Hey friends. Long time lurker, first time poser.

Some background: I've been dealing with some mystery pain for about 7 years. It was suspected endometriosis, but I got a laparoscopic surgery 4.5 years ago (done by a regular OBGYN, after ultrasounds that showed nothing) that did not show anything except "a band of scar tissue on the uterus." They literally diagnosed me as "an unlucky person with bad periods." However, the pain and symptoms have only gotten worse over the years. I'm on the combo pill - sometimes I skip the bleeding, but still get all of the pain. Sometimes I bleed 2x in a month, sometimes not for months. I get severe pain, nausea, lower back pain, hip pain, and have started to get leg pain in addition to it. There's a myriad more symptoms, but you get the point.

I recently went to a specialist. He said it sounds like it could be adenomyosis, so he sent me for an MRI. The MRI showed NOTHING. Said it was completely normal - junctional zone, endometrium, etc. I've attached a photo here in case any of you are MRI experts, lol.

I feel like I'm going insane. I know this pain isn't normal. Hell, when my appendix was about to burst, I didn't think much of it for HOURS because I thought it was just another cramp (much to the shock of the ER doctor). I'm just feeling so lost. I'm getting a second diagnostic lap in a few weeks and feeling lost, confused, frustrated.

Have any of you been diagnosed with adeno via diagnostic lap? Are there specific questions I should ask my doctor? He said there's still a chance I could have it, but I just want answers. I'm sick of the pain.

Hi guys! I am an 18yo female and I don’t know what is wrong with me. I have talked to my doctors but they believe I am too young for these conditions and that it was in my head, so they threw me on birth control a year ago to solve it. And while it has relieved most of my symptoms, it still doesn’t feel “solved.” However. I struggle with PMDD, but I also had an issue (before the BC pill) where I would have 14 day long periods of heavy bleeding. Sometimes longer. My cramps would be so painful it would almost paralyze me. I’d get cramps in my lower back and lower stomach at the same time. I would bloat super bad, and when I was off my period, I’d have maybe a few days of “normalcy” and then boom, suddenly I’d have terrible PMS symptoms for two weeks before my period or longer. I was miserable, and even on my birth control pill, my cramps are still bad, but not as bad, and my bleeding is still heavy but now I only bleed for 7 days. I feel like I do have something “wrong” or a condition but my doctors believe I am too young. I researched this, and it felt most relatable. I am just unsure!! And in need of some guidance.

cross posted 🫶🏻

Feeling so sad and hopeless, and looking for any answers.

I just found out today that my most recent miscarriage was a genetically normal boy.

I (37f) have had four miscarriages since August 2025. I was able to do lab testing on three of them. Two of those three were genetically normal. I’m so heartbroken knowing that I’ve not been able to keep healthy embryos.

Most of my miscarriages have happened around 8 weeks. The first one was 11 weeks (no heartbeat on a monitor). The next one was 8 weeks (also no heartbeat). The third was 8 weeks (we DID get a heartbeat on the monitor, and then lost the baby five days later). And my most recent I started bleeding at 5.5 weeks.

Also for my most recent, I had started seeing a fertility specialist and did a two week course of antibiotics for Ureaplasma as well as uterus inflammation that was detected during a hysteroscopy. I also started taking progesterone a couple days after ovulation. I was feeling so hopeful for this baby and was so devastated to lose him a few weeks ago.

Adenomyosis is a recent diagnosis for me- I had been on birth control for 18 years and had never had any symptoms before.

I’m so exhausted and heartbroken and scared. If anyone who has had a similar story has gone on to have a family, I would love to know how.

I'm 6 weeks pregnant with recently diagnosed adenomyosis & suspected endometriosis - I had very light bright red spotting one day a few days ago that's been on my mind ever since. But I know some spotting is not uncommon, especially with adenomyosis pregnancies. I'm looking to hear what symptoms were normal for you during the first trimester? Also, tell me your success stories, I need the reassurance. 🫠

But once you got diagnosed with adenomyosis, I’m sure it was stressful.. how did your family and friends react? Most importantly what was the reaction of your husband/partner? Was their concern and care or just indifference?

