Everything . . .I found this booklet on line and wanted to share
updated link to this booklet
that was a good read. thanks!
LOL. Excellent. I bookmarked it.
Great booklet OneBadboob! Thanks for sharing it here :-)
Very informative and helpful. Thanks for sharing.
I know there is a thread on this somewhere but I can't find it. I am SO ANGRY that no one prepared my husband and me for a total lack of sex. When I was in chemo, I was SO not interested, so a nurse asked me how was intimacy going and I laughed and said all we do is scratch each other's backs, which was true. Now that I'm not afraid I'll barf on him because I'm in radiation, we tried sex. PAIN to the tenth power. Then I remembered friend who's on tamoxifen saying it ruined her sex life and her husband was mad as hell. WHY didn't I pay attention to her? Maybe because I had just gotten a diagnosis so I was a little distracted. And maybe that's why they don't tell you. It's too much bad info at once. But seriously, there is NOTHING to be done. It's not dryness; it's tightness - vaginal atrophy. Can't take estrogen creams because my cancer was hormone positive. KY jelly only helps the partial insertion since I am most certainly smaller (Sorry for the graphic description), but not the pain. I read on a UK site about the possibility of adding lidocaine to the KY so that at least it lessens the pain a little. I SO am not interested in sex in the least, but my poor husband has been through so much for me; I need to be able to at least grin and bear it. I can fake it with the best of them, but not if in awful pain. I am going to call my GYN's and Oncologist's Nurse Practioners tomorrow (Since doctors rarely return calls here unless it's to tell you that you have cancer) and ask if that's OK on a regular basis. I will also ask if repeated tearing and bleeding of the vagina has any long-term risks, since that's what will be happening. Then I will report back here.
Has anyone else tried lidocaine plus KY? Has anyone else had painful sex and bleeding for a long period of time with no complications except the dread of sex? And I think that's a pretty bad complication.
Do a search here for "scream cream", many have found this helps. This may be what you want to ask your doc for. It needs to be made at a compounding pharmacy
I had some initial tearing and bleeding, but that has stopped. It has been about a year. KY has been helpful, there is some discomfort, but that disappears after a minute or two. Patience on my partners part helps as well. My onc did give me a prescription (I forget the name)
You really want to get to a point where it is more than just grin and bear it The dread of sex - awful complication
Dear baldashell, Welcome to the BCO community. We are glad that you reached out here. In addition to the helpful resources that you are being offered here you may want to search our site for ideas. Take a look at this Q&A on Sex Matters Reading. Keep us posted on what you learn. The MOds
Had the same problem since Aromasin. Dr. Said to use coconut oil on both my husband and me. I have to say it has made a world of difference. She said to apply it to myself every day as far as I can. You would think it's greasy but it's actually not after it absorbs. Worth trying.
This is so depressing. No one prepared my boyfriend and me either. My doctor told me her job was to save my life and not my job. I guess that goes for my relationship too. If we aren't alive, we don't need sex! We didn't understand the implications of chemo. It is almost 3 years now and I went from someone who picked her relationships based entirely on sex to not being able to even consider it from pain. Sad, sad, sad. I'm too young for this. I'm glad to be alive but am stick majorly shocked at what I have been through and the aftermath.
many oncs will prescribe topical estrogen which helps with the "shrinking" and dryness. Those of us who also had hysterectomies can really suffer form this.
are most of these issues caused by the chemo or the AL's?
Mine was caused by Arimidex -as I didn't have chemo, and no after effects from a hysterectomy twenty years ago. But then I must have still had hormones in my system that were feeding my breast cancer
At age 52 I had CAFx6 (not as commonly used now but still used for some), rads, and a brief run of tamoxifen for my HER2+++ 1.9 cm tumor, with just a lumpectomy (so no psychotrauma based on loss of breasts). I completed chemo at the end of July, 2002 and still had a decent sex life with my lifetime partner -- no problems with tightness or any need for additional lubrication or counseling. I started rads in September, 2002 and completed it in November, 2002, and still had no problems of any kind. I started tamoxifen in late November, 2002 and within 2 weeks my sex life was over and painful. I used e-string for several years to "accommodate" my partner but never again enjoyed sex. That was even though I only took tamoxifen for 1 year at full dose, followed by 3/4 year at half dose. Gradually even the e-string stopped helping, and everything stopped for us for good.
I totally disagree with one professional's assessment of this. (She has had bc herself, although never had to do chemo.) She suggested that the tamoxifen probably didn't make any real difference because I must have been almost menopausal due to the chemo anyway, and that the tamoxifen just pushed me over the edge. Really? So I just sat on that edge from the end of July 2002 clear through November 2002, doing just fine sexually despite the trauma of chemo, including baldness and weight gain, etc., without any sexual problems of any kind, and then within a mere 2 weeks of starting the tamoxifen it changed everything in my intimate world, but it didn't "cause" the problem? How simple (and convenient an explanation for a provider to say)....
