I Can't Help It If I've Got a Heavy Flow and a Wide-Set Vagina!
July 22, 2013 4:17 PM Subscribe
I am trying to make a decision about a temporary treatment course for my uterine fibroid and would like to hear any experiences people have had with Lupron Depot. Particularly--how bad are the side effects? Did the treatment have a major impact on your ability to lead your day-to-day life?
A bit of sort-of icky medical detail. Three years ago, I was diagnosed with a uterine fibroid. Since then, my periods have gotten unbelievably heavy. I can't go more than an hour without taking care of business--have-to-order-from-the-internet-super-jumbo-business--which lasts for about 36-48 hours. As it turns out, the fibroid has gotten a bit bigger (from 10cm to 11cm) and my uterus is now majorly enlarged to 20cm, or as my doctor describes it "It's about the size it would be if you were five months pregnant." (Thus explaining why my periods are so much worse than after the initial diagnosis, when my uterus was "only" 13cm.)
I am planning on getting surgery as a longer-term solution (debating between myomectomy and hysterectomy) but would like to schedule it for a time when my office is going to be closed to cut down on the amount of leave I need to take. In the meantime, I have an adventure-type vacation coming up where there will be a lot of long rides out to/hiking around in areas where changing a tampon every five seconds may not be possible, much less convenient. My gyno went through a number of options and he told me about Lupron Depot as a potential means for dealing with my period before the surgery, but he said it wouldn't be his preferred option (he's leaning Mirena). Looking around, it seems like the side effects are pretty terrible, but I also think that people are more inclined to post about stuff if it is horrible than if it is not a huge deal, so I'd love to hear about any experiences people have had with Lupron, good, bad, or ugly to help inform my decision.
Complications: I'm 35, a smoker (though I am going to try to quit to see if other treatment options then become available), and my doctor said that other options (oral contraceptives, NuvaRing, Mirena IUD) would either be risky because of the smoking and/or not guaranteed to lessen my periods to the point that they wouldn't continue to make my life a huge pain in the ass. Also, given the current state of my uterus, the Mirena may not "take." If I am not successful quitting smoking, my doctor is also wary of giving me estrogen shots to counteract some of the Lupron side effects because of clotting issues. I can't move the vacation, and even if I could, my periods are just irregular enough that there's no such thing as foolproof timing.
So, how was Lupron Depot for you? Or any other insights into menstrual reduction techniques, particularly if you are 35 or older/smoke/have other issues that make oral contraceptives/NuvaRing suboptimal solutions?
If you, like me, would prefer not to share your medical details with the world at large, I also have a throwaway email: anonymousamf1@gmail.com. Thanks!
A bit of sort-of icky medical detail. Three years ago, I was diagnosed with a uterine fibroid. Since then, my periods have gotten unbelievably heavy. I can't go more than an hour without taking care of business--have-to-order-from-the-internet-super-jumbo-business--which lasts for about 36-48 hours. As it turns out, the fibroid has gotten a bit bigger (from 10cm to 11cm) and my uterus is now majorly enlarged to 20cm, or as my doctor describes it "It's about the size it would be if you were five months pregnant." (Thus explaining why my periods are so much worse than after the initial diagnosis, when my uterus was "only" 13cm.)
I am planning on getting surgery as a longer-term solution (debating between myomectomy and hysterectomy) but would like to schedule it for a time when my office is going to be closed to cut down on the amount of leave I need to take. In the meantime, I have an adventure-type vacation coming up where there will be a lot of long rides out to/hiking around in areas where changing a tampon every five seconds may not be possible, much less convenient. My gyno went through a number of options and he told me about Lupron Depot as a potential means for dealing with my period before the surgery, but he said it wouldn't be his preferred option (he's leaning Mirena). Looking around, it seems like the side effects are pretty terrible, but I also think that people are more inclined to post about stuff if it is horrible than if it is not a huge deal, so I'd love to hear about any experiences people have had with Lupron, good, bad, or ugly to help inform my decision.
