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Visanne
Aug 24, 2012 12:50:52 GMT -5
Post by redwood on Aug 24, 2012 12:50:52 GMT -5
this is the Canadian website: www.endosisterhood.ca/It's private though, so you need to request to be added and will have a username and password to see the forum. Not as much posting on that forum as here.
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eli
New Member
Posts: 1
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Visanne
Aug 24, 2012 14:32:57 GMT -5
Post by eli on Aug 24, 2012 14:32:57 GMT -5
Hello girls! I am living in Germany and started Vissane before 9 days (on my second day of cycle). I have a cyst and i was on mri. After first pill i was so scary i felt like drunk and on the other day i felt pain everywhere. Now i know how you feel if you don't believe in your medicine. I started to believe and now i feel good. Still have some brown spotting but it's ok. The only one thing i have is strange feeling when i am going to sleep after the pill (i am taking it before bed). I feel my bed is so hard and feel all with my bones... crazy Hope Visanne to work good Before it i was on Orgametril therapy and it also works very good, no pain and start to shrink the cyst. Here Orgametril is no more avalable and i will continue with Visanne 3 months. Wish you no pain and many happiness girls, and i hope everything to be ok. Thank you for all your comments here, unfortunately there is no much info about Visanne. See you
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Visanne
Aug 30, 2012 10:18:55 GMT -5
Post by indiana on Aug 30, 2012 10:18:55 GMT -5
Now coming up to my 3rd month on Visanne and a bit of a setback. Has anyone else had the pain come back? I've been pain free for almost the whole time on Visanne, but last week I bloated up like I used to when the endo was about to act up. Pain in both ovaries and especially my right side, where my bowel is and I know endo has produced adhesions. I think I was spotting this am. The pain is nothing like it was before, but troubling that it's there at all. Is there a chance a mini period is happening even tho this drug essentially shuts down periods? Anyone with a similar experience?
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Visanne
Aug 31, 2012 4:50:57 GMT -5
Post by kalafior on Aug 31, 2012 4:50:57 GMT -5
Hi Everyone I'm new to this forum, however I've been occasionally reading it for quite some time. I am 33 and live in Europe (Poland). Visanne is very cheap here for women with confirmed endo (the cost is equal to less than 2 American dollars). I've just quitted Visanne after 5 months. I didn't have any period during all this time. And I didn't have any pain - though I generally have little pain associated with my endo (which was stage 4 in 2010 and now after laparotomy and removal of two cysts is back to stage 2 - this is at least what I was told by doctors). I had headaches on Visanne quite often and I noticed that my mood and motivation are low. I also put a little bit on weight. And I have had virtually ZERO sex drive on this medication (My partner, who is generally very very understanding and suuportive, started to kind of tease me to have sex with him after months of complete abstinence.) But these are side effects common also to many contraceptive pills. I quitted Visanne because I started having weird breathing problems accompanied with chest tightness. My hunger for air was so strong and the problem so severe that I had to yawn to actually inhale properly. It crossed my mind that I developed some pulmonary embolism because of that medication. And so I asked my gyn to put me on something else. Anyway, as it did not disappear after almost 6 days off Visanne (and back on a pill) I am starting to suspect that it is just something else (I have an appointment with my family doctor soon and want to ask her). My gyn did ultrasound on me and said that Visanne had a very positive impact on my body. The endo places have supposedly almost completely disappeared. However I was a bit dissapointed with that "almost" thing. And to ree! You wrote that you noticed: - tiny pimples/blackheads en masse! Clustered around my hairline, my jawline/neck, and on one side of my nose. NEVER had this before, not even as a teenager. I think that what you described is a reaction to sunlight under Visanne. This is at least described in the volume issued by Australian Government, Department of Health and Aging, entitled "Australian Public Assessment Report for Dienogest. Proprietary Product Name: Visanne". The pdf version of it is available online if you want to read it. There are numerous studies reported and I found there some mention about rare side effect such as rash or pimples among women on Visanne who were exposed to direct sunlight. So you might want to stay away from intense direct sunlight. I personally have doubts now if it was good to quit Visanne now. On the other hand I think this is a very heavy medication and I would not like to continue on it for years. And after reading this volume on Dienogest I realized that Visanne's greatest advantage seems to be the pain-killing effect. Well, for me who has very little pain associated with it, this is not exactly what I am looking for. And dear ladies, It's great that we can share our experiences here on this forum. I hope that my post will contribute to somebody's well-being. Keep posting about how you are doing. Bests to all of you! Kalafior
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Visanne
Sept 15, 2012 10:13:30 GMT -5
Post by rachel2178 on Sept 15, 2012 10:13:30 GMT -5
7 months on Visanne and still no pain, HORRAY! However my sex drive is still non-existent, some facial acne (which I've never had before) and weight gain are driving me crazy! I've struggled with my weight my whole life so the weight gain is very concerning for me. Has anyone else experienced it? Any tricks to combat it? I record everything I eat and walk approximately 15-20km a week as well as 2-3 times at the gym per week. I don't know what else to do!
