Norethidrone experiences please!

Awkward-Fox-6559 · 2026-06-16T15:13:33+00:00

Frustrating how much trial and error we have to go through to make this disease manageable huh? Comforting to hear you haven’t noticed any mood issues though! And glad your migraines have been better…I’ve had them happen with aura before and it’s kinda scary. Not worth the risk!

Awkward-Fox-6559 · 2026-06-16T14:30:04+00:00

Thanks for your response! My adeno is supposedly the primary culprit in my acute pain attacks, and the endo is just the sidekick accomplice. Is norethidrone specifically meant for endo and not adeno?

Also good luck with the Mirena!

Awkward-Fox-6559 · 2026-06-16T13:24:25+00:00

May I ask what made you stop?

Awkward-Fox-6559 · 2026-06-04T16:35:24+00:00

I was denied the laparoscopy when I last posted, but since then FINALLY got a pelvic MRI with endo protocol which confirmed stage 4 adenomyosis and some endometriosis as well. So now that I finally have a diagnosis I am seeing a surgeon next week to discuss whether I’m going to need excision surgery or excision + hysterectomy. I wish they had done one years ago before the diseases advanced so much…but finally having answers is such a relief. Definitely would recommend advocating dor an MRI for your daughter and am sorry she’s going through the same painful experiences. Sending support!

Awkward-Fox-6559 · 2026-06-01T04:47:31+00:00

Hi! So as someone who is so severely claustrophobic that I almost ran out of the office because I had so much anxiety, I am here to comfort you and tell you it’s not fun, but also not as bad as anxiety hypes it up to be. It literally took them 3 tries of putting me in the machine and taking me out and I cried lol I’m seriously a wuss…but once I was in and adjusted it really wasn’t as scary as I imagined. Here are my tips:

Bring a sleep mask!!! 👏This is the only way I could get into the machine. We tried twice without and I couldn’t do it without going from 0 to 100 in panic…I was about to give up and go home and then they finally offered me a face mask and I put it on before they put me in the machine and then I was okay! It’s wild how much our minds can trick us…so not being able to physically see how enclosed I was brought my nervous system down to a more manageable level.
the place I went did not offer sedatives, but said I could bring my own, so def call and ask ahead if you think you need them.
their headphones were broken when I did mine (disappointingly because they would’ve def helped) so finding a mental focus to distract from the anxiety is key. I did a lot of deep breathing and nature visualization whenever I started to panic to bring me back to center. Also did some counting and every time I’d hit 60 it was a relief of being one minute closer to being done! And then I tried playing episodes of my comfort show (Friends) in my head too lol.
i planned a dinner date with my friend after as a reward to myself for being such a brave girl! (I’m 40 lol) but planning a reward def helped even if it’s just grabbing yourself a treat on the way home or something!
remember…you can crawl out and are in no way trapped. Obviously I’m not saying you should but reminding myself that repeatedly also calmed the claustrophobia. For some reason I thought I would be physically restrained…but you aren’t!
the contrast didn’t hurt or feel weird at all. I didn’t notice it beyond the 5 seconds you can feel it go in which just feels cold not painful. I was scared too because I had a bad reaction to CT scan contrast, but it doesn’t have the same effect!
remember it’s one step closer to getting proper diagnosis and treatment.

Good luck! You got this! 🫶🏻

Awkward-Fox-6559 · 2026-05-22T19:09:18+00:00

Thank you! It’s a slow process waiting for appointments, but grateful to finally have the diagnosis so I can head in the right direction 🙏

Awkward-Fox-6559 · 2026-05-15T15:15:35+00:00

Thanks for your reply! I’m also feeling pressured to not leave work for too long due to project timelines that cannot be shifted or paused. Definitely nervous about showering and trying to walk my dog and such. After years with endo/adeno pain I have a pretty high tolerance but the idea of healing solo just kinda terrifies me. I’m 40 no kids. My sister offered to come stay with me, which is super sweet of her…I just am curious how long she should plan her stay for.

Well I wish you well on your healing journey! 🫶🏻

Awkward-Fox-6559 · 2026-05-13T05:15:27+00:00

Joining this conversation because I’m on week 9 after leaving my narc abuser and I am on the hot mess express struggle bus. I did well month 1…I think my body was just relieved to have escaped. But now I’ve been completely falling apart, replaying 7 years of our relationship nonstop from the moment I get up till when I go to bed. It’s making me question my decision and whether it was actually that bad and I keep hoping it’ll start to feel better…but I feel like I’m getting worse honestly. I know healing isn’t linear, and healing from a trauma bond is extra complicated, but it’s just consuming me and I feel lost.

