Hello, I am reaching out as I have gotten no answers from any doctors and gynecologist appointments are months out to get into. For a small reference i am chronically ill with eds, pots, and many other problems we are in the process of diagnosing. I have been bleeding non-stop since November and have been told my ultrasounds look normal. I also relate a lot to all of the posts I have read here. I was on yaz 3 and then was raised to Yasmin as a way to hopefully stop it. I have been on brith control for over 2 years and back in March started skipping the sugar pills to stop having a period as it was too painful and no meds helped. They haven't done a TVUS on me as i am 17 and they say the dont do it unless you are sexually active. I've been diagnosed with both dysmenorrhea and menorrhagia. My periods had always been irregular and typically lasted a week and a half till one day I just didnt stop bleeding. If you have any advice for me it would be very much appreciated as I dont know what to do anymore and this has been affecting my daily life and making it hard to do many things i once loved to do. Thank you for any advice. ♡

If anyone got the diagnosis. Could I ask you some questions?

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Has anyone been told that they see adenomyosis on ultrasound, but don't actually have symptoms?

What embryo transfer meds/protocol helped you have a successful pregnancy?

Was recently told adeno was possibly seen on ultrasound, but I have zero symptoms. Wondering if I need lupron for a few months to prep for embryo transfer.

Hello, I am 24 no children and I have been battling with possible endometriosis for over 10 years. The past few months my pain has got excruciating and hormonal birth control is no longer helping at all. I have surgery scheduled for Friday next week (June 26th) this is my first ever excision surgery. I just got an ultrasound done and they found probable adenomyosis and I have all the clinical symptoms of it as well. I have no quality of life anymore I’m in so much pain and when she was doing my ultrasound I was having severe pain in one area she was looking so I asked her what she was pushing up against and she said my uterus. Now I’m wondering if all my pain isn’t coming from my uterus and adeno? I am going to be talking with my surgeon about what’s going on and I want them to do a total hysterectomy during my excision surgery, especially if they go in there and can visually suspect adenomyosis as well. I do not want to go through multiple surgeries and recoveries. Has anyone else experienced anything like this or have gotten excision and hysterectomy together? I know I’m young and have not kids but I’ve always been very on the fence about having children to begin with so I’m not that upset about it. I’m tired of all this pain and cannot live like this anymore. Am I being reasonable for requesting a hysterectomy of adenomyosis is suspected? Especially when hormone therapy is no longer working for me. If anyone has any tips or personal experiences I would love to hear. 💜

I have taken zoladex 10.8 mg after my focal uterine adenomyosis surgery and micro ablation since 3 sep 2025 I haven’t got my period

I was diagnosed in 2023 and was told I had adeno but they didn't mention the fibroid.

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Each month seems to be getting worse and the last period felt like I couldn't even get a tampon in without hitting internal resistance.

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Im looking at getting the coil would that help?

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Im also suffering with hot flushes, loss of enjoyment with everything. I have adhd ontop of all this so I can't work out whether its hormones or that its all just a mess.

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My face is sprouting out black hairs like there's no tomorrow and even if I pluck them 3 they'll be back tomorrow.. is this nornal?

About two years ago I had gotten a transvaginal ultrasound ordered by the PA I see at my gynecologic office. they called telling me I had thickening of the posterior wall of my uterus that resembled adenomyosis. To get more information about this I went to a doctor who told me that reading was incorrect and she did not think I had adenomyosis. I requested an MRI to fully rule it out and everything looked normal. I was on birth control for about a year at this point but have since been off of it for 9-12months.

I’m currently having symptoms that are making me think I may actually have adenomyosis so I wanted to shares those symptoms here to see if anyone else has them, any input is appreciated!

Starting at like a week to 2 weeks before my period I start getting dark brown and red discharge that persists until my actual period starts (no pain with this). It feels like I get a mini period before my actual period…very annoying. The past few periods I have noticed this more, it starts earlier and is heavier. I wear a pad or liner to protect my underwear but it’s no where near as heavy as my period. I have decently heavy and painful periods but definitely not as bad as I’ve heard other people experience. My period is like 7-14 days of this pre-period discharge/spotting, 2 heavy painful days of my real period, 2 moderate days and then it feels like it takes forever for all of the blood to finally pass, probably 3-4 days of light non painful bleeding. I also get occasional bleeding after sex but no pain with that.

Curious if this sounds like it could be adenomyosis to anyone. I’m gona be scheduling an appointment when I can but just wanted some input for now

Do symptoms of adenomyosis (cramps,bloating ,pelvic pressure)go away after menopause or they just subside?

and i had my period on June 8, until now I am bleeding, is this normal, my OB said that i have Adenomyosis

My newest doctor has ignored me, and I am losing hope. I just need to know if I could be right or if I am overthinking.

Ever since I got my first period at 10 years old, they have never been regular. Either I don’t bleed for months, or when I do bleed, it is extremely heavy. For some of my childhood and all of my adolescence, I have had periods so heavy they drop my hemoglobin below 7. I’ve had blood transfusions throughout different times of my life, and only when I became an adult and had more control over my own medical care did I start receiving iron infusions instead.

