hm48
New Member
Posts: 1
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Visanne
Oct 26, 2013 9:05:19 GMT -5
Post by hm48 on Oct 26, 2013 9:05:19 GMT -5
Hi Everyone,
I am new to this group, I am 26 years old and three weeks ago I had a lapatonomy done. I had a 9 cm cyst on my left ovary, when they removed the cyst they realized I had stage 4 endometriosis.... I met with the gynecologist (who also performed my lapatonomy syrgery) three days ago and she said I needed to have another surgery in 3-4 months done by an endometriosis specialist where they would laser the "chocolate liquid" that was found all inside me, because during my operation it could not all be removed...
She also told me to take visanne. Now I am very concerned, because having read all the posts here, it seems to me that all you ladies who are on Visanne are taking it because you had such horrible cramps/abdominal pain. I on the other hand had never had such bad pain. I mean my periods aren't painless but they didnt cripple me or prevent me from going on with my daily tasks. They last 7 days and the first few days are really heavy.
Is there anyone here who was perscribed Visanne for reasons other than horrible pain? I mean does the drug in any way help with the endometriosis itself? I have taken iVisanne two days now, and I feel that my ovaries are on FIRE! I want to stop taking them, its causing me pain when I didn't have any before.... and It will be a while until I am seen by the endo specialist..
Finally, has anyone had a lapatonomy done before? I just want to know how long it will take for the swelling around the massive cut to completely go away!
Thank you ladies!
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Visanne
Nov 20, 2013 0:15:33 GMT -5
Post by biadut on Nov 20, 2013 0:15:33 GMT -5
Hi everyone... I'm a South African and I've had problems with endometriosis in the past... my doctor removed a golf-ball sized chunk of it in 2010 and since then I didn't have issues and I fell pregnant in March 2011. Since my child's birth my periods have been heavy and painful and my new doctor put me on a pill called Qlaira last year June. It went well but I had irregular bleeding for a long time and two months ago in September he put me on Visanne to see if the spotting will go away. It did... and so did my period. And along with the disappearance of my period, came the depression. It completely altered my personality and I literally became a basketcase. I didn't suffer any weight gain or loss and my skin behaved beautifully on it, but the depression just wasn't worth it so I've left the pill in the meantime. Will be going back to Qlaira just as soon as my period decides to pitch up again, and in the meantime I am still waiting for the effects of Visanne to wear off, I am still battling the depression and it's been almost a month that I have been off it. Lots of strongs to everyone who battles endometriosis and I do hope that you find treatment that works for you when the Visanne doesn't!
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bonka
New Member
Posts: 1
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Visanne
Nov 27, 2013 11:48:08 GMT -5
Post by bonka on Nov 27, 2013 11:48:08 GMT -5
Good day Been reading these boards for years but just decided to join and post. Super informative and helpful, I've learned a lot from these boards!! I am 29 yrs old, had a laparoscopy done when I was 17, got diagnosed with stage 3 endo at that time and have been on BC since then. Also diagnosed with an arcuate uterus and vaginal atrophy due to continued BC use. Have taken about 8 different kinds since being diagnosed and I am suffering from the same pains and symptoms I had 12 years ago, as well as skin dryness (vaginally and externally). My OB/GYN has suggested I start taking Visanne, and from what I've read here, it seems to be helpful to the majority of women taking it. My main question is this: since it inhibits ovulation (1 mg dose of dienogest is the minimum for ovulation inhibition, and Visanne contains 2 mg), but it is not indicated as a BC, why would I require an alternate form of contraception?? I am highly sensitive to spermicide and latex, so finding a condom that doesn't cause vaginal issues is extremely difficult and I haven't used one in 10+ years. Can't do the diaphragm due to my weird shaped uterus and b/c of my latex & non oxynol 9 sensitivity, I can't use a female condom or sponge. Have any of the women using Visanne tried not using contraceptives while on Visanne? If so, have any of you become pregnant? I have never had a fertility test done, so I don't even know if I'm fertile or not, but I'm assuming I am (as Dr has said, until I try getting preggo and don't get anywhere, assume I am). I HAVE been on continuous BC for the past 6 yrs, so I'm not ovulating now....I just kinda want to know what my actual chance of pregnancy is when I start the Visanne. Thank you!