I think responses to this issue likely need to be discussed with some frame of reference in regard to one's age. But I also think different people are affected differently by different therapies. I would never have gone near tamoxifen after doing chemo had I known what the consequences would be for me. And no professional seems to keep track of those "invisible" things in our behalf...
I was diagnosed at 50 with Stage III, 23 nodes, I had a lumpectomy, radiotherapy and chemo (TAC). Just like you I was prescribed Tamoxifen for two years to be followed by Arimidex for 5 years (currently still on Arimidex). While on Tamoxifen my vagina was literally "locked". This meant that intercourse was impossible, and if attempted at all it was like knives cutting through me. Therefore intercourse did not take place, because after several attempts we gave up. I thought my normal sex life was over for ever. However I was amazed to find that when I started Arimidex I could have penetrative sex again. I am so glad my husband was loving and patient with me and relieved that we could resume a normal life as full partners. I explained all of this to my oncologist, but he didn't seem to have heard of this problem before. Now that I read your experience above, I have to think that some women suffer this extreme vaginal atrophy due to Tamoxifen. Maybe you can try a different a.i. and see how you get on. It is too sad if one's intimate life is ruined by a drug which could be substituted for something else, which may not cause the same problem at all. I wish you all good luck for the future.
Thanks, gardenbird. At the time of treatment in late 2002, AI's were not yet approved for use for adjuvant treatment, and tamoxifen was the only available drug. By the time I actually quit tamoxifen, they were available and my onc recommended it (not for sex but as an alternative because I was then considered menopausal, which has been generally considered necessary for use of an AI, at least until recently.) I chose not to take an AI at that time because there was no indication it would help with sexual problems due to prior tamoxifen use, and because I hoped that dropping tamoxifen would improve matters, although it turned out that did not help. I participated in a trial for the use of low-dose testosterone for early stage bc patients, but that trial was quite brief at a very low dose and did not seem to help. I chose to subsequently continue the testosterone at the low dose and it did not help. But it DID help with maintaining better bones and muscles.
Scientifically speaking, there needs to be thorough documentation of what goes on for each of us on our therapies so that we have real information about treatment instead of stupidity.
Alaska, thank you for your response. That is terrible. I am 59, just turned that this month. With the surgery and all that going on, have to say, haven't attempted a lot of contact but so far, haven't noticed a problem. I do take generic Arimidex, no tamoxifen. I was already over menopause when this all happened, so I'm guessing, most of my changes had already taken place and it likely wasn't as much of a shock to my system to take the meds as if I had been premenopausal.
Gardenbird, thanks to you too. I didnt' even realize this was a possible side effect until lately. I have been nervous about sex and haven't quite known how to handle it. Not very romantic for my husband for me to be wearing a bra and pajama top but I have not had the nerve yet to take that off. I am not saying this is his fault, its likely more in my head than in his. I have just had my exchange in December and a lift to the natural side. I have told him I'm sure he'll like the lift side. I wasn't one to parade around without clothes before any of this happened because I have been overweight a long time and I do think back and logically, I think he accepted when I gained all this weight, he accepted when I had stomach surgery and have a huge scar right up my mid section that looks like a zipper, so I feel sure he can accept this but so far in my mind, I'm still afraid. I saw on an earlier post someone said her husband couldn't look at her in the doctors office. I was the opposite, when I was standing there being drawn on and my husband was sitting there, I was so uncomfortable I could have died. I'm more like another poster who said I didn't even want to look at myself.
No one here talked about vaginismus dilators, I thought I'd mention them. For me, the fear from bad episodes after chemopause at age 39 caused significant vaginismus. I got a huge amount of confidence back with a dilator set, which I gradually built up to. I never got the biggest one in, yuck. But it has made so much difference, my body doesn't automatically tense, because I know it is physically possible to do thanks to the dilators. I hope that makes some sense. As someone who has also struggled with painful pelvic syndrome on and off, sometimes with severe flares lasting years on end, it really can get better. A bonus is, it's a great way to lubricate everything down there, I use almond oil, but coconut would probably be great, too. I do it when I'm alone, and I don't pressure myself. If I can only get a couple in, that's alright. You do have to be consistent, especially if you have atrophy. I have a friend who went through uterine intra-vaginal radiation, and she also used the dilators and got better.
I also think we need to take a lesson from the gay community and consider "little" and "big" sex: so much emphasis is on intercourse, but there are a million other things to do, and it all results in the same thing (well, hopefully).
Here is the set: https://www.vaginismus.com/products/dilator_set
I was prescribed the dilators. I was diagnosed when I was much older (not in my late 30's but in my early 50's) and that likely makes a difference. I tried them with every lubricant, but could not even get the smallest one in.
OH MY GOSH. I have been feeling so alone on this. Just posted the other day in the AI section about dryness. It was recommended I come to this forum. I have tears in my eyes. I had been reading and reading and finally did my own post "AI dryness - nobody?" and got responses and then as I said, recommended to come out here.
