Painful intercourse on Lupron

out_and_about

Hi all,

I am halfway through chemotherapy, and I had a 3 month lupron injection to put me in temporary menopause prior to chemo to preserve my fertility (just in case, we don't think we want kids). I also had to switch from Lilletta IUD to copper because I cannot have hormone anymore. My doc wants me on monthly Lupron after my radiation treatments are over, so this will be an ongoing concern. The Lupron injection was about 7 weeks ago. During that time, we were buying a house, but a series of complications left us needing to leave our apartment and move in with my in-laws for a month, then chemo started while I was there, then we finally got to move and scramble to get the house ready before infusion #2, then family visiting me to help me through side effects and getting the house together. Needless to say, we had a wicked dry spell. We have only had intercourse 3 times since all of this began, and the last 2 times were quite painful. A number of song lyrics pop into my head "like a virgin", "feels like the first time...". I don't know if this is the Lupron, the dry spell, or a combination. But I am only 33, and this is really upsetting. I have hormone receptor positive cancer, so topical estrogen is not going to be an option. I have a great lube but have found it is only a little helpful and takes a long time to get warmed up, and even then it is just barely tolerable. I am afraid I will just not want to have sex anymore. I should be in my prime. At this point, I think I am going to just try to have more sex (but I am waiting chemo side effects to hit and my mom to visit to help me, so it will be hard to keep up with it), and see if it will go away by keeping things moving. If not, I will have to talk to a doctor. Any advise stories, or reassurance is appreciated!

Lula73

Yes, the Lupron is the main culprit. Without the hormones your body makes the tissues in your genital area start to dry out and can atrophy. Daily or every other day application of coconut oil has helped many. There’s a laser therapy called Mona Lisa Touch that has also been successful. Even with ER+ BC, there are 2 products that are considered safe to use called Intrarosa and Estring. Both have warnings on breast cancer due to what class of medication they fall in but other important warnings that indicate a significant amount of hormone gets into the blood stream (and can adversely effect cancer) are missing... their effects are localized to the tissue in your nether regions and are not systemic. Many docs hear hormone and just say no without any other discussion or research, so if you bring it up to your dr, I’d start by asking if they’ve been inserviced on these 2 and how they work differently than the estrogen creams. If they haven’t, ask them to request an inservice if they tell you no on using them or consult another GYN who has been inserviced/is willing to be inserviced.

Lubewise, GYN recommended silicone based lube vs water based but I couldn’t stand how I couldn’t get it off afterward. Jo brand makes a water-coconut oil based hybrid lube we like. I like their Agape one too. You do need way more than you needed prior. It was also recommended to use toys by yourself to keep the tissues healthy -a use it or lose it kind of thing. By yourself because you can control size, pressure, speed, etc and there are no hurt/guilt feelings if something causes pain. And yes, it does take longer to get warmed up without the hormones your ovaries make. Even Intrarosa and Estring can’t help that. I just look at it as more foreplay time.

Cpeachymom

out and about- sounds like you’ve got a lot on your plate right now!

I am on Lupron plus Tamoxifen, 10 months now. I took two pieces of advice from the wonderful women on this site-

As Lula already shared, coconut oil, every day when I get out of the shower, started it before I had any problems.

And as you hinted at- a “use it or lose it” attitude. That may be a little difficult with chemo though, I’m not sure what the rules are there. I set a minimum once a week after rads was over. There have been only a couple times where it was uncomfortable, early on. Now it’s back to normal.

Yes, it takes longer to get warmed up, but as long as your husband is aware of this, like Lula said- more foreplay. Open communication helps here.

Don’t throw in the towel just yet.

out_and_about

Thanks guys! My husband is being very supportive and understanding, which I really appreciate. Right now it is harder on me. And I just can't believe how fast it happened! I thought it would take a few months at least to get to this point. Right now I am seeing my onc every 3 weeks just before chemo, but with summer, 2 of my appts are with his midlevels (different ones too!) due to vacation, so the continuity of care is not there. Not sure if I should try to call the office over this, or make an appt with my regular GYN or PCP. I will definitely start with coconut oil. Any specfic brand/type, or where to find it? Is it applied internally? I do have a feeling my onc would not want me using either of the estrogen products. My breast surgeon had been ok with me keeping my progesterone-only IUD even though I was also PR+, because it releases locally, but my onc said it had to come out.

