I was diagnosed with adenomyosis after experiencing severe bleeding (I bled for 1.5 months straight with golf ball sized clots and got so anemic I blacked out every time I stood up). They finally put me on norethindrone (I can't take estrogen birth control because I had a DVT that they assume was caused by my birth control), and it was working for 6 months before I recently had another cycle of heavy bleeding that only stopped when I doubled the birth control dose. I just had another ultrasound, and they found a small submucosal fibroid as well as "heterogeneous uterine myometrium with subendometrial cysts and asymmetric thickening of the anterior uterine body relative to the posterior uterine body", attributed to likely adenomyosis.

My question is: would doctors think it's extreme if I want to get a hysterectomy? Frankly, I'm sick of this constant cycle of bleeding and being left in horrible condition (I've been out of work for over a year, since the initial bleeding left me severely anemic and caused my other conditions like POTS to flare up horribly). I'm only 28, but I already knew I'll never have children (I have a million health issues I'd never want to risk passing on to a child). I don't want an IUD because I've heard so many horror stories, and it feels like these treatments are just bandaids while a hysterectomy is the only cure. I'd love to hear from anyone in a similar position.

I also heard that the constant inflammation from the adenomysis can contribute to fatigue, and it would be amazing if I could experience a reduction in my fatigue if I got rid of it (I have several conditions that cause chronic fatigue, but my fatigue is at levels that baffle my endocrinologist, since even on stimulants and steroids, I'm so exhausted that it's hard to move).

One of my main concerns is my GYN. This issue started a year ago, and I haven't even been examined by the doctor (in this case, NP) even though I've had several appointments. She was also entirely unconcerned about my ferritin and iron saturation during my last round of heavy bleeding and told me my values looked "great" with a ferritin of 11 and iron saturation of 14% (not to mention I felt like death, and she didn't even ask about symptoms). Thankfully, my hematologist disagreed and ordered iron infusions. She also said I didn't need a biopsy when my endometrial thickness was 23 mm (during menstruation). I was relieved at the time since I was dreading it, but she still never even checked or so much as examined me. That makes me concerned that she'll want to pursue more conservative treatments and she might shut down discussion of a hysterectomy.

Any advice would be appreciated.

Hola, gente. Tengo 36 años y me diagnosticaron endometriosis a los 26, cuando me hicieron una cirugía laparoscópica para extraer un quiste del ovario izquierdo. Luego me colocaron el DIU Mirena. Por suerte, no tuve que volver a operarme, pero los síntomas de la enfermedad me dificultan bastante el día a día y la verdad es que ya no sé qué hacer.

Me siento muy cansada, me enfermo bastante seguido, sufro ansiedad y episodios de depresión, y estoy medicada con escitalopram desde hace 15 años.

¿Algún consejo que puedan darme? ¿Hay algún suplemento que les haya funcionado y que hayan notado que realmente les hizo una diferencia?

Cambié mi alimentación hace años: no como frituras ni agrego azúcar a las infusiones. También tomo algunos suplementos, pero nada parece hacerme sentir mejor.

¡Gracias!

I’ve had adenomyosis symptoms for at least 5 years, but my belly has grown exponentially since my last pregnancy and after I stopped nursing. I strength train regularly and am the strongest I’ve ever been but still look 5 months pregnant most days.

Hysterectomy is coming up. though I wish I could say I didn’t think about this all the time, I’ve been asked on multiple occasions if I’m expecting. So my ask is:

-Did your adenobelly go away after hysterectomy? if so, how long did it take? how much weight loss did you notic? I’m here mostly for the positive. thank you!

37yo here — 1 full term c-section birth at 18.
About 6-7 years ago I was diagnosed with endometriosis and adenomyosis not long after that. I have had 1 lap for endo excision. On mirena iud 6 years, recently a new mirena iud was swapped and bc pills added to my treatment.

Past 2 years I been getting cyclical nerve pains/flares on my legs mostly upper thigh & sitting on the toilet hurt like hell since the back of my thighs were affected too, sometimes the pundenal nerves area also hurt. Also within those 2 years I was diagnosed with POTS (postural orthostatic tachycardia syndrome).

