Adenomyosis - what’s next?

[abcdefg2020]

I had a laprascopy today to originally look for ‘endometriosis’ but it turned out they saw adhesions on my bowel and some scaring in my stomach (the scarring wasn’t the source of the pain and she thought it was from my last surgery), they also said they saw what appears to be Adenomyosis, she showed me my uterus and it was all grey/white and extremely mottled looking.. she said it’s very strange and looks not normal at all as the uterus is supposed to be a pinky a colour but it literally looked like it had dark grey/white splotches all over it (showed me a photo of it).

the plan she offered was to go on the mirena coil, have it interested during the surgery (which I did), and then if in 4-6 months if my symptoms are not any better then she will start going down the path of a hysterectomy. For a bit of info, I’m 23 years old, 2 children (girl and boy) and I’m sick of the pain all the time and happy with the amount of children I have so for me a hysterectomy is something I’d absolutely be happy with and have been asking for 2ish years :)

does anyone else have any experience with this and what the mottled looking of my uterus could possibly mean? She didn’t 100% diagnose me with adenomyosis but said that’s the path we’re going to if we end up having to treat it with the hysterectomy as they’ll be able to obviously look inside my uterus to see if it is. I was so sad when the words ‘you don’t have any endometriosis’ and nearly balled out crying but I guess this is something and it’s not all in my head…

I’m so sorry you’re going through this—Adenomyosis can be really frustrating, especially when it’s not fully diagnosed yet. I found that keeping track of symptoms and exploring diet and lifestyle adjustments helped manage pain before considering surgery. You might find helpful tips and meal ideas here: https://bodify.ae. It’s comforting to know you’re not alone, and having a plan with your doctor is key.

@abcdefg2020 Have you been feeling better? Or did you call the ward or go to A&E, see your GP? I hope you saw someone ans got checked out. Give us an update when you can, I hope you’re all fine though and resting.

I’ve felt fine other than a horrible headache over the last 2ish days, my stomach has softened up a little. I fear all these headaches and anxiety could be from the coil as contraceptives always did this to me…

The coil does take a while to settle. Give it time. It can take up to 6 months, but for most, it will settle in 2/3. The nocebo effect is also a real thing - it's when negative expectations about a treatment or situation lead to a negative outcome, so it can be triggered by warnings about side effects, previous negative experiences of a similar medication. This manifests as physical symptoms, such as pain and headaches due to the brain's response to negative beliefs and information. Now I'm not saying this is definitely true right now, but anxiety, etc, judt having surgery, and everything is a lot, so try and be open-minded, and rest. Please book an appointment to see your GP or go to urgent care. You seem to have a worse recovery than you should for a minor-medium complex operation. It could be a small infection. Please get checked out. Did you call the ward at all? The number is likely on the website. If the headaches are bad, take some ibuprofen or paracetamol, try and get some of those cold patches for headaches/migraines, they'll be in Tesco, or any pharmacy they can be great. Also, any of the headache rubs or creams can help. If it persists for a week or 2 - go and see your GP, look into other causes, etc, maybe another med to reduce anxiety like propranolol, which also helps with headaches and migraines. You wouldn't have to take it everydayn but could use it for occasional use if you have a headache or anxiety. Do you have tranexamic acid or northisterone to use if one day your bleeding is heavy? Just to use as the coil settles and everything, the odd time, you may want it. Have you gotten a follow-up appointment booked with gyne yet? I would call the ward and ask if you can be seen by them, so you bypass A&E, or if they can send you to the EDEC - most gynaecology wards have them, they are same day emergency care. However it's for people who don't need to be in A&E, let's say they come in, they don't need to stay so then they are given an appointment in EDEC for the next day or in 2 days and get seen there. Ask them about that and also1. Has your consultant dictated her findings/results of the surgery and the appointment?2. Has the secretary written/typed the letter up yet3. Has the letter been sent to you and your GP? Have/Can they book you a follow-up appointment, even if it is in a month or 2, which it likely will be due to waiting lists ? They can at least give you the date now. I hope you start feeling better please call them ask about them seeing you quickly and doing an assessment, ask about EDEC when you call, or go to your GP. It's better to be safe than sorry.