Pain during sex

[Kiera49]

I am on zoledex, letrozole, desunamab and ibrance, when I try to have sex it is really painful. Has anyone else had this and did your doctor prescribe anything

[lynzer]

Me too but I think it’s from menopause which I was thrown into after I was diagnosed. Apparently, the walls in your vagina becomes think so it’s painful and can easily tear. I just had a simple Pap smear a month ago and it hurt so

much. Haven’t found any helps so far🙁

There is a Susan Kormen virtual conference in May about sex and breast Cancer.

eventbrite.com/e/the-sex-br...

Lynn

[lynnhbtb]

What is sex? Yes, painful, so my husband and I have found other ways to be intimate. I'm sorry that this, too, is a side effect of treatment/menopause induced treatment.

[Kiera49 in reply to lynnhbtb]

There was woman on doctor clinic on tv she had same problem, but didnt have cancer, they gave her a cream but it contained estrogen so wouldn't be any good. She was on zoledex

[Nannymop]

Hi

You can buy non estrogen gel . Take all the love you can get xx

[Kiera49 in reply to Nannymop]

Tried lubricant gel still sore

[KMBL_]

I was on the Estrace cream because of this exact problem. It was working great. Once I was diagnosed, no more cream. I have tried a few nonestrogen solutions. Nothing has worked for me.

[Evaf]

Maybe it is be painful because of the dryness. I found it is fine if using a lubricant gel. I have one called Sliquid Organics from Amazon with all natural ingredients and works well.

Eva xx

[Hidden]

Dryness can occur with this combination of drugs. I take 3 of the 4 drugs you have. Speak to your Oncologist. They will recommend something for you to use. Best wishes

[Kiera49 in reply to Hidden]

Thank you I will do xx

[KMBL_]

I spoke to my oncologist. She recommended one of the over-the-counter things. It doesn’t work for me. It’s different than dryness. I’m not dry. It is definitely because the skin has become thin. Feels more like a knife feeling. Is that what you feel?

[lynzer in reply to KMBL_]

Yes exactly! My last post had a typo, the walls become thin therefore tearing easily 😫

[KMBL_ in reply to lynzer]

It’s not fun. I’m sorry you feel that way too.

[Kiera49 in reply to KMBL_]

Yes exactly

[Andersl]

Hi Kiera

When I was on letrozole (with tratuzamab and pertruzamab) I found that as my body was being rid of oestrogen the walls of my vagina became very thin and sore.

My quality of life, I felt, was not as good as it could be so I started looking up the benefits of letrozole. I found that in mbc stage iv it gave an extra (on average) 3 months survival. That made my mind up to come off it. My oncologist didn't blink an eyelid when I told him.

I've been much better ever since.

Re oestrogen creams. I've been told that the dose is so small that its not a problem for people like us (ER pos) to take them. I know that view differs from oncologist to oncologist but I've been on it since early menopause at 40 (hereditary condition) and I don't intend to stop now. I did stop oral HRT when I got my MBC de novo diagnosis. Whether the HRT caused the cancer I'll never know. My cousin has ovarian cancer so we may have one of the BRCA genes.

Hope the above helps. Please be assured I'm not suggesting you do the same as me, just telling you my story/view.

I wish you all the best x

[Kiera49 in reply to Andersl]

Thank you xx

[Aimee95]

Oh yes!! Very painful ☹️ during and for awhile after. I have tried many different lubricants but the best has been plain old coconut oil. Warning it makes a mess of sheets so I do put a towel down. The dryness comes from lack of estrogen and the skin actually gets thinner causing much of the pain. I told my gynecologist it felt like my vagina was made of paper about to be ripped in half......she looks and laughs yep paper white! I guess the lining as it gets thinner the skin changed from healthy pink to white. She suggested the coconut oil and while it is not 💯 percent it does make sex somewhat pleasureable again. I hope this helps. Damn cancer trying to steal more joy from our lives!!

[Kiera49 in reply to Aimee95]

Thank you will give it a try

[Justme153 in reply to Kiera49]

I have to throw out there that my gynecologist said never ever use coconut oil. That people who use it end up with all sorts of infections cause it stays in there and breeds bacteria. He said water soluble products only. That being said none of the over counter lubricants work for me either. So as some one said above we have found other ways to be intimate.

