New adenomyosis diagnosis on top of my endo 😢

[endowarrior12]

Hi guys, due to worsening symptoms since January I’ve recently had an t/v ultrasound and pelvic MRI. Been told I now had adenomyosis as well as already diagnosed endo. I’m just feeling so worn down by everything just now. I’m in constant pain, exhausted and trying to keep up being a mum, wife and friend. I’ve been off work since January and nos on half pay so there’s financial stress too. So just having a general vent, sorry. Do you think adenomyosis and endo often come together? Hope everyone is okay today and if not I’m sending hugs 💛 xxx

[AllthatGlitters]

Hello sending a hug to you as sounds like you aren’t having the best time 🩵💛 I have both, welcome to the horrible club that nobody wants to be in.

It’s hard to be everything to everyone - I also have fibromyalgia and I have to learn to pace myself. It’s easier said that done. Feel free to Pm if you need a chat xx

[endowarrior12 in reply to AllthatGlitters]

Thanks so much 💛…sending hugs back and thanks for your kind reply xx

[Fuzzicle]

Hi,

Sorry you're having a terrible time of it. Yes I had both - hysterectomy resolved adenomyosis. I couldn't have children but was lucky to marry a lovely man who was the main carer for two children so I got to be a parent. Like the previous reply, I have a host of autoimmune diseases as well. You really have to slow down.

Listen to what your body is trying to tell you. Don't compare yourself to others because honestly you don't know their struggles. Focus on your own life battles and find ways to reduce fighting. For me it's doing less on a daily basis, namely cutting my working hours down, asking for help from friends and family - much harder to say than do - and travelling less because exhaustion exacerbates the pain.

You aren't alone in your experience but it is still isolating as its invisible to others so it's hard for people around you to understand what you are going through.

I hope you can find aspects of your life to be grateful for on a daily basis as I have found this makes the bad days easier to get through.

Good luck with your journey x

[ArcticChops]

I was diagnosed with Endometriosis 15 years ago. However, after recently experiencing severe pain I had an internal scan. I was told last night I also have adenomyosis! I had no idea and had never heard of it. My consultant is suggesting the mirena coil for progesterone right at site. I currently take utrogestan tablets but he said that’s not always efficient in helping as the drug has to travel around the body. Hoping the coil works.

So sorry you are feeling this way. I know how it constantly affects one’s life and the severe pain you are experiencing I hope you find relief soon x

[Cosford in reply to ArcticChops]

Hi I wanted to tell you I had the mirena coil fitted 17 months ago for adenymiosis and the pain is alot better, I also take magnesium and this helps with the inflammation, I hope it works for you as well as it has for me. Xx

[endowarrior12 in reply to Cosford]

Thanks for replying, I’ve already tried a coil in the past and it made my endo pain 10x worse, I suffered with it in for over a year as doctors kept telling me it would work and pain would settle but unfortunately it didn’t. I’m glad it helped you and I know a lot of people it did but sadly I wasn’t one of them xx

[Moon_maiden]

it’s very hard at times with constant pain. You’re doing well, keeping going 🙂 it’s what the forum is for a good vent, it’s needed now and again for sanity, not as though we get much outside support from drs.

Although never officially confirmed by histology Gynae was pretty sure I had adeno as well as Endo as uterus was enlarged.

Have you considered universal credit if you’re only on half pay? That and PIP, you’ve been sick long enough that I think you could put in a claim for PIP. If you do get lots of medical evidence together including any upcoming appointments.

[Cheesecrackers]

Hi, I'm 44, and was fairly recently diagnosed with endo and adeno, although sure I've had it for years. I'm fortunate to not have the excruciating pain that many experience (other than back pain) but I have had horrendous, non stop bleeding and discomfort with it. I'm now on zoladex awaiting hysterectomy.It's my understanding that yes they are very commonly found together, like sister or cousin diseases.