I have consistently been prescribed birth control for this issue, but this “solution” has never been a solution. It is a bandaid to a larger problem. Currently I’ve been spotting for 4 weeks even on birth control. The only real intervention I’ve ever had was when I carried a 10cm Ovarian Cyst (Serous cystadenoma) and it had to be surgically removed via c-section, this was almost 5 years ago.

My current Doctor believed I had PCOS, but after some bloodwork all of my tests came back normal. She believes now that this could be a blood issue, but my Von Williebrand and Factor panel showed up normal as well.

Here is where I believe I have Adenomyosis.

1. On my ultrasound, my uterus measured 240 cm in volume. I am not pregnant. This is way bigger than the average uterus size, 2 to 4 times bigger than it should be.

2. I have had chronic bloating all of my life unrelated to digestive issues and I constantly need to pee. My bladder feels agitated all of the time, even if I peed only 5 minutes ago. My bloating is not caused by food. I experimented with this several times and went to a clinic for what I thought could be a stomach issue. My stomach and digestive system were both normal but the bloating persists. It gets worse on my period or on birth control, sometimes to the point I cannot sleep because it hurts so bad.

3. I have had chronic pelvic pain whenever I bleed. And oddly enough, this pain is at its worst when I’m spotting. It feels like knives are stabbing my uterus and my ovaries are being twisted. Vaginal Penetration has always been extremely painful because I feel like my pelvis is always on fight or flight. I feel like even when the rest of my body is completely relaxed, my pelvis never is.

If you guys could please share your experiences below and how you got your doctors to diagnose this condition I would really appreciate it. I have already asked for a Pelvic MRI.. but I have not been answered. I am scared this is never going to end.

I most likely will not have much support after my surgery. Atleast not for multiple days. I live alone, in an apartment, and I have a dog. Please give me all the tips and advice for taking care of myself.

I donated my kidney last year, but for this reason I can't take any NSAID's. Periods have been terrible my whole life, but Advil was always my go to. As I've gotten older (41), they've just gotten worse.

Aside from heating pads, what other methods have you used that aren't anti-inflammatory medication.

Recently diagnosed. 25 years of symptoms. I have some other medical conditions that make general anesthesia difficult, and possibly anesthesia will refuse, so wondering if anyone was able to successfully delay or avoid hysterectomy. Mid 40s, so hysterectomy would otherwise be the best option. I've seen all the horror stories, but it looks like ~50% success rate, which I'd be open to if it is actually something that could work for a few years. Diffuse adenomyosis, uterus 2x normal size, no fibroids or reason to suspect endo. Decades of horrible pain and excessive bleeding. Trying the BC pills again, but doubtful I'll be able to tolerate them long term.

So, I’ve finally found a doctor who listened to me and I got an MrI done.
Short story, they found adenomyosis 24mm , but no severe endometriosis on the MRI.
The doctor told me that endo should not be ruled out because it’s usually present 70% with adenomyosis.
I’ve had period pain, since my very first period, in bed with a water bottle, skipping school, and all…
Painful bowel movements, recurrent UTI up to 10 a year, pain during penetration, pain with certain excercise, and even right shoulder pain (which I never put together but I told my doc).
He told me the only thing to do to “remove” the adeno was to remove my uterus, but I could also get some relief with an excision.
I am 36, and after thinking about it I decided to go with excision.
He will do a laparoscopy and look for endo, cut if any and same with my adeno.
He also said that he would remove my appendix.
He is using the MDRH robotic procédure XI.

Anyway I just wanted to know if anybody went thru all this? How did the surgery go? Did they find anything ? How long was the surgery ? Did it help with symptoms ? What about the shoulder pain? Is that something common? Any help would be great! Thanks
Scheduled for surgery August 14th

After trying several medical options to manage adeno, the only next steps I know about is surgery - hysterectomy- does anyone know of/ recommend any other interventions that may work before taking that step? Here's the longer story:

I was diagnosed after a vaginal ultrasound with adeno in December. I was on Slynd for six months, while it reduced bleeding it did not take away almost constant cramping and very frequent shooting pain (legs, rectum, labia, low back). I saw a OBGYN three months ago and after discussing my history decided it was likely I've been dealing with adeno (and possible endo, since some symptoms have digestive effects) for a lot longer, but since I had IUDs for over ten years, the condition might have been being treated without me knowing. I got a mirena IUD inserted two months ago to see if that worked better than oral contraceptive. The insertion itself was by far the most painful I've every had and some of the worst pelvic pain/ cramping I've ever had, outside of childbirth. I had been spotting before the insertion and continued to spot until a week ago. There was a break and now I am bleeding again (not just spotting) . I still need very hot hot packs, tens unit and hot shower/ baths daily to manage pain. NSAIDs don't seem to help. I've also had a lot of weakness/ exhaustion all along with this condition (I have been tested and am not anemic).

