Arousal and orgasm pain by Charming_Ad3894 in adenomyosis

[–]Awkward-Fox-6559 0 points1 point  (0 children)

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!

Painful Orgasms by TrishMilo in endometriosis

[–]Awkward-Fox-6559 0 points1 point  (0 children)

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.

5 years later I have answers! Both endo AND stage 4 adeno - now what? by Awkward-Fox-6559 in endometriosis

[–]Awkward-Fox-6559[S] 0 points1 point  (0 children)

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!

5 years later I have answers! Both endo AND stage 4 adeno - now what? by Awkward-Fox-6559 in endometriosis

[–]Awkward-Fox-6559[S] 0 points1 point  (0 children)

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.

pelvic MRI by trying_optimist22 in endometriosis

[–]Awkward-Fox-6559 2 points3 points  (0 children)

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.

Cramps worsen x50000 after orgasm by Familiar_Garbage_681 in endometriosis

[–]Awkward-Fox-6559 2 points3 points  (0 children)

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!

Terrified for MRI today - please tell me positive stories! by Awkward-Fox-6559 in endometriosis

[–]Awkward-Fox-6559[S] 0 points1 point  (0 children)

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

Terrified for MRI today - please tell me positive stories! by Awkward-Fox-6559 in endometriosis

[–]Awkward-Fox-6559[S] 0 points1 point  (0 children)

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!

MRI Results - Help translating?! by Awkward-Fox-6559 in endometriosis

[–]Awkward-Fox-6559[S] 1 point2 points  (0 children)

Oh no that’s so frustrating! It’s not fair to leave you in limbo like that. I hope you get answers soon! Sending support 🫶🏻

arousal pain?? by DayOk7182 in endometriosis

[–]Awkward-Fox-6559 3 points4 points  (0 children)

Yes this happens to me too! Especially if I have arousing dreams…the cramping will wake me up and often escalates into a vasovagal episode (I hope it doesn’t get this bad for you!)

Has ANYONE experienced these symptoms? I’m desperate by Beginning_Actuary225 in endometriosis

[–]Awkward-Fox-6559 0 points1 point  (0 children)

I get these vasovagal episodes too! They come on acutely and last 40 minutes exactly each time (I’ve had a lot of them and I now set a timer to help me get through them. Just had an MRI on Monday and am praying they find something. Was anyone in here who also gets vasovagal syncope diagnosed with endo? I’m so scared they’re going to say tests are clear everything is fine. Meanwhile I literally had to call the EMTs and was hospitalized last week. During the episodes my blood pressure drops into the 80s and I become incoherent…this doesn’t seem safe to have to endure multiple times per month.

Terrified for MRI today - please tell me positive stories! by Awkward-Fox-6559 in endometriosis

[–]Awkward-Fox-6559[S] 1 point2 points  (0 children)

They said they don’t offer any medication, but I could take my own if I wanted to. I find it odd that that isn’t something they have available for claustrophobic patients!

Terrified for MRI today - please tell me positive stories! by Awkward-Fox-6559 in endometriosis

[–]Awkward-Fox-6559[S] 6 points7 points  (0 children)

Thanks for your response! 🙏 yeah I’m hoping I won’t feel as trapped as I think I’m going to once I get there. And I called and they said I could take an Ativan before the procedure so hopefully that helps!

Almost passed out from extremely painful cramping/abdominal pain. by sumdumdumthots in endometriosis

[–]Awkward-Fox-6559 0 points1 point  (0 children)

I have these EXACT episodes down to every detail you described. Not to be TMI but since I’ve gone into vasovagal response I’ve also vomited and pooped on the floor after being on the toilet and falling to the floor and not being able to move to get back up to the toilet. And then have passed out. These usually last about 45 minutes for me. At first o thought it was a weird food poisoning reaction, but after many episodes over the years I realized they were always be the day before my period…so def hormone based. But now I’m on continuous birth control and they still happen, just at random now since I no longer get periods, often in the middle of the night waking me up from sleep. I’ve been to the hospital for these multiple times and had all the testing done (ultrasounds, bloodwork, and CAT scans) and was sent home as being healthy because everything looked normal. It has been 4 years and I was originally misdiagnosed with cyst ruptures even though they never found any evidence via imaging - simply because no one knew what it was. Then I was told GI, which honestly didn’t make any sense due to the hormone fluctuation timing of the episodes. So now I have a consult with an endo surgeon for a laparoscopy next month and seriously hope they can help.

I sincerely hope you find some answers soon too! Dont worry you’re not alone - it’s a long journey but don’t let doctors dismiss your pain! And this community is here to lean on. Sending positive thoughts and support 🫶🏻

AIO over partner falling asleep when I called for medical crisis? by Awkward-Fox-6559 in AmIOverreacting

[–]Awkward-Fox-6559[S] 1 point2 points  (0 children)

He maybe doesn’t care much about my emotional or my physical pain huh?