormal cells. She now needs to do a colposcopy. She said it would be impossible currently with my level of vaginal atrophy. She had prescribed Intrarosa for four weeks so that the procedure won’t be as painful. I am scared to use that medication. I am still on Anastrozole. She said it is the only way to do the procedure. I am scared to use the med and I am scared of cervical cancer. I had a total hysterectomy but they left my cervix because it would have been a longer recovery.

    I hate this!!!!! I am a bit overwhelmed with all of this

  • anothernycgirl
    anothernycgirl Member Posts: 821
    edited February 2020

    Rocket, - I had a similar situation re abnormal cells/vaginal atrophy, etc.

    I had been using Revaree ( https://hellobonafide.com/products/revaree ) twice a week , however, to prep for the colposcopy my gyn suggested I use it 10-14 days in a row. I assume it helped, Maybe you can ask about trying that?

    (I eventually had to go for another colposcopy, and the specialist who i saw then suggested a small amount of estrogen cream twice a week, saying it will allow her to better monitor the cervix. )

    Never a dull moment =/


  • bella2013
    bella2013 Member Posts: 370
    edited February 2020

    Rocket,

    I use Intrarosa. My gynecologist, MO, and my Internist all feel comfortable with my using it. It is not systemic plus being on Anastrazole we are well protected.

    Wishing you benign results on your colposcopy.

    Bella2013


  • Rocket
    Rocket Member Posts: 910
    edited March 2020

    Hey Ladies,

    I am scheduled to have the colposcopy at the hospital on the 11th of March. She is going to use heavy sedation instead of me using Intrarosa. My husband and I just don't feel comfortable with it. I had three large 80% estrogen positive tumors in the same breast but all different quadrants - both ductal and lobular. Go figure! It was a miracle that my lymph nodes were clear. I had an 83% chance that they would have found spread to my lymph nodes and not even the sentinel nodes were affected. Unfortunately the surgeon who did my bi-lateral mastectomy damaged my brachial plexus and I suffer with chronic nerve pain as well as several other issues. I have been through a lot in the last ten years. I also have an arrhythmia and was wearing a heart monitor last week. I don't have the results of that yet. I am so tired of doctors, treatments for various issues, etc. This colposcopy has me freaked out. I had one in my 20s as my mother took DES when she was pregnant with me. It puts me at higher risk for cervical cancer and vaginal cancer. I also have high risk HPV infection. I am just worried that when I wake up from it I will have a lot of pain. She said my vaginal opening is very small - like that of a virgin. Well I haven't had intercourse in 9 years so I am sure that it is. The instrument they use for the colposcopy along with the speculum would be quite a bit larger than the vaginal opening. It's going to hurt! Not looking forward to this - not that anyone would.

    I appreciate your thoughts and wisdom ladies. Thanks for listening.


  • hikinglady
    hikinglady Member Posts: 625
    edited March 2020

    Rocket Because of the worry about your discomfort during the surgery, I see that others above my post here have also suggested using Estradiol cream (Rx) for just 10 days pre-surgery. Has your OBGYN suggested this as a pre-surgery comfort measure? Maybe even just a few applications might make a big difference. Maybe that, or something similar is already part of your pre-surgery preparation plan? It turned around my vaginal atrophy quite quickly. The usual dosage is daily for 1 week, and then maintenance dose is 3x/week, 1g. I use the type in a tube, and it's measured in an applicator, and I can use some of the measured dose each time to spread around other fragile skin in the area.

    My ongoing use of it is approved by 2 oncologists in a row, who say that research satisfies them it's not systemic, locally absorbed only. Not only does it make my vaginal tissue more comfortable, but it's made the tissue of my whole perineum less fragile, and has eliminated urination urgency.

    By the way, I've had a colposcopy, and everything was negative/just fine, and my recovery from it was quite easy.

    In my case, the cause for concern turned out to have been a cervical polyp in a hard-to-reach spot (it had to be removed surgically in a day surgery, under sedation; that's ordinarily an in-office procedure, but not mine...), and that had caused unusual spotting.

  • Rocket
    Rocket Member Posts: 910
    edited March 2020

    No my gynecologist never recommended anything else. I am just not comfortable with using vaginal estrogen. My anxiety regarding this is huge despite some gynecologists feelings that it is safe. I don't have a lot of trust in doctors anymore. I had three large cancerous tumors all growing at the same time, and I had pointed those lumps and thickened areas out to my gynecologist for five years. He kept saying, "Yes you have fibrocystic breast tissue." He never offered me another test like an ultrasound or MRI despite the fact that I had extremely dense breast tissue (I was uninformed at the time regarding the issues surrounding dense breast tissue). The mammograms never showed the tumors at all. I won't even go into the nightmare that was my breast surgeon! It was a horribly traumatic experience for me.