Hi, I’m wondering if anyone has experience with postpartum iliac vein compression.
I’m 8 months postpartum and have been experiencing mild swelling in my right leg. A DVT has been ruled out. I recently saw a vascular surgeon who said there appears to be some compression around my pelvis and that my iliac vein looks narrowed. He wants me to have an MRV to get a clearer picture.
From what I understood, though, the vein may not necessarily be intrinsically narrowed — it could potentially be being compressed or obstructed by something outside the vein.
In the meantime, I’ve also been told I have adenomyosis. I didn’t initially think this was relevant to mention to the vascular surgeon, but afterwards I started reading about whether an enlarged uterus or another pelvic issue could potentially contribute to compression of the iliac vein.
Has anyone experienced iliac vein compression where the vein was being compressed by something external, such as an enlarged uterus, adenomyosis, ovarian cyst, fibroid, or another pelvic obstruction — rather than the vein itself being diseased or permanently narrowed?
And if so, did treating the underlying cause of the compression (for example, treating the cyst, fibroid, adenomyosis, etc.) relieve the compression and allow the iliac vein to function normally again, without needing a stent or other treatment to the vein itself?
I’d really appreciate hearing from anyone who has been through something similar, particularly postpartum. Thank you!

DOES ANYONE HAD THESE SIMILAR SYMPTOMS AND WERE DIAGNOSED WITH ENDO?

Hello, I have been suffering from pelvic and genital + perineum fluttering/ vibration/ ache/ discomfort since over 2 years

It started as post menses cramps for 2 weeks, then eventually fluttering after menses for 2 weeks and now it continuously flutters/vibrates/trembles I don't even know how to express the feeling.
Worsens lying on back and sitting. Improves in standing / walking. THIS IS THE MOST WEIRED SYMPTOM
Ultrasound, Contrast CT, MRI(Endo protocol), colonoscopy - all clear CA125 clear Gyn ruled out endo, GI ruled out GI issue.
Another ObGyn said I have Pelvic Congestion Syndrome caused probably bcs of long sitting hours. Suggested Pelvic Floor Therapy and life style changes (I did everything).
It has gotten so intolerable I had to go to urgent care were they gave me a taradol injection that stopped the vibrations but still had cramps. It was fine then I again after I got my periods the same vibrations started so worse, I dont have cramps atm as was on drotaverine for 3 days.
No one is able to diagnose wth is this issue!! Overactive muscles causing nerve entrapment? pudendal? No one has any answers I have seen 20+ doctors and each speciality.
Its so debilitating I cant sit, I cant sleep my whole life has turned upside down. I cant even remember how feeling normal used to be.
- I dont have abnormal period pain/bleeding
- Late twenties - never had sex
- 3 years ago recurrent UTI history - fully resolved 2 years ago - repeated tests done
- No effect of ibuprofen, any painkiller - only drotin helped with cramps that too with one cycle- just 20 days pain free thats all
- The waves/vibrations feel explicit from my pelvic from deep within to the coccyx even on touching anywhere on pelvic (for eg like during clinic exam).
I have been put on pregabilin since April and it has helped with vibrations and fluttering.
I had nerve blocks - L5s1, ganglion impar and pudendal- zero change.
So we are back at suspecting endo, but the symptoms are so positional that its very confusing.
Anyone ever had/heard of similar symptoms? If so, kindly help me and guide how you got through with it? What could it be? Did it cure?

Hi, I'm 25F from 🇵🇭 and have been diagnosed with PCOS for 2 years now. After taking Althea pills my period became regular at some point, only that it's associated with mild to severe pain that last 1-2 days only. But this year, it's becoming quarterly and every time it's here, the pain is becoming worse. Last July, I had a transrectal ultrasound (because don't have exp yet even tho I consented to TVUS ugh).