I'm also off work due to these issues and my mental health.. Also trying for financial support.

For me, it's been a (sometimes difficult) process of accepting where I am, instead of where I wish to be. Fully accepting what I can and can't do on a daily basis and trying not to get frustrated. Easier said than done. I know, for example, that even on good days I can only schedule one main thing to do. Going out will wipe me out. And I need to get help with things like hoovering or my symptoms will punish me later. It's a process and it's not easy, but kniw that you're not alone and try to give yourself grace while you deal with this. It won't be forever and you'll look back and be amazed at what you went through x

Sending support for your journey

[filous in reply to Cheesecrackers]

For me, it's been a (sometimes difficult) process of accepting where I am, instead of where I wish to be. Fully accepting what I can and can't do on a daily basis and trying not to get frustrated. Easier said than done. I know, for example, that even on good days I can only schedule one main thing to do. Going out will wipe me out

wow this completely me. I'm sorry you feel like that too. I've been on long term sick for a year and a half. Zero pay, trying to manage in Universal Credit is a joke. Got into debt etc...

My first specialist told me 'oh well zoladex hasn't worked so no point having hysterectomy'. and discharged me. Apparently because I had excision 3 years ago I can't have endo!

[Luc81]

They are sisters unfortunately, and lot of women have both, I had endometriosis since 35 and then adenomyosis diagnosed at40, is the worst. I'm so sorry because is hell I know. I was very lucky to find a surgeon who took adenomyosis out and kept my uterus, I wanted kids. He honestly saved my life. Is very important to find especialist who has lot of experience. If you can't do surgery now what helped me a lot was supliment called calcium d glucarate, helps the body to get rid of bad estrogen, endo and edano thrive on estrogen, I was also taking magnesium, zinc, omega 3. It did helped my energy. I honestly feel for you because it is the worst adenomyosis with endo, I really hope you can find someone to help you. Doctors were telling me to take vissane, but I don't do well with synthetic hormones, it was better for month and then was awful. I wish you all the best, stay strong

[Apricottree in reply to Luc81]

Sorry to jump in but I wonder if the Dr you saw was in the UK?

[Luc81 in reply to Apricottree]

In Prague.

[Apricottree in reply to Luc81]

Thanks, can I ask which clinic?

[Luc81 in reply to Apricottree]

It was a state hospital, his name is professor Dr Michal Mára, he is the best.

[Apricottree in reply to Luc81]

I've tried to find him but don't seem to be able to. Do you have any tel numbers or emails you wouldn't mind sharing please?

[Luc81 in reply to Apricottree]

sent u message

[endowarrior12]

Thank you all for the kind replies, I really appreciate it and has helped me through a rough time 💛

[mwalden1607]

hiya I too got a pelvic mri due to pain getting worse and got diagnosed with adenomyosis and a cyst on left ovary, I’m under a specialist now but not seeing them until august good luck x

[Goldgirl]

Adenomyosis often accompanies endometriosis

For me, I stopped all animal products, went vegan and it all went away. Avoided soy also

Some people say the carnivore diet is what did it for them

Try both diets and stick with the one that does it for you

[Sunset-lady]

Yes they come together and don't forget their friends - fibroids. All these things are estrogen dependent so if we are estrogen dominant (which we probably are with all of this) then the unwelcome trio often show up. How quickly they grow and flare up depends on personal body make up, lifestyle, diet and whether we take HRT. We are actually born with fibroids. Managing them all feels like a full time job. Also different people get different symptoms. Some women get excruciating pain, others get bleeding. Some of us are constipated whilst others have IBS symptoms. The diets that work for each person differ too. Many of us are off grains whilst others are no dairy. It's difficult to navigate and you have to get to know yourself so well. Good luck with the coil. If that doesn't work then try Zoladex which should help xx

[endowarrior12 in reply to Sunset-lady]

Tried a coil in the past and been in Decapeptyl for 2 and a half years so surgery is my next step x