    I will survive this procedure - even if I have pain afterward. Lord knows I have survived much worse. Thank you for your kind thoughts!

  • cindyny
    cindyny Member Posts: 1,342
    edited March 2020

    Rocket- I'm hoping that because you will be sedated in the hospital, upon waking you won't be in much pain.

    I had cryotherapy, freezing of the cervix, with no sedation. It was painful. Upon getting home I slept for 3+ hours and when I woke up I felt ok - not like running a marathon good, but ok.

    Best wishes.

  • moth
    moth Member Posts: 3,293
    edited April 2020

    this isn't an intercourse question but a UTI q but there's so much overlap I thought you might have some tips for me

    When I was young and foolish I had a few uti and all were linked to not going to pee immed after sex. Silly silly woman.

    Now it's not sex. I'm post menopause.

    -Perineal area is fragile and dry.

    -I have a lung met which causes coughing and that bladder sphincter lost its oooomph ages ago. So I have to wear pads. I've tried disposable -seem to irritate. Got a UTI in March. Switched to cloth, change them religiously. Seemed better but today I have those early signs. Bit of a spasm, woke up feeling need to pee but only had tiny amnt

    -I have bone pain from chemo and one of the suggestions so I don't max out my pain pills is warm baths. I pee after but I think it's risky to soak in bath with a floppy urethra.

    Oh and I'm in a clinical trial and everything pharmaceutical or supplement has to be approved by a hundred people :(

    What advise? What would you add? I'm wondering about ordering a peri bottle. Washing with washcloth maybe too rough and yet want everything super clean after each toilet use.

    Moisturizer? Can it be a lube? I have one of those watery runny slippery ones. Or should I use something else?

    Halp!

  • jaycee49
    jaycee49 Member Posts: 1,264
    edited April 2020

    moth, I have your issue in spades. Go back and look for my posts in this thread. I had non estrogen moisturizers working for about a year but they don't any more. I just started using topical vaginal estrogen I get at Amazon from a company called Bezwecken. Since you have low estrogen reception, you may even be able to get a doctor to prescribe topical estrogen. I could not. PM me and I can send you a spreadsheet I made of all the moisturizers I have used. (Lube is different from moisturizers.) You need to start doing something ASAP. And be consistent. It usually takes me about four months of every night use to get anywhere.

    As far as getting antibiotics, I always keep a few from each Rx or keep ones that don't work on a particular infection and you get switched to another. Over the years, I have collected quite a stash. And an infection need to be cultured to be sure the antibiotic you are using will work on the current infection. I buy sterile containers (like doctors' office use) and bring my samples to them. No figuring out how to pee there. I also buy the dipsticks they use to test my sample myself before I take it to them. I've been dealing with this for about 20 years so I have lots of tricks.

    The problem we have with the current virus situation is that other issues get pushed back and ignored. I feel bad trying to get other things taken care of. It's a tough spot.

  • moth
    moth Member Posts: 3,293
    edited April 2020

    Thank you Janet. I will have a look through your posts to learn

  • corky60
    corky60 Member Posts: 453
    edited April 2020

    I was constantly getting one UTI after another. Every 3 weeks I had one. Then I found a urologist who prescribed Methenamine Hippurate. Since I started using it a couple of years ago I haven't had one UTI.

  • corky60
    corky60 Member Posts: 453
    edited April 2020

    Here's a question for you. I have yeast under the hood of the clitoris. Diflucan doesn't help. It's like a tunnel or pit that keeps producing. I bought some OTC yeast infection ointment. I have to squeeze the yeast out and then apply the ointment there. And even that hasn't helped yet. A dr that I saw said she had never seen anything like it. The yeast makes the clitoris itch. There's no yeast in the vagina. This is driving me insane.

  • glostagirl
    glostagirl Member Posts: 93
    edited April 2020

    Greetings all, I'm wondering if anyone has used either a CBD or THC infused oil lubricant.

    If you have, perhaps share your results and favorite sources. Thanks, GG.

  • jaycee49
    jaycee49 Member Posts: 1,264
    edited April 2020

    Corky, I'm just wondering if there might be any connection between the Methenamine Hippurate and the yeast. Seems like you've been using that for a while. Probably not but just a thought.

