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Visanne
May 31, 2014 21:15:28 GMT -5
Post by smash1984 on May 31, 2014 21:15:28 GMT -5
Thanks for your reply Redwood. They don't yet know if my being unwell was because of the growths, or just a coincidence. I had been unwell for several weeks, thought maybe I had an ulcer or something... so I went to the doc, she ran blood work... liver enzymes came back odd, did first abdominal ultrasound... that's when they found the growths and just 6 weeks later they'd grown... So might be something to mention to your doc. Get an ultrasound just to be safe... I'll definitely update when I know more next week. Could be completely unrelated... I've not been able to bring myself to stop the Visanne yet. I'm so scared. I'm going to try to get a sick leave from work because I just have no idea what to expect and definitely don't want to have to go through it at work I'll update after this weeks round of appointments...
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ems
New Member
Posts: 1
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Visanne
Jul 25, 2014 10:35:58 GMT -5
Post by ems on Jul 25, 2014 10:35:58 GMT -5
Halo. Im new here but not new to endo. I had a hysterectomy a year ago. They removed one ovary and left my cervix. The endo was so bad the scan before op showed a fibroid and I went to have that removed but when my gyni opened me up he saw that was not a fibroid but that it was endo. It destroyed my left ovary and completely blocked one kidney tube. The kidney tube was cut and reimplanted on another spot. The endo was everywhere and my gyni said it was like all my insides were stuck together with glue(the endo). He couldnt remove everything without harming my bowel so I was left with some endo and a lot of scar tissue. I still get a mini period because of the cervix and one ovary. He prescribed visanne a year ago but I refused to take it, wanted my body to heal first. I saw him yesterday for my yearly check up and he strongly reccomended visanne. I went and got the prescription and I just took my first pill. I am scared to death. I dont have too much pain during my mini period but his concern was that the endo might increase. So he wants it to shrink. I am just sooooo scared of the side effects. I already battle with low libido and I run 3 times a week to keep in shape, but my husband is not happy with my big bum and now I am so upset that I am taking a pill that will most probably make me fat or fatter. The gyni said to stay on it for one year, I have tried homeopathic meds for many years without succsess so this is my only option. My period is due in a week and a half but I started taking it tonight anyway. Mainly to please my husband. We had a big blow up over this. It just feels like I am poisening my body. I pray I dont get bad side effects. Has anyone taken these twblets on the wrong time like me. The paper said to take on first day of period, my gyni didnt say anything.a
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Visanne
Jul 28, 2014 12:18:35 GMT -5
Post by indiana on Jul 28, 2014 12:18:35 GMT -5
Hi all, I've been busy so no time for the board, but I wanted to check back in. I was going to try and go off Visanne in April/May since the pain was gone and I felt sure I was in menopause or close enough to get off it. I've been on the drug for about 2 years. So... big mistake coming off it. The pain was back within 4 days. My stomach was bloated horribly within a week and I was on pain killers again within 2 weeks. I lasted 3 weeks before going back on Visanne. I had a killer period almost immediately after returning to it, 8 days, and crippling. Since I hadn't had a period for almost 1.5 years, it was quite the shocker. Once I went back on Visanne, the pain went away within a week. I'm 53. And clearly not in menopause, much to my dismay. My doc wants to wait another year and try again. I'm feeling like I'm worrying about nothing, but I'm also worrying about long term use of a hormone. Who knows what this will turn up when I'm 70? My doc says women are on progesterone for years and this is a low dose. But I guess it's the unknown that is worrying.
One person posted something about getting breast cysts. I've had three of all a sudden, (as in the past 2 years), but they are water filled and I'm told no cause for concern. Anyone else try to go off Visanne with success?
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mika
New Member
Posts: 13
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Visanne
Aug 10, 2014 20:25:22 GMT -5
Post by mika on Aug 10, 2014 20:25:22 GMT -5
Hi everyone, I've been on Visanne for1.5 yrs. I don't get my period anymore, therefore the pain is gone. I would like to stop taking it because of my migraines, cysts in my breasts, a little weight gain and feeling down a lot. I did have migraines and cysts in my breasts before I started visanne but they are worse. My dr wants me to switch to Mirena. Not sure what to do!!! Has anybody tried the Mirena??? If so, does it work the same as visanne? Thanx
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andie
New Member
Posts: 4
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Visanne
Aug 13, 2014 19:47:50 GMT -5
Post by andie on Aug 13, 2014 19:47:50 GMT -5
Hi, I'm new to this forum. Started visanne a week ago and have read some helpful things here. There hasn't been much activity here and I'm very interested to know how some of you are doing, especially smash1984. Pls let us know how you are.
