mika
New Member
Posts: 13
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Visanne
May 28, 2013 18:21:18 GMT -5
Post by mika on May 28, 2013 18:21:18 GMT -5
Has anybody been feeling bloated after you eat?
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Visanne
Jun 1, 2013 19:41:51 GMT -5
Post by clarisse on Jun 1, 2013 19:41:51 GMT -5
Hi has anyone experienced heavy clotting on the first month of taking visanne? Im on my first month of taking visanne and i was surprised to have a period cos my obgyne said i might not get a period. This is the 3rd day of my period and im experiencing large clotting, i called my doctor he said to just continue taking visanne. Im just worried cos i never had this large clots before.
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mika
New Member
Posts: 13
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Visanne
Jun 1, 2013 20:09:15 GMT -5
Post by mika on Jun 1, 2013 20:09:15 GMT -5
Hi Clarisse, I was also hoping I wouldn't get my period, but unfortunatly I did. (a week and a half late) I have been spotting 95% of the time I started taking Visanne. I started on April 21st. I have had some clotting but nothing crazy. I have noticed alot of thin tissue, kind of like shedding. What did your dr. say about the clotting??? Going to see the dr. on Tues. We will see what he has to say!!! Good Luck
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Visanne
Jun 1, 2013 23:10:14 GMT -5
Post by clarisse on Jun 1, 2013 23:10:14 GMT -5
He said just continue taking visanne as there are some women who had a full period while taking visanne. I told him about the clotting but he said just to continue taking it. Its just frustrating seeing clots. Its about a size of a ping pong ball but its like every hour thats what bothers me. I took an advil in the afternoon yesterday the clotting stopped but this morning it started again, usually on my 3rd day my period is almost gone. I have a stage 4 endo and i had a lap last year but i never experienced this. Im not too sure if its the side effect of not taking birth control pill or if its cos of visanne.
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Post by struggler47 on Jun 2, 2013 8:11:56 GMT -5
Hi,
I've been reading this board for quite some time and it has been very helpful to read the similar experiences and I have found comfort in this. So thank you.
I am considering Visanne as an option but I have many reservations. It clearly states in the print out in the box to not take Visanne if you have migraines which I do.
It also notes the risk of taking it if you have a history of breast cancer in your family. I have 2 grandmothers who has breast cancer plus the fact that I'm almost 40 and have not been able to have a child is another strike against me in terms of getting breast cancer one day.
So my question is this. I see that at least one of you has migraines and is taking Visanne. I'm trying to determine if it's advisable to even try it for someone like me. I am going to speak with my pharmacist and doctor this week but I hoped that someone on here would have some advice.
I have had endo for 8 years have had 2 surgeries, tried birth control pills, Lupron (not a good idea) and many natural remedies, supplements and diet changes. I am in constant pain and when I have my period the pain is unbearable.
I'm discouraged and sad as I want a child and obviously no more pain.
Any advice or shared experience would be helpful. Thanks.
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mika
New Member
Posts: 13
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Visanne
Jun 2, 2013 18:35:27 GMT -5
Post by mika on Jun 2, 2013 18:35:27 GMT -5
Hi stuggler 47, I suffer from migraines and was also skeptical about taking visanne. I started taking visanne on april 21st and have had a few more headaches then normal. I'm not sure if it is visanne or because the weather has been very rainy and humid. I couldn't take the pain from the endo anymore so I had to try it. My side affects have been: feeling very tired, dry mouth, sore breasts, some headaches???, alot of spotting and bloating after i eat. But, i had no pain with my first period ;D. I couldn't believe it, first month in years that i didn't have to take a pain killer!!! You can give it a try, if your headaches get worse just stop. I have had 2 laps and had one fallopian tube removed. I also can not have children, I feel your pain. Good Luck!!! Mika
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Visanne
Jun 2, 2013 19:01:43 GMT -5
Post by struggler47 on Jun 2, 2013 19:01:43 GMT -5
Thanks for your response Mika. I would do almost anything to eliminate this pain but its a tough decision. I'm also concerned about taking any hormone related drug. When I stopped the lupron it messed me up emotionally for a small period of time.
It is great to have your feedback though. It would make it an easier decision to try it knowing that someone with Migraines can tolerate it.
