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** NOTE: This was written more aimed at Mirena-related blogs, but as I think it contributed to my last IBS episode and have read of other women also experiencing GI-related impacts from it, I thought it may help to post for other IBS sufferers as well ** I had the Mirena IUD inserted in March 2017. Soon after, I began to have a full-blown IBS episode (which I'd had one in 2011), so when my hair started thinning and a multitude of other things happened, I blamed the IBS and a preexisting spine injury. However, with regards to my brain - I experienced problems there too, as well as worsening depression. I also developed ovarian cysts, obtaining multiple (costly) ultrasounds to check on their size and never once did any doctor remind me that Mirena causes them – I spent months worried I had cancer or something. Some history: In Jan. 2016 I got a concussion. I had post concussion symptoms for roughly a year (inc. headache, nausea, foggy brain, etc.). These symptoms had essentially gone away (with occasional headaches and some nausea, although that could be related to my IBS). I had the Mirena IUD inserted in March 2017 to address increased cramps and bleeding apparently associated with perimenopause. For several months I was dealing with my IBS flare-up which caused a host of other issues. However, beginning in the fall of 2017, I began to experience more headaches reminiscent of post-concussion headaches, and eventually they became almost daily. I was also experiencing problems with concentration again. I talked to my chiropractor about this (who’s had special training regarding concussions and been more helpful in managing it than any other doctors), and blamed the recurrence on extra computer work and stress. Around Dec/Jan., I noticed my ‘brain fog’ was getting worse, making concentration and communication more difficult. It became hard to switch subjects or respond quickly, as if my brain were sluggish - which was something I dealt with the first year after my concussion, but that had resolved. I started to worry I was doing something to cause my post-concussion to get worse, as the fogginess just kept getting worse. I began taking fish oil in January (2018), which helped a lot with headaches, but the fogginess has continued and even gotten worse. I also found my hair was thinning well beyond my IBS episode, which had come back under control the previous fall (for the most part). I began searching online and found Mirena was tied to hair loss and many other things, including a 'foggy brain.' I began to find more info about the cranial pressure impacts and things are starting to fall into place. I had the IUD removed last week and am hoping things will resolve soon. This has affected my work, sleep, and my social interactions as I've become anxious over communication; when you can't respond right away or form the right words immediately, it's embarrassing and frustrating so you just begin avoiding social situations. I'm self-employed and my work requires public interaction, so this is a big problem! Update: It’s been almost 2 months since I had the IUD removed. Within the first few days, my brain fog started to clear up. Big time! My head was also tingly – hopefully a good sign for hair growth. My body is now trying to readjust itself; my cycle is still out of whack but I have had a couple of periods. My hormones are all over the place and I noticed starting about 2 weeks ago (so about 5-6 weeks after the IUD was removed), my depression got much worse, and I had about a week-long IBS flareup; still worse than usual but slightly improved now. I have wondered if I’m currently experiencing the “Mirena Crash”, which I have read can start within weeks or months from removal when your body is temporarily without enough hormones while your natural system is trying to kick back into gear). My hair has continued to thin, but I’m not giving up hope. I have learned more about hair cycles, and looking back, I see that my hair started to fall out more after I had the IUD inserted (but I blamed my IBS flare-up as I can’t get enough nutrition when it happens so my hair thins). Then about 8 months after insertion, my hair almost stopped falling out – just a few strands when I brushed. However what was left kept thinning, to where each strand is smaller and my hair is thin and brittle (which note: it’s down to my lower back and it makes me sick at the idea I may have to cut it off if this doesn’t improve). I’ve started taking Viviscal and using Wild Hair Growth oil with fingers crossed. As my hair started to fall out again, it appears to be about the “normal” amount that sheds each day. There are small bulbs (aka “clubs”) on the ends of what is falling out, which according to what I’ve read, may be “good” news – when our hair follicles start working again, new hair growth will push out old hair. In the meantime, my scalp is showing more, but I’m hoping things are moving in the right direction. I read on other posts that it can get worse before it gets better. Looking back, I realize I was happier with life and more comfortable with myself before I got the IUD (and depression was better controlled). I had started dating (because I had been feeling better over the previous couple of years…hmm, while I was not on any birth control…) and met someone right around the time I had it inserted. He was a good guy who was very understanding about my 2-month long heavy period and major cramping after insertion, as well as when my IBS flare-up came on (which I now suspect the IUD contributed to bringing it on). However, my depression got worse, mood swings galore, plus the brain fog