u/Tryingmybest1456

I have been in a medical nightmare lately. I feel like I have been pulled in all directions besides answers. Today I had an appointment with a new cardiologist due to frequent fainting and I (and 2 of my other doctors) had concern for POTS. I do not have POTS - and he brought up Addisons disease. I have never heard of it until today, two of my previous bloodwork markers alluded to it so now I am getting bloodwork done & have a heart monitor. After reading, this very well may be what I have been dealing with.

What were your first symptoms with this disease? What’s your day to day like?

I wanted to share my experience on Norethindrone as I may be a rarity, but this would’ve made me feel a little better than the stories I heard when I first started it.

I was prescribed 5mg of Norethindrone. I started with 2.5 mg for a week, then bumped up. I have not had substantial weight gain, no negative emotional side effects (I will say I have a very apathetic stance to some things lately, but it has been positive for me…I’m just not as bothered as I previously could’ve been).

There was a month where I was eating a substantial amount of sweets and craving sugar (I typically have zero interest in sweets). My weight has remained consistent. I have not had associated nausea, vomiting, or insomnia. I have had some weird, realistic dreams but they are not bothering me.

I have had FAR less pain flares than before. For reference, I am constantly cramping - I just don’t notice it until it’s bad. I’ve been able to have intercourse without excruciating pain. I had two cysts burst at the start of taking it (taking the trash out????) and that’s been it.

The medication itself does make you more sensitive to heat. To be clear, I had previous symptoms alerting me to potential POTS (hot yoga made me faint and throw up). About a month in to taking Norethindrone, I started fainting in heat. I live in Arizona so that’s not good and has impacted me. They dropped me down to 2.5 mg and I am able to catch the fainting signs before it happens and get to a AC. I do notice that I get hotter WAY quicker but the signs are always noticeable. I was officially diagnosed with POTS a few weeks ago, and I am just grateful to have more answers - POTS and endo coincide heavily so I am not bothered by that diagnosis (though a move is in my future now, which I am also okay with).

I’ve been desperate for even minimal pain relief, and I am glad I tried Norethindrone despite any potential negatives that came from it. I know how isolating and excruciating this disease is, and I know what it’s like to be desperate for relief. I am glad that I got some. And the negatives for me have not outweighed the positives.

Sending love to those who are researching for hope. Hope feels really minimal in this space, and I will grab onto any ounce of relief I can get.

Hi! Has anyone experienced excruciating intermittent shoulder pain?

This is a symptom that I am pretty sure is tied to endo. I get it fluctuating each month. It’s like a sharp pain and weakness in the joint when I move, and I can’t lay on my side.

I have stage 4 DIE and worried where it’s moved.

I am just curious if anyone else has experienced this, and if you found anything that helped.

Hi all - I started Norethindrone a week ago. I know experiences on this medication are highly mixed.

Background: I have 7-8 uterine cysts viewed on imaging and DIE viewed on imaging as well. I did have surgery and am prepping for another in the next few months. (My original surgeon was not specialized and failed to take samples - I’m now going to a specialized office).

I had a cyst rupture the other night which is the most painful possible experience. I have also noticed an increase in severity of cramps, but I am not sure if that’s related to medication or the cyst rupture.

I am wondering if anyone has had issues with cyst ruptures on this medication? Not sure the interaction.

Also looking for any insight into experiences with this medication and DIE or cysts in general.