I WANT MY MOJO BACK!
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jaycee49 Oh, your story is awful, and runor's, too--- your care sounds wrong, insufficient, and lacking compassion and knowledge. We do have to advocate for ourselves, do our own research and fill in the gaps, for sure. I've had other gaps in care throughout my life, for sure, just not here with breast cancer + side effects of my treatment. Even though I definitely DO have good providers, I also show up to every appointment with my list of researched questions about whatever I'm dealing with. I'm a polite but also assertive patient, and if I don't get an answer, I keep asking and don't give up.
Moisturizing: Have you tried coconut oil? My good friend is an OBGYN, and she says that many women have really good results with it, and that it can reverse vaginal atrophy and be a safe, effective way to moisturize. Use daily, put all over inside of vagina + vulva area, etc. I've read good results with it on this thread, and I'm now using it, as well, and think it's quite great. I also need Estradiol, though, so I do that Rx 2 or 3 times per week as prescribed, plus daily moisturizing with coconut oil. It's super cheap and non-reactive with my skin, and seems like there's no downside except smelling a bit like the beach + being a bit greasy, of course....
You should feel supported and listened to, so first I'd clarify with my not-listening-to-me MO that I really want help with _____ because this side effect is ______ and how can you help me????? If your MO is really not meeting your needs as a patient, maybe there's another one who's better in your city. If I were dissatisfied with my MO, I'd look for another one, and interview potential new ones to change to, and do some research all different ways. Example: phone up a receptionist at a new oncology clinic, ask to talk to an RN about choosing a provider and say you have specific questions for a nurse there about changing to that practice, and describe, to an RN at the new place, the provider you want: "Which of your oncologists would you recommend to me, in your office, if I particularly want someone who listens and communicates really well, and cares about my side effects, and also keeps up with research and is excellent and highly regarded?" The nurse will hedge, because this is an awkward question, but every time I've tried this, I've described the doctor I want. Maybe give the nurse an 'out' by adding, 'of course all your providers are great, but for ME, for these things I'm looking for, which doctor would you suggest?" and then the nurse will say "Oh, you'll be best cared for by Dr. ______ because ______."
I go to an OBGYN to discuss my Lady Parts and issues with them, not to my PCP. Just really appreciate a specialist for that stuff. My OBGYN prescribes my Rx Estradiol cream.
My MO absolutely listens to my issues and side effects, and responds appropriately. In fact, all throughout chemo and then after beginning my AI, there was an RN at his practice whose job it is (Triage Nurse) to consult with patients over the phone, and she gave tons of good advice and solutions over many months, as part of their continuing care and oversight of all patients, and all of her advice is vetted as well by oncologists for accuracy and standing orders for suggested solutions for EVERYTHING. I am so accustomed to this good care that it is shocking to read of other women's struggles with this.
My own daughter is an NP (family practice PCP) and her husband, my son-in-law is an emergency room doctor. They take every single bit of information that patients share about their presentation and side effects extremely seriously, and they believe that patients all deserve thoughtful, responsible, responsive and skilled care.
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HikingLady, maybe you haven't been on this thread very long but I have tried EVERYTHING. I have a big spreadsheet of all the vaginal moisturizing products I use with ingredients, application method, vendor, and prices, including unit price. I wish I could share it on BCO but the BCO software makes a jumble out of a spreadsheet when posted. Have I asked the mods about this? Of course. Do I ever get any answers? Nope. Coconut oil is one of my go-to's because it works and is cheap. But, again, it encourages yeast if you are prone to that. Right now, I am in a never-ending cycle of yeast infections and the treatments for them exacerbating the dryness. And then the moisturizing products encouraging more yeast. Round and round we go. No doctor I go to has the time or inclination to understand this cycle and figure out what to do about it. I just fired my gyn and found a new one but, as is common, getting an appointment with a new doctor takes months. In this case three. So I went to this PCP place as a stop gap while waiting to see my new gyn. I have been dealing with medical professionals for YEARS, mostly successfully. (I only got kicked out of a doctor's office once.) Otherwise, I plod along. My MO refuses to let me use any estrogen products. I have several in my Amazon shopping cart right now. BTW, I did change MO's at the beginning of 2018. I changed within the one descent oncology practice in my city.