Complications: I'm 35, a smoker (though I am going to try to quit to see if other treatment options then become available), and my doctor said that other options (oral contraceptives, NuvaRing, Mirena IUD) would either be risky because of the smoking and/or not guaranteed to lessen my periods to the point that they wouldn't continue to make my life a huge pain in the ass. Also, given the current state of my uterus, the Mirena may not "take." If I am not successful quitting smoking, my doctor is also wary of giving me estrogen shots to counteract some of the Lupron side effects because of clotting issues. I can't move the vacation, and even if I could, my periods are just irregular enough that there's no such thing as foolproof timing.
So, how was Lupron Depot for you? Or any other insights into menstrual reduction techniques, particularly if you are 35 or older/smoke/have other issues that make oral contraceptives/NuvaRing suboptimal solutions?
If you, like me, would prefer not to share your medical details with the world at large, I also have a throwaway email: anonymousamf1@gmail.com. Thanks!
I took Lupron. My periods did not stop. My joints ached. i could not think very well. But it was worth it, since the drug shrank the fibroids and endometriosis to the point that they were no longer life-threatening (the fibroids were so big there was a fear they would hemorrhage and I would bleed to death). I had a uterine artery embolization. It did not help, finally I had a complete hysterectomy, which I did not want. The hysterectomy was the best thing I ever did, although I was in mourning for my lost uterus and ovaries for a long while.
posted by buzzieandzaza at 4:48 PM on July 22, 2013
posted by buzzieandzaza at 4:48 PM on July 22, 2013
I feel ya, fellow uterine fibroid sufferer!
Have you looked into other GnRH agonists like Zoladex or Synarel? I took the latter before having uterine fibroid embolization - didn't shrink my fibroids much but it gave me relief from fibroid pain and my periods stopped. The only side effect I had was hot flashes, which I gladly dealt with.
For some reason Lupron is the gold standard and gynecologists don't readily acknowledge the existence of other drugs. Definitely recommend doing some research and finding out what's out there - you'll also need to factor in price if you don't have insurance, as these drugs are mad expensive.
posted by Anima Mundi at 4:59 PM on July 22, 2013 [1 favorite]
Have you looked into other GnRH agonists like Zoladex or Synarel? I took the latter before having uterine fibroid embolization - didn't shrink my fibroids much but it gave me relief from fibroid pain and my periods stopped. The only side effect I had was hot flashes, which I gladly dealt with.
For some reason Lupron is the gold standard and gynecologists don't readily acknowledge the existence of other drugs. Definitely recommend doing some research and finding out what's out there - you'll also need to factor in price if you don't have insurance, as these drugs are mad expensive.
posted by Anima Mundi at 4:59 PM on July 22, 2013 [1 favorite]
I went on Lupron a few times to prepare for surgeries for endometriosis, several years ago. While my periods stopped completely, my hormones went wild. Unlike most people, my libido kicked into overdrive. I felt and acted like a crazy person. I had hot flashes as well, but they were alleviated by a low dose of estrogen. I also gained weight.
YMMV, of course, and it is only temporary. Just knowing what the side affects could be might help you in coping with them. If it was the only thing preventing me from constantly gushing blood on my vacation though, I'd probably go ahead and take it. It's likely to help with that.
posted by Koko at 5:33 PM on July 22, 2013
YMMV, of course, and it is only temporary. Just knowing what the side affects could be might help you in coping with them. If it was the only thing preventing me from constantly gushing blood on my vacation though, I'd probably go ahead and take it. It's likely to help with that.
posted by Koko at 5:33 PM on July 22, 2013
It's only anecdata, but the Mirena has stopped my periods, and I haven't noticed any unpleasant side effects.
posted by Edna Million at 6:27 PM on July 22, 2013
posted by Edna Million at 6:27 PM on July 22, 2013
I had heavy periods, and the Mirena has fixed that, but it took months.