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Visanne
Aug 16, 2014 12:54:05 GMT -5
Post by redwood on Aug 16, 2014 12:54:05 GMT -5
wow, Indiana...I was thinking of going off Visanne sometime soon. Well, my doctor seems to think it's ok to keep taking it and I don't seem to have side effects, but I worry about being on it regularly for so long. I think I have been on it the longest of anyone on this board. For me, it's been 2.5 years. I haven't had my period in that long either and don't have pain at all. So it works, yes. But I wonder if it would come back immediately like it did for you if I stopped it. If that is the case, then it makes me think it doesn't shrink the endo if the pain is immediately back within a few days. So strange. Maybe it would be better to taper off somewhat or supplement with natural progesterone so the progesterone levels do not drop suddenly.
I don't know. I feel fine, but I worry about taking any medication long term. Maybe something is happening that I can't feel and will pop up later. I'm 49 so menopause might not be long off, but it sounds like at 53 that you still don't have it. But I also wonder how Visanne affects the start of menopause. I wonder if it could actually delay it. I mean, you are messing with your hormones.
But basically, I feel find, so it hard to find a reason to stop taking it. I keep putting it off. Although I am due to see my doctor for a yearly exam next month, so I will ask her what she thinks, but she has always been of the opinion that I can take it until menopause.
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Visanne
Aug 20, 2014 8:41:14 GMT -5
Post by indiana on Aug 20, 2014 8:41:14 GMT -5
Hey Redwood, I noticed you were one of the first people on this board to try Visanne. I'm just a little bit behind you in timeframe (2 years). My doc said that you just stop Visanne, there is no tapering off. She was convinced that I would be fine, I'd just experience some symptoms of menopause like hot flashes (I have zero hot flashes or any real signs of meno right now). I know Visanne does do something positive for shrinking the lesions. My ultrasound about a year after I was on Visanne showed my tubes were no longer blocked and one of the endo cysts on my ovaries was much smaller. I was also shocked at how fast pain came back after going off the drug -- I stuck it out for three weeks before giving in. Then that period was awful, like I was back to square one. Weirdly, the cyst is on my left ovary, but the pain always shows up in my right side. Since I have no signs of menopause, I relied on a blood test that showed my FSH (folicle stimulating hormone) was at 63. The year before it was zero. Apparently that reading reflects a drop in estrogen. So I guessed that I might be in meno and Visanne was essentially blocking the signs. Now I have no idea. The median age for meno is supposed to be 51.
So my plan now is to stay on this for another year and see. I even asked my doc to whip out my ovaries laparoscopically and let's get this show on the road. But she scared the daylights out of me saying that it would be a full hysterectomy. Then told me how her patient who had similar issues did the surgery and they had to do a bowel resection because the endo stuck everything together. Her patient nearly had to wear a colostomy bag. Scary stuff. So faced with that option, I'm going to hope the drug is not messing things up too much and stick with it. Playing with hormones is something I swore I'd never do, so I hear you! Now here I am doing just that.
My doc also feels like there is nothing to worry about with Visanne longer term. She thinks 2-3 years is not a long time to be on a drug. I press her hard on it every time I see her. All she will say is the risks are osteoporosis and early dementia. But... but... there are no studies on it.
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Visanne
Aug 20, 2014 10:47:38 GMT -5
Post by bamabalacha on Aug 20, 2014 10:47:38 GMT -5
Hi all, I've been on Visanne since November 2013. My gyno suspected I had endo and put me on it until she could perform a laparoscopy on me. Sure enough, the surgery in February 2014 revealed endo lesions and scar tissue all over my pelvis, which she then removed.
Apart from a few nasty side effects at the beginning (my skin went bananas, I had hot flashes, I was tired and nauseous all the time) that cleared up after about a month, the drug has worked wonderfully. Even before the lap, I had a noticeable decrease in pain and I haven't had a period since December 2013. I was even able to have a normal Christmas and New Year's with my family and partner! Once I healed from the lap, I felt closer to "normal" than I had in a long, long time. I'd only have minor, brief pain flareups once or twice a month and my period never came back, thank God.