I literally am teary. I had forced menopause at 38 due to a hysterectomy and was on estrogen for a few years and just stopped taking it because of all the bad press - glad I did because ten years later I was diagnosed with DCIS and I am thinking it possibly could have been worse. Any way......even in menopause, I WAS NEVER DRY. I need to look up vaginal atrophy because this feels like more than just dryness.
I just used Estring this weekend - it is in there for 90 days to see if it helps but a few have also suggested coconut oil and I think I will try that.
I agree with all of you - I am so angry that this was NEVER brought up. I get that they want to save our lives and I am grateful, truly grateful. But nobody fully explained to me what my radiated breast would end up looking like and NOBODY ever told me about sex related problems. I would have preferred to be prepared than keep this to myself for several months screaming inside because of pain during sex. My DH has been so amazing - not just now, for the past 32 years. We have an amazing relationship and it crushed me to tell him I was in too much pain.
I agree, there are so many other ways to have fun and we do but the closeness of penetration.........
I hate sex. I had low libido before I had cancer and now it is completely gone and so painful I screamed when we tried. I had a double mastectomy followed by chemo and reconstruction. Have been on tamoxifen for two years now. Im 56. Its just depressing to be sitting in my kitchen and have my last kid go out the door and start to feel nervous because I'm alone in the house with my husband. He might want to have sex! I tried Estrace and that did not work. I would love something to restore my sex drive. I miss the intimacy.SOrry, I just had to get this off my chest so to speak.
It is so very useful to have a thread like this to vent your frustration, find possible solutions, support each other and most importantly know you are not alone in having these problems.
All or best
Great booklet! A supportive, patient partner and ky help
This may also be of interest to many of you...
Managing your Mojo (Part 1)
Managing your Mojo (Part 2)
Sexual Health Podcast by Dr. Michael Krychman discussing
Thanks for the link. I have a 'hyperactive' perineum and have been doing exercises prescribed by my gynaecologist, in preparation for intercourse, and using a menstrual cup (it really helps to figure how the layout of things, anatomically). Now I'm really worried I might never get to have sex: if both breasts are gone, and downstairs is off-limits, what is left?
I have my last chemo treatment next week (TCx4), my husband I have not had sex since my first (January) treatment as I have no energy nor interest in it right now. Reading this thread has really scared me as I am only 30 years old, I worry that my libido will not come back or that the pain will be so intense I just avoid it. Not to mention my self esteem is quite low due to BMX (I have not had TE or reconstruction yet), no hair, weight gain, "moon face" and acne caused by the chemo.
My husband has been amazing during this ordeal, but we have not discussed our sex life as it's been the last thing on ourminds. I don't even know how to approach this subject with him as I feel so guilty about it.
Teri....I am a lot older than you, but want you to know I am just fine in the libido department. I was fortunate enough to have a very understanding man in my life during active treatment. Alas, he is no longer with us. I think he looked at being without hair and on chemo as just another aspect of me. I can say that he found it exciting....had to hand him his eyeballs more than once!
I am now dating a younger guy and things are also more than fine. For the record, I do need lubricant. Wondering how things will be in about 3 months when I am done with hormonal therapy (anastrazole)?
I know that many women are affected with all sorts of issues post chemo and I think from the overall trauma of the experience, but a lot of us aren't. I know this from some of the other post treatment exercisers. I also think that we overlook our most important sex organ....our BRAIN. So yes, there are physical changes, but feeling desirable and sexy is also important. (I think it affects things like blood flow to the area.)
So please don't give up. I am an exerciser, and I think that helps, both in general well-being, and also with body image. I also do things that are sensual in my daily life: great food, sunlight, candles, warm baths. I wore silk underwear during treatment.
So good luck. And make sure you do wonderful everyday things for your husband while you heal in other ways. You will get there. - Claire
Teri, I am 34 and went through chemo last year at 33. My husband and I continued to be intimate through chemo but after it was done and I started tamoxifen I was very dry and in pain. Sometimes the pain was unbearable that I had to stop midway. I was in no mood to have sex. We used coconut oil as lube and I loved it.
For the last couple of months my Mojo is back, I don't need lube any more and very rarely I feel pain (but it is because of my inverted uterus - tmi- as I had some pain before bc).
Not sure if my age had anything to do with it but I surely hope that things get better for you.
Hi ladies, thank you for taking the time to reply and the words of encouragement, it truly means a lot to me.
I know my lack of mojo is due to the side effects if my current chemo treatment, and I hope once I am done i can get back to my "old" self.
I'm a little worried how it'll be when I start ovarian suppression and an AI, but I'll deal with that when the time comes.
Wishing you all the best!
I know what you mean about the pain, it's awful. I highly recommend trying Estring - your doctor has to do the prescription - I inserted and waited two weeks before trying sex and it was SO MUCH better. It is definitely worth trying.