started and along with some other ‘confidence’ issues I think most people with chronic medical conditions have, I was not feeling like the greatest catch, so I stayed in that relationship even though it became clear he wasn’t the one. Looking back, it was like another woman was in that relationship (which lasted for about 8 months). I had given up a lot of who I was and accepted far too much of who he was simply because someone seemed to like me despite all of my medical crap. I also remember questioning how I felt because I just didn’t seem excited enough about him, but yet I stayed in the relationship (I started therapy right around the time we broke up, as I’d been realizing I needed to figure out stress management along with why I’d become a different person with low self esteem). So, I’m posting this because other posts have been so helpful to me with regards to figuring this all out, and realizing I’m not alone. I know that the Mirena IUD seems to work for a lot of women, but Bayer and our doctors need to warn us about the side effects, and because a lot of us don’t realize some of these medical problems are tied to the Mirena, they should check in with Mirena users periodically. Maybe a survey every three months to ask us about symptoms; at least that might help women clue in when things are going bad and realize it could be the Mirena. Also, patients who have had concussions should be warned, just as patients with depression/mental health issues and sensitivity to past hormones should be warned (I had told my doctors that the Depo shot years ago had really messed me up…yet I learned too late that Mirena is basically providing the same synthetic hormone) – I even asked about it specifically and was told it was such a “low dose” and side effects were minimal. BS!). I have read that Bayer previously got in trouble for not clearly disclosing all of the side effects, and that they are revealed more in Canada than in US pamphlets (I checked recently and it does appear Canada’s version provides a bit more honesty). But doctors need to take this seriously too. I guess I needed to do more research before I had the IUD inserted, but I trusted the doctor that said it would be fine and at most, warned me about things like the IUD moving, but not the other stuff (and I admit I was perhaps overly anxious for help with reducing cramps). I should know better, as I’ve had to learn how to manage my chronic medical conditions mostly on my own. Oh, and yes, my sex drive slowly dwindled over the first six months after insertion and pretty much died a quiet death by fall. It’s returned in ‘spurts’ since removal. Sorry for the long post, but I hope it helps other women avoid what I have been going through, or even recognize what may be happening sooner - before it gets this bad. And I was astonished at how few results came up when I searched for “Mirena” and “concussion”, even though their information does ‘admit’ to causing increased intracranial pressure (again, why wouldn’t a doctor warn a patient with post-concussion issues?!) I’ve also seen some information suggesting the device, which apparently contains silicone, may be causing silicone poisoning as a lot of the symptoms are the same. Whether it’s that and/or due to hormonal impacts and cranial pressure, I have no idea, but figure it’s worth mentioning. I’ll try to post an update in a few months – fingers crossed things are much better!

Hi everyone, I'm really grateful to have found this community, and hope I can be supportive to everyone else struggling in here. I've had a long road with IBS-C (as have many folks here it seems) and my boyfriend finally suggested I look for a support group, as so much of the suffering with this condition comes from feeling like you're the ONLY one who can't eat normal food, and live a normal life among your friends and family. I've moved back and forth between the U.S. and the Middle East since college, and with one bout of food poisoning and another, picked up an IBS-C problem that I just can't seem to heal. After two colonoscopies, upper endoscopies, and a pill camera, my gastroenterologist in the U.S. finally caught an image of several large worms living in my Ileum in 2018. Unfortunately they misdiagnosed the type of parasite, and it took another year or so to finally get treated for hookworm, which seemed to eliminate my really severe symptoms (constant exhaustion, exercise intolerance, severe stomach pain, etc). Now I'm just dealing with the post-infectious IBS and am happy to say that at least linzesse has helped (i way over-did it on the sennosides for years, so stimulant laxatives are an absolute non-starter at this point). The thing I think is hard, and I'd love to know if other people struggle with this, is that I also deal with depression/anxiety and the digestive problems have launched a really vicious cycle with those. In the years that I had to stop exercising because of the hookworm, I got really depressed (exercise had been a really important part of mental health maintenance). Now I'm doing better, but on days when I'm really bloated or constipated, it can be really hard to get the exercise in. And of course, you don't feel like going out and socializing when your stomach is acting up, and that can also be isolating. Would really like to hear how others have coped with the back and forth between mental health issues and their gut. I'm trying my best with the medications, yoga, meditation, running whenever I can, and diet, but sometimes it feels like nothing you do is ever enough to prevent a flare up. Just feeling pretty discouraged, but hopeful about joining this support group. Thank you for listening and take care!

