honestly im traumatized. Turns out my IUD was displaced and all twisted and crooked inside of me. My doctor removed it today but I just have no idea how severe my symptoms will be now or how many months I just wasted in agony for no reason. My specialist told me I need to try another one because she didn't place this one, so we are going back to the OR. The first one was placed with ultrasound in OR. She thinks they messed up the insertion but im wondering if it just ?? moved??? I got the first IUD 6 weeks post adenomyomectomy and excision. I'm seriously traumatized and I cant get a hysto til i try another iUD first. I really just want to yeet my uterus and get it gone for good after all of this trauma and its not like the adenomyosis is going anywhere. I'm only 26 though. Anyone relate with this IUD crap??

Hi everyone! I’m 22 and trying to figure out what could be going on with my body because I’ve had overlapping gynecological and gastrointestinal issues for years, and I feel like I’m constantly dealing with symptoms without getting clear answers.

I have a history of confirmed ovarian cysts, irregular periods, and IBS-like symptoms. I had an upper endoscopy and colonoscopy last year, and I was told nothing significant was found to explain my GI issues, although tissue and polyps were removed. My symptoms have continued, and I’m starting to wonder whether endometriosis, recurring ovarian cysts, or another gynecological condition could be contributing to everything.

My menstrual and gynecological symptoms:

-My periods became very different after I stopped taking birth control a couple of years ago.
-My periods only last around 3–4 days now, but I pass HUGE blood clots, and my bleeding seems to consist mostly of thick, dark, clot-like blood rather than a normal flow.
-Sometimes I notice pinkish mucus.
-I experience pain during sex, lower back pain, and abdominal pain even when I’m not on my period.
-I’ve had confirmed ovarian cysts before, but I don’t know what type they were.

My gastrointestinal symptoms:

-Horrible bloating and constipation.
-Mucus in my stool or when I wipe almost every time I use the bathroom.
-Stools that are sometimes greasy, extremely foul-smelling, or contain what looks like undigested food.
-My stool is often clay-yellow colored or sometimes very dark.
-I feel uncomfortable after eating almost anything, even when I eat healthy foods.

I also have gallbladder sludge that I never properly followed up on, and I was told I may have gallstones. I know that could explain some of my digestive problems, but I’m not sure if it explains everything.

Another major concern is my family history. Ovarian cancer, cervical cancer, breast cancer, and other breast diseases run in my family. With my history of ovarian cysts and the changes in my menstrual cycle, I’m worried about whether I should be looking into something more serious, too.

I keep wondering about endometriosis because of the pain during sex, abdominal pain outside my period, and GI symptoms. I know these symptoms can overlap with other conditions, though, and I don’t want to jump to conclusions.

Has anyone experienced something similar? Did you have endometriosis, recurring ovarian cysts, hormonal issues, or another condition that explained both your reproductive and digestive symptoms? Were there specific tests or specialists that finally helped you get answers?

I’d especially appreciate hearing from anyone who had persistent GI symptoms despite a normal colonoscopy, or whose endometriosis symptoms weren’t recognized right away.

I haven’t had the best experience with doctors and have always been dismissed. I also didn’t have the best health insurance at the time and still kind of don’t….I’m planning to get everything evaluated again because I don’t want to keep dismissing my symptoms, but I’d really appreciate hearing about other people’s experiences. I feel like so many things are happening at once, and I’m struggling to understand what could be connected. Please let me know if you guys have any advice or guidance.

anyone taking semaglutide and ozempic with adeno?

for me it hasn't made any improvement so im wondering if I even have adeno. ive been on ozempic since 6 months now..

Can symptoms vary all the time?

Can Adenomyosis change ?

Hi everyone. I had endometriosis surgery at 27 years old found all over, a lot on my bladder. I’ve been on birth control for 15 years. I also have PCOS which I never had symptoms due to my birth control. Anyways, the doctor said I should be clear of endometriosis for 5 years after surgery. I started feeling severe leg pain again before periods and getting bloating but this time in my lower stomach primarily. My OB did an ultrasound and said I have Adenomyosis now. I have never had kids or been pregnant. I’m not sure what to do as I am miserable again. I don’t think they will do a hysterectomy until I’m 35. Living with the bloating for 6 years sounds horrible.

