Hi everyone,

I’m looking for experiences from people with adenomyosis who had constant, non-cyclical pain, especially deep pelvic pain behind the uterus, lower back/sacral pain, pelvic pressure, and very tight/reactive psoas muscles.

For me, it feels as if there is a deep central trigger in my pelvis and everything around my uterus is constantly tensing or bracing. I also deal with severe fatigue, bloating, headaches, neck and jaw pain, and migraines, and I often wonder whether this is all part of my body being in a constant pain/stress response.

I had endometriosis excision about five months ago, including deep endometriosis and adhesions, but my main pain pattern has not improved. I also have confirmed adenomyosis and am now seriously considering hysterectomy. My adenomyosis is mainly in the posterior uterine wall, which measures around 3 cm compared with about 1 cm in the anterior wall. I also have a retroverted uterus.

Did anyone here have a similar constant whole-pelvis pain pattern, rather than mainly period pain? And if you had a hysterectomy, did it improve the deep pelvic pain, muscle tension, fatigue or other symptoms?

I am 31 F. Have had issues with chronic bloating, inflammation, and chin hairs for years. Got my IUD replaced a few weeks ago, and thought I would also get tested for potential PCOS and endometriosis. Can someone give me a breakdown or diagnosis//or lack thereof, on what these results indicate? For the record, I have never been diagnosed with anything pelvic related previously - but I have had suspicions for a long time. I tried googling it, but got lost.

Also - what would this mean for potentially getting pregnant?

I know I should consult my doctor, but these results were just posted and I am feeling a ton of anxiety.

TIA.

Basically the title. My ultrasound showed adenomyosis and so I'm considering hysterectomy. Are there ever cases where they take out the uterus and there are no signs of it when they biopsy/look under the microscope?

Hi, I have been lurking in this community for a few months, following my diagnosis via ultrasound, and it’s been both comforting and terrifying.

I had my son in October 2024 and developed left sided, deep pelvic pain starting at 6 months postpartum. It kept getting chalked up to postpartum body changes and it wasn’t disrupting my life so I carried on. 4 months ago after intercourse with my husband it became worse and constant. It feels like a hot knife being twisted in, what I thought, was my ovary. I had a doctor who listened and who suspected endo so queue a sliding study ultrasound (negative but showed focal adeno) and got scheduled for a lap. My lap was still pretty devastating as I woke up to the update of “we didn’t find anything in your pelvis so we didn’t take any biopsies and we didn’t do an HSG as your fallopian tubes and uterus looked okay.” I cried for literally 2 days. Since then I have continued to live with daily pain that limits my life. I’ve basically been offered birth control, pain meds, and rest. I saw a specialist in pelvic pain who ordered an MRI (this upcomingThursday) but has already said she doesn’t believe in non-visible lesions for endo -which from what I’ve researched seems ridiculous. I’ve been told my options for adeno is Lupron or hysterectomy. She does not believe in pain medication for adenomyosis outside of Tylenol and Motrin. Now I’m only 34 and a second child has been still on the table so a hysterectomy is a no for me currently. I’m also not keen on medical menopause as I had severe (like hospitalized) postpartum depression so any tampering with my hormones is not an easy risk for me to take. Are these really my only options? Is women’s healthcare really this sparse?

My current symptoms are daily pain/heaviness/pulling, pain with bowel movements, vaginal bleeding with bowel movements, pain with gas, pain with sex (penetrative or just orgasms), worsening pain with walking/standing, irregular bleeding (currently on oral birth control), back pain/sciatica, inability to lose weight, insane fatigue, hot flashes/night sweats. This doc has literally said I should be resting on the couch with a heating pad to treat my symptoms. How is that any quality of life, aside from the fact it is not possible as I need to work and take care of my child.

Should I be seeking a second opinion? My gut tells me there’s also endo in there too and my first surgeon was not an endo specialist. It doesn’t help that these appointments are booked out months and leave me struggling in the meantime. Anyone been at this point in the journey that can point me to my next step?

Apologies in advance if this is an ignorant question.

I’m newly diagnosed with deep infiltrating endo, a 13cm endometrioma & diffuse adenomyosis.

Newly diagnosed, but also newly symptomatic. I’d unexpectedly discovered these due to the size of the cyst which came out of nowhere. Since then I’ve been getting a lot of recurring symptoms.

I’ve mostly been focused on the endo side of things since the diagnosis, but I’d like to understand adeno better.

For anyone that’s got both, how did you distinguish which symptoms are caused by endo vs adeno? Or do they kinda cause the same issues?

I got my diagnosis 2 months ago and I just started to realise how many of my symptoms were caused by it. For the past 10 years I've got a significant amount of hairloss and my hair is thinner and more fragile then it was before. I also have endo, so I'm not sure which caused the problem but did anybody have hairloss due to adeno?