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Visanne
Jun 2, 2013 22:33:11 GMT -5
Post by smash1984 on Jun 2, 2013 22:33:11 GMT -5
Hi Ladies, it's been almost a year since I've checked in here, and frankly it's because my endo hasn't really been on my mind Yay! I am about 11 months on Visanne now and it is working wonders for me. I have no period, virtually no pain, and if there are any lingering side effects, I have learned to live with them. I have suffered with migraines since childhood but I don't notice that they are any more or less frequent with being on Visanne. I am curious to know how others are taking it, though, and why some of you still have periods (and others like me, don't!) I take Visanne every single day, and I have not had a period, nor any spotting. I wonder if some of you are taking it like bcp where you take a week off to have your period? Also, my doc told me I could not take bcp and Visanne together, so I find it interesting that some of you are! My doctor has not said anything about this being a short-term solution. She intends to leave me on it until if/when I want to try to have a child. I am now 28, not in a relationship, and am not sure yet if children are in my future. (I haven't decided if I want to try, not sure if I can handle the disappointment if I'm unable ) Plus, I am terrified of coming off the Visanne... no matter how long this Visanne keeps working for me and eliminating my pain, I don't think my mind or body will ever forget the pain and agony I had "before". Anyways, just wanted to check in, let you know I am doing well, and wish all of you the best!
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Visanne
Jun 3, 2013 15:04:42 GMT -5
Post by indiana on Jun 3, 2013 15:04:42 GMT -5
I am in the same happy boat as Smash1984. I'm coming up to my one year anniversary on Visanne and it's worked for me. Pain-free and period-free. I have an ultrasound scheduled next month so I'm very curious to see if the lesions have shrunk as the Visanne write ups suggest can happen. I haven't had a period since Nov, but I still had many before that. One lasted forever, 24 days or something, even though I take the pill every day. I think it takes some time for your hormones to adjust and that's why spotting and periods happen at first -- and rather dramatically. The little raised pimples on my forehead and neck disappeared 6 months ago. I have no headaches. Tho I am more tired, that is noticeable. And zero periods, which I don't miss at all!
Smash1984, I think the duration you can be on this drug is a question mark. The trials only tested people for 18 months on it, so that's all the recorded data. I think that's why there is an implied end date. But by now people must have been on it for almost 3 years from the trial date. Would be curious to know if there are any long term issues. I'm not coming off it either until I hit menopause, but I'm 51. I'm hoping that's coming very very soon.
It's truly unbelievable how debilitating endo is and how little is known about it. Tinker with the hormones or radical surgery seems to be the only solutions. I feel lucky the drugs have worked on me (and sincerely hope there are no horrible side effects later in life from being on them), but I feel for everyone who is still suffering. It's a life changer and can rule everything. Great that there are forums like this to help each other.
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mika
New Member
Posts: 13
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Visanne
Jun 3, 2013 19:21:42 GMT -5
Post by mika on Jun 3, 2013 19:21:42 GMT -5
Hi Indiana, Just wondering, how long did it take for your period to stop? Or spotting if you had any. I started Visanne April 21st, had 1 period which was longer than usual but have been spotting just about everyday. It has helped with the pain (thank god) ,but was hoping my period would stop altogether!!!
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Visanne
Jun 25, 2013 13:52:10 GMT -5
Post by redwood on Jun 25, 2013 13:52:10 GMT -5
I thought I'd pop in here since I've been on Visanne for quite a while now. Coming up on the 18 months that the study was done on. I started it Feb. 2012 and haven't had a period since March 2012. The pain is gone too. Every once in a while I'll feel some twinge in the area where I used to have pain, but it's mostly nothing and could just be scar tissue (and it's not cyclical).
I don't really seem to have side effects, although I do attribute the foot cramping I experience when I point my toes to it as I didn't have that before. I had it also on the natural progesterone I took, but not before that. I did have some heart palpitations when I started taking Visanne but that was gone after a month or so, EXCEPT for one incident recently where I drank coffee with caffeine and my heart rate went up to 130 bpm which is outrageous (I have an app on my phone which can measure your heart rate). And it remained elevated the whole day. Not as high as that, but certainly way above my normal rates which are between 58 and 75. I also had a stressful move of my home that day, so that could have attributed, but I thought that was really weird. I usually don't drink coffee with caffeine but I have here and there and it never affected me like that before.
My dr. seems I can just keep taking Visanne indefinitely if it doesn't give me problems. But still, I worry about taking a medication for long periods if you might end up with some other condition caused by it later one, if you know what I mean. Something you don't notice now, but later on appears because of long term use. I'm toying with the idea of stopping Visanne to see how it feels. I need to see my Dr. to renew next month so I can see what she thinks.
