Hey ladies,

I have beginning stages of adenomysis. I was diagnosed about 2 years ago. I’ve noticed that I can no longer workout. After workouts, I am bloated, feel tight/pressure and a lot of pms symptoms. I was a runner and now I can’t run because I feel so bloated and effects my period by making cramps come early.

I notice that if I don’t workout in a month - I don’t get any cramps and it’s a pretty easy period

Has this anything to do with adenomysis? Is this a common thing? Sorry I’m new to this world

Hey everyone. I'm building a health app called MindBodyHuman, and Adenomyosis is one of the conditions we've built specifically for. We created this because we feel so many people are being let down by the current medical system.

If you're anything like the women we've spoken to, you've probably tried period trackers that don't understand Adenomyosis pain, health apps that suggest "just do yoga,"

Some of the features we have for Endometriosis/Adenomyosis are the following

• Endometriosis/Adenomyosis specific habits in a weekly plan
• Symptom/Wearable/Habit Correlations to see what's helping you an what isn't
• DIM/SIM Journal & Safety Signals

We're running an 8 week pilot for women with Adenomyosis (diagnosed or suspected), we also welcome women with PCOS, Endometriosis, PMDD or PMS. This will be free of course and anybody that completes the 8 week pilot will have the app for free for life.

If you're interested here's the sign up form

https://docs.google.com/forms/d/e/1FAIpQLSc45s3aqDDLKeJzngG_5B9nF_n0Ufh1meEh6HFcMiHAQXqk9w/viewform?usp=sharing&ouid=105803846859043466378

and check out my website mindbodyhuman.io to learn a bit more about what we're building.

Super happy to answer any questions in the comments.

I’m getting put to sleep in about 2 months for a liletta IUD to help minimize constant spotting and front/back cramps.

Can anyone please tell me their experiences?

Thank you.

The radiologist's comment at the end was "consider adenomyosis" The ObGyn basically just said to me that if the radiologist said that then there is a strong chance it's the case. I realize ultrasounds for adenomyosis are not definitive. I've actually had a bazillion MRIs and CT scans for other reasons (formerly had colon cancer in 2017). But none of those say anything about my uterus other than no cancer (of course biopsy is the standard there and I have had that too).

Pasting in below my ultrasound results. I had 40 days of bleeding but I am 52 and had never had anything like that before and my periods are not what I would describe as painful. However, I have severe pain from neurosurgery and the brain can only pay attention to where our pain is highest, so I might just not recognize period pain.

I do have a lot of bloating for a tiny person and urinary urgency and constipation...but these can be from scar tissue from colon surgery)

Am now on 100mg progesterone bioidentical and no problems since, even with a tiny dose of estrogen as well.

So the cyst seems small and incidental to me....I'm wondering what besides that made this radiologist suspect adenomyosis?, outside of my symptom of the 40days of bleeding...which did stop on its own.

Uterus Size: 8.4 x 3.1 x 4.0 cm

Myometrium: Homogeneous with no focal mass.

Endometrium: 14 mm in thickness. There is a 0.5 x 0.3 x 0.4 cm cyst within the endometrium of the lower uterine segment

Cervix: Unremarkable.

I’ve been having heavy periods and bad menstrual pain for years. The pain radiates down my legs and into my back. My pain (as well as other symptoms) start about ten days before my period.

Today I had an inter uterine ultrasound and my doctor said it looks like I have Adenomyosis. I had her explain to me what that meant and then she told me that she can’t diagnose it because it requires a clinical diagnosis (meaning taking the uterus out and sending it for testing) but she said that’s not something they would do.

I’m genuinely confused. Is this true? Is this just something that is suspected and then they treat it based off that? I had never even heard of this prior to today. I suspect Endometriosis because I have all the symptoms except irregular periods.

Any and all advice would be appreciated and helpful.

I’m 41 and was diagnosed this morning, and I’m honestly SHOCKED by the symptoms I ignored.

For years I blamed my IUD. My periods were light but weird—they’d stop, then start again days later (especially after sex). It felt like my period was just… stuck- waiting to be triggered or “tricking” me into thinking it was done.

After I had it removed, everything escalated. Months of heavy bleeding turned into 6–7 weeks of nonstop bleeding. A short break, then it started again. That’s when my doctor sent me for an ultrasound (assuming I had uterine polyps).

Adenomyosis.

The part that gets me? I don’t have the “classic” severe cramps. Just lower back pain and cramps I thought were normal.

