Hey everyone. I still consistently get on the CureZone.com "Mirena Side Effects" forum, and I saw a woman's post that said that she was finally symptom free, but it took until she was three years post removal before she could say that. I wrote her the below email because, as I am sure as you all know, it is so hard to find anyone on the Internet who sticks around long enough to ever post that they are all better. I see some say that they get up to about 90% at a year post (I am not one of those, unfortunately...but I am much better. I would say that, if I stay on my supplements, etc., I am at about 80%), and I also see posts from women who still struggle four years later. I am obviously hoping that it won't take me that long to recover, but this women's symptoms were similar to my own, and I thought that she might be able to give me some insight on what to continue to expect. I decided to post my email here because I thought that it would give you my update as well as a chance to see if any of you see any similarities with your situation. Here it is:
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Hello, ********, I go by the tag "ProudMomma" here on Curezone. I saw your most recent response that, finally at the 3-year mark, you are completely symptom free. I am currently at 14 month post removal, and although I am much better than a year ago, I still have some issues that I was I interested in seeing if you still had them at after one year post removal and if you can honestly say that they are completely gone now:
-- I notice that I still struggle more around my period (right before and right after...but actually feel pretty good during it) and right before ovulation. I get really foggy-headed, very lethargic, sometimes dizzy, and just an overall uneasy feeling. During this time, my breathing, vision, and joint inflammation also worsens. During this time, there is also an overall feeling like I'm not fully present in the room or in the conversation I'm having. I have to concentrate really hard to just be clearly "there" because I'm in such a haze. I know that sounds weird, but that is what it feels like...like I'm half there. As soon as my period starts or ovulation happens, it is like I snap back in to feeling good again.
--I also still have breathing issues that I can't seem to track down to a certain time. It is sporadic and random, but it is really bothersome. I constantly have to "huff" in a big gasp of air because I feel like I can get in enough air/oxygen when I breathe). This is not attached to any anxiety whatsoever. I just can't breathe very well on some days, and it bothers me that it doesn't seem to get any better.
--I still have days where I have zero energy...no matter what I do. Again, much worse around my period and ovulation.
--I lost a significant amount of vision in only my right eye (that was one symptom that made them concerned about a possible MS diagnosis at one point--the fact that I had quickly deteriorating vision in only one eye on top of losing the feeling in my hands). I never got officially tested because it seemed like so many of us did and got negative results. That vision has gotten to the point where I am legally blind in that eye. I'm wondering if,now that I am over a year post, if I should just give up on the thought that I will ever get that vision back. Did you ever have this symptom? If do, did it get better, and at what point?
--Lastly, I have days where my joints (and even my bones) feel like they hurt so much that I can't even get up my staircase without needing to sit down because my legs are just throbbing. This is even worse if it is on a "bad-breathing" day because, after walking up only 15 stairs, I am sitting down with my joints on fire and literally almost gasping for air. Again, these are worse during ovulation and before and immediately after my period.
I just wanted to get your response because I see everything from some women feeling so much better after one year, and some still struggling four years later. Your past experience sounds very much like mine, and I'm having a day where I just really want to hang on to something....know what to expect....and what to accept.
Again, I am so much better than a year ago. The debilitating anxiety is gone, etc., and I am so thankful for that. Many other symptoms have also resolved. These are what I have left, but considering that two years have passed since my symptoms began (and it's been over a year since it was removed), I am still holding on to the possibility that these last issues may still resolve themselves. And if not....so be it. I just want to know.
Thank you so much for taking the time to read and hopefully respond to this. It means so much.
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Well....there is the letter that I sent her. I'll let you know what (and if) I hear back.