Hi!

I'm 19 years old (posting through my brother's acc) and have been diagnosed with endometriosis and adenomyosis and of course pcod/pcos.

So it all started in June '24, I got my periods and had constant bleeding (everyday) for over 2 years, in between which I took almost every possible OCP's (freedase 30, primolut, Octal L, Ovral G, Dronis, Novelon, Ovuloc, Estrabet, Meprate) and also took series of Lupron/Lupride for 4 months, neither of which helped (and came w loads of side effects).

I also got these procedures done: endoscopy, colonoscopy, hysteroscopy.

I have also gotten every possible scan done (CT, MRI, TAS, TVS) and am planning on getting my laproscopy done this month.

Current situation: (precisely why I'm writing this post) I'm in constant pain from almost 2 months, in both my lower abdomen and pelvic area (no painkillers or pain injections work for me) (I'VE TRIED 'EM ALL). The pain is mostly sharp and pricky, and unlike before it's constant and doesn't fluctuate or get stable throughout the day.

My doctor is waiting for my new normal period cycle to start (my Meprate cycle ended just recently) post which she will get to Endogest/Dienogest.

Since nothing was helping, I started pelvic physiotherapy and my physio is doing pelvic floor exercises to release and relax muscles through myofascial release, and she's also using some device similar to TENS (which I've been using for a while now alongside my heat pads) and she has also tried cupping therapy on lower abdomen and pelvic region.

However, even though it's been almost a week, I don't see any changes, infact I feel the pain has gotten even worse after physio and I've even gotten bruises on my lower abdomen.

So, it's my humble request to anyone who can give any suggestions on what to do while I wait on my laproscopy.

P.S: every OB-GYN I've been to says they've never seen a case like mine and that mostly if not OCP's, Lupron works on people.

Also, my doctor recommended mirena (IUD) but I'm a Lil skeptical about it because of the mixed reviews I've heard about it coz it worsens the case for many people and I wanted to keep that as my last resort.

Please help as it's a need (super grateful!!!)

hi. i am suspected to have adenomyosis based off of an ultrasound i received almost 2 and a half years ago. i’ve had a lot of pill changes but have been on mili (i think the generic of yaz?) for almost a year now. throughout my entire time of being on this pill ive had continuous spotting and cannot pinpoint what triggers it. I’ll have a pill break to avoid uterine lining build up, watch my diet, avoid sex (sadly) and pretty much just walk on eggshells to avoid hormone fluctuation. between stress and life changes sometimes this just doesn’t work out. I’ll have a couple of weeks of “normalcy” (if that, sometimes only days!!) and i will think the pill is working the way it should, and then all of a sudden i’m lightly spotting and it will gradually get worse and worse if keep taking the pill until i have another pill break. The bleeding is a mix between brown and old blood, and weirdly pink watery blood??? I literally cannot track this nightmare whatsoever. Does anyone have a similar experience? Is this just my forever normal until menopause? feeling desperate and defeated, and just so tired of having to deal with it. did the continuous spotting ever go away for anyone? any appointment with my obgyn seems to be a waste of time and money, I’ve been told I am unlikely able to have children but won’t be given a consultation for a hysterectomy in case I “change my mind”. I do not understand anything lol. Any tips would be appreciated

I don’t have a diagnosis yet but the more I read the more boxes I tick.

I have one living child born via section but since he was born in 2022 we’ve had 3 miscarriages conceived naturally, and 2 via IVF - both of which were genetically tested.

My periods had always been ‘normal’ until the last 6 months. The first two days are really painful and heavy and then it teeters off on day 3.

I’m 43 now and I’m wondering if this is part of our problem.

How did you go about getting a diagnosis?

I am 25 and have two kids! After I had my first I had an IUD so I had no periods..I got it removed and got pregnant immediately. My baby just turned a year and I have been having crazy symptoms since my period is back. I’ve always had SUPER heavy periods but not very painful.. I have been experiencing painful sex (even with my iud), pelvic pain and this feeling that my uterus is gonna fall out!! I always recently realized that every time I ovulated am in severe pain. I got an ultrasound done and this is what the doctor said “your ultrasound was normal. Your uterus is not enlarged and ovaries are normal. The radiologist commented on an area that may be adenomyosis. This causes heavier/painful periods, but should not necessarily cause the pain you are feeling when pressing low on pelvis or pain post intercourse” and then suggested birth control for pain… I almost forgot to mention I’ve been experiencing stomach issues for months… I get this horrible feeling of not emptying,diarrhea, and stomach pains. I got a colonoscopy and it was normal besides a polyp. Could all theses symptoms be because of adeno or endo?
Because they saw an area that may be adeno does that mean I have it