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Treatment advice

I was hoping for some advice. I posted on here once before several months back while recovering from what I now think must have been an illness related to endometriosis. I went to a doctor a few weeks ago who thinks it is likely that I have it. When I was ill last summer, I started taking 0.35 MG of Norethindrone. At the time, they prescribed it on the theory that I was just getting ovarian cysts. Now, this new doctor wants me to start taking 5 MG of Norethindrone. I am a little worried about upping the dose even though I’ve read that higher doses tend to provide more symptom relief. Getting into the details of last summer‘s incident here would make this post super long, but I was experiencing severe pain, elevated heart rate, chills and shaking, and strange episodes of dehydration among other odd symptoms. When I first started the progesterone, I had a major episode of bleeding that made the symptoms even more intense. It took several months to recover, and even now I still get a fair amount of pain and episodes of fast heart rate and things like that though not nearly as severe as over the summer. I would like the episodes to be reduced if possible, but I am worried that taking a higher dose of progesterone will cause another bleeding episode like what happened when I first started the pill which would probably lead to a major setback in the short-term at least. I was wondering if anyone has had any major flare-ups after switching from a lower dose of progesterone to a higher dose.

  1. Since no one has hopped on your question, I'm going to give it a shot. While I don't have any experience with Norethindrone or progesterone, I can give you some other places to try in terms of getting some answers.

    First, if you're on Twitter, you can try tweeting your question with the hashtag #NEISvoid (No End in Sight Void). It's a group of chronically ill and disabled people and I've found they are super helpful.

    Second, if you don't already know about the Nancy's Nook Facebook group, and you're on Facebook, give it a try. It has a search function where you could search for Norethindrone or progesterone and you'll find a lot of information. I hope this helps! ~Katrina, Advocate

    1. Katrina Martin, Thank you so much. I will definitely check out those resources. I’ve just always been really hesitant when it comes to birth control and now that I’m having all these issues, I’m having a lot of anxiety at the idea of switching things up. Before last summer, I honestly had no idea someone could get so sick as a result of endometriosis and I don’t want to do anything that could make anything that severe happen again.

      1. I completely understand. I have not had good reactions to birth control even though all of my doctors have wanted me to try it. It can be such a rigamarole to try new meds and then deal with the side effects on top of the pain and illness we are already experiencing. I hope you find some good answers and suggestions. ~Katrina, Advocate

      2. I haven't had experience with either but have switched up my birth control numerous times and I totally understand the nerves and being hesitant. I was too. And each time, definitely did not have a good experience with the switch. Birth control and hormones are definitely tricky. I am proud of you for being cautious though and trying to do what you can to keep from getting so sick again <3 Katrina definitely left some great resources. Check them out and see what you find. And know, we are here for you always. Keep us posted on how everything is going. Hoping you do get some helpful answers you are looking for. -Kimberli (team member)

    2. I have had success taking norethendrone. I currently take 10mg of norethendrone (Aygestin) daily to control my endo symptoms. I started taking 5mg back in college after my diagnostic laparoscopy. I took it for about 6 years (until my husband and I were ready for kids) and it relieved my symptoms. I was having severe pain, nausea, and very heavy bleeding before I started taking it. I used an IUD between my children and again after my youngest was born. I started seeing an increase in my endo symptoms again, especially the heavy bleeding, so I asked to be put back on norethendrone. Because I was starting to have migraines with my cycle, my doctor increased the dose to 10mg. I no longer have the migraines or any bleeding at all. I occasionally can feel which side I am ovulating on, but it is only a slight discomfort- not the debilitating pain I was having before. I have been taking my current dose for about 7 years now. I haven’t noticed any real side effects from the norethendrone other than vaginal dryness. I am hoping it will continue to work until I get to menopause. I hope this is helpful.

      1. thank you for sharing your experience. The doctor recommended 10 mg but I just felt like that was too big of a jump from what I was already taking and opted for five instead. I honestly think that in the long run, it would be helpful given that even the small dose has caused some reduction in symptoms. I’m more concerned that the switch will make things worse before they get better just like the way it happened when I started the initial dose. I figure if I could make it through the first month, I would probably be OK, but I am super nervous to even try because the flareup I had over the summer was so bad that I was having extreme anxiety for months afterwards in addition to physical symptoms. It’s been almost a year now and I honestly just now feel like I’m starting to get back up on my feet. When it happened, I had to defer taking the bar exam and my life just really fell apart. The fact that it has been helpful for you does make me feel a little bit less nervous about the idea of trying it at least. I feel like it will probably definitely take me a few more weeks to really convince myself though.

      2. you take it when and if you are ready dear warrior <3 It can take a lot of back & forth before we decide what is indeed right for us to try. It truly is scary not knowing how we will react to certain treatments/medicines. And what symptoms will worsen or get better. Hoping if you do decide to try it, you do find relief <3 -Kimberli (team member)

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