I wanted to share my experience and see if anyone has gone through something similar.

I haven’t had my period for four months, so on the third month, I started taking multiple pregnancy tests—some came out positive, while others were negative. Confused, I went to my OB for a check-up. She did a transvaginal ultrasound, but there was no sign of pregnancy, only cysts on both ovaries. Turns out, I have PCOS.

She prescribed me pills, and after finishing the last one, I finally got my period. However, the first day was incredibly painful—so much so that I was crying and had to take pain relievers. Then, out of nowhere, I passed an unusual clot that looked different from what I’ve seen before. It had white circular patterns, which freaked me out. I sent a picture to my OB, and she immediately requested a biopsy.

I went through with it, but while waiting for the results, I made the mistake of Googling. Now I’m worried because I read that menstrual clots aren’t typically used for endometrial biopsy. Has anyone had a similar experience where their menstrual clot was successfully tested? I’d really appreciate any insights.

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Ever since my very first period at 11 I've had irregular cycles and heavy periods. I remember they would last up to 3 weeks.My periods have lasted up to months in previous years. I sometimes even go months without having one. When I was in my teens my doctor would tell me to lose weight. Until my late teens when my period lasted for 3 months. I got medication that ended my period and I was put on birth control. I was tested and nothing came back I was normal. I even got an ultrasound to check for polyps and cysts.. also nothing! I've been dealing with my crazy periods since I could remember and its rare when my period is not crazy. Recently my period has been lasting for about a month. It goes away for a few weeks ( I sometimes bleed between periods or after sex) and comes back strong with clots. Which has caused my iron to drop.. again I got tested and nothing... I'm normal. I was prescribed Tranexamic Acid to help my bleeding... it calms down my period or the 5 days I take it but doesn't end it. IDK what to do anymore... It's frustrating. At this point maybe I should get on birth control. I want a baby soo bad though. And I feel like getting on birth control will stop that from happening to me soon. This whole situation makes me so sad. I'm so over it.

Hello everyone! I was diagnosed with adenomyoma last year, but my uterus was still a normal size at the time. I’m going to see my doctor soon to check on it again. Is there an optimal time in my menstrual cycle to have an ultrasound?

When I was diagnosed last summer, I was on the first day of my period, and the adenomyoma appeared much larger (2cm to 3cm) compared with six months ago when my doctor thought it was a fibroid. Since the uterus naturally enlarges before a period, would adenomyosis-related tissue also inflame and grow with it? I’m not sure if that makes sense. My doctor mentioned that surgery is needed if it reaches 5cm, but even then, surgery may not be effective. I’m scared.

On another note, I might start seeing someone soon. Should I tell him about my adenomyosis on the second or third date if things go well? We met online (not dating app), and I know he wants children. Honestly, with the cramping pain I’m experiencing right now before my period, I’ve lost interest in seeing him altogether.

Hi everyone, I’m 23 and have been struggling with pain during sex for years. I’ve undergone pelvic floor therapy, had ultrasounds, and multiple swabs to rule out infections, but I still haven’t found relief. Today, I was diagnosed with a bicornuate uterus and adenomyosis.

I’ve always experienced pelvic pain, breakthrough bleeding, and frequent discharge. I’ve been on birth control for over eight years, and while I haven’t had major issues with it, I do struggle with a low sex drive.

Does anyone have advice on how to manage the ongoing pain and discomfort? Are there any treatments or lifestyle changes that could help?

I’m going through IVF and after 2 failed rounds my dr investigated and has diagnosed me with “severe” adenomyosis.

She’s given me a Zoladex implant with the goal being 3 months (if I can tolerate it) of hormone suppression/menopause to hopefully let my uterus and adeno (and possible endo) get back to as close to nil as possible. Then we’ll try again with another round of IVF.

I’ve only just started with the Zoladex. She’s given me a script for HRT assuming I’ll need it.

Anyone have experiences they can share?