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Visanne
Dec 17, 2013 14:42:13 GMT -5
Post by indiana on Dec 17, 2013 14:42:13 GMT -5
Hi all. had an interesting doc appt today. Visanne has been working wonderfully for me. I've been on it for 1.5 years. Pain-free for almost all of it. No periods for a year. I'm now 52. No signs of menopause, but then none of the women in my family had any. My doc wants to see how I do off it. I actually asked to come off it. The trials on long term use of this drug are non-existant and I would rather not be on a drug if I don't have to be. Have to say I'm both relieved to stop the drug and worried. The thought that I might return to the horrible endo pain is daunting. My doc has no info to tell me what will happen. It's such a new drug. She did say that progesterone stays in the system even after discontinuing so she's hoping things will run smoothly. Has anyone come off Visanne and had a good experience? Anyone in my age range? Since if you're younger your estrogen levels are higher and I'm guessing you get your period almost right away. Whereas, older means less chance of that?
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Visanne
Dec 27, 2013 14:49:54 GMT -5
Post by redwood on Dec 27, 2013 14:49:54 GMT -5
I've been on Visanne for close to two years now. It will be two years in February 2014. My doctor did not express concern with staying on it, although I am due to see her again, so I will see what she thinks. What I'm afraid of is if I go off it and the pain comes back and then I go back on it that it won't work anymore. I am fine with no side effects. I do get hot flashes (minor ones) every once in a while), but I am not sure if that is my age or if it has to do with the Visanne. Although I must say that the hot flashes seemed to start happening when I started Visanne.
But I also feel uncomfortable to keep taking it forever too. But it's been so nice not having a period for almost two years.
I am also older - 48 years old, so menopause could be soon, in a few years or so.
Keep us updated on how it goes for you going off Visanne. If I do this also, I'll let you all know what happens.
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Visanne
Dec 28, 2013 8:44:33 GMT -5
Post by indiana on Dec 28, 2013 8:44:33 GMT -5
Hi Redwood, yes, I will keep you updated for sure. I have about a month of pills to go before I go off it. I agree about the worries pain will come back if I'm off it. I'm somewhat throwing the dice, and I change my mind every week about whether this is the right decision. I have zero desire to get a period again. I haven't had one for a year. My doc did say I may not like the menopause symptoms that start showing up once I'm off Visanne, but I'm counting on my genes and the women in my family telling me menopause was no biggie for them. The longer term concerns about being on this drug relate to an increased possibility of osteoporosis and early dementia. Though no one has been on it long enough to know for sure, so how much of that is guesswork, who knows? I think these concerns come from information about long term use of a Progesterone. Anyway, will let you know in a month what happens.
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mika
New Member
Posts: 13
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Visanne
Jan 7, 2014 22:16:22 GMT -5
Post by mika on Jan 7, 2014 22:16:22 GMT -5
Hello everybody, I've been taking visanne since April 2013. I got my period in May and haven't had a period since then!!! That's the best thing that could have happened. I have been pain free thanx to visanne. My only issues have been my migraines. I always suffered from migraines, but they are a lot worse now!!! My family dr thinks I should Talk to my gyn because she says it is not normal to be getting so many headaches. If I stop taking visanne I am afraid of what might happen. Also I have been spotting for the past month and a half. Has anybody been having any spotting for this long?
