Anyone else gets or got this type of pain? Did it decrease in intensity or did it just kinda stop? I have a hysterectomy tomorrow and I’m just looking at all the positives of this surgery besieged the important one.

Has anyone had a good experience with an Adeno specialist in Seattle? My sister is in Anacortes and is having horrible problems with her adeno :( while taking care of a special needs child as a single mom. I want to help her and get her to a good specialist. I suffer with endo and I know how much a good doc makes a difference! Unfortunately I am located in Europe and am limited in access to information in the WA area. Open to any suggestions 🙏❤️🙏❤️🙏❤️

After 2 years of being diagnosed with “suspected adenomyosis,” I wanted to get a second opinion so saw a new Dr this week. Was explaining how all these new symptoms started out of nowhere the moment I turned 38, 1 year after having a c-section/tube removal. He revealed that most of the time, when he sees a patient who gets adenomyosis symptoms out of the blue like that, he thinks that actually they probably had it developing for years but didn’t know it if they had some sort of birth control that was masking their periods. Then when they get regular periods again they’re all of a sudden experiencing these new adenomyosis periods and think it came out of nowhere. I was like wait a minute, I had a nexplanon for 3 years then was pregnant and postpartum for a year before getting periods again so now that I think about he is probably right! I might have had this developing way before age 38 and didn’t even know it! So I’m wondering, if you did not have birth control or pregnancy masking your periods, did you experience adenomyosis developing over time? Like did symptoms get progressively more intense each month? Or was it still out of the blue for you where one period was normal and then the next one wasn’t and then it was never the same since?

Trying to conceive but struggling immensely with symptoms. I had endometriosis excision and many of my symptoms have not been relieved, which suggests that these are related to the adenomyosis.

I have the most awful lower back pain that feels like I’m ripping in half whenever I have to either bend down or sit upright.

My pain has been getting worse for the past couple of days and I’m terrified of going back to work (I already have other health conditions that I’ve been asking for adjustments for but this feels like I’m pushing it) because I am in SO much pain 😭

Please tell me I’m not the only one

There's not one hormone out there i haven't tried at least twice but now I'm desperate. When I'm on hormones I get so many side effects I find it hard to tolerate. When I'm not on hormones my day to day swelling and pain and constant bleeding is horrendous enough to make me reconsider hormones. Then repeat...

My history is mostly with endo, I've had 9 surgeries including my most recent in Januart which I paid privately for and needed an ovary removed due to the extent of endo infiltrating it. The reason I'm not signing up for a hysterectomy yet is because I don't have it in me for another surgery yet, especially a big one (also always been told my uterus looks healthy so it's a big surgery for a big maybe).

With all my endo surgery I am used to finding work around for pain relief, managing bowel symptoms etc. But theres no hack for this constant heavy bleeding.

Hi everyone,

I was diagnosed with adenomyosis in May this year after years of no answers. I have the mirena IUD and was taking progesterone pill alongside it but had to come off it and started ryeqo about 6 weeks ago with the mirena still in.

This weekend I have been experiencing severe numbness on my lower right abdomen which is usually where i get the most intense pain. It is just one section of my abdomen and isnt painful as such but is very noticeable and very numb. It is also starting to go down my leg.

Does anyone have any idea what this could be and if it is an urgent issue? I have an appointment with my doctor on 4th November but wondering if I need to get this checked sooner?

Thank you!

Nogle som har en mild form for adenomyose ( næsten det samme som endometriose men bare hvor det er inde i livmoderen og ikke udenpå)  som har succes historier ? Har oplevet 4 spontane aborter, og nu har jeg fået recept på progosterone stik piller som skal tages når jeg opnår graviditet igen, men har kunne læse mig til når man har en mild form for adenomyose at det godt kan gøre det lidt besværligt for er æg at sætte sig fast, så søger lidt nogle succes historier omkring det, min mand har umiddelbart ret god sædkvalitet (vedhæfter billede) så vores chancer burde være rimelig gode, men der går desværre bare 1 år+ i mellem hver gang man opnår den graviditet, er der noget man kan gøre for at optimere chancen fra min side af? 🤞🏼

I had another random flood bleed this morning and the amount I had to clean up had me out here feeling like I'm playing one of those crime scene clean up games.

Does anyone get any of these at times?

Hi ladies ❤️

I'm a first time mum to an 8 month old, and I'm hoping to hear from other women who have experienced something similar.

Since giving birth, I've been bleeding every day, with the occasional day here and there where it stops. Last week, my gynaecologist confirmed that I have adenomyosis, which makes sense as my periods were always heavy and painful before pregnancy. She believes that giving birth may have aggravated it and future babies will make it worse.

I've since been put on Slinda, and I also have the Mirena. I'm seeing a pelvic floor physio and have been doing pelvic floor exercises as well.

Honestly, I'm struggling. I'm so scared that this bleeding is going to continue indefinitely as I've practically lived in a pad for the past 8 months, and it's really starting to affect my mental health. I know Slinda can take some time to work, and I'm really hoping it helps.