My gp has just informed me because of my age (28). I will most likely be rejected on my hysterectomy. She almost insisted I get the depo shot instead. I explained that my previous experiences on birth control (bar and pill) I have had no good experiences and bleed heavily without stop.

I am wondering what peoples experiences are with the Depo shot instead of hysterectomy? Or any advice on how to be approved for a hysterectomy when they think you’ll want more kids one day.

Hello fellow warriors! I need some support or clarification, I am 31, and have had a terrible journey with my periods since day 1. I recall being balled up on the floor with the stabbing period cramps at 12, and being told it was normal. At 15 I had such severe periods I would bleed through a tampon, diaper like pieced together giant pads, and 5 layers of clothes in an hour. I’ve been on and off oral BC since with Periods that are always heavy and painful and about every 3 years get unmanageable. I was misdiagnosed with fibroids about 8 years ago.

Recently I tried getting an IUD put in and they went to put it in and said they were very concerned about infection (or course nothing showed up). My doc seemed to think there was nothing to that- she basically said they were overly cautious but the look on their faces said otherwise, they weren’t putting that thing in! But she has obviously brushed it off.

We then did the MRI which showed ando. Which, my doc explained poorly and said unclear on pregnancy outcomes and to start continuous BC or get IUD (from her) (it was the same clinic that tried the first time just diff doc). There was no ability to discuss hysterectomy which seems wrong to me?

I am now doing the continuous BC because my periods were too heavy to control but been lightly bleeding now for 2 months with cramps on and off. Not keen on trying another IUD. I’d like a hysterectomy, but that was dismissed. What do I do? Have you had continuous spotting on continuous BC? I just want this to be over. I don’t want kids etc.

Sorry for the long post! I just need some insight from those who gotten a hysterectomy. I have struggled since 2008 with painful periods, intercourse, ovulation, and cysts. In 2009, I had an ovarian cyst rupture. It was so bad I was bleeding internally (1 liter of blood inside my body) and it almost took my life at 19 years old. During that surgery, they had removed my right ovary, fallopian tubes and appendix. After years of being brushed off and just told to take birth control, I finally had an OB who took me seriously. She apologized for all that I had been through and I finally got a sense of relief. It was in my medical records that I was suspected to have endo, but could not confirm without actually going in and looking. She set me up with a referral and I had a diagnostic laparoscopy in May 2024. After surgery, the surgeon confirmed I had adenomyosis diagnosis. I was told that although birth control good help with how heavy my periods were, the pain I feel would only truly be resolved with a hysterectomy.

Children was something I always wanted for my life. I was able to successfully get pregnant with my son with only having the one ovary. It was a desire of mine to have another child, but unfortunately after 8 years of trying I have been unsuccessful. Now I am divorced and will soon be 35 and another child does not seem to be in the cards for me. It's a huge decision to go through with this surgery but I am so tired of living in pain.

For those of you who have had a hysterectomy, do you regret it? Did your symptoms improve or did you notice a difference in how your body felt or looked? TIA for any insights!

I am always bleeding. Seeing the doctor Tuesday so I’m hoping he can do something.

Does anyone else have pain after sex? Sex itself doesn’t hurt at all but sometimes afterwards I have AWFUL cramping - almost like really bad gas pains- that last for hours. I am newly diagnosed and am wondering if this is related to adeno. Thanks!

I’ve been trying first 200 mg bio identical vaginally /rectally increased to 400 . I have less pain but still too much (bleeding also really decreased ). Birth control gave me more pain and I can’t take it mentally

What are your experiences with P ? Which dose did you get ?

Do you know of any studies cause I can’t find them . Or doctors who know more about it who don’t charge a huge amount . Officially P is not indicated for adeno / endo so I can’t go up in dose

Also considering embolisation . Ryeqo/myfembree is another option but I don’t feel great about entering menopause plus messing with progestin again Experiences welcome .

I (F40) finally got my diagnosis after fighting for a diagnosis for the last 4 years, I have been gaslit, fat shamed etc, I was due to have an appointment 2 weeks ago which was cancelled/rearranged a couple of times and then was re arranged for Tuesday with a different consultant and I could’ve hugged him!