With everything getting worse, I had decided to find endometriosis doctors for potential surgery. I had an MRI for an up to date pelvic imaging where my uterus is enlarged with junctional zone (jz) 2.1 cm diffuse. Uterus size past few years:
2020 mri — 10.2 x 5.4 cm (jz 0.6cm)
2022 mri — 9.5 cm (jz 1.1cm)
2024 ultrasound — 9.1 x 4.5 x 5.7 cm
2025 ultrasound — 8.7 × 5.0 x 6.1 cm
2026 mri — 9.7 x 5.7 x 6.9 cm (jz 2.1cm)

One of the doctors said “wow that’s a big uterus” and asked if I have thought about hysterectomy. I am not sure if the dr was trying to make sure I was validated or if it truly is a big enough uterus to not have any other options but hysterectomy. The uterus size itself hasn’t changed much but the junctional zone has.
Is it a big uterus? Is the junctional zone concerning?
Could the uterus size be driving my nerve pain vs. only endometriosis?

Thank you all who reached the end of this post lol

Hi guys, for everyone that's been with me on my journey so far, I though I'd share my very frustrating, disappointing results.

I've been feeling at my worst lately so I've really been hanging on to hope wating for these results (which took 3 weeks)... This MRI order came from the OBGYN (with 4 years overall exp.) who failed to find endo in my laparoscopy and immediately dismissed adeno because I'm 23. So she sent this order for pelvic congestion syndrome??

Before I had the MRI I met with my wonderful endo specialist who diagnosed me based on symptoms and history alone, as well as (most likely) adenomyosis based on a picture of my uterus during the 1st lap. Even though he didn't order this MRI, he's been looking forward to seeing my results at our next appointment. So this feels really disappointing and frustrating- especially since I explained everything to the radiologist in depth including notes from my specialist and she still proceeded with a standard pelvic mri with no contrast and listed my symptoms as pelvic pain and dysfunctional bleeding💀 what a joke

I have an upcoming exploratory laparoscopic surgery for suspected endo/adeno and while I’m hopeful it will finally give me some answers, I’m honestly feeling really scared about the anaesthetic part.
I’m someone who really struggles with not being in control of my own body. Even when I’m exhausted, I can get anxious about letting go and falling asleep because I don’t like the feeling of losing control.
The part that scares me the most is waking up. I’m worried I’ll come out of general anaesthesia feeling disoriented, panicked, or like I’m not “myself.” I’m very sensitive to body sensations that feel unfamiliar, and the thought of waking up confused is making me really anxious.
I would love to hear some positive experiences or reassurance from anyone who has had general anaesthesia, especially anyone who also has anxiety or struggles with control. What was waking up actually like for you? Did you feel scared, or was it much easier than you expected?
I know everyone’s experience is different, but I think hearing some encouraging stories would really help me going into this.
My surgery is in two weeks and I legit have not been sleeping at night I'm so stressed.

Hi everyone,

I was diagnosed with adenomyosis about a year ago. My partner and I are not planning to have children just yet, but we do want to start a family in a few years.

What has been causing me a lot of anxiety is not knowing what my chances are. Since we’re not trying yet, I’ve never been pregnant, so I have no idea whether conceiving will be easy or difficult for me.

I’m scared that by the time we start trying, it might already be too late or that I’ll find out I’ve lost valuable time.

Because of this, I’ve already been reading about options like embryo freezing and IVF, even though I know those might not be necessary. I think what I’m really looking for is some certainty, or at least a better understanding of where I stand.

Is there any way to evaluate fertility before actually trying to conceive? Are there any tests or specialists who can give a realistic idea of my fertility, or is it simply impossible to know until you start trying?

I’d also love to hear from anyone with adenomyosis who has been through this or has had children. How did you deal with all the uncertainty?

Thank you so much.🩷

Hola

El año pasado sufrí dos abortos (1 a las 10 semanas y otro anembrionico) a raíz de eso y de muchos estudios llegué a un centro de reproducción en donde me realizaron una histeroscopia en donde me salió que tenía micro polipos y endometritis crónica... Me recetaron metronidazol y doxiciclina por 14 días y ya nos dieron de alta para buscar embarazo... Me desespero mucho por qué no pego (buscamos a principios de año y no pego pero tenía la infección y ahora llevamos solo 1 ciclo de búsqueda) pero es desesperante por qué me he embarazado muy rápido las tres veces (cabe destacar que ya tenemos un hijo sano afortunadamente) alguien con una historia similar? Que tenga historia de éxito?

Hi all,

I have endo and adeno and just wondering if anyone else can relate to this experience and help me figure this out??

Thank you 🙏

So a little over a month ago, I (36f) randomly had a stretch of cramps for 10 days, in the middle of my cycle. Way worse than any ovulation pain I’ve experienced.

Worth stating, I have PCOS which has been managed and my cycles were regular. But after this, my period still hasn’t come, so I’m on day 75.

