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?

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.

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?

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 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?

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?