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Visanne
Oct 18, 2012 8:21:03 GMT -5
Post by spostill on Oct 18, 2012 8:21:03 GMT -5
Hey Kymberly, I wanted to ask you a bit more about the adenomyosis, this is the first time I've heard of this. I looked it up on wiki - and I am a little surprised that none of my doctors have considered this as part of my problem. I have all the symptoms listed. I wanted to thank you for sharing. I have a follow up appointment with my Dr Nov 1st and perhaps it is worth me having an MRI before jumping into Laproscopy. How was it diagnosed in your case?
I hope someone one here has experience with the visanne and mirena to share their experience with you. and Good Luck!
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Visanne
Oct 23, 2012 9:26:01 GMT -5
Post by indiana on Oct 23, 2012 9:26:01 GMT -5
Hi Spostill, I also have endo and adenomyosis with multiple myometrial cysts. You asked another member how it was diagnosed. For me, it was by transvaginal ultrasound and MRI. It showed up on the ultrasound, but it was really the MRI that confirmed it. I have not had a lap. Have to say Visanne is really working for me. I have almost no side effects now I've been on it for almost 5 months. I did have some at the start for about a month and I also had the tiny facial pimples others refer to, but the pimples are now completely gone. The only thing I do now is spot, about the time I should get my period, but obviously don't. It's more irritating than anything, with some minor cramping which goes away within 4 days. I'd recommend Visanne, though people react differently to meds as this board shows.
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Visanne
Nov 2, 2012 12:48:00 GMT -5
Post by spostill on Nov 2, 2012 12:48:00 GMT -5
thanks so much indiana, I saw my OB this week and I was a wreck and didn't think to ask about adenmyosis. He left me 2 options, we could try other meds like lupron or BC pills or back on Visanne, or second choice was lap, followed by 3 months therapeutic treatment with meds like visanne. Visanne was working for me for the first 10 months but then things graudally got worse and I was supposed to leg it out for 2 more months when I decided to stop the visanne. The last ovulation left me immobilized and home sick from work for a week. I thought it was my period startin back after stopping the vissane since it had been 3.5 weeks but I had all that pain and no period until 2 weeks later. Perhaps I had a cyst rupture? I have had that happen previously and it also left me sick home from work when nothing helps with the pain. I should ask my dr about a MRI.
THanks so much for your support, it is defenitaly a frustrating battle when you feel like you are running out of options. I hope the vissane continues to work for you. Are you taking it indefinately, or for certain amount of time?
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Visanne
Nov 6, 2012 10:13:29 GMT -5
Post by indiana on Nov 6, 2012 10:13:29 GMT -5
Hi Spotstill: it sounds like you've been through the ringer. I feel for you -- it takes a lot of strength to keep going. The pain of endo is crippling, not to mention the worry and the lack of options. I was hospitalized 2x in the early stages since they had trouble diagnosing the endo and I also had a cyst rupture which created a massive infection and I needed IV antibiotics. The only other drug I was on was Seasonale and I wouldn't recommend it. I have a friend who was on Lupron and she said it wasn't that bad -- though everyone reacts differently to drugs. I think the only options docs have is BC pills and they just keep trying them until one works. I'm 51 (as of a week ago) so I'm fairly close to Menopause -- I sincerely hope. I"m told the endo will go away then, so I'm on Visanne for as long as that takes. My doc told me that the complexity of my issues meant laparascopic treatment wouldn't help. She would have to do a hysterectomy if we chose to go the surgical route and she advised that would be a tough surgery. Interestingly I have another friend who is going the hysteroctomy route since no meds are working and she's tired of the pain. Amazing how many of us face endo. Can I ask you -- what happened at the 10 month mark for you on Visanne? It was working until then and suddenly stopped???
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Visanne
Nov 9, 2012 13:20:39 GMT -5
Post by spostill on Nov 9, 2012 13:20:39 GMT -5
Hi Indiana, yes the endo was working great, I had the odd stubborn headache when I started on them, but then 10 months of bliss. I had slight cramping here and there and spotting if I missed a pill but mostly good. After approxminately 10 months I had a check up with my dr and told him things were great, then the very next day ironically enough the cramps started back. Just slight at first but annoying, then they progressively got worse over the next 3 weeks so I decided to stop taking them early. I was supposed to take them for 12 months. I figured if I was going to be in pain anyways whats the point taking extra meds? I'm not sure why, I wouldn't expect the body to grow a tolerance to them? I think my dr wished I had kept at it for 12 months but I felt I was going back to the way things were anyways. I hope the visanne helps get you to menopause peacefully. It did work wonderfully for most of the time for me. The family dr was concerned about osteoporosis, so just make sure you are getting enough calcium to keep your bones strong.