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To anyone here using Intrarosa: How did you get it approved by insurance?
My gynecologist prescribed it for me. It seems the safest thing for a woman with ER+ mbc. Insurance denied it, and the desk person at my gyn’s told me, in so many words, that the doctor is too busy to do appeals and they let the patients do them. What?! Isn’t this part of her job? How am I supposed to know what the insurance company needs to be told? I am used to my wonderful oncology nurse and oncologist who know exactly how to get things approved for their patients. I don’t want to hand this over to them though; it is really the gyn’s job and my onc was not too familiar with Intrarosa. The desk person is going to double check with the gyn. This is unbelievable. I told the lady that I understand the doctor is busy, but I am struggling here myself. Just a little chemo thing, eight years on cancer treatment, just moved house. Maybe I should have mentioned that. But the gyn knows it.
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Jaycee, quite a while ago someone on BCO mentioned this web site: A Woman’s Touch Sexuality Resource Center. It has info on which moisturizing and lubricating products are least likely to cause/exacerbate other problems. And a whole rehab program outlined. Maybe you already know about it, but I wanted to make sure.
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Thanks, Shetland. I sort of remember that and I sort of remember going to the site but I just don't remember exactly. I'll go there again and see what I can find. That would be good. Products that don't cause/exacerbate other problems. I need some of those.
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This was posted on the main page of the BCO community website. The text of the article was not available when I looked. There is a video but I don't do videos so I can't comment but this looks good.
https://www.breastcancer.org/community/podcasts/hormonal-tx-compliance-20190603
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jaycee49 So sorry about all you've been going through. Very frustrating. You sound very informed and like a super good self-advocate, despite all those care provider challenges, ugh!
To share that spreadsheet, the only thing I can think of is to save it as a PDF and attach it like a photo/attachment, or even do a screen shot of it, and that should also load like attaching a photo.
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Jaycee - I got a massive yeast infection with estring, but not with the estroil cream or the new one called Imvexxy. I hear your frustration. I remember after my son was born, I had yeast infections with every cycle for months and months - so miserable. Hope you find someone who listens to your needs.
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How on earth can Vaseline cause a yeast infection? It is a petroleum byproduct. It has no food value whatsoever. What in Vaseline promotes yeast? Coconut oil on the other hand is an edible product, it has food value, it seems like it would have what it takes to support a yeast infection. But Vaseline! We use it on our lips and baby butts and it's a barrier, a humectant. But there is nothing food grade about it and yeast needs some sort of ...energy to multiply and live.
The downside of Vaseline is that it is sticky. If you smear it on your hoohoo it's going to cause your panties to stick to you. Panties glommed onto you will cause you to walk funny while pushing your grocery cart through the produce section. It might cause chaffing. If you are foolish enough to wear synthetic panties and not cotton crotched panties, it might cause a fire. Flaming gonch in the fruits and vegetables, clean- up on aisle five.
Wearing a pantyliner everyday can cause a yeast infection. Most pantyliners have a plastic or paper based top layer. Neither of these is good long term against your vajayjay. KAREN1956 if you had yeast infections at every menstrual cycle, there's a good chance your hygiene product was the reason. The reason babies get diaper rash is because they are kept in a WET environment without enough airflow. Same when you have a plastic topped or paper topped pantyliner against your body all day. Toss out those paper / plastic disposable products and investigate FABRIC alternatives. No word of a lie, washing a little pee out of your COTTON re-usable pantyliner won't kill you. But it may very well be the solution that you have refused to consider. So consider it. I say this because for the last years of my horrifyingly uncontrolled periods I used cotton fabric pads because they were the only things that absorbed the tidal wave of destruction that issued forth from my body in such volume that it made me stop dead in my tracks, go rigid with fear and mutter Oh Shit, as I marched, knees together, to the nearest bathroom. Fabric pads changed my life. Fabric pantyliners are also game changers. The mental stigma people have of getting their hands dirty cleaning these products up is stubborn thinking and driven by taboos that you don't even know you have. But they can be game changers if you wrap your head around the idea that you wash and reuse instead of peel and toss.