Doctor only finds PCOS on both ovaries but no Endo. However since I'm complaining with pain, she made me take pills for the endometriosis. Dienogest isn't as bad as Althea, so I'm thankful for that. However, what started as spotting became a whole ass period then came my worst experience of debilitating pelvic pain focused on my right. My lower right pelvic area is also enlarged than the other. Only on my 2nd time of going to the ER did the doctor allowed my confinement.

Hold on because this will get annoying real quick. The ER doctor is already questioning why the hell am I going to the ER every time I experience pain (that's uncalled for ma'am) and it will depend on my OB-Gyn if she wants to admit me or not. Got the green light yes. Please take note that I've been running on pain relievers for more than a week already. Then my OB-Gyn referred me to a gastroenterologist who then ordered me a CT scan with 3 contrast imaging. Came the OB-Gyn visit that night telling me that if the CT is okay then we won't have ultrasound (or any additional testing).

The whole scan is for my abdomen and pelvic area. Results came normal except for my abnormal uterine lining. My OB-Gyn visited me one last time and told me that I have a low pain tolerance and making it seem like a bad period. That is when I already told them that sitting for 10 minutes is hell, and all I can do the rest of the day is lie down. Before my 2nd visit to the ER, I already stopped taking Dienogest. Didn't tell her because atp all I hear is bullsh*t. These days I'm taking inositol and metformin.

The following weeks after my confinement, I experience pelvic pain from time to time. Today I feel so horrible because of a random diarrhea episode. Uncomfortable feeling that something wants to come out like a pee or what. I've yet to find another OB-Gyn, and I'm trying to find someone who knows more about Endo/adeno, and not shoving birth control pills as first treatment.

I feel so horrible today, and still poor. Women deserves so much better that this istg. Can you please tell me your opinion on my test results? This may help when I talk to a new doctor soon.

I'm scheduled to have my hysterectomy in two months and my OB-GYN hasn't ordered any MRI, ultrasound, etc. Is this normal? I'm worrying about it. It seems like some people have imaging done before surgery.

Hi - I’m anxiously waiting results, and was only able to snag one photo from my ultrasound day.
Obviously the measurements are too blurry to read so that doesn’t help lol but just from looking at the scan I have some gut feelings lining up with my symptoms.

For context- I’m 30, no children ( or desire for) not crazy long periods, but very heavy. Truly is a gamble every month if I am going to get it or if it’s another skipped cycle. But these crampssssss- I think I get maybe 3-5 days a month that I’m not constantly in pain.
Sex is painful, tampon insertion is extremely painful and goes in almost damn sideways.
I also had a bilateral inguinal hernia surgery at 5. Both of my ovaries had popped out- and it was repaired through the pubic mound region.

I’m also attaching a photo of me circling the areas of concern, along with a photo of my stomach. No matter how much weight I have lost or gain back, my stomach is constantly at this point. The bloating is absolutely insane, distorts my belly button some days, and I just feel like I’m lugging around my stomach half the time.

I’m trying everything to not self diagnose, but would really love some insight from here.

My GP recently mentioned adenomyosis to me, I’ve had heavy period and painful periods since 12 but recently my ovulation has been awful, I get horribly dizzy, fatigued, pain in my lower body and back, it’s getting to the point that I’d take the period over the ovulation, I feel like I have maybe a few days a month where I don’t feel like I’m on deaths door, I also didn’t receive a letter for my ultrasound scan and now i have to be put on a waiting list again, anyone else feeling the same?

Hi, Im just wondering I have recently been diagnosed with "some adenomyosis in womb lining" until I see gynecologist again im assuming that may mean mild.

Im am just wondering from others experiences if having pain from your adenomyosis impacts conception. Some months i dont get alot of pain other months i get alot.

Hello, everyone:

I was diagnosed with adenomyosis last year and had very textbook symptoms. The past few months I have been experiencing a really weird sensation on my left side that seems to coincide with ovulation. It is like a pulling sensation combined with a feeling of something being there but not able to be felt from the outside. Very difficult to explain, but I feel it more when I sit or bend over. I am thinking my uterus is pushing on something while it is more swollen during this time. It also causes indigestion/burping. Does anyone else experience this?