I WANT MY MOJO BACK!
Comments
-
I am almost two years (of ten) in on my tamoxifen (after lumpectomy, 6 lymph nodes removed and thirty rounds of radiation).
I am in that group of people who is living life through chronic joint pain and stiffness and miserable sexual side effect of tamoxifen. I felt like my oncologist was ignoring my pain for a year - he was being cautious, I get that now.
My husband and I have had a fun and active sex life for more than twenty years. Now I cannot have it as often or as long and he is getting frustrated. I have tried to tell him my vagina does not "bounce back" like it used to, I can be uncomfortable for days after an active evening. I feel like we should be happy with sex once a week but I feel like he is being deprived when I need to say no, even after explaining I just cannot due to discomfort.
How do I help him understand that I am not rejecting him, I am uncomfortable, swollen, itchy, sometimes - in pain, and cannot just have sex like we used to? Me telling him it is a menopausal side effect forced upon us by tamoxifen is perceived as an excuse that does nothing less than make me feel like poop.
0 -
KCMC - I just realized that I hadn’t yet responded to your lovely comments! Thank you so much for your kind words. They helped me greatly! I am trying to take things one day at a time, one issue at a time.
Mrs Kk, I am so sorry for what you are going through. You are a very loving wife to be concerned for your husbands needs and feelings. Maybe having your husband visit with you and your dr to talk about the sexual side effects of treatment might help? I am not anywhere near where you are in my treatment yet, but I do know my last sexual encounter just prior to my MSX was very painful and it took me over a week before I felt myself bounce back to normal. Maybe some of the ladies on this thread will reply with how they handle the isssue. I know it is still heavy on my mind how my treatment will affect my romantic life.
Ladies?
0 -
KK, once a week??? My husband would be in heaven with once a week. He's lucky if he gets manual satisfaction once a month. Now, I have been struggling with this issue for a very long time due to multiple health problems but cancer and cancer drugs have certainly added to it. Tell DH you could stop taking Tamoxifen and risk the cancer coming back. He could choose that. If he loves you, why would he want you to be in pain? I don't get it. The pain is very real. Go to your gyn and get her to explain the damage being done to your vaginal tissue by his demands. You need to start doing some serious moisturizing to prevent that damage from being permanent. I know this is too much gloom and doom but I had to LEAVE my DH for three years to solve this problem. There are other ways to achieve orgasm than penetration. He needs to be satisfied with those. You need to stand up for yourself. Him causing you pain is not acceptable in a loving marriage.
Sorry. When I read your post, it brought back all the pain, both physical and emotional, that I went through because of this problem. I want you to be able to avoid some of it, if possible. I hope my experience can help.
0 -
jaycee ^^^ bwahahaha!
KK, after the initial laugh, I agree with Jaycee. She has some wise words there.
I will say that my husband didn't realize the extent of the pain and dryness and all until I had to say it multiple times. He had to understand that C changed our lives forever and unlike his ED there is no magic pill.
Once that was clear, then he was the one who worried all the time about hurting me. It takes a little time and the ability to speak freely. We have found ways to be creative with things that don't always involve intercourse. There is a lot of fun to be had if you're both willing do drop a few inhibitions.0 -
fathsmama, Jaycee, and smwusaf - thank you for your reply. Like I said we have had a very active sex life, it has been important to me too, not just him. I would never call it demands. He has offered to attend my last few oncology appointments and I always say no because I am such a crab on "doctor day." I think you all are right, he may understand the actual pain and damage if he hears it from the doctor. Thanks all.
0 -
MrsKK: sexualityresources.com is a great resource! You should give it a look-see.
I can hear in your post that you are apleaser by personality. This is maybe a good learning curve for you to learn to communicate YOUR needs and give your husband the batton to be the care taker in this scenario. I think once he understands your true level of discomfort, he will feel badly for causing you pain and won’t feel rejected in the least.
0 -
MrsKK: 1. I have found the ob/gyn to be more helpful than the MO as far as help. It is their area of expertise. 2. I pop in from time to time to recommend sexualityresources.com because it is the only place they have specific instructions how what to use, what to do each day, and if your husband reads it with you, he will be informed too. Look for topics on cancer and vaginal rejuvenation.
On tamoxifen and pre- menopausal, I still needed to use lube even though I felt like I didnt need to. I kept getting UTIs without lube until the nurse told me I had to use lube. Lesson learned.
After being “shot into menopause” with zoladex/ lupron is when the real trouble started and I found the website above so helpful. In short she recommends regular vaginal moisture during the week plus lube during sex-silicone for him, water based for you. If you have pain on entry, you may need dilators and again, products are for sale and specific instructions are given.