TO sum up this edifying lecture...I can't imagine how Vaseline causes a yeast infection. I think pads and pantyliners made of plastic or paper are irritating to delicate mucous membranes (think of your nose after a bad cold and blowing it every 10 minutes for 3 days, it's a raw, sore mess, thank you tissues!) our bottom parts need more air, and more cotton, so go grocery shopping pantless!0 -
I've been wearing cotton pads/liners for a while. Seems to help. The Vasoline thing ... I just don't know. Two nights ago, I used something called Tioconazole 1. It really made things way better. But it is a one night treatment plus Walgreen's only had one. Last night, I used one Monostat 7. The burning is back. Am I allergic to Monostat? I've used it for years, successfully. I'm looking online for what stores have more of that Tioconazole. I may drive around town and buy every one I can find. I think it treats an alternate strain of yeast than normal. And we all know I am not normal.
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The text of the article I posted above never showed up so listened to the podcast. Someone actually spent money to find that sending text messages to remind patients to take their hormonal med (AI or Tamoxifen) doesn't work. What is needed it better treatment of side effects. DUH! No specific side effects were mentioned and no potential treatments of those side effects were mentioned either.
Useless. Completely useless. If we are going to move at this pace, the problems will never be solved. Tiptoeing around the issues is meaningless. It needs to be stomped on with a huge clawed monster's foot.
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Jaycee, I should have clarified that my Vaseline and cotton pantyliners post was not directed at YOU, but the general notion that whoever said Vaseline 'causes' yeast infections might be off their rocker. If Vaseline caused any infections you'd think they'd remove it from the baby section where they sell it next to diapers!
If you are using disposable cotton pads / liners, try the washable re-usable ones made of actual cotton fabric. Big difference. Anyone who has any questions, I am willing to answer. I used to make and sell these products. I used them myself for years. When I need a pantyliner I do not use a dispoable. I use one of my flannels. Plus, they're so cute!
Edited to add: I think the ethics of doing such pointless research has to be questioned. We all know that kids are experts at ignoring a nagging parent - so a nagging text reminding us to take a pill that makes many of us feel like shit is suddenly going to revolutionize pill compliance? WHo comes up with this craziness and even more alarming, who hands over grant / research money for it!?!?!
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I listened to the podcast on hormonal treatment compliance because it was suggestive that it would address SE. NOT. All it talked about was text messages and how ineffective they were in increasing compliance. I don't need anyone to tell me to take my med but I do need someone who can address the SE that make my life so miserable. MO's need to be educated about how to assist us in dealing with SE and not just offering sympathy. Loss of hair, carpal tunnel symptoms, trigger fingers, achilles tendonitis and other joint issues, plus insomnia, night terrors, and memory lapses are the real issues that need addressing.
For the sake of one daily AI, I am taking a slew of supplements (OTC and out of pocket so not cheap) and some prescription meds to supposedly offset the SE's. Since so many women are experiencing debilitating SE's this should be the focus and looking at the generics might be a good place to start. Are they all they are cracked up to be? Are we being sold a bill of goods that they are just as effective if there are so many brands and each seems to have a different base product? How can they be cost effective if we have to take so many other meds/supplements to counteract the SE's?
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Betrayal, I find it interesting that with all the SE's you mention, none of them are sexual issues, which is what this thread is about. Do you not have the vaginal dryness and lack of libido we all complain about? You are very lucky if that is the case. All those other things sound terrible, though. I hope you don't have them all at once.
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Runor - that was 30 years ago!!! They started my first cycle after delivery (at 4 months) and my cycles were short at the time - I think it had to do with hormones - but who knows - it didn't happen after either of my other 2 children (both girls).
I too listened to the podcast - the reason I stopped AIs after enduring side effects for 3 years was because of decreased quality of life. I agree with whoever said waste of $ for that study to see if text messages increase compliance - compliance is directly related to side effects or lack of side effects -
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I think we have to be careful with terminology. I was both "taking" compounded estrogen and "using" or "applying" compounded estrogen when I was diagnosed with BC. I was orally "taking" capsules and vaginally "using" or "applying" cream.