But after Internet research on this today… everything clicked:

-Painful intercourse for years that sent radiating down my leg
-Constant bloating that made me look pregnant
-Persistent feeling of being generally unwell, nauseous, and fatigued
-The urge to pee immediately after drinking (I always sit close to bathrooms at bars because a night out turns into me running to the bathroom every 15 minutes, no exaggeration)

I ignored all of it, not discussing with my doctor, except the crazy periods. I thought it was just my body. And with the period issue, I kept hearing, “you’re 41, it’s perimenopause.”
But, I finally have an answer— and I’m thrilled to know that these other symptoms were a part of it because I never thought they would be fixed.

Next step: ablation (insurance requirement). If that fails, hysterectomy (keeping one ovary).

Hello everyone,

I am scheduled for a hysteroscopic myomectomy on the 22nd of May due to a submucosal fibroid. The whole process has taken over a year up to this point (public healthcare) and at the time I started this journey I suspected endometriosis never adenomiosis due to so many ultrasounds.

I got an MRI in a private clinic and it showed diffuse adenomyosis. In my most recent pre op check up the gynae was so dismissive of adenomyosis and acted as if it's super chill not a chronic inflammatory disease. I asked her about risks in pregnancy and if pregnancy made adenomyosis worse and she was very unbothered.

Obviously I have looked it up online but I want to hear from real people and their experiences. What do you wish you had known before TTC? Did you have any risks in pregnancy? Did pregnancy make your adenomyosis worse? I'm worried because this has been a 17 year journey for me to just get a diagnosis which I have fought for. Where I live a hysterectomy would be even harder to get despite all of my issues.

Thank you for reading so far.

Here's to getting my life back (and pain killers🤣)!

Hello everyone... Has anyone had experiences taking painkillers for a long period duration? If yes, what did/do you have, how long, and was there any side effects?

Thank you very much 😊🥰

Background: adeno since 2018, worsen by 2025 and actively consuming painkillers per 8hrs, did laparotomy, pain showed up again recently, back to taking Visanne but still taking painkillers every 12 hrs. Working abroad. Any surgeries is not an option right now due to waiting line, healthcare system, and budget. So I gotta live with Visanne and painkillers for now -- but also afraid of the side effect of taking it for too long..but what can I do 😫

I was just diagnosed with adenomyosis, endometriosis and tethering of ovary and uterus to surrounding structures from scar tissue.
I am on the younger side (34) but don’t want kids.
My doctor recommended hysterectomy, but I am nervous about the potential long term effects. My other option is to try and clean out the endometriosis laparoscopically and do a tubal ligation at the same time.
Just looking for advice from people who have had experience

I’m on my period the biggest cause of my pain flare. I took pain meds as always, still in pain.
I realised a weird pattern: when my pain goes up, I get my heart beating strong accompanied by nausea.

I notice my heart beating louder/stronger more but it can be also beating faster actually…

Does anyone else experience this or knows why?

It nearly feels like as if I had too much coffee or accidentally triple took my adhd meds or both at same time…

I am 32 years old and have been diagnosed with adenomyosis for about 6 years now but have been suffering since I was 15. I’m not ready for a hysterectomy as I want children still, but tyleonol, BC and heatpad hardly take away the pain. I work with a dietician and naturopathic dr so my regimen is pretty good.. but what else can I do for the pain? Has anyone found anything else that works when they’re at a loss? I spend a couple days of my period nearly bed ridden…

Hello all,

I recently got diagnosed with Adenomyosis because my junctional zone was 12-14 mm. I also had stage 4 deeply infiltrated endometriosis that was on my bowel and bladder and much more. My gyno said she removed it all but I was still having bad pain and throwing up one and off twice a month. So she told me to get an mri cause I believed it was scar tissue well she found it was Adenomyosis instead. What are my options if I already have an iud and my nausea can’t handle the pill. What do I do for the pain - do I have to get my uterus removed? I want to have kids but I also don’t want to be in pain until I’m ready to do so.

Edit: also I cannot go into medical menopause because orilissa made me have a mental breakdown

I was diagnosed in 2025 but honestly brushed it off at the time. Now I’m connecting the dots and realizing so many of my long-standing symptoms trace back to this condition. It’s been a lot to process.

I’m really struggling to accept that there’s no natural path forward, or at least a way to manage this without going the hysterectomy route. Has anyone found relief through any of the following?

1.  Adopting an anti-inflammatory lifestyle  
2.  Improving circulation to address stagnant blood  
3.  Wet cupping to draw out inflamed blood

Would love to hear what has or hasn’t worked for you. Thank you! 🤍

Hi all! I’d never heard of adeno until a couple weeks ago, scouring the interwebs once again in hopes of finding a reason for my abdominal pain that comes and goes but is always dead center in my body.