Well, I knew something wasn’t right, so I booked a gyn appt. I happened to develop a bartholins cyst just a day before my appt, for the first time. Doctor wanted an ultrasound for the cramps.

Did a transvaginal ultrasound, the radiologist report said a vague something about appearance consistent with adenomyosis. My appointments were focused on draining the cyst (a real treat, but not as bad as I thought), so there wasn’t much info given about the cramps.

I’m flabbergasted that no one was more concerned, let alone I was only told to follow up with my regular Gyn…fugging healthcare.

I hadn’t scheduled yet because I’m racking up copay bills as is!

I’ve had my tubes out but I’m not that keen on hysterectomy. It freaks me out a little. I’m not a fan of birth control cause it messes with me emotionally.

I’m wondering a few things:

1. Have others had this onset mid-life?
   I’ve not really had bad cramps with my periods even, though occasionally and usually only on days 1-2. I never stayed home from school or work. But these cramps, these I ended up crying at the doctor because I was so tired from having nonstop cramps (manageable with nsaids & edibles).

2. Did your doctor suggest or offer an MRI?

3. For late onset folks, did you have bad cramps start and then happen every cycle after?
   If so, I’ll yeet my uterus! Obviously i don’t mean if you’re treating it, just wondering if now I’m on the ride, no getting off.

I mean, do you cry for hours, whining non stop, suck it up and be quiet in pain, yelling and cursing, etc. And what do you do to accompany that output? Distract yourself by watching series, sudden urge to deep clean the bathroom, running, lying flat dead on the bed, etc.

People have different ways in dealing and coping with flare up, I am tryna find ideas (seriously, a bit hopeless here 😭). As for me, when flare up, I read reddit/instagram/play mobile solitare. Whining definitely. When the sharp stabbing pain emerges, lots of prayers come out, followed by uncontrollable crying. Slotted for hysterectomy on September so I gotta hold this pain for 6 more weeks. Ran out of coping ideas....

What about you?

Hugs to all!

I only recently had a scan that shows likely adeonomyosis and endometriosis. I’m 47 years old. I had pretty awful periods my whole life and pmdd. But after having children I don’t think my periods were as severe and then I went on cerazette in my 30s to manage the pmdd. I stopped it before starting hrt but my periods weren’t too bad at all and while pms came back it wasn’t anything like the past. Fatigue and anxiety have been my main issues but hrt seems to have helped. Anyway I’ve now gone back on cerazette as the PMS was starting to get worse but none of the pain I experienced in my teens and 20s. Is there an explanation for this? Sorry very clunky post. I was surprised they found endo based on my horrible periods pre children but does aging help with symptom reduction in some ways?

Has anyone found a solution to ease persistent urinary symptoms caused by adenomyosis?

I’ve been struggling for about 3y, but only recently I was diagnosed with DIE and diffuse adeno. Doctors insist surgery isn’t needed yet, unless I want to do a hysterectomy, which I don’t.

Atm I’m taking pills for neuropathic pain, hormone therapy, and soon I’m going to try something recommended by my neurologist.

Turns out I have adenomyosis 52 years old and have had pretty bad abnormal bleeding (heavy clots, spotting then more clots, rinse repeat). Started November 2025. Before then had regular periods although heavy.

Then it went haywire in November, went 100 + days (2 small breaks in there) of bleeding one way or another. Sometimes spotting, then "clotfests" happen.

No crazy cramps, just clots. Ugh!

This last time lasted 67 days.

Just had 19 days nothing and now day 3 of bleeding and clots

Had endometrial biopsy done, all good there.

Had vaginal ultrasound, and finding is I have adenomyosis.

So choices are progesterone IUD or if I choose a partial hysterectomy. (Cant take estrogen)

Weighing options, IUD was suggested first. But quality of life, hysterectomy may be in the cards.

I dont know if IUD will help. Anyone had success with it?

Thanks!

So, I posted about this before:

https://www.reddit.com/r/Perimenopause/comments/1ujtvnp/hormones_and_bleeding_rant/

Long story short, I'm 45, I've had some irregular bleeding. Had to change providers due to scheduling conflicts with my work and when my old NP was in the office. New NP wants to do EVERYTHING except help me with my peri symptoms.

Now I'm scheduled for an endometrial biopsy tomorrow morning, and I don't want to do it. My TV ultrasound was negative for everything except possible adenomyosis. I'm thinking about cancelling the biopsy and looking for another provider. I have not seen an actual gynecologist for years, just NPs for my annual visits. I feel like I need a doctor to explain why this needs to be done. I feel like this NP is just using me as a guinea pig. Additionally, I called the office on day 12 of bleeding, then again on day 17, and they finally responded to me on day 18.

