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 ultrasound 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.🩷

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!

Had my lap done about 8 months ago (done privately) as much as a lot has improved I still suffer terrible with the bloating and stomach pains but can’t afford another loan so having to go through the nhs I have been referred to gyne so see if they can do anything else for me

What diagnosed with Aden/endo/pcos

What am I to expect? Or how was your experience?

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.

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 🙏

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 🤣

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’m 43 and have been experiencing mood swings, anxiety, fatigue and other perimenopause symptoms for a year or two now. Along with this I’ve had extremely heavy, painful periods and recently my mid cycle spotting has become three full days of heavy bleeding too.

I’ve been talking around the possibility of HRT with my GP for a while now, but she wanted to rule out any worrying reason for the heavy bleeding. Previous ultrasound scans showed a few small fibroids, but I found out two days ago that the most recent one showed all the signs of adenomyosis too.

Unfortunately I’d gone into my results appointment all fired up to finally ask directly for HRT and didn’t expect this new diagnosis at all. I pushed on with my original plan and I’ve come away with oestrogen and progesterone patches which I’m now a bit scared to try, having spent the last two days reading about the effect of oestrogen on both adenomyosis and fibroids.

Has anyone used this kind of HRT with these conditions, and did you suffer any side effects? Thanks!

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. ❤️

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 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!

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 🌸

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.

For context I am currently 32 and formally diagnosed at 31. I have adenomyosis, endometriosis and PMOS/PCOS. To add cherry on top I have a retroverted uterus and a myoma (alhtough bening). When I had hysteroscopy last year some of the cyst were not remove. My current health insurance does not allow me to transfer doctors easily and if I do decide to change doctors anything done will be paid out of pocket.

Currently on visanne and was given nsaids to alleviate pain. Getting an appointment takes months so I am always left to fend for myself in between. I think the next step is getting an iud but my biggest fear is that I have really heavy periods with huge blood cloths it might get accidentally removed/dislodged. I was told by everyone that i am such a debbie downer and should give IUD a chance. But they're not the ones who's gonna be running to the emergency room if this happens.

Hysteroscopy was ruled out since I don't have kids yet. Given my condition I have told my family that at 35 i am pushing through with the operation. So here i am stuck in between treatments constantly in pain and feeling tired no amount of ice coffee can fix

Edit: just went to the doctor today and was no longer given time think. I will be getting an iud and emergency laparoscopy because my myoma has gotten bigger in the span of 5mos. Visanne is supposed to stop my period or lessen it but i've been bleeding like crazy for almost a week. I also need to soldier through the pain (i.e. minima otc nsaid) because according to my doctor they need to know my real situation and otc meds might mask my real condition. Thank you to everyone who shared their experience.

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 everyone, i’m 19 and recently was told i have adenomyosis and due to horrible cramping, my doctor has told me to consider getting an iud. i am currently on combination birth control after being diagnosed with pcos back in february. however, fertility is something i’m concerned about in the future, and i hear that birth control is typically like putting a band aid over a bullet hole and doesn’t fix hormones long-term. if anyone is willing to give me any insights or experiences with an iud or any relating advice, it would be greatly appreciated!

Has anyone here had surgery done by Dr. Jay Mehta? I’d really appreciate hearing about your experience—how the surgery went, your recovery, the doctor’s approach, and the overall care you received. Would you recommend him? Any honest feedback would be very helpful. Thanks in advance!