That is, until about two weeks ago. I started having bad cramps, which then escalated to "wake me up in the middle of the night because my uterus feels like it's contracting" cramps, which then were joined by the stabbing, yanking pain that I associate with my endo. I ended up in the ER this past Saturday after not having slept through the night for 5 days and being unable to move from the fetal position. They hooked me up to a morphine IV (THANK YOU, THANK YOU!) and did an ultrasound, and the only mildly odd findings were that my ovaries looked like they were ovulating normally and that I had a "small but notable" amount of fluid around my right ovary and in the right side of the pelvic cavity. This only made me feel a bit better, as my ultrasounds leading up to my lap, including one done about a month before hand, were pretty normal looking and I had an endo party when they opened me up.
The ER doctors gave me a Percocet prescription (THANK YOU, although I had hoped to be done with narcotics for my lady stuff for quite some time!) and told me to contact my gynaecologist on Monday. The ER OB/GYN had gone through my file (my gyno is based at the same hospital and I'd had my lap done there) and said that based on my current symptoms and based on the surgical report of how far and fast my endo had originally spread, returning endo was the most likely cause of my current pain.
So my question is: have any of you ladies had a recurrence of endo while taking Visanne? It's such a new drug and it's so hard to find information from people who have taken it.
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andie
New Member
Posts: 4
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Visanne
Aug 21, 2014 19:13:39 GMT -5
Post by andie on Aug 21, 2014 19:13:39 GMT -5
You aren't supposed to ovulate on this medication......so it seems like you had at least one cyst that burst. That causes extreme pain. The only other thing that would make sense is that you have began another med that is interfering with your visanne.
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Visanne
Aug 26, 2014 18:50:18 GMT -5
Post by redwood on Aug 26, 2014 18:50:18 GMT -5
You can ovulate on Visanne. Sometimes I do and I can always feel it. My doc said that it can happen (break-through ovulation). I still don't get a period. Haven't had a period in over two years.
Grapefruit can interfere with Visanne. It's on the info packet.
Indiana - if you are in menopause, you wouldn't get a period though, would you? Or maybe just one after you stop and then nothing perhaps afterwards (although I know you went back on).
Funny, but I didn't have hot flashes until I started taking Visanne. Weird. I always get them when I wake up in the morning. Nothing major though.
Dementia and osteoporosis. Great.
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Visanne
Aug 27, 2014 8:32:25 GMT -5
Post by indiana on Aug 27, 2014 8:32:25 GMT -5
Hi, I agree with Redwood. I've had symptoms of ovulation a few times. I feel like I might get a period, but don't.
Re: me and menopause, Redwood. So I asked for another blood test because I am so incredibly tired. Part of the test was for FSH, which should indicate menopause. I'm back down to 3 as a reading. So nowhere near menopause as I thought last year when the number was 63. That would explain why I got a period after going off Visanne. My estrogen is alive and well! No idea why the reading before was so high, but there you go.
On the tired issue, my cortisol (stress hormone) reading was very high. 647 and should be 250. I have an appt with my endocrinologist in a month (of course, it takes a month) to talk about it. But through her receptionist... the doc relayed that Visanne can cause high readings and fatigue. I've never had this experience on Visanne. I actually think the issue is now more systemic. Messing around with hormones affects everything.
But the alternative is incredible pain. So I'm sticking with Visanne and trying to manage by cortisol levels with diet, exercise and pleasant thoughts. LOL.
I've never had the hot flashes. But I've read that others experience them on Visanne.
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Visanne
Aug 27, 2014 8:46:38 GMT -5
Post by bamabalacha on Aug 27, 2014 8:46:38 GMT -5
You aren't supposed to ovulate on this medication......so it seems like you had at least one cyst that burst. That causes extreme pain. The only other thing that would make sense is that you have began another med that is interfering with your visanne. Unfortunately, I'm all too aware of what a burst cyst feels like (before the Visanne, I went through a 1.5 year period where I'd get a new whopper of a cyst every other month, no matter what flavour of birth control I was on. One of the mega cysts caused my right ovary to go into torsion, gack), this pain has been more...protracted, I suppose. And you can ovulate on Visanne, according my doctor and all the reading I've done, but most people don't. I haven't started any new medications recently, the Visanne is my most recent addition. And I don't drink/eat grapefruit products and haven't been on any antibiotics. I was hospitalized from an anaphylactic reaction to CT scan contrast dye about a month ago, though. Maybe the steroids they gave me in the hospital threw everything off?
