r/adenomyosis

Does anyone have PMDD & Adeno? Just had a laparoscopy and a hysteroscopy for endo and adeno and the specialist surgeon was fantastic but has been very blunt about how the only options for adeno are hormonal or Hysto.

In the course of my PMDD treatment I have tried just about every hormonal interference and all of them intensified the PMDD to the point it was unbearable. Mirena, Yaz, mini pill, levlen etc. At this point im quite scared to add another one in as my pmdd is fairly well treated (fluoxetine and adhd medication) and I really don’t want to slide backwards.

Had anyone done Ryeqo who has PMDD as well?

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?

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 24 weeks pregnant and this is the second time my fibroid is degenerating 😩 so painful my baby shower is in 5 days and I’m so worried I won’t make it . Anyone have multiple degenerations or a fibroid that large ?

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?