  • corky60
    corky60 Member Posts: 453
    edited April 2020

    Thank you jaycee49. I don't think that this is the right time to pursue that theory. The doctors don't want us in their offices. I can't see the one I saw in the urgent care clinic. Many of the urgent care clinics have been dedicated exclusively for Covid 19 patients. But I will look into it as soon as the coast is clear.

  • moth
    moth Member Posts: 3,293
    edited April 2020

    corky, are there no telemedicine doctors? All the family practice offices here have moved to telemedicine.

    If necessary they can even send you a testing swab in mail. There are nursing school video school instructions how to collect a sample and you could do it yourself. Then you mail to the lab and they can tell what type of yeast and what appropriate treatment is. These days we have to be very creative and honestly this isn't that hard. Also, your doctor might not even want a smear. They may just have a better idea how to treat this.

    My family practice is still open for everything through telemedicine & they definitely do NOT want us to ignore other issues, they just don't want us coming in. They just book tele appointments except for injections & a handful other rare things. I just spoke to my GP on Monday.

  • runor
    runor Member Posts: 1,615
    edited April 2020

    Moth, when I was fighting UTIs in my younger life, I took dolomite and zinc plus large amounts of vitamin C. The idea being that you pee out the vitamin C your body can't use, so it acidifies your bladder, making it more hostile to invaders. Now, like Jaycee says, I have to use some estrogen cream to keep those tissues in fighting shape. I smear some around with my finger. I also smear around coconut oil but man...that stuff can be hard to handle! If you feel okay using an estrogen cream, it might be a game changer. But like Jaycee said, it will take some time to get things back in working order. I hope you get a handle on it. A UTI is truly miserable. I also wear cotton pantyliners with a quiltedf layer of bamboo. Know a great small producer here in BC who makes them!  

    Corky, I have never heard of such a thing, squeezing yeast out of anywhere! I would be freaking out. My first reaction would be that there is some physical problem causing your body to make gunk that requires squeezing. It sounds like pus. The product of inflammation or irritation.  My mind immediately thought, oh, she's got a tiny chunk of hay caught in there! Because tiny chunks of hay or an errant piece of wheat can cause all sorts of misery when lodged for a long time in a tight spot they don't belong! Of course, maybe you don't ride horses and deal with making crops so this might not be likely in your case. Could a hair be somehow jammed up there? That just seems too weird. I am sure you've taken a glob of vaginal yeast med and smeared it into your clitoris, getting it into the bothersome area. If you find the vaginal preparation not working / sticking, you could switch to a cream made for athlete's foot. READ THE LABELS!!!! Some creams have different anti-fungals, some have the same as vaginal yeast creams. I think it's clotrimazole that you want to look for in an ahtlete's foot cream. Good luck, that sounds beyond miserable!

  • moth
    moth Member Posts: 3,293
    edited April 2020

    runor, can you dm me link to the pad maker pls?


    being on this study means I can't take anything without clearing it with the study people, not my MO, but the study people. & they generally will not approve anything that's a supplement in a tablet. I was hella surprised when B6 & l-glutamine for neuropathy prevention were approved. I will try the topicals & moisturizers & fluids & speak to my MO when I see her tomorrow.

    also, since this is the mojo thread, as a stage 4 dx'd in Feb, I don't think I ever want to have sex again which seems mean but also, just nope. stage 4 peeps wanna chime in? does that get better or not? I feel like I *should* but at the same time I'm super resistant to any *should* programming

  • Betsy_Johnson
    Betsy_Johnson Member Posts: 1
    edited April 2020

    This is Betsy's husband replying. Your assertions on this forum accusing the male population of placing BC as a second place issue is ridiculous. You said that if this were a male disease, we'd have a cure by now. That statement is sexist and ridiculous. Another one, if it were a male problem there would be lubrication and moisture treatments galore. Again, preposterous. Do you think we enjoy our partner's discomfort? Are you that insecure? You should really rethink this. I have not yet read other responses, but I intend to and I won't be surprised if I get some support.

    I pray that your resentment and paranoia are history by now and that you've resumed the Sex Life you enjoyed so much.

    Randy Johnson

  • miriandra
    miriandra Member Posts: 2,230
    edited April 2020

    Hi Betsy's husband! I hope you're doing well.

    The extent of male-centricity in medicine is something that is coming to the surface fairly recently. It is not an accusation or blame, but rather a realization of where we can do better so as not to succumb to subconscious biases. Men haven't let female medicine lag behind because they wanted women to suffer. It's because female medical issues don't occur to them, since they're not problems for them directly. And since most medical foundations and research funding is managed by men, the issues that hit closest to home for men will TEND TO (not ALWAYS) get funding first. It's no one's fault, it's just recognizing human nature and being mindful to work against it.

    https://nypost.com/2018/04/21/medical-research-has...