Hiiii, I just want to rant that I hate my life…

I’ve been dealing with menorrhagia since I was 14 and was diagnosed with adenomyosis at 23. Now I’m 26, and nothing has changed. Several OB-GYNs have told me to lose weight. I lost a huge chunk of weight, but it hasn’t changed anything.
One male OB-GYN even told me to get married as soon as possible. Like, that’s a whole social suicide. Why would I trouble another person? Plus, it doesn’t even make sense, and it won’t stop the bleeding.

I’m so tired of having to get blood transfusions every two years. And because I’m still in grad school, I haven’t earned a single penny yet, so I can’t even focus on treating my disease properly.
I feel like a huge failure and a burden to my family.
I just want to live a normal life, yo.

I’m now bleeding for three weeks straight, soaking through 2–3 pads each day. I cant juggle school and internship anymore, its been weeks since I had brain fog and mentally exhausted..

At least make it less painful if I leave.

*I'm not referring to progestins, Slynd or an IUD*

Im talking about oral progesterone, like Prometrium or compounded oral progesterone

I feel like I had more bloating, weight gain, back pain, weird nightmares (maybe this has nothing to do with Adeno, maybe it means intolerance?)

What's been your experience? What do you know about progesterone and Adenomyosis?

​

Hello! I've previously posted on here about in-person support groups for people with endometriosis, adenomyosis, fibroids and PMOS, as part of an initiative in London, UK called EndoPals.

We have now expanded to virtual support groups in addition to our in-person ones.

🗓️The next support group is at 10 AM on the 1st of November, 2026.

❗DM for a link to the meeting!

➡️You can also follow us @endopals on Instagram for the latest updates

➡️Or DM me for a link to our WhatsApp community

Hi everyone, the link to my original post is added:

Basically, my husband’s (35M) swimmers are good. We’ve been trying for a year and I (32 F) am overall healthy. I got my blood work back, all that was abnormal was an AMH of 1.33 (down from 1.64 last month?) and prolactin was elevated. I got the hysteroscopy and saline flush ultrasound yesterday, everything looked good she said structurally. My tubes are open and all that. But the fertility doctor mentioned mild adenomyosis and wants to try IUI with Femara (letrozole). I’m trying not to panic with the adenomyosis…. Does anyone have any tips? Recommendations? Successes? I’ve never done IUI… I’m nervous. I just want this to work. I don’t have symptoms of the adeno to my knowledge, it was really a shock to me. Thank you in advance 🩵

I have a child and a single parent. I work full-time onsite and come home always tired to check my kid. TBH, I always have flares. But I couldn't afford hysterectomy and I cannot afford reducing workload because I have a child.

How do you cope?

Transvaginal ultrasound show: "Heterogenous uterus and streaky shadowing and endometrial-myometrial junction ill-defined" ....what other diagnoses can produce these imaging findings?

One radiologist says that's a normal uterus in 50% of women but from my understanding these findings line up with Adenomyosis

Could you please share any insight

Thank you

I've been diagnosed with adeno for 2 years and got diagnosed with ADHD a couple of weeks later (weird time)! I was originally prescribed tranexamic acid and mefenamic acid. I also ended up diagnosing myself with IBS (gluten/caffeine/fatty food triggered) around then too. Everything was going ok until the following year I started methylphenidate (which was amazing for ADHD, but had some unintended consequences).

Recently I've been getting bad lower back/pelvic pain, it's progressively gotten worse over the last 6 months and seems to be triggered when I haven't drank enough water. Last week during my period it was so bad I could barely move and spent all day on the sofa.

Is anyone else noticing more pain if they are dehydrated? I'm assuming this is a bowel/IBS reaction, acknowledging the adeno is probably linked to my IBS. The methylphenidate reduces appetite and need to drink so it's a constantly battle. The pain is just getting worse and would prefer to try to manage until there are no other options left....