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lili
New Member
Posts: 1
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Visanne
Jan 12, 2014 14:04:35 GMT -5
Post by lili on Jan 12, 2014 14:04:35 GMT -5
Hi, I have been takin Visanne since november. I had my period in december. It lasted for two weeks, normal to light bleeding adn now i am spotting for 4 weeks. It says that that is one of side effects of Vissane, but i am still woried. I had my surgery in october. It wasn"t laparscopy, but clasical ( they cut from my belly button down). I never had any problems, no pain, no menstrual problems, juts one i started to feel very strong pain in my stomach. This was the strongest pain i have ever experienced. I couldn"t lie down, when i went to emergency , until they gave me some painkillers. At first they thought i have gallstones. The next day i had ultrasound of the abdomen and they saw that i dont have them, they saw something in my stomach but they weren"t sure what. So at the end of the day gyn. loked at me and did ultrasound. They thought it might be a tumor.It wasn"t . When they opened my stomach they so that is endomtriosis.They had to remove one of my ovary. I am endo free now. I often have pain, but that is because of surgery. My gyn. sad that is normal. I hope i will stop soon.
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Visanne
Feb 16, 2014 19:43:15 GMT -5
via mobile
Post by littlemiss on Feb 16, 2014 19:43:15 GMT -5
Hi all, So a few days ago I stopped taking Visanne (with my Doctor's advice). I'm wondering if anyone here has gone off of it And what the side effects were. I had to stop it due to increasing very unpleasant side effects, but really enjoyed being pain free!
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hagri
New Member
Posts: 6
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Visanne
Mar 26, 2014 8:49:49 GMT -5
Post by hagri on Mar 26, 2014 8:49:49 GMT -5
Hi everyone, I have endometriosis along with adenomyosis. My periods are last 11-12 days with heavy bleeding (clots, over flow, pain, etc.). Over the past year especially I have developed chronic anemia. My haemoglobin level are currently at its high 105, and the normal one should be between 120-150. I did ivf last year with no success, and it seems it screwed my hormones big time. Last fall I tried visanne and lasted only 20 days on it - I had light bleeding and developed strong migraines. At the same time my haemoglobin level was very low - 82, and quit taking visanne. It was mid October. November period was alright with manageable pain and flow. Then I took two weeks vacation, and in December I had my best period in the last 10 years since I was diagnosed with the endometriosis - extremely mild period with virtually no pain - I was so happy. I have also started taking pelvic floor therapy sessions with internal work, and it helped to decrease all that tension that I have in that area. In January the period was ok, tolerable. And in February it came back to "normal" with pain and heavy period. The light pain did not go away after the period . I went to see my family doctor, and he asked me to think about the surgery to address the chronic anemia issue - it is hysterectomy. I decided to give Visanne another try and stared taking it at the end of February. As of now I have been taking it for four weeks and what I ended up having is pain to be treated with painkillers once a day, light bleeding, and late period that have been lasting for 10 days, and it seems that the flow is increasing with everyday. Today I decided to stop taking visanne as it does not work or maybe my body it trying to adapt to it. I am still seeing the pelvic floor therapist as it helps to reduce tension in that area for some time. I will visit my gynaecologist in April and ask if anything else can be done besides hormones, mirena and surgery. But I think, I know the answer though. I just want to thank you all for sharing your experiences as I have been reading this forum for few months already, and thanks to you I found a pelvic floor therapist here in Toronto.
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Visanne
Mar 26, 2014 20:27:45 GMT -5
Post by willow82 on Mar 26, 2014 20:27:45 GMT -5
Visanne can take several months to really start working. For any progestin based treatment, including visanne, mirena, provera, etc initially there can be an increase in bleeding both in frequency and amount of bleeding. This can take 3-6 months to fully resolve.
I did not try Visanne until after my hyst as a preventative measure for my endometriosis so I don't know how it would have effected my bleeding. Though I will say I opted to go on visanne afterwards due to my history of irregular and at times heavy bleeding while on progetins. I unfortunately have developed severe allergies on any medication that increases my progesterone levels, so I had to stop visanne. Though my increased allergies with that were no worse than any other medication I've tried (Lo Seasonique, Provera, etc).