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andie
New Member
Posts: 4
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Visanne
Aug 27, 2014 13:18:12 GMT -5
Post by andie on Aug 27, 2014 13:18:12 GMT -5
Interesting, always thought if you ovulate, a period WILL come 14 days later...... I went thru multiple fertility procedures including IVF. if we do ovulate on this, the added progesterone is stopping the "period". So confusing, after IVF, you inject or use cream progesterone to thicken up the lining in the uterus.... ?.... Who knows how this all works..... I'm about to turn in my "girl card" ha ha.
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Visanne
Oct 15, 2014 14:01:39 GMT -5
Post by smash1984 on Oct 15, 2014 14:01:39 GMT -5
Hi Ladies, sorry I haven't been back on with an update. My last post was in May, I had been sick since March. In June I was sent to a gastroenterologist to investigate my symptoms. The feeling unwell, nausea, pain, weight loss, etc, etc. And she also suspected ulcers. So she did an endoscopy. Turns out I have about a dozen ulcers throughout my stomach and duodenum. They are smallish, not super deep, but there are so many. Usually with ulcers, people just get one. My docs words were "Hun, I just don't even know what to say, there are so many"... Yikes. She biopsied, and I do not have H.Pylori bacteria, so she decided the ulcers are from overuse of NSAIDS. I used to 'overuse' them... from the Endo pain. But this was 4 years ago. Since my lap in 2010 and being on continuous BCP for 2 years, and now Visanne for 2 years, I hardly ever (maybe 1 or 2 per month for headaches) took NSAIDS. I haven't been in chronic pain, so I had no reason to take them. So I DO NOT believe they are the cause. I am convinced it is the Visanne. So now I've started digging around a bit to see if there are other cases of long term (couple years) Visanne use associated with ulcers. As for the other growths, they dismissed them, saying they are nothing to be concerned about and that they do not know the cause. I will ask my GP for a follow up ultrasound at my next annual exam just to be sure there have been no significant changes. As for the breasts, I had a biopsy on one of the larger fibroadenomas, and the pathology came back confirming fibroadenoma. I will continue to have these followed by ultrasound every 6 months. I believe all of it is a result of the Visanne. I cannot think of any other reason all of this could be going on. But, I'm still taking it. Guess that speaks to how desperate I am not to go back to Endo pain. So, I have been on a double-dose of ulcer medication since June 24. Just the last few weeks I'm starting to feel human again. I can eat, I've gained back 5lbs, so my energy and appetite are returning. And I have what I now know is 'ulcer' pain much less frequently. I just had a follow up with the gastro doc and she wants me to continue the meds, and she wants to do a follow up endoscopy to see if they are healed. I am certain they are not, and that the Visanne is preventing them from healing... but we'll see what the scope reveals. Sorry that was longer than I intended it to be! haha... Hope you are all doing well. If anyone else has developed ulcers, I'd love to hear about it... Thanks Ladies!
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Visanne
Oct 16, 2014 8:23:01 GMT -5
Post by indiana on Oct 16, 2014 8:23:01 GMT -5
Hi smash 1984, it's good to hear that you're doing better. I'm also one of the people on this board that has been on Visanne for 2+ years. There's only a few of us Visanne veterans/guinea pigs . You mentioned looking to see if ulcers are a side effect of Visanne. I found this. Sometimes it's not such a good thing to Google medical facts. My docs get fairly irritated when I quote something from the web. But for what it's worth, this study says some patients develop ulcers on Visanne. medsfacts.com/report-VISANNE%202MG-causing-ULCER.phpThere are definitely side effects with this drug beyond the well known ones -- like acne, and reduced sex drive and headaches at first. I had an out of whack blood test that showed high cortisol (stress hormone that keeps your adrenal glands running on high speed). My doctor said it was likely Visanne, which she called "the pill". Funny, but I've never thought of this drug as the pill, since it doesn't prevent pregnancy. It feels like I'm revving all the time, like my system never relaxes. I'm consequently very tired. So trying vitamins and exercise and diet to bring the reading down. I've also had mammograms that have revealed cysts. 1 the first year, 3 in the second. They are water filled, and I'm told not to worry. I think Visanne is causing them. But.... I'm staying on it too. The pain of endo is no joke. I guess there are trade offs with everything and every drug. Long term, what will this drug mean to us ladies who have stayed on it? I keep stressing over that. But I can live my life without pain right now and I guess that's the deal with devil.
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