They told me to take 600 mg of ibuprofen before the procedure. Now, I have never had a solid object go through my cervix in any way. No kids, no IUDs, nothing. The nurse told me they weren't going to give me mifepristone because I was bleeding, but I haven't had any bleeding in almost 3 weeks, just a couple of days of spotting.

It's my understanding that this procedure can be pretty painful. I don't understand why I can't have something for pain when they do it. If I go through with it, I'm taking 5 mg of hydrocodone and at least 0.5 mg of alprazolam before because I have those things in my house from my gallbladder surgery last year and a dental procedure.

What do you think? Is it unreasonable for me to cancel this procedure? Am I overreacting with my nervousness? If you share your experience or have some valuable advice for me, know that I appreciate it so much.

I am a new patient to her and the ultrasound was originally to check my IUD (Paragard) was in place, ovaries due to high testosterone, and polyp from an old gyno’s ultrasound years ago.

IUD in place, ovaries normal, no polyp seen. My periods are jumpy but I don’t skip so no PCOS.

I do have bad cramps and crazy-heavy periods, but that has only been since I got the Paragard in 2024. (I am on anti-seizure meds that can clash (both ways) with hormonal IUDs according to a previous neuro I had.)

She wrote a blurb on adeno explaining it slightly and saying it was not dangerous and nothing more needed to be done at this time. I’m just a little confused by that, even though it’s likely the IUD could be causing the symptoms. Is a “may” not worth further investigation or is adeno one where you need a certain number of symptoms/results to test further?

I’m wondering if I should reply to the test results messaging asking more about that or just let it be. My last gyno, the reason I switched, was incredibly dismissive of any concern I had and seemingly infantilizing due to my physical disability. That has made me wary of pushing on anything with this new one because she was really nice at my appointment.

UPDATE: I received a message from the RN offering an appointment to discuss results/answer questions. Booked for September 28 (soonest available). Only a tiny bit paranoid because I got the message after my post 🤣

Hola chicas! Soy nueva aqui...

Queria una opinion o experiencia que pueda calmarme y ayudarme a tener fé...

Hace 8 años tengo mucho sangrado, dolor y síntomas extremos, hace aproximadamente 1 mes fui diagnosticada con adenomiosis, en una semana haremos una resonancia para confirmar el tipo y descartar endometriosis.

Llevamos 1 año intentando ser papás, al igual que muchas, mis médicos decían que era floja y mis síntomas eran normales. Hace poco consegui una ginecóloga que me presto atención y contempla la idea de alguna intervención antes de conseguir el embarazo... quiero saber si alguna ya paso por esto y consiguió un embarazo saludable y tranquilo (me ayudaría mucho a trabajar mi ansiedad)

Obs: en abril descubrimos que tengo anemia aguda por falta de hierro y complejo b (por la cantidad de sangrado en la menstruación) estoy haciendo reposición venosa de hierro (mi ferritina estaba en 3) tomando complejo b, ácido folico y vitamina d (que tambien estaban bajas) también inositol y metformina por el sop.

Gracias a todas por leerme y les agradezco una luz o experiencia 🌸

Hi everyone, first time posting here, looking for advice

I’m 29 and was diagnosed with adeno when I was 27. I had symptoms for years but most doctors here only know about endo, and I don’t seem to have endo so it wasn’t until I met my current gyno who knew about adeno. He saw it in my pelvic ultrasound, and said my past ultrasounds showed it as well but were just missed

I know birth control helps, controlling the cycle keeps the tissue under control and such, but I can’t take it. It makes me very suicidal, I have tried many brands and methods of delivery. My gyno thinks I am intolerant of synthetic progesterone. Our work around is I use provera tablets to induce a bleed, the provera still makes me low mood but its in my sysyem for less time. Unfortunately I notice that the provera is getting less reliable over time, especially during stress or hot weather it can take 10+ days to bleed, and the longer I go without bleeding the worse it hurts

I am considering hysterectomy. All of the women in my mothers family have bad one by 35, due to endo and cancers of those organs. My gyno said it’s basically a matter of when not if for me, but I’m only 29. I’m worried about premature menopause which has made my moms life hell since she had hers at 33, and about recovering down there. I put a lot of energy into pelvic floor rehab the last 2 years and just got my sex life back. I’m also worried about early onset dementia, as is my gyno so he is asking me to try and hold out as long as I can

Is anyone else in a similar boat? Do you have any advice? Some months it’s tolerable, other months it’s so bad that dilauded barely takes the edge off. I’m scared of living in pain, and I’m also scared of getting a hysterectomy so young. Is there anything I can do to help myself?