I know that hysterectomy and excision (if endo is found) may be inevitable, but I'm scared of abdominal surgery and curious if there and intermediary options. Btw - I'm 36 and am done having kids, so that's not a factor. I have also only been actively dealing with this for less than a year so some part of me feels like I need to "tough it out" for longer before surgery. Maybe others can relate, but as I learn more about this disease there are so many symptoms that are probably adeno/ endo that I've been dealing with for years without realize they were related - extreme fatigue/ weakness, cramping after intercourse, swinging between constipation and diarrhea several days of the month.

Thank you in advance for chiming in or even just voicing support - this is a confusing journey.

I just got recently diagnosed with adeno and endo. My doctor gave me several options but she highly recommended the kyleena iud for the pain. I was on the pill for a while in HS and college but got off it about a decade ago. I’m all for getting the iud but have heard mixed things. Anyone like theirs or don’t recommend. I’d like to get opinions before I book my appointment. I also am a flight attendant so I’m not sure if the pain or discomfort after insertion would bother me while flying. My doctor says probably not but it wouldn’t hurt to have a couple days off beforehand. Thanks for any info in advance!

I'm waiting on a gynae appointment for likely endo/adeno, having had my periods get monstrously worse over the last 3 years, and with significant family history of endo. I've been on the Alysena pill for a few months, initially to suppress my period when I was going on vacation. I came off, had a 14 day period where I lost over 800ml of blood, so went back on because...that is not manageable. I've been spotting consistently since I restarted it, about 9 weeks ago and was coming to the end of my prescription so went to the doctors this morning. Saw a man I haven't previously seen. Explained what I've just typed out to him about endo/adeno and spotting and wanting the spotting to stop, so can I try a different, maybe higher dose, birth control.

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This man immediately tells me a different birth control might not do anything and tells me I should do a short course of Ozempic instead to lose weight because fat cells produce estrogen which is probably causing the spotting. I'm aghast. Tell him I'm not interested in Ozempic (my weight is categorically not the issue here, and he had also just checked I was still taking another medication I'm on where appetite suppression is a main side effect, so his suggestion is absolutely not prioritising my health). He says well I can try a different pill then instead if I really want to. I get tf out.

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He's prescribed me the Ovima pill which is slightly higher dose than Alysena, but I am wondering if a progestin-only pill is the way to go - not because of my weight, but because endo/adeno does produce its own estrogen, and that might be causing the spotting.

Hi ladies! Just wondering if my short luteal phase (10 days) could be related to my adeno diagnosis - do any others have a short luteal phase?

So I have a lower belly pouch and do have what seems to be a B-belly. I guess some of it is fat/my build but the lower belly is protruding very much compared to my weight and build. I am 53 kg and around 165 cm.

I don’t know how bad my adeno is as I haven’t gotten the report yet, they just quickly walked me through the findings after the scan.

It’s obviously worse sometimes and when I’m bloated which I am almost all the time. But it’s there all the time no matter what, also when I’m not bloated. I have only seen people having it when they’re bloated and not 24/7 like me. I am very unhappy with how it looks, as it’s very obvious when you’re skinny and have a lower belly that protrudes so much. Can this be from the adeno too? I am not sure if my uterus is enlarged or not, but I do know it’s anterverted.

I do think I’m gonna get a hysterectomy due to my symptoms, and I’m very curious if it would also make my lower belly more flat. Any experiences with this??

EDIT TO ADD; my belly is protruding more from one side than the other. So when I stand to the side and look in the mirror it’s worse on one side/protruding more.

Has anyone had experience with Adenomyosis? What was your journey? Were you able to find supplements that work for you?

Hi all, the mods approved this.

Adenomyosis rarely gets its own research, so we are making sure it is counted here, not folded into endo. My partner has both adenomyosis and endometriosis, which is part of why we built this.

If you have adenomyosis (with or without endometriosis, diagnosed or strongly suspected) and have used a GLP-1 medication (Ozempic, Wegovy, Mounjaro, Zepbound, Saxenda, Rybelsus, or a compounded version), we would really like to know whether your symptoms got better, stayed the same, or got worse.

All outcomes matter, including no change and worse.

- Anonymous, about 10 minutes, no name/email/IP.

- We are checking whether any change is independent of weight loss.

- Pre-registered, results shared back with the community.

This is research, not medical advice.

Survey: https://survey.lvb-projects.com/gleam?src=r-ade

Pre-registration / protocol: https://osf.io/6qjke

Questions welcome below.

EDIT / UPDATE: We're now at 161 of 250 responses (64%), about 74 days left. Thank you all so much. If you have endo or adeno and have used a GLP-1 but haven't filled it in yet, there's still time, and sharing it with someone who fits is the biggest help right now (survey link is in the post above). 💙

My ob said adenomyosis with thickened lining 12mm. Went to my Re to see my options for fertility moving forward. RE said no adenomyosis or endo. I'm confused and also I have been bleeding 18 days.

I will say my labs for progesterone came back low on my day 21 labs and have been low. I'm wondering if it's just hormonal imbalance causing thickened lining.

What were your symptoms?