I'm not really sure why I still try to figure this out so much. On my good days, I honestly don't think about it much--and I spend the day doing as much as I possibly can because I know that these days are fleeting and random. Since I know that tomorrow could be a rough one, I spend my good ones being as productive as possible. However, I am still nervous about the "what if" questions regarding a complete recovery. I think it is is mainly because I am a high school teacher. I am taking time off right now to be with my small children, but I will be returning in just a couple more years. Currently, on my bad days, my brain still just doesn't work right. It's so foggy and disoriented, and I find myself aimlessly walking around the grocery store because I forgot why I was there or where an item is located....and that makes no sense because it is a store that I am at every other day and I know like the back of my hand. It's frustrating as well because I know that I SHOULD know it, etc. However, on those days, I find that I am more disoriented. I have to try so much harder to make my brain clear, remember things, etc... I'm assuming that it is tied to the hormonal damage since it seems to based on my cycle when it worsens. It is mainly worrisome to me because that HAS to be a thing of the past when I return to teaching. There is no way that I can pull off being a good teacher 98% of the time, but then I have to fake it through a few days each month because I can't follow the lesson plan properly or remember what I was saying. If my vision never returns, fine....I can teach with one eye that doesn't work. But, there is no way to fake it with a room of 30 eighteen year olds when your brain starts working in slow motion. It is when I think about that possible future that I get nervous about whether or not I will get past that issue. I am in a phase of my life now, as a stay-at-home mother, where I have the opportunity to adjust my day based on when I am more symptomatic. I can choose to not attend that function or choose not to go the store that day. I won't have that opportunity to "opt out" of certain days when I am a teacher. I need to be on point each day, and it is concerning when I think about that unknown. I am hoping that, when I step back into the classroom, this whole thing will be just a bad nightmare. I need to hold on to that sometimes....so I continue to ask questions, try to find others, and continue to do everything I can to work on my own recovery. As always, what I find, I will send out to all of you. Keep those chins up. We'll get there.
*************UPDATE*************************
I received a response from the woman. Here it is. Yes, it seems like two years is a long time to wait, but I'm already at almost 15 months post removal..... Also, it means so much to FINALLY hear from someone that--even though it took a long time---she is okay now. Anyway.....here is her response:
Hi, How are you? So sorry that I have not gotten back to you sooner ,I so feel your pain. At my 14th month post removal, I still had a lot of symptoms--all the ones you described and more, but I'm happy to say that I'm pretty much back to my old self. It has been a long lonely horrible ride. If it wasnt for all you lovely ladies, I don't think I would have made it !!! All my symptoms were a lot worse before my period and around ovulation--especially around ovulation for some reason. I will give u a list of all the symptoms I had:
Dizziness
blackouts
pins and needles arms and legs
arms falling a sleep at night
eyesight was fuzzy and my eyes wouldnt adjust from light to dark properly
twitching muscles
anxiety
panic attacks
breathing issues EXACTLY how you described it
weird patches of goosebumps
muscle weakness in arms and legs
balance issues
There the ones that I can think of off the top of my head. I had all these symptoms right up until about 2 years post removal, and then things started settling down after that. I know 2 years is a long time--I don't know why it's taken so long whereas some people recover quickly. The only thing I really think helped me was diet and exercise (when I felt well enough to start exercising again). I wasn't going to take anything after the Mirena. I will never take my health for granted ever again, but I promise you that things will get better. For some reason, it just takes some of us a lot longer. It sucks, but you will get there.
Love to you, and I will be here if you want to talk.
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(Now....after I got her response, I wrote her this email....again, I will let you know what I hear back):
Dear ******,
Thank you so much for responding to me! It really means so much!
So, you can say that your vision returned back to normal as well after the two year mark? The main reason that I ask is because my right eye tanked so much (and they are both blurrier than before) that I've actually thought about seeing if I qualify for Lasix surgery. But....if I still have a chance for my vision to improve on its own, I don't want to waste the money on the surgery and then have my vision change again.
Yes, two years seems like a long time, but I'm almost at 15 months, and it just feels great to read that there is still hope that the rest of these symptoms may not be permanent.
You really have no idea how much you have given me by your response. Thank you, thank you, thank you.....
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(Again....I'll let you know if/what I hear back)--Blessings!