He took his time to listen to me and my symptoms; and then explained the difference between endometriosis and adenomyosis and then explained the treatment options.

We both decided that the progesterone pill would be the best place for me to start as I did not want the coil.

And all being well at my 6 month check up; he will refer me for a laparoscopic partial hysterectomy (he’s old fashioned and does the old slice and dice 😂😂) which I have also been fighting for. Now I can look ahead and put things in place for work when I’m at my worst

my period has been so strange lately, last month i was bleeding very heavily & my period lasted for 7 days (usually lasts for 4-5) but this month i got it & it was lighter than usual and i completely stopped bleeding after 2 days. does anyone else have period abnormalities like this?

I'm 31F and I''ve been diagnosed with adenomyosis for three years. In 2023, I went on the Kyleena IUD and that more or less stopped my periods and most of my significant adenomyosis pain and symptoms (I still had some pain during my period time and after sex).

This month I noticed my period came back. It was light but it was my typical length before I got my IUD. I also had severe acne before and during my period. Now, I'm currently ovulating and I'm constipated with back pain and I'm getting the intense shooting abdominal pain. These were all my usual adenomyosis symptoms before I started my IUD.

I understand that adenomyosis is a progressive condition so I'm wondering if this is just a sign that it's getting worse. I'm also wondering if my IUD has a problem, after all it's supposed to be effective for five years.

I know this is reddit and no one is giving medical advice but I was wondering if anyone had a experienced a similar onslaught of adeno symptoms after managing with an IUD. I also want to check here first before I go through intrusive testing and medical professionals who rarely understand or care about anything related to the uterus outside of pregnancy.

Hi. Anyone with localized adenomyosis can please describe their symptoms?

I am now 40 and I am getting confused with so many symptoms (pains, fatigue, urinary changes etc).

More recently I started having hot flashes and I am just questioning if actually my problem is the perimenopause starting?

Thank you 😊

Each month the first 3 days before my period suck. I get spotting, cramps, nausea, pain, headaches, irritation without fail. The first two days are always rough. But I think that some months are much more tolerable than others. This current cycle I had two days of intense stabbing pain in my left abdominal and now symptoms had mostly subsided and now I can push through with regular life relatively easily. Other months, I get intense nausea, intense pain, intense bleeding, etc for 7-8 days. to the point where I can’t carry on. Where it’s difficult to even raise my 3 year old son. To the point where I don’t know how I could ever go back to work full time which is really want to do.

I have a second ultrasound today while menstruating (yay 😅). I just sometimes feel like it’s in my head. My first ultrasound pointed to some possible signs of adenomyosis. I have an ovarian cyst on an immobile ovary, a fibroid, several cystic spaces on my endometrium with the largest cyst likely being subendometrial. My uterine fundus is bulky. When I look this up all signs point to adenomyosis which gives me a sigh of relief that I’m not making this all up in my head. Buuuut then I have a relatively “calm” menstrual cycle and I start to second guess it all.

If you made it this far, thanks! My question is: is it common to have the occasional “calm” period cycle where your symptoms are mild?

For example, I completely changed my diet. I removed alcohol entirely a year ago and feel like it helped some. We went on holiday and a week before my period I decided to enjoy one drink a night and that resulted in the WORST period of my life. Intense pain, blood clots dropping out of me, feeling faint, and a weird symptom where, on the plane ride home, if I sat down for too long I felt like I was going to be sick. As soon as I would stand up and move around a bit the nausea disappeared. So I assume that drinking alcohol triggered inflammation or something to make my symptoms unbearable.