0 -
My PCP retired the end of May. She had Rx estrace for me. Her replacement doctor (had my annual check up June 1st) who I like, but is very young, is not comfortable with Rxing it for me and told me that I need to consult with my onc. I see him again in September and I think he is comfortable. So may difference of opinions between new pcp and old one!! Some I agree with and others I don't. But no desire to look for a different doctor. I've been in this practice for close to 15 years.
0 -
For anyone experiencing painful intercourse, dryness, itching, etc due to the meds we take, there is help out there that actually helps rejuvenate the tissue vs just libricating/moisturizing it. This means you may be able to have intercourse more than once a week/month!
Intrarosa was recently approved by FDA for relief of those symptoms. It’s basically DHEA and works on the local tissues to rejuvenate them. It is not systemic. My GYN has no problem prescribing it for me based On her research of it where she would not prescribe estrace or nuva ring for me because of ER+ BC.
Mona Lisa Touch is a laser rejuvenation treatment that helps with these symptoms. 3 treatments over 18 weeks then once a year after that. Women are reporting relief beginning after the 1st session. Many Women’s centers that offer the treatment give a discount to BC patients if your insurance doesn’t cover it. I’m very interested in this one so I’m not dealing with Daily meds for it. I just found a women’s center in Elkin NC of all placesthat does it called Total Woman Care. Very excited!
0 -
Thanks for the info Lula!
0 -
Lula, I’m confused. While it sounds great, I found this on Intrarosa (prasterone):
Warnings and Precautions:
Current or past history of breast cancer.Estrogen is a metabolite of prasterone. Use of exogenous estrogen is contraindicated in women with a known or suspected history of breast cancer. Intrarosa has not been studied in women with a history of breast cancer.
Full article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5265233/
Has something changed that I missed?
Thx
0 -
None of my doctors would allow me to use DHEA or estrogen in any form. Including Intrarosa. I saw that warning, too, when looking at it.
0 -
Ug...it sometimes feels like bc is equivalent to castration. Anyone else feel that way
0 -
Faith - I did in the beginning, so I hear ya, but not anymore. I eventually got to a point of turning my back on the crappy side of it, self preservation I guess.
0 -
So the Intrarosa has not been tested specifically in women who have a history of BC (those studies would take decades to complete).Therefore, the FDA requires that statement to be included in the prescribing information. When you get into the science of how it works and that blood estrogen level increases while taking Intrarosa are undetectable by standard lab assays it's a whole different ballgame. That's why there is no boxed warning about blood clots, etc like on the Premarin and Estrace labels. The information on Intrarosa only applies to intrarosa and may not be accurate for other brands/formulations of DHEA. Most if not all MOs have not been inserviced on a Intrarosa so they will likely flat out say no. However, most GYNs have been so you'll want to start there. In fact I'd start by asking them if they have been inserviced on it. If not, ask them why and if they would be willing to so you two can have an informed/educated discussion about it.
0 -
MrsKK, just have him read this thread.
I used to have the pain on entry, almost felt like a tight ring around my vagina. I would also tear and bleed, felt like friction burn too. That bothered my DH. I was using lube and coconut oil. Luckily my gynecologist and MO were on the same page so I use Estrace. I found I could use less then prescribed. Pain went away, sometimes still tear a little. I have to be careful on entry, not too fast and at the right angle. But I can actually handle two days in a row, although that’s is rare, usually about once a week. But I was also already in menopause when dx.
Now I just need to learn how to get out of my head and more in the moment.
0 -
chicopeach- Hope it’s not TMI, but a blindfold could help with that. It shuts down your vision so your body becomes more sensitive to touch and sound. Headphones work for sound if need be too. That way your body is focused on your DH and what he’s making you feel. Then you react off that.
0 -
Since being diagnosed, I have used Premarin. Without my oncolgosits knowledge or permission. When the situation in my lady bits gets so miserable that I can no longer function, I apply a dab the size of a pea, literally, .5 of a mg, and like magic, the problem is gone and stays away for months. (I have only had to do this one time since breast cancer so once in the last year and a bit)
I wonder if the use of Premarin would be more accepted if it could be used, once in a while, to relieve immediate symptoms. Obviously continuous use or even regular intermittent use is not good. But shooting a dab of it up your vagina once every 6 months to relieve the hellish symptoms ... can that really be all that bad?