[Maludagui in reply to Justme153]

My oncologist said the same

[hdhonda]

Lubricate, lubricate and lubricate some more. Blessings, Hannah

[Hidden]

I am sorry to hear this. My husband and I use uberlube which you can find on Amazon. My gynecologist recommended it to me. My gay male friends rave about it which is good enough for me.

[Iwasborntodothis in reply to Hidden]

I just found this thread again because...well..anyway good to hear you like Uberlube because I just ordered it based on some online research. Doc also suggested moisturizing your insides....with Hydralonic (sp?) based moisturizers that you leave in...? not ready to try that yet

[Hidden in reply to Iwasborntodothis]

Happy to help. We use the uberlube for inside and out. Not too far inside of course

[Kiera49]

Thanks

[Hidden]

Hi Tracey,

This is a conversation I had with my oncologist at the very beginning when this whole thing kicked off. Not long after I started zoladex I experienced vaginal dryness, so I mentioned it to her. Without batting an eyelid (I'm so glad I have a female oncologist who gets it!) she said I could try vagifem. But when she said that it contained a small amount of oestrogen I decided against it. I know it's only a small amount, but I didn't want to introduce any oestrogen back into my body. So I decided to just use an over the counter lubricant. It works for the most part, but there is still a little soreness at times. So I might need to try something else. I have some coconut oil, so might try that.

There are non-oestrogen brands of lubricant that you and your husband might want to try. Replens is one brand I have heard of. Or maybe shop around for another lubricant. I would speak to your oncologist or GP and see what he/she recommends. I'm sure they must hear this a lot, not just from cancer patients who have been put through a chemical menopause, but also women who have gone through menopause naturally. My oncologist was happy to discuss this with me and spoke of it as being a "quality of life" issue.

Sophie

[Maludagui]

Hello 🌺😍 months ago I also posted a post asking the same. I spoke to the oncologist and she said that she could send me a cream but she had estrogen. I said no. I tried commercial lubricants and they didn't work for me. We have looked for alternatives but it is not the same. I feel a little frustrated with this

[Kiera49]

It is frustrating will speak to my oncologist when I next speak to her, thanks for all your comments xx

[Mimigram]

Pjur original works pretty well not that I am that interested anymore. You have to order online. Amazon has it.

[lambee9]

I have found a vaginal moisturizer called Hyalo Gyn (hyalogyn.com) to be helpful. My gynecologist recommended it. You use it twice a week.

You may also want to ask your gyno about pelvic floor dysfunction. It's very common, and could account for the pain you are feeling. The prescribed therapy is pelvic floor physical therapy, which consists of exercises (lots of kegels), including "internal work." There's no quick fix for this problem. You're right. Lubricant only helps so much. IMO, it takes the discipline to do all the exercises regularly, which for me, also includes the use of vaginal dilators. With the physical therapy, i was able to go from pain to no pain in about 4 weeks. Perhaps it's worth looking into.

Best of luck!

[KMBL_]

This problem for me started long before I was on any treatment, so for me, it wasn’t that medications that caused it. I was on the estrogen cream before I was diagnosed, but once I was diagnosed, it was back to the pain. It is exactly the same now as it was long before my diagnosis. I had a partial hysterectomy in 2012, so I’m guessing that’s when it all started. I also have had major hot flashes since then too. I wasn’t diagnosed until 2019, so I guess mine is just from menopause. Ugh.

[MJ_Michigan38]

I haven’t read other comments, so I apologize if my suggestion has already been discussed, but I bought some vaginal dilators from VuvaTech. They are made especially for women who’ve had cancer. It came with some lube called “Slippery Stuff,” and o...m...g....it is the only lube that works for me. We’ve tried several... This was recommended on Memorial Sloan Kettering’s website, so I felt I could trust it. The dilators help you gradually stretch the skin in your vaginal wall, making sex much less painful.

Male oncologists are particularly bad about not asking these questions. As far as I’m concerned, it should be part of palliative care. I looked through my first doctor’s notes, and under “issues with sexual intercourse” he put “none.” But he never asked me, so he didn’t really want to know.

My husband’s and my relationship is not built around sex, but we are 39, and it is still important to us that we have sexual intimacy. Sometimes we just hold each other or do...other things. Things that don’t require penetration. But these dilators have made it so I can have sex with him again, and we both cried with happiness when we realized that. I felt like we were given back one of the many things stolen from us by cancer.