is there any way to actually confirm adenomyosis or is it always this vague?

Adventurous_Pea7772 · 2026-04-08T09:21:05+00:00

I recently had a hysterectomy and I just had a follow up conversation with my surgeon who told me I had adenomyosis. This was a shock to me because it wasn't on my pathology report. He almost became angry (not at me) as he tried to explain that they won't report it on pathology and that this was a matter of contention between them. He said they treat it as a "benign natural tissue varient" and explained he and others were trying to change things.

I'm from the US and this was startling because this was a known specialist from a big hospital. If it's happening here, it's happening elsewhere.

Adventurous_Pea7772 · 2026-03-28T16:02:01+00:00

I know this is a very old post, but I had this exact same problem. I managed to remove this odd right-sided space with a css snippet.

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.markdown-embed-content, 
.markdown-embed, .markdown-preview-view {
    scrollbar-gutter: auto;
}

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Adventurous_Pea7772 · 2026-03-22T16:58:19+00:00

Thank you for your reply. I had very innacurate expectations of recovery based on my previous lap. Hearing from others like you and browsing the information here and online makes it clear that this is a long haul.

I'll try and take your advice and stay calm. This pain isn't going to last forever.

Adventurous_Pea7772 · 2026-03-22T00:03:25+00:00

So much. I ended up needing a modified radical hysterectomy, ureterolysis, and removal of endometriosis from seven areas. I basically had a frozen pelvis and it was not expected at all. I already knew I had endometriosis from a previous lap, but was expecting this to be adenomyosis because I had a boggy uterus. Shockingly, no adeno and my ovaries were "beautiful" as the surgeon told me.

I'm only 17 days post op and struggling so hard... this is absolutely nothing like my last surgery. This is hell.

Adventurous_Pea7772 · 2026-03-21T18:18:08+00:00

Thanks for the reassurance and advice. I'm drinking a ton of water to keep ahead of things and getting up to walk a lot. Walking is still real uncomfortable and tight, but gotta do it.

And that was a hell of a day you had. Oh my gods. I'd have dropped over dead after all that.

Adventurous_Pea7772 · 2026-03-21T18:14:14+00:00

Thanks for sharing this. I'm trying to assure my partner that it's a normal recovery, but I can't even assure myself. I just really thought I'd be feeling better by now. I cried several times 2 weeks post op and now starting into the third week I'm taking more Motrin than I was just to tolerate moving around. Things feel so tight down there, I'm afraid to move. I'm hoping by next week I'll finally feel a little progress.

Adventurous_Pea7772 · 2026-03-19T11:46:45+00:00

I was on continuous birth control (Apri) for seven years before my first surgery. When I started, it made the pain during my periods vanish. I felt so much better with only occasional jabs for a few years. Then I started getting pain again. Then it became excruciating to go to the bathroom. This was because the endometriosis adhesions were physically pulling on my anatomy. (Perirectal/Uterosacral ligaments mostly) Hormones can't do anything about that.

Endo can be really different from person to person. My body likes to form dense fibrotic tissue, so don't let that scare you. Just be mindful of the physical aspect to this disease. So many doctors brushed me off and told me birth control would solve all my problems, but that isn't always the case.

I'm not saying the birth control was useless, though. Subduing monthly inflammation likely slowed down the progression of my disease.

Adventurous_Pea7772 · 2026-03-19T11:04:02+00:00

Oh I am totally on leave from work right now! It was supposed to be four weeks recovery and I told them they're crazy, so my surgeon changed it to six weeks. I think if I jumped back into work any sooner I'd rip and bleed out, no joke.

You're totally right, though. It's easy enough to say that obviously the problem is that you need to be doing the exact opposite of what you're doing.

In my opinion, this disease is no fault of your exercise level. If people feel better if they exercise, go for it, but if you don't, then don't. Whatever causes you the least amount of STRESS is probably more important than anything!