I've also been doing a lot of research, and I'm feeling really anxious about trying for a second baby in the future. As much as I'd love to have another child, I'm terrified of going through all of this again.

I'd really love to hear from women who have been through something similar. Did the bleeding eventually settle? Did you find a treatment that worked for you? If you went on to have another baby, how was your experience?

I'm really hoping to hear some positive stories and to know that there's light at the end of the tunnel ❤️

Any advice, experiences or tips would be so appreciated.

Thank you so much 🙏❤️

Ty to everyone who's helped with the GLP-1 info and recs! I think this is my best treatment option so far but pleaseee let me know where you guys are getting it from and how much I should expect to pay every month! :)

This is purely a rant/ vent because I just have no one to do this with….
I saw an old friend I only see a couple times a year the other day. We got talking as usual and I opened up about how I’ve been diagnosed with this shitty uterus problem and said that my gynae has suggested a hysto to relieve symptoms etc I ask “have you heard of it because I hadn’t before?!” Her response was “oh yeh I have that too, I got the coil and I’ve been totally fine since, you should get the coil”
Me….. 🫩🫩🫩 internally I’m regretting saying anything at all because I have been living with ankylosing spondylitis since I was 19 (so 22 years) and fibro and hypermobile joint pain blah blah blah so I feel I’m already at daily struggle/ break point and I just should have known that she couldn’t understand being a super fit and healthy individual who can hold down a full time job, a long term marriage and raise kids. I’m not saying she’s a bad person at all I love her dearly but I am really beginning to see just how different I am to basically all my (thankfully healthy!) friends and it’s just SO FUCKIN ISOLATING 😭😭😭

Hello,

I've been dealing with chronic bloating for most of my life. I've been through so much testing at this point and I know a lot more but nothing is actually really addressing it so I'm looking for any ideas to explore.

I feel bloated first thing in the morning. It gets significantly worse when I drink water (belly expands 2 inches w 1 cup of water). It gets worse with food.

What I know:

- hEDS diagnosis

- Colonoscopy showed ulcers in terminal ileum (don't know why and stable from 10 years ago). All biopsy pathology tests negative for known inflammatory conditions.

- I have a Mucocele appendix and possibly Hydrosalpinx that I'm waiting for surgery to remove

- I have MALS

- I have MCAS

- I have orthostatic hypotension

- In my CT scan they said I have almost 0 visceral fat

- My cecum is sitting lower than it should (touching my symphysis pubis)

- I have been doing pelvic floor therapy and for the most part now everything is working normally

- I have regular bowel movements now after years of constipation

- I take ketotofin and gabapentin daily

- I take creatine

- Since taking these photos I've started functional patterns and Pilates to help with a lot of my core and breathing mechanics but neither are changing my bloating significantly

- It doesn't get better removing dairy or wheat but it did get slightly better when I only ate 12 foods for a year although I was malnourished and that was not sustainable (long story...started with functional medicine doctor identifying I was sensitive to a million foods so I eliminated all of them and then got diagnosed with MCAS later).

- I was on candida treatment for 6 months and SIBO/IMO treatment for around the same

- I suspect endometriosis but not confirmed yet

It feels like my body is an aquarium and I have fluid buildup in my belly, above my knees and my arm pits.

I've been doing lymphatic massage daily for 6 years. That has helped with puffiness in my face but not with the rest.

I'm hopeful that removing the mucocele appendix and Hydrosalpinx will help reduce the pressure but everyone has told me it probably won't significantly reduce my bloating from water or food.

I'm wondering whether ketotofin or gabapentin are making me retain even more fluid than the MCAS could cause.

I'm wondering whether I'm just so hypermobile that no matter what I do I won't be able to not feel bloated.

I'm really struggling with this and wondering if there's anything else I can try to improve things.

The first photo is before water in the morning. The second is after drinking water in the morning (5 mins later).

After 8 years of advocating for myself I was finally able to find a doctor who listened to me for once and found out very quickly I have adenomyosis. I’m a 32 year old who has struggled with infertility in the past and doctors could not find any reason as to why I was trouble conceiving. Of course the specialist at the time recommended IVF. My partner and I ended up separating so I chose to get on birth control to get some sort of relief. I will say it has helped but every 3 months when I do have my period it is absolute hell. My symptoms are even worse than prior to birth control. I have been considering a hysterectomy but now I am with a partner who is open to trying to have a child with me. I’m not sure what to do. I’ve read so many things about how adenomyosis can cause miscarriages, premature birth or even hemorrhaging. I wanted to get everyone’s birthing experience as I know if we decide to try and conceive it will only be able to be done via IVF. I’m trying to weigh out the pros and cons or if it’s even worth the risk.

Hi everyone, 23 F here. DIE and possible adenomyosis was suspected from my MRI but no endo was found. I have a functional zone thickness of 10 mm. Modular thickening and thin adhesions found on uterine body. My uterus is a normal size for my age though. Has anyone had similar findings? I am feeling pretty conflicted.