Has your vaginal tissue ever been analyzed? I went to the University of WA women's health clinic where they took scrapings and analyzed them under a microscope. The top two layers of vaginal "skin" are not being produced. This leads to atrophy and soreness. I cannot use OTC vaginal yeast infection products because they contain alcohol or boric acid and burn.
I think that petroleum jelly (Vaseline) can smother the skin and lead to a proliferation of yeast. Plus if you have a concurrent disease there could be even more problems. And you can bet the interaction between the two will never be studied.
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My turn to apologize to you, Jaycee 49, for not addressing the topic. Yes, I do and libido at this point is a word that is in the dictionary but one that I do miss experiencing. Thanks for the clarification.
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Hi Ladies:
I posted in a few other spots regarding vaginal atrophy in the past and what I do that seems to work. Here's my routine and it has been recommended and approved both by my OB/GYN and Oncologist:
1. Three cheers for Mona Lisa Touch!!! (Pssst. A secret that really needs to be advertised more so spread the word!! Non-hormonal FDA approved with three treatments initially, then yearly after that to build collagen in the vagina and labia.) Yes, this worked for me and was a starting point like I would say got me to about 80% back to healthy tissue. No, insurance does not cover the treatments. Yes, it's a crime that they don't. (If this were a male issue, then.... well, fill in that blank!)
2. Compounded vaginal estriol 1 mg. suppositories 2-3 times a week- (every day for two weeks at first then taper off to maintain at the 2-3 day per week.) (I use twice a week.)
3. I'm a huge fan of coconut oil in the mornings after shower and at night-(I make my own little cube suppositories and refrigerate them to keep the solid state. I alternate them and use on nights I do not insert estriol suppository.) (Hope that makes sense:) During the day, I use 100% cotton reusable pantyliners to keep the coconut oil from staining my panties. I also sometimes use 100% cotton pantyliners if I don't use the reusable pantyliners, (CVS brand disposable that do not have a plastic liner and they are breathable.) At night, I just wear old p.j. shorts to air the tissue out and don't care if those get stained from the coconut oil. I have not had yeast infections with this routine, so this seems to work for me. The cotton reusable pantyliners are washed easily and not bulky.
4. I do dab a small, and I mean small dab of vaseline on my "trouble spot" that tended to rip/tear and did in the past even before BC/menopause from basically not having intercourse too often and then jumping back into things too soon so to speak and then the tear at the "opening" which then really hurts, so the vaseline does help to coat that trouble spot and protect the tissue. I then rinse in the shower with a handheld sprayer immediately after intercourse to clean up so maybe that helps to eliminate bacteria and avoid yeast infections and UTI's.??
5. I used to get yeast infections and UTI's all the time before Mona Lisa Touch and estriol 1 mg. combo. (I never used vaseline before BC treatments and menopause but I also did not even think to research or ask my doctor.) I just know the small amount of vaseline used only for purposes to help protect the tissue in my "ripping area" as the exception has not given me a problem and has helped prevent the horrid rips and tears! Thank goodness.
*During chemotherapy, I tried to have intercourse and it was a no go! (How horrifying. I cried and cried and thought my sex life was over!) I had a "sandpaper" vagina, UTI flare-ups and a horrid cycle of yeast infections that did not respond to over the counter Monistat. I was not on estriol during chemotherapy and never tried Mona Lisa Touch. My BC surgeon told me "no" to any type of estrogen use even vaginal route (I asked) but since then, 2017, she has changed her mind and, of course, my OB/GYN promoted the vaginal/local use of estrogen all along, however, was respectful to what the BC surgeon suggested at the same time. My MO said QOL was important and that he had women on local vaginal estrogen for years without a problem but to follow up with my OB/GYN for the prescriptions. I tried Estrace but was allergic to something in it. My vulva swelled up and then the tissue peeled like an onion! My goodness, it was horrible. So, had to switch to compounded vaginal estriol in a vitamin E oil capsule.
*I feel the combination of Mona Lisa Touch treatments to help build up the collagen and the vaginal estriol 1 mg. compounded suppositories, use of topical for the vulva and homemade coconut oil cubes used as suppositories at night, and small dab of vaseline when needed during intercourse has been my solution. I also have used YES lubricants during intercourse. They are non-hormonal, paraben free and water based all natural. (Please excuse my run-on sentences. ha.ha. Just getting my message out loud and proud!)