    Bias In Medicine: Last Week Tonight with John Oliver (HBO ...

    The white male has been the standard point of reference for medical research for almost as long as there has been medical research. Even crash test dummies have been male - leading to shoulder straps on seat belts actually causing injuries for women. (https://www.citylab.com/transportation/2019/07/car... ) The result of using white males predominantly as research subjects has led to many medicines that work very well for white males, but can be less effective for blacks or women. Remember the big Ambien scandal over women metabolizing the active ingredient differently and more slowly? Also, heart medications can work differently in black vs. white patients. This is stuff that has only become mainstream in the last decade or so. It sill take a bit until we get medicine caught up for other demographics.

    Again, this is not to accuse men of intentionally focusing on white male patients and white male medical issues to the detriment of women and minorities. It's just recognizing that most research - which has been funded by male-led foundations and institutions - has naturally been prioritized by a filter biased towards the people leading those institutions. They don't do it because they're mean - they do it because it hadn't occurred to them to do otherwise. "Why research menstrual pain? I don't get cramps." Now that we're aware of the problem, we can choose to focus on those areas that have been backburnered.


  • runor
    runor Member Posts: 1,615
    edited April 2020

    Miranda, you were very kind and measured in your reply and I admire that. I am not feeling nearly as benevolent. Here is my skeptic's reaction.
    I think, with only one post, that Betsy Johns is not a real member with a real problem. If she is, I scrolled back several posts, and could not find any posts from anyone named Betsy Johnson in this thread. Yet her' husband' shows up here to make a post? I have seen these kinds of posts before. They are, in my opinion, trolls.  And signs his name Randy Johnson. Come on. Really? Randy Johnson? How about Eager Wanker? Or Happy Weenie? Perhaps Dick A. Lone.

    To make sure I am not wrong (because I always might be wrong, I acknowledge this) I will scroll back further to see if there are any posts from a Betsy Johns. I will do a member search for Betsy Johns. If I find nothing I will conclude that Mr. Randy Johnson is a troll with a borderline personality disorder who gets off reading about the very real problems women have with their sex lives and cancer. If I am wrong, I will delete this paragraph.

    Edited to add: did search. No Betsy Johnson could be found. No posts from any such person in this thread for the last two pages. No one, as far back as October of last year, made any remarks about' this would be cured if it was a problem for men' (not that I could see on my quick read over). My conclusion: troll.

  • jaycee49
    jaycee49 Member Posts: 1,264
    edited April 2020

    runor, the one post by Betsy was the one by Randy. That's it. You can see it on her profile.

  • miriandra
    miriandra Member Posts: 2,230
    edited April 2020

    "She" joined 4/2/20, no diagnoses or conditions listed, .... Hmm, I think you ladies may be right. I apologize for feeding the troll, but I hope you enjoy the John Oliver video anyway.

    Winking

  • runor
    runor Member Posts: 1,615
    edited April 2020

    Miriandra, no apology required! Most of us are here for a helpful purpose. But every now and then my spidey sense starts to tingle and tells me something's fishy.  'Randy" was addressing a topic that hadn't even come up in a while. At least not that I noticed, and I did look (albeit rather quickly and skim reading).

    Jaycee, I did try to look up any Betsy J, found nothing, so she was not genuine. Is that what you are saying? Are you agreeing with me? Are you disagreeing wiht me? HOW DARE YOU!!!!!!!

  • hapa
    hapa Member Posts: 613
    edited April 2020

    moth - what are the study people doing to do if you take something that they don't approve? It does not behoove them to kick you off the study at this point because you are already part of the "intent to treat" population. If they kick you off, it makes their study drug look that much less effective. You should talk to Shetland Pony about study nurses and how to deal with them.

  • jaycee49
    jaycee49 Member Posts: 1,264
    edited April 2020

    runor, of course I am agreeing with you. It just didn't have to be so much work. Just click on "her" name and see her profile. Her recent posts are listed. There is just the one by "him." (I will not be mistaking him for a feminist.)

    Marianda, I liked reading your post regardless. Nice to have reasonable words spoken so thoughtfully.

  • cindyny
    cindyny Member Posts: 1,342
    edited April 2020

    I've blocked Ms. Betty & her Johnson. In this day and age w COVID issues on top of breast cancer, you'd think it/they/him could find something better to do.

    Click on the name; scroll down, you too can block it.

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