So the question is, are these other vaginal medications useful if used only when symptoms require them? So rather than every night shooting up your gob of whatever, you just use it when things get miserable? I guess I feel better about applying a dab of Premarin once every 6 months than I would using something else every day, or every week.
Do these other products have any positive effect with intermittent use?
0 -
Runor, I think this is a very good question, and that it is high time some serious research is done on how to safely counteract the sexual SEs of our treatment. I get so tired of reading advice to "love yourself" and "be creative" and "explore other ways to be close" and bla-bla. How about helping people to get back to pain-free boinking, plain and simple
0 -
@ Momine love the pain free boinking..lol
We know how much effort goes into research for men with sexual difficulties from meds. etc,...shouldn't we get the same?
0 -
My Mo just gave me a prescription for Vagifem, this is a very small controlled dose of Estradiol that she feels comfortable with giving me. The Ladybits help but I needed something more. You can get price reduction coupons on line for Vagifem.
0 -
I am doing .5 mg of estrace 3x a week.
0 -
One thing that I did last week that didn't go well is shower just a few hours before we had sex. It was terribly painful, just couldn't o, which sometimes happens. (More frequently after BC). Sat I did it earlier in the day and I was fine.
0 -
Hi all,
I wouldn't use Premarin, because it come from pregnant Mares, worry it is not as close as a Bioidentical Estradiol like Vagifem. In actuality I see an Naturopath who prescribes the Bioidentical Estradiol/Hyaluranic Acid/Vitamin E specially Compounded Prescription Suppositories, that I used nightly for 2 weeks, and then I switched to a specially Compounded Prescription Suppository with Bioidentical Estriol/Hyaluranic Acid/Vitamin E that I will use 2 to 3 times per week forevever to maintain Vaginal/Urinary Health. All Estrogens, whether Bioidentical or not, do have some risks of triggering Uterine proliferation (that is listed in the literature if you read up) that increases risks of Uterine Cancer. Therefore, after discussing this with my Oncologist and Naturopath, I am also on specially Compounded Prescription Bioidentical Progesterone 50mg dail at Bedtime to decrease the risks of Uterine Cancer that might be increased by the vaginal Estradiol/Estriol. It has been proven in mulitple studies that Bioidentical Progesterone has no risks of causing cancer, and that in fact it decreases risks of endometrial and breast cell proliferation. It used to be given as a bc treatment before tamoxifen existed.
A lot of confusion happened because much research has been sloppy in grouping artificial Progestins and Bioidentical Progesterone together. They are completely different in actions and risks for cancer. Progestins like Prometrium are prescription Bioidentical Hormones that extremely safe, and have a number of benefits like improved sleep, decreased risks Osteoporosis, as well as decreased Uterine and Breast cell proliferation.
Win-Win !!!
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4960754/
Progesterone vs. synthetic progestins and the risk of breast cancer: a systematic review and meta-analysis
Noor Asi, Khaled Mohammed, [...], and Mohammad Hassan Murad
Additional article information
Abstract
Background
Use of menopausal hormonal therapy (MHT)-containing estrogen and a synthetic progestin is associated with an increased risk of breast cancer. It is unclear if progesterone in combination with estrogen carries a lower risk of breast cancer. Limited data suggest differences between progesterone and progestins on cardiovascular risk factors, including cholesterol and glucose metabolism. Whether this translates to differences in cardiovascular outcomes is uncertain. We conducted a systematic review and meta-analysis to synthesize the existing evidence about the effect of progesterone in comparison to synthetic progestins, each in combination with estrogens, on the risk of breast cancer and cardiovascular events.
Uncovering the Role of Progesterone in the Treatment of Breast Cancer
Jul 15, 2015
Clinicians have long observed that breast cancer patients who are both estrogen receptor (ER) positive and progesterone receptor (PR) positive have better clinical outcomes. These patients tend to respond better to treatment and have a lower risk of relapse, even though they are treated with the same hormone therapy as their ER-positive, PR-negative counterparts.
Now, researchers from the United Kingdom and Australia have uncovered the molecular underpinnings of why upregulation of both hormone receptors results in better tumor control. Their results, published in Nature, suggest that hormone therapy with progesterone could be used in the treatment of ER-positive, PR-positive disease, which makes up about half of all diagnosed breast cancers.
Using ER-positive, PR-positive cell-line xenografts, as well as primary ER-positive breast tumor cells excised from patients and grown in a lab, Jason S. Carroll, PhD, of the Cancer Research UK Cambridge Institute, and colleagues observed that the receptors for estrogen and progesterone physically interacted within the cell. They also found that the global gene expression profile of these cells was different when the cells were exposed to estrogen alone vs estrogen plus progesterone and, in the presence of both hormones, was linked to better clinical outcomes.