Hope this helps! It has been a long road for me to figure out a workable solution but am thankful for what I am doing now.
As you can read in my profile, chemotherapy, full hysterectomy, and taking an AI knocked the estrogen right out of my body, so I needed do something otherwise I would be living with that "sandpaper" feeling all the time. (No thanks.)
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Hi ladies, in the last couple of months my situation down below has changed significantly. My areas down there has become more closed in, I'm assuming because of my hysterectomy a could of years ago and my body is changing also. I know it the drop of estrogen because my skin is drier, hair is falling out more, nose drier, eyes drier, and things below drier too. I'm miserable.What should be my first course of action?
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Shetland, I went to the site you mentioned. I recognize the layout so I must have been there before. It looks a little advanced for my level of issues. I am in kindergarten. This site is for college and above. I just want to sit without pain not have wild and crazy sex.
Corky, good to see you. I've never had my vaginal tissue analyzed. Wouldn't know where to go for that. How do they take a sample to analyze without doing any damage?
Lilly, thank you so much for posting that description. Lots of good info. I still have an issue with estrogen products, which my MO doesn't want me to use and I am torn about. Stage IV, ER+ ... what do you do? Right now, I'd just like to have ONE GOOD DAY. Sometimes I think I should use NOTHING and see what happens.
Meow, first course of action? Read the post right above yours. Maybe a moisturizer like coconut oil. Talk to your MO, gyn, and/or PCP. See which one seems open to being really helpful. It may be none of the above but worth a try.
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Hi Jaycee, I went to the University's Women's Health clinic. I had a referral from my then gynecologist. The University gynecologist did a scraping with an instrument, much like the cervix is scaped for a PAP smear. It was quick and nearly painless. The doctor looked at the scraping under a microscope. He came back with the results in ablout 20 minutes.
That is why I wouldn't have the Mona Lisa touch. I do not want my already compromised tissue to be burned with a laser.
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Jaycee:
Totally understandable!
Mona Lisa Touch is non-hormonal and was totally worth it for me! Maybe investigate that and try the coconut oil, and great lubricants like YES products? Like I mentioned, the Mona Lisa Touch solved 80% of my issues. I can't say 100% because chemotherapy effects last, and with the complete hysterectomy plus the AI, well, just stripped me of collagen throughout and left me like a dry desert! Seriously thought things were a lost cause...
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I couldn’t agree more. I was married for 25 years; sexless the last 5 years. I left. I found my buried sexuality and have been having amazing sex the last two years (I’m 60 now). I went off HRT cold turkey and continue mourning the support HRT gave me. I had a very high sex drive. With HRT I still got very wet when aroused which added to feeling sexy. Now, the thrill is kinda gone and without stopping for lube, it’s like the Sahara desert. Dr. wants me to start Toremifene and will allow Premarin vaginal cream. I already experience joint pain and body aches. The prescriptions are sitting at CVS. Oncotype test says 9% stage 4 recurrence taking it and 17% without it.
Could someone share their experience with Toremifene from a sexual standpoint? I love sex. I’m absolutely heartbroken. I’m single, dating a nice patient guy but I feel I only have another 10 years at the most to enjoy a vibrant sex life. I don’t want it marred any worse than it already is.
If this situation happened regularly with men, world peace would occur so that all funds directed towards nationaldefense could be spent on finding better bc treatments that would increase sex drive and sexuality. It would probably include weight loss and collagen production!!