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Visanne
Nov 13, 2012 10:50:48 GMT -5
Post by indiana on Nov 13, 2012 10:50:48 GMT -5
Hi Spotstill: thanks for the info. I'm coming up to 6 months on Visanne. Hoping it will go the distance for me. Yes, the osteo is a concern. Hope you find a decent alternative!
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nifwlseirff
New Member
Kymberly Fergusson - nifwlseirff
Posts: 3
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Visanne
Nov 27, 2012 9:14:01 GMT -5
Post by nifwlseirff on Nov 27, 2012 9:14:01 GMT -5
After 3 operations to remove severe endometriosis, I was still having a lot of pain, and bleeding profusely (14 days, very heavy, each month). My first surgeon decided that this was 'normal', the pain was 'imagined', and to just 'learn to deal with it'. I wasn't happy with this, so found a private surgeon.
The private surgeon order a barrage of tests, including MRI, ultrasounds and more. But none showed any evidence of adenomyosis or endometriosis.
Next operation with the private surgeon (4th op overall), he found some endometriosis, some bad adhesions (both removed), and took needle biopsies and tissue samples from within the uterus muscle wall.
He noted that the surface of the uterus looked like a sponge, not smooth and even like a healthy uterus. It was also enlarged (double size).
The biopsies came back positive for endometrial tissue (growing inside of the muscle wall -- not meant to be there!).
Since then, you can see the adenomyotic cysts in the uterus wall on ultrasound (black holes). And they can also measure the overall size of the uterus. My most recent MRI has shown these cysts as well.
I think if the person doing and examining the MRI/ultrasound is specifically looking for it, it may show up. Or not - my earlier tests were negative, but biopsies from all through the uterus wall in all positions were positive. Biopsy is the only fool-proof method for diagnosis unfortunately, just like laparoscopy for endometriosis.
I've been on Visanne for 2 months now. First month was plagued with nausea. And hideous breast pain before my period. I've still bled for my usual time (7-10 days), with a much shorter cycle (24 days!), but it was lighter, and less pain. Apparently it can take 3 or more months for Visanne to stop the bleeding (if it stops mine -- I bleed through everything).
Surgeon wanted to take out my Mirena today, leaving me only on Visanne. She thinks it would be strong enough. I don't think one alone is strong enough. The Mirena has helped me keep working and cut down both the amount of blood and duration of my periods - it's been a life-saver. If I didn't have it, I'd be losing far too much blood, and my periods would last well over half a month (monthly cycle).
So I convinced her to leave the Mirena in. Also if it's taken out, I would have to go on BC in addition to visanne, and that will skyrocket my blood pressure. I'm sure I'll have this struggle with her again next year, when it needs to be replaced.
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Visanne
Nov 27, 2012 20:48:37 GMT -5
Post by semicolon on Nov 27, 2012 20:48:37 GMT -5
Kymberly- I always say go with your gut- not to dis your surgeon at all, but usually what you think is the right course is. I think maybe your track record will speak for itself if you continue to feel good.
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mjene
New Member
Posts: 2
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Visanne
Dec 10, 2012 11:38:09 GMT -5
Post by mjene on Dec 10, 2012 11:38:09 GMT -5
hi i'm new to this board and i am glad i found it. i've had endo since i was a young girl and it took many years. once diagnosed i was put on BC and was on them for 20 yrs. i've now been put on visanne. my question is is it normal to have your period for 4 weeks? its not heavy need to keep panty liners. also the pain in my uterus area is so sever at times that not even advil will take it away.
