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Recently diagnosed, now on Mirena, in extreme pain for 2 weeks

Hi! I am new to the diagnosis of having endometriosis, though I am 33 years old (only took 20 years!). I was on birth control which stopped my menstrual cycle for several years, but then when that made me unwell, I stopped a year and a half ago. Since then I have an "episode" of 10/10 level pain every month, sometimes twice a month (with a span of about 2-3 days in between episodes. I had an IUD administered (Mirena) on December 3rd, and have been in pretty bad shape since. I have been in the hospital twice, but no ultrasound, no laproscopy, no anything really to help me understand if I'm doing ok or if there's something wrong. I imagine I'm probably ok, but it's very scary to keep going through this for so long. I don't want to keep going to the hospital. Is this an experience other ladies here have shared? Does it sound familiar, and were you ok? Is there anything I should think about doing to take the next step, or is it normal just to have to wait this out? I had my first full-blown panic attack the other day during an episode, and it felt like I was going to choke to death. I'm scared, to be honest, it's a very vulnerable feeling to be like this. Any support/advice would be wonderful.

  1. Hey, good to hear from you, sorry I hadn't checked this in a while. Any progress for yourself on the treatment front? I am still waiting for a specialist, but I've got my first appointment in April. I have been extremely unwell and am hoping they will send me in for diagnostic surgery. Has your pain gotten any better? I am better in some ways, but still not able to walk far or do much without the pain getting me again. Not able to work. I'm trying to minimize painkillers to control the damage to my stomach lining. I'm waiting and hoping to get my life back. Glad in a way to hear that I'm not the only one that has had such bad pain, but sorry you had a tough time too. I think perhaps that's something that happens when the hormonal balance is changed?? Would love to hear how you're doing now.

    1. Hi ! Wanted to check in and see how you were doing/feeling!
      I know my sister had the Mirena and just reacted really badly to it that she needed it removed.

      There can be so many reasons though as to why you are feeling pain. So it is hard to tell you what exactly it is. I always tell anyone who is suffering pain though, pain is not normal. I would definitely recommend talking with your doctor about this. And if they continue to not help you figure it out, I would try reaching out to an endometriosis specialist! If you go on Facebook, there is a group called Nancy's Nook and she lists endo specialists! You may be able to find one in your area/surrounding area.

      I know this reaction and this pain is scary. Been in that boat many times. Some things you can try until you can get to or speak with a doctor are, diet change. This has helped tremendously with pain and symptoms. Monitor what you eat and when you feel the most pain. I have also added CBD into my life. I find a TENS unit is so helpful with pain, a weighted blanket and light stretching/walking. Are all helpful things.

      Hoping since your comment you are doing well and have found the support and relief you were looking for. Here if you need anything. -Kimberli (Team Member)

      1. @anonymous, just wanted to check in and see how you were doing and if your doctor was able to give you some answers! I get UTI's frequently for no real rhyme or reason. Sometimes I did notice a lot of my UTI's were occurring whenever I would take a bath or if I used body wash. So I no longer can take baths and I have to use non scented bar soap when I shower! It has been helpful for sure. Sometimes it is the smallest things we wouldn't even think of. Hopefully you are doing well and your doctor was able to help you! Hugs and good thoughts! -Kimberli (team member)

        1. Hey all, I recently decided to share about my journey with endometriosis and have implemented natural ways that has help aid my symptoms. I don't really know anyone who is going through the same thing as me, so sites like this is extremely useful, thank you all for your support.

          I Posted a video of Endometrioses breakdown, how i was misdiagnosed, Surgeries and how i recovereed ans some useful natural tips ive implemented that has helped my symptoms alot, and nutritional advice in how to balance your hormones.

          I hope it may be of use to someone here? I have also given a free pdf download in the description with more of a in depth breakdown of Endometriosis.

          https://youtu.be/lAXEaIUn6Lc

          Love Tia xxx

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