Adenomyosis

[Gill1977]

Hello ladies- hope you are all well and coping ok during this horrid period in time.

I hope you don't mind me posting here...I'd posted on the adenomyosis page, but it's so quiet and I've had no response.

I was wondering if you could describe your adeno pain (where, what it feels like), when you have a flare up and what triggers it and any other symptoms you experience as a result of adenomyosis. Thought it might help to know that we're not alone....

I'm currently sitting here struggling with a very bloated tender tummy, pain on my right hand side from my ribs to my hip bone, down the front and back on my right towards my pubic bone. It's a different pain to the cramps I have when on my period- almost like an ache. Today, I've constantly felt the need to wee and pressure like I need a bowel movement. I'm also now bleeding for the second time in 2 weeks.

Oh the joys! Anyone else?

I had the coil removed 15 days ago after struggling with it for only a month. Really messed with my mood- but I think it may have helped a little with pain.Continuous bleeding though.

Wondering about a tens machine to help with pain? Anyone had any joy with this? Thanks ladies, gill Xxxx

[OstaraMoon]

It sounds like you’re going through a lot. I can really emphasize I’ve had similar symptoms too. I hope things start to balance for you 💖

[Gill1977 in reply to OstaraMoon]

Thanks OstaraMoon. Have you also been diagnosed with Adeno? x

[Moon_maiden]

I haven’t had that as a diagnosis but very similar symptoms, amongst others, apart from the bleeding.

I have to take things for constipation at present, otherwise it just builds up for more pressure. Laxido seems best at the moment.

I haven’t used tens, not keen on how it works.

Hope you can get some relief though.

[Gill1977 in reply to Moon_maiden]

Thanks Moon Maiden. Hope you've been having a good day x

[Bubblepoppy]

Hi I had all of your symptoms with adenomyosis then when I had a laperoscopy adenomyosis and endometriosis was found, I did use a tens machine it does help a little I also had the marina removed after a month it made my pain 10x worse I had the pain down my legs too and the pains on my period was 10x worse then the daily pains, I'm still suffering with pains after my lap in Dec but it's made them feel a little better then before. x

[Gill1977 in reply to Bubblepoppy]

Hi Bubblepoppy

Thanks so much for responding. It reassures this head of mine that I'm not actually going crazy!

I'm sorry to hear that you are still struggling. I also had a lap in december but feel fully recovered from that (I think). Currently struggling with some horrendous bleeding (manage to ruin our brand new bedroom carpet this morning, just by getting out of bed- had a huge sanitary towel on and was holding it close to me and it still managed to escape!)

What's next for you in terms of treatment? Big hugs xx

[Bubblepoppy in reply to Gill1977]

Well the Dr said he will re-refer me to see the consultant but with all this going on at the minute I will wait until it's all over, at the minute I'm ok on painkillers for now, plus I can't go out as me and my son are in the high risk group, oh no can't you get it off the carpet that's a bummer ☹️ I had a ablation on the womb as well when I had the laperoscopy that totally stopped my bleeding I haven't had a period since Dec, obviously because I finished having kids I wouldn't recommend if you still want children xx

[Gill1977 in reply to Bubblepoppy]

I have 2 daughters (luckily) and I'm def finished having children!

You must be going crazy being stuck

in the house 24/7. It's bad enough that we're only allowed out once a day - I can't imagine what you are going through. Feel free to message any time....we can keep each other going!

I actually have an mri tomorrow (private hospital). The lap/hysteroscopy in dec didn't find anything. So my consultant is currently basing the adeno diagnosis on my symptoms. I'm not ready for a hysterectomy or even the chemically induced menopause he suggested. I'm 43 next month- but would like to keep away from the change for as long as possible! Xxx

[Bubblepoppy in reply to Gill1977]

Yeah thanks, it is crazy I have two kids too girl & boy both 18/19 my partner can go out but he's going only for medications, I'm trying to keep myself sane 🤣 maybe suggest a ablation on the womb for all the bleeding, yeah I'm 38 next week and definitely don't want the change just yet, from the past appointment I had they said hysterectomy is the last solution 🤞 we don't need one xx

[Spaniel17]

Hi,

18 months ago I had a Lap and was diagnosed as having endometriosis with they removed. Ever since the operation I have had heavy bleeding, bloating, weight gain and the pain is coming back. I have had a video consult today and they believe I have adenomyosis, as I have tried the mirena coil, implant and injection he has put me on 150mg of the mini pill to hopefully stop my periods. So I am going go try this but do any of you have any diet or exercise tips? Or any other information that might be helpful please

[Gill1977]

Hello Spaniel17. I'm sorry to hear that you've been going through a rough time. Tbh - I don't really have any failsafe tips. I follow a lactose free and gluten free diet, and exercise alot (mainly high impact dance and some weights, plus band work), as i find the endorphin release helps with my pain and mood. I drink peppermint tea to try help with bloating, use hot water bottles (a long one that wraps around) and when the pain is really bad, I use my Ovira tens machine (specifically for period pain). I have tranexamic acid to take for heavy bleeding - I struggle with this as i never really know when my period is going to start. Nothing I've tried has been miraculous to be fair - sorry.

Have you asked for a pelvic MRI? It's not always conclusive, but it might show something up - at least then you might know what you're working with.

My MRI didnt show adenomyosis, but my consultant still thinks i have it based on my symptoms. It did show a 5cm cyst on my left ovary (he suspects the mirena coil caused this) and lots of tiny fibroids inside the lining of my womb. None of these things were picked up during my lap or hysteroscopy.

Sorry I cant be of any real use!

Gill xx

[Romano1234]

I have constant pain especially in the lower back like labour pain. I have ovary pain, bloating like i look 5 months pregnant, sciatica pain and weakness in the legs and back.