Cpeachymom

I bought a cheap jar in the grocery store. It’s solid until about 75 degrees, then it liquifies. I’ve read some scoop it into little balls to insert, I just swipe and go on my way.

Oh, the things we share on BCO!

hapa

Sex has been painful for me since a couple weeks into chemo. Same for some of the other ladies on my chemo thread. I was on Zoladex and Anastrozole for about three months before the start of chemo and had no problems with sex. I mean, it felt good and my sex drive was relatively normal, especially considering the anxiety I was dealing with at the time. So I wouldn't be so sure it's the Lupron. In my case, my nurse recommended Replens, but I found it too messy so we just have been going without. If you are having mouth sores or problems with any of your mucous membranes from the chemo (dry eyes, bloody nose, sore throat, etc), the painful sex is likely an SE of the chemo. It may also be a combination of both. I'm two weeks PFC so I'm hoping to get back on the horse any day now...

Falconer

I was on Lupron for a year, and I was really disinterested in sex, which was not me before the shots! I used coconut oil religiously but it seemed like all feelin and sensitivity was gone. As I told my friend, my husband could be rubbing my elbow crease or my vjay crease and it all felt the same. (Sigh) so I'm on Tamoxifen. Which is better but not great. Btw I agree with your onc more than the BS. I took the mini pill for a year before I developed BC. I really believe the weird effects of progesterone only messed up my hormones. Good luck to you, outandabout.

out_and_about

I did not think of that being a chemo side effect like the mouth sores. I have gotten some, worse during the first round, and have felt a scratchy throat about 1 week out of both times so far. If the pain is from sores, then I can handle a few more weeks of it, but if it will be years, that would be awful. I was on liletta for a year, which is supposedly just local progesterone. I loved it! No period after the first few weeks, only real side effect I noticed was a little change in acne (just different from what I had before). It was such a bummer that I finally made the move to IUD, loved it, and within a year, that's it, no longer an option. At least no periods on lupron...I reallly like not having periods.

Tresjoli2

Lupron is definitely your culprit. Replens works, but it's super messy. My MO gave me an estrogen prescription vaginally, and she said it would be ok to use...and though I filled it, I havent touched it. Too terrified. No one can agree on whether or not I am in menopause either... so birth control is a huge issue. My estradiol says I am in menopause, my LH and FSH say I am not. Havent had a period for three years. Who knows? Let me know if u find something that works for u.

out_and_about

So I had not tried anything yet since I started this thread. My husband and I tried intercourse a few days ago with just gobs of regular lube and it was pretty uncomfortable. Yesterday I met with an oncology NP for chemo follow up, and I asked her about this. She said to try vaginal moisturizer, but that she thinks I will need to attend the sexual health clinic and have dilation. I realize I am having a use it or lose it situation with everything that has gone on this summer. Maybe when the 3 month lupron and chemo side effects wear off, I will have a little bit of my natural hormones and we can start to go at it like rabbits to get me back to normal before I (probably) go on Lupron again. Then maybe I can do a better job with maintenance when I am not on chemo anymore, and hopefully it won't get this bad, fingers crossed. My NP didn't know for sure what my oncologist would want me on for hormone therapy, but he has definitely mentioned Lupron monthly more than once. I will wait til I see him again in 3 weeks to ask about the local estrogen, after I read up on it myself a bit, too, so I can have an informed discussion.

I ran to the pharmacy yesterday and bought a vaginal moisturizer and coconut oil. I tried the moisturizer overnight, hoping it would not just fall out of me since I am horizontal. Didn't work so well. I woke up soaked despite wearing a panty liner. That with recent steroids and chemo, feeling hot and cold all night, I just could not sleep most of the night. Oh well, I'll keep at it and see what happens.