Hi everyone, I’ve struggled with IBS every since I was a little girl but lately it has gotten worse than ever before. That is why I am so glad to have found this support group. Here is my story... (I know it’s long I’m so sorry I really did try to keep it short). I’m a 19 year old female and I have struggled with IBS-C for as long as I can remember. My mom has even told me that when I was a baby she would constantly take me to the doctors because I would rarely ever have normal or regular bowel movements. Also ever since I can remember, I would always complain to my parents about my stomach hurting and not being able to go to the bathroom. I would have really bad cramps, bloating, nausea, etc. I actually went to the ER twice for this issue (once when I wad 4 and again when I was 6). When I was 6, they did an XR (I’m pretty sure but honestly I can’t remember that well) and basically told me that my stomach was full of stool and it had built up. They gave me some medicine while I was there to clear it all out and then told me to take miralax daily. I vaguely remember taking miralax everyday for the next couple of years until I was about 12 or 13 (at least I think) and I’m pretty sure this helped me decently because I don’t remember complaining as much about my stomach hurting. However, I also think I just “got used to it” and basically toughed it out, but I do remember that I still was only able to go to the bathroom about two times a week (but that was still better than nothing). Once high school started, I’m pretty sure I stopped taking miralax and tried to just use home remedies for my stomach pain and IBS C. I would eat activia and Raisin Bran every morning and this seemed to help for the most part. I was still only going to the bathroom about 2 or maybe sometimes 3 times a week. Again, I think at this point I was “just used to the pain”. I don’t remember the pains being too severe or occurring on a daily basis but I do want to say that during the first two or three years of high school I was staying home or leaving school early about once or sometimes twice a month because of how much my stomach hurt. But for the most part, it was pretty manageable overall. Senior year did get a little worse and I missed more days of school and I eventually did go to the ER again because the pain I had experienced that day at school was unbearable and my mom was tired of me calling her to pick me up so she took me to the ER. They literally told me nothing except for that my blood work showed I was anemic. After this, I talked with my doctor and she told me to try low FODMAP, try yoga and meditation to de-stress and to try miralax again. I did all of these but the FODMAP didn’t really seem to make a difference and neither did miralax even though I did it for about a month or two. I Eventually just went on with my life. At this point, I was about to start college on a full-ride scholarship and the program I was in required two camping trips before our freshman year. I was terrified because the trips were almost a week long each and I was scared I wouldn’t be able to go to the bathroom. However, I made sure to drink a lot of water and take some fiber one bars and luckily I wad able to go at least once or twice during the trips. I thought I had it all under control. I then started living on campus because my scholarship program required it and it was a little hard to adjust to this change but once I was a little more comfortable I was able to go about 2 or 3 times a week. Everything was fine until coronavirus hit and everything changed. I’m convinced this was due to all the change and stress. I started having REALLY BAD IBS-D and if everything was still in person there’s no way I would have been able to survive. My job closed so I wasn’t working and classes went online so I was able to stay home and not worry about having to go to the bathroom with diarrhea somewhere else. However, the rare times I would be out, I would have to go home instantly because my stomach hurt and I could just feel the diarrhea coming. It would happen every morning and the Begin to calm down through out the day or it would also happen right after eating. I cried about this all the time because I literally could not go anywhere or do anything without these bouts of diarrhea affecting my day to day life. Occasionally, I would be able to have a good stool but then afterwards I’d be constipated for about a couple days and then immediately followed by diarrhea daily multiply times a day. This cycle continued. I took