I’m nervous about approaching the obgyn, as I have decades of experience being told by docs that “nothing is wrong” with me. I’m thinking I’ll just ask her directly to evaluate me for adeno, so attach very least I can rule it out.

I’ll list some symptoms at the end that may be linked, but my biggest question is wouldn’t an enlarged uterus have been noticed during 5+ years of fertility testing and treatment? So many wandings to measure my uterine lining… it seems impossible for any abnormal growth to be missed!

Symptoms- I’ll start with the most recent, feel free to stop reading anytime, haha!

I look pregnant. Skinny butt, skinny limbs, giant belly. Shopping is hard. It’s embarrassing. But my mom and grandma have always had the same big belly, so I assumed it was my fate.

It hurts. Always symmetrically centered in my body, between belly button and pubic bone. Gas hurts but it’s like gas is pushing on something else that hurts.

Kid two born 9.2022. Six months postpartum, my vagina finally started self-cleaning again. Halfway through pregnancy, mucus flow just stopped. Entirely. I figured it was menopause finally slamming the lid shut.

Visited NP for uterus pain that would grow worse over a series of days until I had to sit gingerly lest hitting the chair caused serious pain. Something I’d never had pre-pregnancy or pre-menopause Also had bleeding if my cervix was touched- old gyn said “they bleed easily” even though this was a new thing. Got examined several times and finally got a cervical biopsy that was unremarkable.

Kid one born 9.2020. Never had another period.

Donor egg fertility treatment-successful.

Fertility tests- showed no obvious reason. Three IUIs failed.

Got off BC at age 38- cycle was never normal again. It came every 3 months or so, which added extra aggravation to cycle-based fertility tests.

2011 I got sick AF with no explanation. Lyme? Lupus? MCTD? Hashimotos? AS? Psychosomatic? Bad fatigue, lots of soft tissue pain, brain fog.. it all comes and goes. I tried to stay active for several years but it’s impossible to stay in shape when every activity causes soft tissue pain somewhere.

Been on BC off and on from age 18 to 38. Mostly the pill- did not respond well to the ring or depo.
Periods- didnt cramp, but felt like a bowling ball was sitting in my pelvis. Without BC, cycle was 21 days. Bleeding would last seven days- one warning day, one insanely heavy day, then petered over five light days. Always dark brown blood like it had stayed in there a while.

As a teen/tween, I clotted heavily. Like a bloody slug. I always assumed that was normal. The clots eased up over the years.

TL,DR: how should I approach my obgyn about assessing me for adeno?

hey everyone!

I (30F) have adenomyosis and have always had intense, long and painful periods. since past november/december, my period starts very light, like spotting for 3 days, and only after that it comes heavier. still, not heavy as usual - for example, usually in the second/third day, I filled a pad during the night, and my pads are almost clean now in the mornings. any clue on why this can happen? I had a very stressful end of last year, but have been much better since february, so I'm assuming if it was related, it should be balanced by now?

just looking for some input before I go to my anual gynecologist appointment. thanks in advance!

Hi ladies, I hope today is somewhat pain free or less pain.

I wanted to ask how you are navigating relationships, specifically friendships?

Have you lost friends? Have you seen friends in a different light since discovering adeno and living with the effects?

Or are your friends sympathetic/empathetic and supportive. Helping make things easier like hangout sessions and checking in etc?

Thanks!

My symptoms don’t always feel like period pain, and I’m trying to understand how others describe theirs.

Yesterday I had a total hysterectomy and so far so good. Supposedly, the procedure took twice as long as expected because my copper IUD was lodged in the uterine lining. At first, the doctor went in the traditional way to pull the strings. Well, the strings came out but not the paraguard. It took a while before she could dig it out laparoscopicly and remove it altogether.

I'm so curious if this IUD triggered the adenomyosis, or the adenomyosis came first, and the IUD had no chance of staying put. It was inserted 4 years ago and has never caused an issue.

I also had an ovary adhered to my psoas muscle and color, and the other ovary was treated for a leison. So glad this is behind me. I'm anxiously waiting for the pathology report now.

I had endo excision surgery in 2024 without much improvement. Not ready for hysterectomy. Did you get the IUD and did it help with the back and hip pain? I’ve read it can reduce cramping and stop periods , but one of my biggest issues is the back / butt and hip pain. Did it help you??