Today I got asked by a lovely lady 😬 “aww when are you due” as she then proceeded to reach out for my belly 🤦🏻‍♀️🤦🏻‍♀️🤦🏻‍♀️😓😓😓 1 , no I’m not having a baby , 2 please don’t touch me and 3 I have adenomyosis and endometriosis and I’m having a bad day so I can’t hang around to explain ! Thank you muchly 😂anyone else having to explain why your carrying a massive tummy . It’s so embarrassing I literally look 6 months pregnant

so im currently recovering from what has been my 4th laparascopy where my surgeon diagnosed me with adenomyosis.

my ovarian cyst had also returned for the 3rd time in the same ovary and was back at 10cm and unfortunately it was on the verge of twisting and was crushing my fallopian tube so they removed the cyst with the ovary and the tube altogether. he was also very confident that i had no endo - just adenomyosis. even though i looked back at my notes which said he performed adhesiolysis whilst i was under but i dont know what for.

i just feel like a bit of an anomaly for a couple of reasons. a lot of people say they were diagnosed with adenomyosis via ultrasounds or an mri but i had none of those - i had an mri days before my surgery so my surgeon was basically going in blind in a way as he didnt get the results in time. i know there’s no right or wrong way and either way i have a diagnosis but i just feel a bit like an alien. also according to some websites its more common to have both endo and adenomyosis rather than just one and its mainly discovered in people aged 40-50 and people that have had children but im 28 years old and never had a child. people also seem to know what stage their adenomyosis is at but when i asked my surgeon about mine he said it’s not classed in stages and that mine was somewhere in between mild and moderate but in my discharge papers he said my uterus had a “mild adenomyotic appearance” so that’s made me nervous and has me wondering if that is a valid diagnosis? my surgeon said word for word that i have a confirmed diagnosis of adenomyosis but its also not been updated on my NHS app either - it still says i have the cyst! my surgeon also said he would schedule a follow up appointment with me in 6 weeks, its been 4 weeks and still havent heard anything which has me worried.

even though i’ve had 4 surgeries i seem to get slower and worse at recovering - i dont whether its because this time i had an ovary and fallopian tube removed and the mirena coil fitted if thats making it tougher to bounce back.

again i just feel like im an odd case and havent really seen experiences or stories similar to mine. i know im probably overthinking a lot of this and i just need to chill but i’ve felt so isolated lately and just want to share my story and see if anyone can relate - if you read all of this thank you for taking the time to do so i am incredibly grateful 🙏💕

I got my results back on a somewhat clear scan but signs of adenomyosis or an adenomyoma. They said it’s too early to tell, offered me to come back in six months to discuss getting surgery incase I change my mind.
My ultrasound found prominent heterogeneous myometrium and adenomyosis on both the internal and external exam.
I’m wondering would it be worthwhile getting a second opinion on the mri dicom scans with my little histology experience (genetics student with some physiology experience) some things look concerning considering I had a ct urogram blocked on the left side and wonder could the uterus be pressing on it be the reason for that. Anyone with any thoughts on the scans and if the adenomyoma is worth removing is much appreciated

Hi Everyone! I’m 3 weeks post op (Stage 3 endo and adeno) and I got the Mirena inserted after my excision surgery. I just had my first period with Mirena last weekend and holy hell was it painful. I’ve read this is normal and that it can take 2-3 cycles for the body to adjust. I really want this to work for me but will it get better?

Does anyone get really bad cramp-like pain in the top of their bellies during ovulation? Is that a thing with Adeno?

I’m on the coil and day 10 of my period… I was put on the Mirena in April to stop the heavy periods making me anaemic and to stop the pain. The volume has changed, but it’s extended my period from five intense days to two weeks of steady gunk.

But regardless of the pill, I have always had this pain during ovulation, like contraction pain but in the top of my belly.

Trying to figure out if this is Adeno or if the Mirena should be helping me with this and isn’t.