pepto bismol every time I was leaving my house to ensure I wouldn’t have diarrhea (I know this is probably so bad). Eventually in June/early July I tried “Digestive Advantage Intensive Bowel Support Capsules“. I took these for about a month but it literally made no difference what so ever. After that, in mid July, I tried Metamucil. Immediately this made everything so much better. I started having good normal stools once every morning and I didn’t have cramps, bloating, nausea etc. I even went on another camping trip for about 5 days and took this while being there and it worked perfect. I still take this to this day. However, I did notice that during the first two months there were about 2 days out of the month where I would have a little diarrhea. I took pepto bismol though and it was usually fine. But ever since September, it has just gotten worse. I will have good normal stools for a day or two, followed by IBS C, followed by IBS D and then that cycle just continues. I have talked to my doctor again and she referred me to a gastroenterologist so I’m just waiting for that appointment in the next two weeks. I just want to get some feedback on best methods or medicines to take for IBS D mostly because I feel like I can pretty much manage the constipations but it’s just the diarrhea that interferes with my day to day life and causes me extreme stress, anxiety, and depression. I’ve also been working and going to school again since august and classes are still online so that’s not an issue but this problem DEFINITELY interferes with work and other social activities outside of my home or dorm. The minute I go anywhere I just worry “what If I have diarrhea” and it’s gotten to the point where I just cry every morning I wake up with diarrhea because I feel so hopeless and like nothing will ever control this. I really thought Metamucil would do the trick because of how much it helped the first month or two but it rarely seems to help anymore. If you have any recommendations for home remedies or medicines or specific food please let me know thank you so much. (I also drink chamomile tea every night which I heard can help and also it helps me sleep).

At a recent American College of Gastroenterology conference, Lin Chang MD, UCLA shared that Adverse Childhood Events (ACE) increase risk of developing IBS. 76% of IBS patients have >= 1 Adverse Childhood Event(s) and thus have a 2-fold increase in developing IBS.

Hi All, I'm new to this group, having just left another one that scared the hell out of me. I do have mental health issues, which I'm sure contribute to my daily struggles with IBS-C, and I do have a story, but will let you know for now I suffer from debilitating anxiety, equally debilitating IBS-C, have very little medical support, am on Constella (or Linzess, as it's know in the US), don't use stimulate laxatives, and am wondering what your views of long-term use of Constella happen to be? It's not classified as a laxative, and has no stimulant properties, and I've been on it for two years as max dose. Can anyone provide their own experiences with Constella, along with their idea about its safety for long-term use, and perhaps offer any suggestions about how I may manage IBS-C, which I've had for years and has destroyed my life (along with many other things -- I'll provide a bio later, but since the other group was not very supportive and kept telling me Constella/Linzess is a laxative, will fail, and I'd better be prepared to suffer ever more unless I did this, this, and that, I'm tentative about share too much. I am a supportive person, very sensitive, and incredibly empathetic. Any replies that are kind and not combative or dismissive would be incredible. Thank you, Seroquelled

What Comes First — the Psychological Disorder or the Gastrointestinal Disorder? 2358 GI Tract - Kristine Novak More patients receive a diagnosis of a mood or anxiety disorder before diagnosis of a functional gastrointestinal disorder (FGID), researchers report in the July issue of Clinical Gastroenterology and Hepatology. The findings indicate opportunities for prevention and support the role of adverse socioeconomic factors in development of FGIDs in patients with psychological disorders. Functional gut conditions are not associated with any identifiable pathology, but have been associated with anxiety and depression. Understanding the interactions between brain and gastrointestinal disorders requires analysis of the order of disease onset. >> Full article © 2017 iMagPress. All Rights Reserved.