You don't mention what things you use during your period, but when I switched to using a menstrual cup my life changed. I went from having to change my dual pad/tampon every one or two hours and never fail leaks, to being able to wear a divacup for 5 hours (with a pad) without leaking. Once I got the Mirena installed, I didn't need to use a pad with the cup, and after about a year and a halfish my flow reduced considerably. I know this isn't answering your question but I hope it helps!
posted by tweedle at 6:29 PM on July 22, 2013 [1 favorite]
You don't mention what things you use during your period, but when I switched to using a menstrual cup my life changed. I went from having to change my dual pad/tampon every one or two hours and never fail leaks, to being able to wear a divacup for 5 hours (with a pad) without leaking. Once I got the Mirena installed, I didn't need to use a pad with the cup, and after about a year and a halfish my flow reduced considerably. I know this isn't answering your question but I hope it helps!
posted by tweedle at 6:29 PM on July 22, 2013 [1 favorite]
Hello, just in terms of your temporary reprieve for vacation: I was last month diagnosed with a fibroid which had caused massive flooding for two months. I'm a 35 year old smoker (for about 15 years), I only have the one fibroid at 3cm so nothing like as big as yours, but I know how horrible it is.
My GP prescribed me a ten day course of norethisterone - Utovlan, I think it was called here in the UK, NOT the lower dose one that can be a contraceptive, but a high dose that was supposed to 'reset' everything. It's like the commenter said above, a massive dose of the POP pill I think. 3 times a day for ten days.
But also, an effect of the course, and the desired effect in our case, was that it would stop bleeding. Like, stop it, all of it.
I am not at the every five minutes stage but about every half hour or so. Her (my GP's) words were: 'a lot of women in your situation come in asking for this so they can go on holiday comfortably, and it would be nice for you to have at least a ten day break, even if it doesn't work for the full reset'.
Which it hasn't, but that's another story and I did indeed get my blissful ten days of respite - maybe it could make your holiday work out!
posted by symphonicknot at 7:31 PM on July 22, 2013
My GP prescribed me a ten day course of norethisterone - Utovlan, I think it was called here in the UK, NOT the lower dose one that can be a contraceptive, but a high dose that was supposed to 'reset' everything. It's like the commenter said above, a massive dose of the POP pill I think. 3 times a day for ten days.
But also, an effect of the course, and the desired effect in our case, was that it would stop bleeding. Like, stop it, all of it.
I am not at the every five minutes stage but about every half hour or so. Her (my GP's) words were: 'a lot of women in your situation come in asking for this so they can go on holiday comfortably, and it would be nice for you to have at least a ten day break, even if it doesn't work for the full reset'.
Which it hasn't, but that's another story and I did indeed get my blissful ten days of respite - maybe it could make your holiday work out!
posted by symphonicknot at 7:31 PM on July 22, 2013
Taking contraceptive pills continuously, skipping the placebo week, is completely controlling any bleeding my 6-cm+ fibroid might otherwise cause. I am taking one of the generics for Ortho Novum 1/35, because it's the pill formulation that happens to agree with me best and also helps with my acne.
posted by artistic verisimilitude at 10:34 PM on July 22, 2013
posted by artistic verisimilitude at 10:34 PM on July 22, 2013
My teenage old daughter has had 2 lupron injections so far, and her period has not yet stopped but the dr said that was to be expected. She was put on a low estrogen patch to control side effects, and so far that seems to be working. There has been no noticeable weight gain. Her specialist advised me not read the internet because she said the information out there would scare me, and she felt that more people put out the negatives than the positives of its use. I did read some things, but so far things are going okay and as planned for her treatment.
posted by maxg94 at 6:21 AM on July 23, 2013
posted by maxg94 at 6:21 AM on July 23, 2013
Mod note: From the OP:
I just wanted to say thank you to everyone who shared their stories and personal medical information with me. The answers and emails were incredibly helpful and because of them I've made a set of decisions I am comfortable with (and that don't involve the dreaded Lupron!).posted by jessamyn (staff) at 5:52 PM on August 14, 2013
This thread is closed to new comments.
It messed me up big time and it took me more than a year to feel like myself again. I can't imagine taking an adventure-type vacation in the throes of the devil Lupron. That sounds like torture to me.
Have you ever taken progesterone-only mini pills? It's the same hormone as the Mirena, but in a larger does, because it is taken orally. For some women, it stops their periods entirely. For me, it reduces them by about a 1/3 and makes them somewhat less painful. It's not an ideal solution (I'm eying the Mirena this year myself), but I would urge you not to go within a mile of Lupron unless you have absolutely no other choice.
Also, have you ever used a menstrual cup? I find them much more compatible with my heavy periods than tampons.
posted by mostlymartha at 4:34 PM on July 22, 2013