Thanks for reading ☺️

Have y’all found any good supplements or anything that help with brain fog? I am STRUGGLING 🫠

Had a pelvic ultrasound about a month ago and it showed an “inhomogenous myometrium” that my obgyn didnt mention. I called her office to ask what it meant because when I google it says it’s likely adenomyosis. Her assistant answered the phone call and I asked why it had been missed and what it meant and she said that it’s normal and it can happen when you have periods and then it will go back to normal. I asked to speak to the dr again but she told me I’d have to pay for another visit which I don’t want to do because she no longer feels like a competent dr. Am I crazy or is it possible for the myometrium to be inhomogenous solely because of a period? Adeno seems to fit with all the symptoms I have

Ended back at the doctor today and he did an ultrasound confirm a large cyst on my left ovary and that my right ovary was in an odd location. Thus my pain and bloating issues.

The appointment ended with me being booked for a Laproscopic Excision of Endometreosis, robotic assisted LAPAROSCOPIC hysterectomy bilateral salpingectomy cystoscopy

April can’t come soon enough!!

Adeno/Endo feels like 3-5 of those in your abdominal cavity at once. Except the gripping part is made of knives, and they actually grab onto things, really hard.

Today's been rough.

Hi all! I was diagnosed via TVUS in December 2024 and it’s kind of life-changing to finally get an answer after bringing up my pain issues to every OB for 15 years. To keep this brief, my OB is awesome, he has a ton of experience (hence, finally getting a diagnosis…I had never even heard of adenomyosis but it explains so much), and he has no problem with me getting a hysterectomy, including removing the ovaries. I have to get an MRI late Feb to look for signs of endo too, and then we have an appointment mid-March to plan it all out. Based on current surgery wait time it will likely be August/September when I get the surgery.

I also have a debilitating chronic illness called myalgic encephalomyalitis, which basically means my body doesn’t make energy correctly, negatively impacting every system of my body bc there’s not enough energy to go around. Think of me as a phone that never gets past 10% charged, no matter how many hours I’m plugged in, and I’m usually stuck at 2-3%.

I know my surgery will cause a spike in chronic illness symptoms and the chronic illness will make recovery harder than for the average person. QUESTION: What do I need to know/expect about recovery?

I will definitely be going on HRT. This is something we will discuss when the surgery gets closer. QUESTION: Anything I should know or ask about regarding HRT?

Really anything else you think it would be worthwhile for me to research, prepare for, etc. or things you wish you had planned for or knew about before your hysterectomy would be welcome. Thank you!

Hello there,

This is my first post here. I am 50, in perimenopause, and last year an Obgyn saw adenomyosis on ultrasound. I have had terrible bleeding for the past few years and also symptoms of endometriosis. I was prescribed the Slinda (Slynd) progestin only pill which I've been on for half a year. I occasionally feel my ovaries working and had mild bleeding (rather erratic) a few times.

Yesterday I had my bi-annual ObGyn check up and the doctor I was previously seeing left and seems to have quit the profession. So the elder obgyn saw me. She said that she would have never prescribed Slynd because I have migraines with aura and I am also overweight (BMI 29). The WHO would advise against it because of a high risk of strokes. She strongly recommded a Novasure Endometrial ablation. I said I was scared because of my adenomyosis and she asked why I am not scared of strokes. In the end we agreed that she gave me a prescription for another half a year of Slynd and we'd discuss the options in summer.

Of course I am scared of a stroke. If I knew my bleeding stopped in, say, a year, I'd just white-knuckle through it. I do not want a hysterectomy if avoidable.

I just have a gut feeling that having my uterus lining singed will do nothing for my pelvic pain etc, and doing a quick search both on here and Google confirmed my suspicions. Trapped blood and endometrial tissue in the walls of the uterus doesn't sound appealing. But why did the obgyn recommend it despite my adenomyosis?

Any thoughts?

Hi,

I’ve been having increasingly weird feelings/pains. It’s led me to an adendomyosis diagnosis via ultrasound.

Today it’s weirder. Has anyone experienced bad constipation, random needle prick like pains in the uterus or cervix area, and a feeling of fullness or slight falling of stuff in the vaginal cavity? I can barely button my pants.

I’ve been diagnosed with severe adenomyosis which was unexpected but isn’t a huge surprise.