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Visanne
Sept 16, 2012 16:11:09 GMT -5
Post by jules05 on Sept 16, 2012 16:11:09 GMT -5
Had a lap 3 weeks ago and found out i had stage 2 endo (Gyn removed "all" of it). Just started on Visanne yesterday.. going to see how it goes.. hoping for no bad side effects!
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Visanne
Oct 2, 2012 10:34:40 GMT -5
Post by crazyladi99 on Oct 2, 2012 10:34:40 GMT -5
I just finished 3 months of taking Visanne(Canada)and took myself off it. At first I had really bad cramping I would say for the first two weeks, then I started to get regular headaches, then lately my upper spine started to hurt and I was get gnawing pain in my calf then pelvic area. I fell right into a depression and was overly emotional over nothing!! I was getting these little bumps as well all over my face, neck and chest almost pimple like. To me the side effects are almost identical to Lupron. So back to Marvelon I go.
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Post by rachel2178 on Oct 4, 2012 8:52:23 GMT -5
Crazyladi99, Do you take Marvelon continuously? Do you stop to get a period? I took it for 4 months continuously for 4 months and felt fine and then my OBGYN told me to stop and to get a period and restart. It was possibly one of the most painful periods I have ever had. I started Visanne after that (8 Months ago) i would much rather do that if I could! These side effects are killing me!
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Visanne
Oct 13, 2012 18:24:18 GMT -5
Post by spostill on Oct 13, 2012 18:24:18 GMT -5
ok, so I took visanne for 11 months and just stopped it 3 weeks ago, headaches from hell came back but I know they'll pass. But now the bloating is coming back, the cramps and the uncomfortably full feeling like my insides are jarring when I sit down so I have to ease myself down into the chair gently. I was doing so good the first week I tought I was cured... Kinda depressed, the OB said to call him if the pain came back immediately but if it didn't come back for months then I could just get a new perscription from my family dr. I'll be calling the OB to make an appointment. I feel like the only other option now is Lap. I don't know if I want that - I'm sure its not risk free and probably has its own host of side effects. BUT the way things go in Canada, it could be 6 months before that option becomes a reality. feeling kinda lost.
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Visanne
Oct 14, 2012 1:41:43 GMT -5
Post by redwood on Oct 14, 2012 1:41:43 GMT -5
I'm sorry to hear that your pain came back, Sarah. I've been on Visanne for 8 months now and it's been pretty good, but I wonder if I'll have to take it until menopause. Even though I don't seem to have side effects, I always worry about taking a drug long term (some silent side effects?).
I just forgot to take a pill last night (for the first time) and am wondering what is going to happen. I wonder if I'll get a period or spotting, although it seems weird that it would take just one day of missing a pill to do that. It's 24 hours late, so I don't feel like I should take two. Wish I would have noticed it this morning. It felt so good not to have any bleeding or spotting.
Is there some reason your doctor wanted you to stop after a year? My doctor seems to think it's ok to take it for years. I could have menopause in a few years (I'm 47). But for my mother it was at age 53, so it could even be 5 years for me - who knows. In the Visanne study, it was only used for 18 months.
I was hoping Visanne would shrink endo, but maybe it doesn't if the pain comes back right away?
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Visanne
Oct 14, 2012 7:21:52 GMT -5
Post by spostill on Oct 14, 2012 7:21:52 GMT -5
long term side effects would be similiar to someone who is pregnant alot maybe? prolonged progesterone in your body? My family doctor said to make sure I am eating cheese and things to help keep my bones strong. I have forgotten to take visanne several times and I had some cramps and spotting some of the time, but after taking the next days pill it was back to same old. My dr thought that it will shrink any adhesions and it was the up and down of hormones with a period and estrogen that helps the adhesions grow. I have not had endo visually confirmed have you? I think I need lap just to make sure we know what we are dealing with. I have also had SUPER painful labor and deliveries with my kids, now that I look back I wonder if this had anything to do with it. This problem wasnt prominent until after my third. Before the last baby I had pain the odd time but no one saw endo on the horizon. I guess if I had lap prior to taking visanne it would help indicate if it does shrink them or not, but I am 33 and I would rather not take a pill for the next 20 years. Maybe I'll just have to accept this is disease is in my life and learn to live with it but I just dont want to yet. Its disheartening, not knowing what the next day will be like. Today the vibration of each step I take while walking brings me pain.