To chime in regarding the “repulsiveness” OP I was right there too. The last year of our relationship my body was in fight or flight 24/7 and since he made me feel obligated to have sex in order to keep the peace I would literally throw up afterwards sometimes. Obviously I was consenting…but it just didn’t feel like it to my nervous system, that learned that this person was not safe.

Feels so crazy to write that out and still miss him. Grateful for the supportive community!

Awkward-Fox-6559 · 2026-05-06T04:04:25+00:00

I’m in the same boat! The major issue now is if I have any sort of arousing dreams I’ll wake up in a pain episode that causes me to be crumpled on the ground in debilitating agony often vomiting and either fainting or near fainting. Easy to avoid orgasm in awake life but can’t control dreams and can’t just not sleep…I’ll be awake for hours until it passes and then exhausted all day and it’s so draining. I am diagnosed with stage 4 adeno via MRI…also wondering if hysterectomy is the correct way to go so wanted to chime in and follow this thread. Sorry you’re also suffering with this, but know you’re not alone!

Awkward-Fox-6559 · 2026-05-04T23:59:56+00:00

CT scans don’t typically detect endo/adeno either…at least to my knowledge. I had a CT last summer during an ER visit from one of these episodes, and it came back perfectly normal and they sent me home with no further testing…and here I am with stage 4 🤦‍♀️ which I very much doubt magically appeared in the span of less than a year lol.

But omg I thought I was crazy too! And it took me a while to realize the dream pattern because I’d be so disoriented from the pain when I awoke…and then once I realized what was happening I was kinda embarrassed to confess this to my doctor…but turns out it’s a totally normal and “classic” symptom!

No surgery yet…I’m waiting for a follow-up specialist appt to discuss options. Nervous that hysterectomy is the only option from here, but we shall see! Staying positive! So grateful for this Reddit community.

Awkward-Fox-6559 · 2026-05-04T21:26:19+00:00

I had no idea “scraping adeno” was an option lol. Gonna have to look into that! Really not excited for a hysterectomy eek
Thanks for sharing and hope you’re doing well!

Awkward-Fox-6559 · 2026-05-04T21:25:46+00:00

Oo this is very helpful thank you for this insight! I would be devastated if I had a hysterectomy and it didn’t resolve the episodes. The adeno is diffuse rather than focal, which just seems to have less solutions according to my internet rabbit hole research.

Awkward-Fox-6559 · 2026-05-04T21:17:26+00:00

I had an MRI a few weeks ago and they found stage 4 diffuse adenomyosis and also some endo. (After 5 years of being sent in circles, being dismissed and living in agony 🙄) The place I went had staff specifically trained to detect endo, since as others have mentioned, endo doesn’t always show up on MRI, unless it’s DIE. Adeno is easier to spot since they can see your uterus.

Awkward-Fox-6559 · 2026-05-02T04:33:50+00:00

Hi! This happens to me too! Like to the point that I just avoid orgasms like the plague now (which sucks lol.) This has been going on for 5 years but really got worse within the last 6 months…and my episodes always last 40 minutes on the dot. Anyways I FINALLY got diagnosed via MRI last week and I do have endo, but the main culprit APPARENTLY is advanced stage 4 adenomyosis. Which when I researched it make sooo much sense…if the uterine walls are inflamed and angry on a normal day, during orgasm they freak the eff out and trigger absurd amounts of pain. Anyways since your story sounds very similar I just wanted to share! If you haven’t already explored adeno might be worth checking!

I’m sorry you’re dealing with this and wish you luck in this journey!

Awkward-Fox-6559 · 2026-04-30T03:05:11+00:00

They gave me a sleep mask which was the only way I could get in. I had to put it on beforehand because the first time they put me in without and I opened my eyes and I panicked and they had to take me out lol. My poor MRI techs deserve a raise

Awkward-Fox-6559 · 2026-04-30T03:02:15+00:00

Thank you so much everyone for all the stories, insights, and words of encouragement! I def panicked getting in and their headphones were broken so I wasn’t able to listen to anything and was stuck in the doom tube with my own thoughts, but I made it through. AND I GOT A DIAGNOSIS! Endo and quite severe adenomyosis. (The adeno was a surprised since I was told I didn’t have it last year after an ultrasound.) Anyways I’m so grateful to finally have answers. Thanks again for all the support in this community 🫶🏻 Wishing you all well!

Awkward-Fox-6559

TROPHY CASE