I have painful periods but not to the degree that I thought was an issue - I have to medicate and I’m uncomfortable and tired, but I can work my desk job fine. I am experience recurring iron deficiency linked to my periods so have to be on BC or receive regular infusions. I do have some other health issues but I’m not sure if they’re related at all.

I’m learning about adenomyosis and was wondering what other kinds of symptoms (if any) you experience outside of heavy painful periods.

Hey everyone,

Ive been suffering with adenomyosis pain for 15 years, the past years its completely disrupted my life. I take BC but my sweet womb continues to cramp and I would be on the bathroom floor 2-6 times DAILY with a level 9 pain. It was absolutely totally horrendous.

I tried pain blocker shots, amitriptine, constant naproxen, TENS, endless heating pads, cbd suppositories - but nothing really worked. (the cbd suppositories worked deent but would wear off quickly)

2.5 weeks ago my shrink put me on Wellbutrin (bupropion) 150mg XL. Day 5 I noticed I could still feel the cramps but the pain was only a level 5 at most. Day 10 all pain was gone. Gone. 100% gone. I can feel light cramping but there is zero pain.

Even though nobody prescribes wellbutrin for pain, theres actually several journal articles mentioning that it can work really well for neuropathic pain.

So.. i hope this helps out anyone who needs it.

Love.

The other day I stumbled upon a couple of old medical reports that I’d forgotten about. In 2019, I had an MRI that came up with focal adenomyosis in the fundus uterus. I’ve had a laparoscopy and ablation of endometriosis since, but after my surgery in 2022 they said that my uterus appeared to be fine. They thought I must’ve had a “weird cramp” during my MRI…

With all due respect, I am not buying any of that BS. I’ve had two more MRI’s since 2019, neither of them reported any signs of adeno (but they have now found bilateral endometrioma’s and indicated DIE on my uterosacral ligament). During my most recent TV ultrasound, my doctor mentioned I have “irregular/asymmetric thickening of the endometrium” which could point to adenomyosis after all. They weren’t concerned by any means and also didn’t think it was anything worth further discussing.

In other words, I am confused. One moment I definitively have it, the next I don’t, but at the same time it is a very real possibility?!

Has anyone had this happen to them?

Hi all, I have adenomyosis and fibroids and I’m 47. I had the initial consultation where I was given options the last being hysterectomy. I have discussed this with my doctor and we have concluded that the hormonal treatment is not suitable for me and that it won’t get rid of the heaviness, discomfort and fatigue I’m experiencing daily. I am currently on sick leave due to the pain and anxiety. I am now waiting for another appt with gyno, but I’m so scared I am going to be refused a hysterectomy but feel this is the only option for me. Has anyone else had a hysterectomy without trying all of the other options? As I mentioned I’m 47 and have never wanted children.

I have always had very painful, long, heavy periods. But since coming off of the contraceptive injection around 7 years ago my ovulation pains have become more and more unbearable too. Had an ultrasound done last year, ‘heterogenous myometrium’ was mentioned in my report, gynaecologist never said a word about it and sent me on my merry way with the lo loestrin fe pill which made me bleed for a month solid (+period pain every day) when I called to mention this the dr didn’t even speak to me, a receptionist relayed a message that was essentially ‘oh well’. Feeling defeated and dismissed I stopped taking the pill and just carried on in pain. Through my own research I found that heterogeneous myometrium could be indicative of adenomyosis? Anyway, that’s how I’ve landed here, now for my question… Does anyone else experience intense bladder/ovary pain when peeing during ovulation? Like having to bite something and cling to the walls type of pain? I don’t have like a burning feeling or uti type pain, or any pain in my urethra. The pain is a severe stabbing/pulling pain higher up. The pain is there throughout ovulation but is particularly intense when peeing. Anyone else? Does this warrant further investigation? I’m no good at standing up for myself in these situations, but I feel like this just isn’t right. Plus I really am in agony.

Thank you anyone who read this far ❤️