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Visanne
Oct 15, 2012 17:45:19 GMT -5
Post by redwood on Oct 15, 2012 17:45:19 GMT -5
Yes, my endo was confirmed. I had an endometrioma on my ovary that was removed in 2003 and then I had an endometrioma in my liver that was removed in 2005. My most recent pain though is in a weird spot (of course the liver was a weird spot too) on my side just below my ribcage - at the bottom of my liver surgery scar. So that was only seen on ultrasound, but not confirmed to be endo. But the pain was cyclical with my period, so most likely it is. AND Visanne knocked that pain away, so it seems like it is. No one has suggested an ultrasound to see if the thing has shrinked though. I think they won't, unless I have more pain.
I can see why you wouldn't want to take a pill for 20 more years. Although, I did take birth control pills for almost 17 years. My endo appeared in my late 30's after I stopped taking the pills. Makes me wonder if it prevented it from happening before, or if it was even the cause of it all. Who knows. I don't take BCP with estrogen now though as it gives me migraines.
Actually, there was a woman who posted on this thread earlier that said her endo shrunk after taking Visanne for 6 months. Someone from Poland. See a few messages above this thread.
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Visanne
Oct 16, 2012 7:44:50 GMT -5
Post by spostill on Oct 16, 2012 7:44:50 GMT -5
The couple days have gotten progressively worse. I left another message with the doctors office because I did not receive a call back from them yesterday. I have called in sick to work today. Besides the pain I have felt dizzy and sick to my stomach at times. I don't know if it is part of the pain or I've got some kind of flu - Regardless I am spending the day in bed. I've already taken tylenol. I think perhaps I'll be epxecting a period this weekend since It'll be 4 weeks since I stopped taking visanne. I really wasn't expecting this, I thought the visanne would "shrink" anything that was there and I'd be free of pain after a year. It just doesn't make sense, the dr felt around my stomach and didn't think he could feel any adhesions. Can you normally detect them with touch?
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nifwlseirff
New Member
Kymberly Fergusson - nifwlseirff
Posts: 3
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Visanne
Oct 18, 2012 4:11:01 GMT -5
Post by nifwlseirff on Oct 18, 2012 4:11:01 GMT -5
Hi all,
I'm new here, and new to Visanne. I recently moved to Germany, and they want to try this medication before resorting to yet another laparoscopy.
Diagnosed with endo (level 4+) at age 20, and severe adenomyosis at age 24, PCOS at age 28. Have taken 2 courses of Zoladex (what a hellish medication), 5 operations, and have had two Mirena IUDs in the last 8 years. The Mirena seems to be controlling the endo regrowth well, but I'm still bleeding 10 days in every 30. The docs want to stop this bleeding, because it's making the adeno cysts larger, therefore are going to put me on Visanne (starting tomorrow).
A recent MRI couldn't see obvious endo regrowths, and physical exam didn't find obvious adhesions. The ovarian cysts come and go, as is apparently 'normal' for my age.
I'm really nervous of Visanne because the 'official' warning on the pack states it can worsen adenomyosis symptoms, especially the bleeding. I have a lot of pain and bleed for a long time. Plus the adeno is pushing into my bowel, so it also hurts outside of my period.
I'm also juggling other chronic pain conditions (lots of inflammation, fibromyalgia, migraines). I already have a lot of the reported side effects (acne, migraines, weight gain, nausea), so am nervous of adding to them.
I haven't found anyone with experience of Visanne *with* Mirena, so hopefully this gamble will pay off. I think if it works, I'll be staying on Visanne. If not, I'm not sure what the next step will be.
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Visanne
Oct 18, 2012 8:06:12 GMT -5
Post by loveshoes on Oct 18, 2012 8:06:12 GMT -5
Hi Kymberly! Hang in there! if you have alot of inflammation and PCOS, are you on a special diet? Many of us here are big pushers of the endo diet, it's helped so many of us with pain and inflammation issues. It's a little hard in the beginning to get used to but once you get on it, wow, the results are worth it! I know alot of the ladies here hated mirena...I have never used it, I'm a birth control pill continual use member and for me, it's saved me and given me a life back! Keep us updated!
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