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Visanne
Dec 12, 2012 9:46:51 GMT -5
Post by indiana on Dec 12, 2012 9:46:51 GMT -5
Mjene -- the irregular bleeding is a side effect of visanne, according to the drug info. I had a 3 week period/spotting when I first started. It took a few months, but it gradually reduced down to a few days. That said, at 6 months on it, I just had a 24 day period -- real period, not spotting. Asked my doc and she said that Visanne thins the lining of the uterus and it might have been too thinned. She might put me on a little estrogen to counteract the issue. But if you've only been on Visanne for a few months, just a guess, but it might just be the start up phase. For the pain, ask your doc for a prescription for Naproxin. Over the counter, it's branded as Aleve. But the prescription strength version helps a lot with inflammation caused by endo. The only thing to watch is Naproxin can be rough on a stomach, so take with food and don't take for long periods of time, just when needed. At least, that's what I've discovered.
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Visanne
Jan 8, 2013 19:42:24 GMT -5
Post by mcoates65 on Jan 8, 2013 19:42:24 GMT -5
Hello ladies, I am new to this board and here is my story.......I have massive adhesion caused by end...no longer a candidate for surgery I've had five two of which caused bowel resections. Initially they put me on depot provera and I bleed daily for a year until which time I changed back to birth control pills. The depot almost made me lose my marriage due to the bleeding and no sex drive took about two yrs to get it back. I was OK on the birth control pills for about five yrs but then I started getting constant yeast infections so I quit taking them. Well then began my massive pain and bleeding took me five months to see another specialist who then put me on lupron. I was on it for a year and did well on it overall. I had some hot flashes but they weren't too bad. Now Dr says can't stay on that re bone loss so now she switched me to this new drug visanne and I have felt sick and horrible on it. First month constantly sick to my stomacg diarhea etc then after I took first 28 pack period from hell and I am still on it after 12 days all the pain is back. I have appt to see gyno on Thursday but my options are getting pretty thin. Can anyone help?
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Visanne
Jan 14, 2013 23:53:40 GMT -5
Post by northernstar on Jan 14, 2013 23:53:40 GMT -5
I had a hysterectomy in May 2012 but kept both my ovaries. The gynae removed what endo he could find, but I also had adenomyosis and endo in my cervix. I was totally pain free until December 2012 when the old familiar pain returned. I was started on Visanne and have now been on it for 10 days. My pain is gone, apart from the odd twinge every so often. I'm not sure whether this is down to the Visanne, the fact that I started the endo diet at the same time, or it's just where I am in my cycle. One thing I am experiencing with Visanne (well, actually, a few things!) is severe nausea, headaches and a constant dry mouth as well as short periods of anxiety (which is not like me at all). Has anyone else experienced these things, and if so, how long do they take to pass? I initially started to take it in a morning but felt nauseous all day long, so have switched to taking it in the evening. This leads to me not sleeping well due to excessive thirst, and I'm still feeling extremely nauseous until about 3pm. Any suggestions?
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Visanne
Jan 17, 2013 12:07:01 GMT -5
Post by northernstar on Jan 17, 2013 12:07:01 GMT -5
Ok, so I've had two weeks on the Visanne now. The nausea seems to be improving, my pain is minimal (although I had pain after sex the other day which lasted about 24 hrs, but not painful enough that I needed to take anything). I still feel really dehydrated though, especially at night. I normally drink about 2 litres of water a day, so I know that I am not dehydrated, but I am waking up lots through the night with a very dry mouth and needing to drink. I am continuing to take the Visanne at night, just so I am not nauseous all day long.
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Visanne
Feb 3, 2013 10:29:53 GMT -5
Post by charlie29 on Feb 3, 2013 10:29:53 GMT -5
My question to all of you is are any of you on an antidepressant? I am thinking that Visanne is counteracting with my Prozac and in tern giving me a lot of emotional lows. I'm not suicidal or anything but I have major lack of motivation, I want to sleep all the time and I can cry for hours for no reason.
I had my last dose last night because my husband and I think it's too risky emotionally for me to stay on it but I wouldnt mind some input.
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Emily
Full Member
Posts: 148
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Visanne
Feb 3, 2013 11:25:01 GMT -5
Post by Emily on Feb 3, 2013 11:25:01 GMT -5
I am on Zoloft for anxiety/depression. When I used to be on BCP (I tried both progesterone only and estrogen/progesterone ones) my emotional problems got much worse and I found myself having small breakdowns all of the time. I got off of all hormones and feel like my Zoloft is working again. It took about 2 months to feel back to normal. I know the feelings you are having and I know how scary they are not only to you but also your loved ones. Talk to your doc before going cold turkey, it can be dangerous to make sudden changes.
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