I did have several focal nodular hyperplasias grow on my liver from birth control pill use in the past (they found these when they did surgery for my endometrioma on my liver). Current dr. says it's more the estrogen that will cause this rather than progestin. But the warning for Visanne say you shouldn't take it if you've had beneign liver tumours, which I have (that is what they are).
Interesting that I seem to ovulate on Visanne now (I can feel it), but I still don't get a period. Dr. said you can have "break through ovulation" while taking it. When the ovulation came back, so did my sex drive, which had disappeared when I first was taking Visanne.
Are there others on here who had good luck with Visanne and then stopped taking it? I remember there was a woman last year who stopped it because she wanted to get pregnant and it seemed like her first period or two was ok. It's nice not to have a period though. It would be weird now to go back to having them.
Is there anyone else concerned with taking something like Visanne long term? (longer than the study....etc.) I read some people's comments on here in the that said their dr. wanted them to stop after a year.
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Visanne
Jun 27, 2013 13:39:33 GMT -5
Post by redwood on Jun 27, 2013 13:39:33 GMT -5
I would definitely give it 3 months to see how it works for you. It's weird how everyone has such different experiences with it. My first period was already better, although it was longer than usual (light but long) and then after that first monthly period, never a period again. I notice if I miss a pill (and I have), I'll start getting cramps as if my period is coming, but it never comes. I've only ever missed one day.
It does give me some hot flashes too. I was not having them before I took it. I am 47 though.....so it could be age but funny that I didn't experience it before Visanne. Although when my estrogen is tested, it's not low. It's normal and was high on estrone I think, can't remember, but that was before I took Visanne.
Well, long term use (17 years) of birth control pills gave me liver tumors, so there's that for me and why I feel hesitant to take it long term. I guess I could stop and see how I feel. That's all I can do, or just keep taking it until menopause, which shouldn't be too far off (but could be 5 years even). My endo (other than being in my liver at some point) has never been that extreme (and was "quiet for 4 years after liver surgery). I was taking natural progesterone for a a bit and then that seemed to stop working one day, so that is when I switched to Visanne (it had just come out).
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Visanne
Jun 27, 2013 13:43:24 GMT -5
Post by redwood on Jun 27, 2013 13:43:24 GMT -5
just wanted to add that although I said my endo symptoms weren't that bad. Right before I started Visanne I had a really bad period and pain for 12 days. That was unusual though, so I'm not sure what prompted it, but the last few periods before Visanne when I was still taking NP were getting worse for some reason.
Another weird thing is that I seem to have pain today. Not sure why. That's unusual. Pain in an area where there was a suspected endo lesion. Endo described it as an adhesion. It's in my side.
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mika
New Member
Posts: 13
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Visanne
Jun 27, 2013 19:52:18 GMT -5
Post by mika on Jun 27, 2013 19:52:18 GMT -5
Thank goodness for Visanne!!! I started taking it on April 21/13. My first period was light but long and hardly no cramping. I haven't had another period since, THANK GOD. Thats what I was hoping for, NO PERIOD. I feel like a million $$$. It is weird how we all respond so differently to Visanne. I've read that is is NOT a long term treatment. I went to see my dr. and asked him about this and he said that I can take this until I reach menopause. I'm only 40. This worries me. I read one thing and he is telling me another. I'm worried at what long term affects this drug will have. I can actually function and not have to take pain killers all the time. The only pain that hasn't really gone away is my lower back pain. Its not that bad, just annoying because I stand all day at work. I hope this continues to work for me and I hope that the people that are having trouble pull through it and feel better soon.
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Visanne
Jun 27, 2013 20:02:21 GMT -5
Post by redwood on Jun 27, 2013 20:02:21 GMT -5
yeah, my dr. said the same thing - can take it until menopause, but I worry about long term effects too, as I mentioned above. I have a less amount of time for menopause starting, but still.....could be more than 5 years and I've already taken it 1.5 years now. Funny, but I said to my dr. "how will I know when I have menopause if I never have a period?" She just said that I can stop taking it and see if my period comes back. I think it would as I get cramping when I just miss one pill. My endo pain though is NOT in my pelvis. I know that's weird, but it's in my side. My regular pelvic feeling for my menstrual cycle was always just fine, just that I would get a pain in my side at the same time, which of course isn't normal.
Great that it's working for you Mika!
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