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omg. Thank you. Thank you. I’m still so heartbroken over my loss natural lubricant. Still getting wet at 60 made me feel really sexy. Now I can almost hear the dry desert wind blow when my S/O and I are together. We need lube for f-ing foreplay! wtf
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Red - at 60 you are still young - you have more than 10 years!!! I am using Imvexxy which is similar to premarin but a suppository and less messy. We also use "G" which I get at Sprouts Market. You can still be sexy. I'm 63 and things are better than ever (and yes, there were a few years that it was awful) but there are some great lubricants than make foreplay very pleasurable. Best of luck to you
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Red - at 60 you are still young - you have more than 10 years!!! I am using Imvexxy which is similar to premarin but a suppository and less messy. We also use "G" which I get at Sprouts Market. You can still be sexy. I'm 63 and things are better than ever (and yes, there were a few years that it was awful) but there are some great lubricants than make foreplay very pleasurable. Best of luck to you
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Red - at 60 you are still young - you have more than 10 years!!! I am using Imvexxy which is similar to premarin but a suppository and less messy. We also use "G" which I get at Sprouts Market. You can still be sexy. I'm 63 and things are better than ever (and yes, there were a few years that it was awful) but there are some great lubricants than make foreplay very pleasurable. Best of luck to you
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Jaycee, I know, some of that site seems a bit over the top, eh? But I dig around it for the information I want. Runor wondered about Vaseline. In the Q&A section the doctor says, “Vaseline is an oil based petroleum product that is very difficult to naturally clear out of the vaginal space. It can cause something similar to vaginal acne, and can cause or intensify yeast infections if you get them fairly often.” I don’t know how Lansinoh (USP modified lanolin — no allergens) compares to Vaseline for vaginal use, but I will say that I prefer it over Vaseline for wound healing as it is not a petroleum product.
Regarding the idea of doing nothing, I did that unintentionally because I got too busy moving house to keep up with coconut oil, boric acid vaginal suppositories, and Intrarosa vaginal suppositories. I do not know what fat these last two had in them. So I stopped all that and the only thing I did was decide to start sleeping without wearing undies because bv seems to like tight garments. And guess what, the itching of bacterial vaginosis has gone away! So now I am thinking about what my rehab plan ought to be.
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Thanks, Shetland. I need to dig around on that site some more. Right now I am alternating between fluconazole and Tioconazole. Fluconazole, the pill, messes up my stomach and I only have two left. When my PCP wrote an rx for seven last week, Walgreen's first said it was delayed because of insurance. Then (I look at my online account), they said the seven would be $144. Then they said it was too soon for a refill. Then they filled one for $0.36. I picked that up and took it but have two left over from some time in the past. Obviously, my insurance will only pay for one. I need to get more single prescriptions or a bunch of refills? The Tioconazole is a gel. It worked the first time. Not any more. And all of it is making the dryness worse. I'm still waiting for my new gyn appt on July 8. At least I'll have something to tell her. All about my constant clinical trials, sample size of one.
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For those who have been using estrogen cream, have you found an increase in pleasure? I've been using it for about 9 months and although the pain is gone, I don't feel sex at all. Which leads me to my next question--I was wondering if any of you ladies have trouble with the nerve endings in the clitoral area? I thought it was from chemo because I haven't felt my clitoris since fall of 2016 (I also haven't tasted anything since then so my QOL bucket is pretty empty!!) . Evidently I have clitoral atrophy--my GYN said to smear a little of my estrogen cream in that area for 3 weeks then go to twice/week. I'm at the 3 week mark now--NOT improving.
Then I ran across this when I came home to research it: "When a woman's level of testosterone drops, such as occurs with menopause or the use of hormonal birth control, she could experience a decrease in size, function, and sensitivity of the clitoris over time: a condition known as clitoral atrophy. The use of bio-identical testosterone in a cream, pill or injection can be helpful in restoring not only the size and sensitivity of the clitoris, but a woman's sense of well-being, sexual libido, and vital energy. Within this category, we suggest warming lubricants and stimulating gels to encourage bloodflow and sensitivity to the clitoris. The use of a vibrating device that focuses sensation on the clitoral area can help provide stimulation and make an otherwise frustrating experience, more relaxing and enjoyable." I have no idea about testosterone creams but I have read the testosterone can convert into estrogen.
During my research I this---The University of Chicago Medicine's Program in Integrative Sexual Medicine (PRISM) for Women and Girls with Cancer is designed to identify, prevent and treat sexual health problems in female cancer patients and survivors. We help women and girls learn about, prepare for, and cope with sexual health concerns related to cancer symptoms or treatment. I'm less than an hour away. I plan to make an appointment.
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