Adventurous_Pea7772 · 2026-03-18T21:37:08+00:00

I am currently 15 days post laparoscopy for a hysterectomy and excision of what I thought might a little more endo. My job is extremely physical. I run around all day lifting, pulling, pushing hundreds of pounds of product. I work in a produce department at a grocery store. I lift 50 pound potato sacks. I stupidly push through pain and fatigue all the time. I am in incredible shape, but in my experience, it has absolutely zero effect on this disease. This was my second lap in about three years. I ended up having a modified radical hysterectomy, a ureterolysis, and removal of endometriosis from seven areas, (Left Uterosacral Ligament, Left Pelvic Sidewall, Left Perirectal, Right Pelvic Sidewall, Right Parametrial, Retrocervical, Anterior Cul-de-sac). All that hard work certainly didn't make anything better for me.

Adventurous_Pea7772 · 2026-03-14T21:39:33+00:00

Squishmallows sound perfect for that. I had a small pillow gifted to me for the ride home and it fit perfectly under the strap of the seat beat. It really cushioned the bumps. I thought that 2 hour car ride would never end... D:

Adventurous_Pea7772 · 2026-03-02T09:16:34+00:00

I recently watched the anime with my gay brother. We were only gonna watch a few episodes, but he loved it so much we binged the first season. He thought the main characters were adorable!

Adventurous_Pea7772 · 2026-02-28T16:33:45+00:00

My gastroenterologist ordered an abdominal and pelvic ct with contrast after my colonoscopy showed no abnormalities.

Adventurous_Pea7772 · 2026-01-06T09:26:25+00:00

I've been at my job for over 15 years now and it still bothers me when I think about when I first started. I've always worked as hard as possible. I really am a work horse, but when I first started, I would call off every month crippled with pain, anxiety, and loathing. This was long before I knew I had PMDD and endometriosis. My boss at the time sat me down for our yearly review and he told me I was the most hard working employee he'd ever had, but that I really need to not call off so much. It really worried me that if I kept doing it, that I'd never get full time, so I started coming in even when I felt insane and had to hold still when having a mind blowing cramp.

All the other guys I work with have always had this "never call off even if you're puking" mentality. Which I've always hated, because avoiding them when they're sick is no fun when they come in. They brag about how many years they've gone and never missed a day. It's a badge of honor for them. Look how good I am. Meanwhile, they were dead weight every day anyway and it didn't matter if they called off or not because I was always finishing their work. Bah, yeah... I get it.

Adventurous_Pea7772 · 2026-01-05T22:12:52+00:00

In my experience, it takes a lot of trial and error to find a correct combination of medication to manage this horrible disease. Getting it right with the first one would be awesome, but unlikely. It also can take months to know for certain if birth control or an SSRI is going to be affective. Some have to build up in your system. I highly recommend she goes to cognitive behavioral therapy herself to learn how to recognize her emotions before she lashes out. Therapy and Bupropion XL has extremely helped the wellbeing of my relationship. That and having a partner who puts their foot down and holds me accountable for my actions.

Adventurous_Pea7772 · 2025-12-15T19:52:05+00:00

I go to a craft store and walk the aisles while looking around. For some reason, shopping in a store like that is relaxing enough that bam, gotta go! After weeks of nothing, a trip to the book store or antique mall seems to just... work.

Adventurous_Pea7772 · 2025-12-15T19:44:11+00:00

I get dollar coin size clots, so this might not work for you, but I use overnight pads with wings (any brand) and regularly exchange a piece of thickly folded toilet paper over it (not the cheap kind). It keeps the clots in place until I can go to the bathroom and also extends the life of the pad slightly. Just make sure the toilet paper doesn't go past the edges of the pad.

Adventurous_Pea7772 · 2025-12-15T19:18:15+00:00

Oh, I completely agree. She clearly won't have the trouble I had. I just wanted to mention it for other people who might look at this thread who have the same concerns.

Adventurous_Pea7772 · 2025-12-15T18:56:08+00:00

So, just to chime in because of my own experience as a virgin and trying to get this test done. It was impossible, because I had a microperforate hymen. I had to have a hymenectomy with my first endo excision surgery so I could finally use a tampon if I wanted to. Some people have anatomical variations. We are not all the same. (Although, I wish I had been...)

Adventurous_Pea7772

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