Adding progesterone to tamoxifen, the researchers found that the ER is redirected to different transcriptional targets, and its activity is blocked, said Jacqueline F. Bromberg, MD, PhD, of Memorial Sloan Kettering Cancer Center in New York, who was not involved in the study.
Moreover, the use of progesterone with tamoxifen slowed tumor growth compared with either hormone alone in both cells grown in the lab and in breast cancer tumors implanted into mice.
"[This study] beautifully elucidates a previously unknown function for the PR in modulating the behavior of the ER in breast cancer," said Bromberg.
While important, the preclinical study cannot yet be directly translated into clinical trials, said Bromberg. All of the experiments in mouse and human models required the addition of estrogen, as well as tamoxifen and progesterone, which is not clinically relevant. Additionally, the type of progesterone used in the study is not one used in clinical practice.
0 -
Seeing so many women responding to my concerns has been uplifting and empowering. I found a product called V-Magic which has helped significantly with external issues and Genneve for internal, still early in use but taking the time to explain the importance of having these products and the purpose has been incredibly helpful.
I am grateful for a husband who still sees me as beautiful and desirable even though I see myself as well as physically/emotionally feel so different. It hurts that my body doesn't respond like it used to, I finally had to tell him to not work so hard to make sure I am satisfied, I can't necessarily get there every time (most of the time I cannot, which is new to us) and whether I finish or not can no longer be a priority a and I am ok with that, he just really needed to hear it is not him doing anything wrong or different, my body has changed what was always fun can be painful now.
Thank you for making me feel normal for what felt foreign and heartbreaking. I hated having the man I love so much feel rejected. We just had a loving evening out of town with time to talk and connect...sadly, we were prepping for a surgery on my jaw this morning for serious fast onset joint degeneration - supposedly unrelated to the rest of the joint issues brought on my tamoxifen, lol. Such is life, our new normal is challenging to say the least.
0 -
Mrs KK: Wishing you the best with your surgery.
0 -
Ba ha ha, Pain Free Boinking. I want that on a t-shirt along with Down With Taxes!
I HATE, like really HATE how these devastating effects like sexual destruction are called 'side' effects. Side my ass. These are EFFECTS. That's like saying a side effect of drowning is death. Are you kidding me? 'Side' makes it sound like an after thought and not the major problem it is.
It might be worth it at some point for me to look into medication other than Premarin. But if I only need to use it twice a year and I know it works, and boy does it ever, then I don't want to mess with what ain't broken.
To add to the misery of a vagina that is broken, there is the whole tamoxifen induced leg cramp issue. Never fails in the middle of some passionate moment my leg, from thigh to toes will seize up and assume the shape of the letter S as it wrenches itself into spasmodic constriction and all pleasure ends abruptly as I scream GETOFFGETOFFGETOFF, and no, not in the good way, as I hurl myself to the floor and try to flex my leg into a normal position. What the hell! I think my husband is beginning to fear me, like a hand grenade that is faulty or might explode without warning. It's never clear which way it might go.
0 -
runor,
Your metaphors are the BEST!!!!
0 -
OMG, runor! LMAO! I never connected those cramps right in the middle of all the action with my brief stint on tamoxifen but they started after I started tamoxifen and ended shortly after I stopped. Yep...getoffgetoffgetoff!!!
0 -
everywhere I go Runor makes me laugh. You're just a joy to be around my friend. I have to chime in here. Because I used to be very active with my husband....it was And is a priority and to me a scary challenge. To me I feel I look like a recycled mannequin, that can't even raise her leg high enough off the bed without needing a shelf for support. I'm sure the cobwebs would need tending to and once it starts who knows what will happen next. We could spin the sex or scream wheel???? What will it be!!?? Spine pain? S letter shaping of cramping body parts? Sand paper vagina effects? Searing pain in the back of my pelvis, that I want to cry out.?
Uneven breasts and only one has a nipple outta get him going for sure!!. The way things in the sack surely have to just plain be planned and patient. I know it's important, but for me it was a mix between, feeling irritated during, and confusion of what I was feeling because of elasticity changes and I am now menopausal. Most woman couldn't care less if they see a penis again. I want to make my DH happy he deserves it. I love him more thanwords could express. So as long as it doesn't grow teeth and bite him, I'll do my best to satisfy. You Runor are truly preciously funny. Hugs my friend ~M~
0