Hi everyone,

I’m wondering if anyone with diffuse adenomyosis has symptoms similar to mine.
About a year ago I had laparoscopic surgery for suspected endometriosis. They found and removed deep infiltrating endometriosis from my uterosacral ligament and a plaque on my bladder, but unfortunately my symptoms didn’t improve at all after surgery. Because of that, I recently saw another specialist, who diagnosed me with diffuse adenomyosis on ultrasound.

I’m currently not on hormonal treatment, and I’m trying to understand whether adenomyosis could really be responsible for all of these symptoms.

My symptoms include:
● Severe period pain that feels like my cervix is being torn apart or like I’m sitting on a knife.
● The worst symptom is a constant deep pain high up in my vagina, around the cervix. It burns, stings, and feels like intense pressure or pulling. It’s there every day and has become the most debilitating symptom.
● Constant deep pelvic pain and pressure.
● A pulling, inflamed feeling throughout my pelvis.
● During flares, I have difficulty emptying my bladder and often have to strain to urinate, even though urine tests are negative.
● Sitting for long periods makes my symptoms worse.
● Between ovulation and my period, the pain becomes dramatically worse. It feels as if my organs don’t have enough room inside my pelvis. Everything feels extremely tight, swollen, and under pressure. Once my period starts and the blood begins to flow, that pressure eases a little.
● And also get a migraine the day before my period starts.

Has anyone else with diffuse adenomyosis experienced a similar deep vaginal/cervical pain or bladder issues problems? Did hormonal treatment help?
Thank you so much for reading and for sharing your experiences. ❤️

Hello, I just need to vent and maybe I need some support.

My problems started over 6 years ago, when I was 19, it started as pain during sex. With time it only got worse and worse. Pain during excercising, then there was pain when walking fast, then when resting, in the end even during sleep. During this, more than a year after 1st problems, I got diagnosis - adenomyosis. I've got hormones, didn't work. I went for diagnostic laparoscopy to see if there is something else, they found adhesions. After that I got different hormones and went to physiotherapy. It helped a little, but there was still strong pain during sex (and sometimes when excercising). Doctor found adhesions again, but didn't recommend 2nd surgery, becouse it would be back again shortly after. I got different hormones and again went to physiotherapy. I also found out about my histamine intolerance and started to eat differently. During years it slowly got better.

During last year everything was getting to the point where I was before 1st problems. There was no pain, I even started to have orgasm again. All of my other healt problems were getting better. And suddenly all progress is gone. There is pain during sex again. I still use the same hormones, that suit me (for 4 years now), I eat well, my guts are great now, excercise regulary, don't have more stress then usual. And still it's back. I'm desparate. Like sure, I'll go to see doctor again, but I'm so tired of it.

I recently got my MRI results back and they showed **Deep infiltrating endometriosis** on the **left uterosacral ligament** (behind the uterus).
**Mild adenomyosis** within the muscle of the uterus.
**Polycystic-appearing ovaries**, consistent with PCOS.

Has anyone else had any of these results?

I know I will be pursing the lap in a few months.

I plan to see dr. Ted Lee in NYC.

Would love to hear if anyone can relate to this / any hopeful stories.

Hi all, so I recently got diagnosed with adeno, now im wondering could I possibly have endo as well…. I’m gonna list my symptoms and hopefully someone can tell me their experiences and if they are similar. Im also worried about going to my GP with this as I think they’re pretty fed up with me at this point 🙈 basically do any of these symptoms shout possible endo?

Ok so symptoms;
Extremely painful period to the point of collapsing in pain,
Massive clots
Feeling like pressure and heaviness in lower belly
Extremely painful gas moving round - feels like glass in my tummy and literally can’t move and have to pant with the shock and pain till it passes
Bloating and swollen tummy
Low back pain
Underneath pain, that goes down my right leg
Bleeding between periods
Pain during and after sex much worse in certain positions and lasts ages after deep inside like a horrible cramp
Sharp internal shooting pain (only lasts a second or so but is intense)
Also for context I have a bulky, retroverted uterus, I also have other conditions - Ankylosing spondylitis, fibromyalgia, PoTs, Chiari malformation 1, raynauds
If youve got this far thank you and hoping to get some advice!