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hagri
New Member
Posts: 6
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Visanne
Mar 28, 2014 14:44:40 GMT -5
Post by hagri on Mar 28, 2014 14:44:40 GMT -5
Hi willow82, thank you for sharing. I did not know that it may take up to 6 month for visanne to start working. The impression I've got that (it may be that I missed that information as well) while reading the previous comments here that it starts working pretty fast. My concern with visanne and other progestin related products is that they may damage liver, and as I still have pain due to the condition I have to take painkillers in order to lead more or less normal life. Everyone of us suffering from endometriosis and/or adenomyosis has to make choices that work best.
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Visanne
May 2, 2014 19:15:13 GMT -5
Post by lanacoral on May 2, 2014 19:15:13 GMT -5
Hello. We just got Visanne recently in Canada. It's expensive (250$ for 3 months) but it is the first thing to EVER work for me. I am on it for 4 months now.I only had 1 period so far and it was really heavy and a bit painful but then it stopped. Spotting has been minimal. I still feel like I am ovulating- I get the regular ovulating symptoms, and when it hits the week where I would get my period even though it doesnt happen I still have some pain, bloating, and PMS. So far at least.
The only real side effect I've had is extreme nausea and trouble sleeping. I've also had a bit of dry mouth and eyes but nothing too terrible.
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Visanne
May 25, 2014 16:47:41 GMT -5
Post by smash1984 on May 25, 2014 16:47:41 GMT -5
Hi Ladies... I'm coming up on two years on Visanne this summer, and it has done wonders for my endometriosis symptoms. No period, no pain. It's been great. However, I've developed a number of tumors in my body. I have 12 in my breasts which have multiplied from 3 just 2 years ago (getting US every 6 months to follow them). And this past March I became unwell for several weeks (fatigue, moderately severe pain in upper abdomen and back, nauseated, etc, etc)... finally went to the doc, had abnormal liver enzymes. Have since had abdominal US x2 and an MRI. There is a mass in my liver that has grown from 1.7cm to 2.2 cm over a 6 week period. A second small growth (0.6cm) in my liver as well as small ones in my kidney, spleen and gallbladder. I'm seeing a separate specialist for my breasts, abdominal issues and endometriosis. So, 3 different specialists in total, but I'm beginning to think these may be related to the Visanne. I'm wondering if any other long-term users of Visanne have had anything similar pop up?? Thanks Ladies! ** UPDATE** I saw my gyne yesterday, who advised that I need to stop the Visanne IMMEDIATELY. I'm seeing another specialist on Monday to follow up on the growths, and an abd/pel CT scan on Thursday as they have not been able to accurately characterize the growths on the US and MRI. I'm devastated. Nearly 2 years of ignorant bliss with the Visanne... and now I find out it's been wreaking havoc on the rest of my body. Gyne advised to get the Mirena, but she is not available to put it in until mid-July. So I am going to have to somehow survive the next 6 weeks with no endo treatment at all. Terrifying. I have no idea what to expect, but am preparing for the worst. Certainly not what I need when I'm already dealing with the stress of all these growths. I'm a sad, sad girl
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Visanne
May 29, 2014 23:32:10 GMT -5
Post by redwood on May 29, 2014 23:32:10 GMT -5
Yikes! Smash1984 - that's scary. I have been on Visanne over two years (since March 2012) and I feel find and have no symptoms or period. Now I feel nervous though. I keep thinking about going off it to see if I am still ok without it, but I so don't want the endo symptoms to come back and I have my doctor's blessing to stay on it until menopause (I'm 48).
I don't have any signs of illness or any symptoms of anything, but I wonder I should stop it too. I'm a total guinea pig now since they only tested it for 18 months and I've been on it 26 months now.
I'm so sorry. I hope that things can be resolved quickly. Sending healing thoughts your way.
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