Sudden, severe flare - Adenomyosis? - Endometriosis UK

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Sudden, severe flare - Adenomyosis?

Arty09 profile image
10 Replies

Hi everyone

Would just like to know if anyone else experiences sudden, really severe flare-ups. I have what I would describe as the usual, daily grinding and stabbing pain which can go up and down, but sometimes I get an onset of terrible waves of pain in lower back and through pelvis and bowels. I could only describe it as bone crushing pain where I can’t even stand up straight and can barely speak. I have to lay down with heat pad and strong pain relief and it eases after a few hours. Also accompanied by very swollen abdomen so presumably lots of inflammation going on. I had excision for endo last year but still most likely have bowel endo but think this might be adenomyosis related as I’ve read others saying it can cause labour like pains but I haven’t had children so have no comparison. Just would be helpful to know if anyone else has this. (I have been diagnosed with adeno).

Thanks x

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Arty09 profile image
Arty09
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10 Replies
Vannyp profile image
Vannyp

Yes! This is exactly what happens to my daughter who also has endo and adeno. I’m so sorry I have no helpful advice for when this happens, but I hope it is reassuring to know you are not alone. Sending love and best wishes x

Arty09 profile image
Arty09 in reply to Vannyp

Thanks so much for replying. It does help to know I am not alone in this as it can be frightening when it happens. We get used to the normal, daily pain but this is something else! I do think it is down to adeno and in my experience I think it is more debilitating than the endo pain. So sorry your daughter is going through this too I hope she is getting good care 💕

TWrelate profile image
TWrelate

Hello, I've been getting sudden pains too this past 1-2 years. A change in frequency and intensity of pain. Ive lived with endo sunce diagnosed at 25 but likley had since teenage years. I thought changes might be linked to exercise, passing stools and after alcohol mainly. I accepted coil treatment a few weeks ago to stop irregular bleeding- fibroid related was confirmed. Old scarring evident inside and outside uterus. See how I go? I feel for you. Yeah lying sweating, feeling sick with pain is horrible. Leaves you shakey and teary though relieved when it passes. It actually started to occur less this past few months with less weights exercise! Not sure if this is a coincidence? Also, perimenopause might be contributing and even offering relief of sudden pain a little? I have a heated belt that I charge which is amazing for daily comfort. Take care

Arty09 profile image
Arty09 in reply to TWrelate

Thanks for replying and sorry you are going through this too, its hard to cope with. Yes I found exercise made things worse for me especially anything like squats, exercise bike etc. So annoying when trying to be healthy and take care of yourself. I wondering if this change in the intensity of pain means things are getting worse, it feels that way! I hope the coil helps you. I tried it years ago but wasn’t for me. Heat really helps me too. Wishing you well 💕

Razina profile image
Razina

This sounds like Adenomyosis as I suffer from it aswell and get sudden flare ups. On top of medicine I used heat pads, hot water bottle and tens machine to manage the pain but sometimes this isn't enough and had to be admitted to hospital for IV morphine. It's a horrible feeling and I wish I never had this disease, it really affects my mental health.

Arty09 profile image
Arty09 in reply to Razina

Thank you for your reply and I’m sorry you are dealing with this too, it is really horrible. I understand as well the impact on mental health, i find it very hard not being able to do simple things like go to work, go for a walk or do light exercise without hideous pain afterward. I think I have to get a hysterectomy as soon as I can as I just want a bit of life back. Such a hard decision though as I don’t have any children. I feel for you it is just so hard to deal with. I hope you have good support and people who understand what you re going through. Sending lots of good wishes your way 💕

Razina profile image
Razina in reply to Arty09

I've had to have counselling due to this and making me feel suicidal it was really bad. Thank you for the love and support I really appreciate it and I'm so happy to find this forum as now I don't feel as alone as I did before. Hugs and kisses xx

Readalot2 profile image
Readalot2

Hello,

Sorry to hear you are experiencing so much pain.

I have had sudden flare up's on a number of occasions over the last 2-3 years. I think it is the type of thing you are describing, although not in my back area. The pain is unbearable, when it has happened I can't move, can hardly breath, start sweating and sometimes has resulted in vomiting. The pain was abdominal/reproductive and bowel areas.

What I can say is that every time I have experienced this level of discomfort it is because something else is going on.

The first round of flare ups (around 3 years ago), was caused by a cyst on my ovary (3cm) diagnosed by a vaginal ultrasound scan. Which amazingly was treated over 3 weeks by taking oral progesterone tablets. An oestrogen imbalance seems to make these things grow sometimes and the progesterone reduced the cyst to nothing. And very severe pain went away for almost 2 years.

The second time was just over a year ago, again caused by a lump on my ovary (6-7cm) - diagnosed the same way, but that turned out to be a big lump of endometriosis tissue. That time the Dr decided an oophorectomy was the best thing (I am past child bearing age). I have been a lot better since the operation.

I have had the occasional flare up, but no where near as bad on the pain scale as the two time mentioned above.

I hope my experiences help you get to the bottom of your flare ups and the cause may be different in your case, but I think it is always worth pushing the Dr for a vaginal scan to see if you have any cysts or other growths. As I say, sometimes a cyst (which can cause unbelievable pain) can be treated incredibly easily.

Good luck.

shelley-marie41 profile image
shelley-marie41

hi arty sorry to hear your in so much pain. i suffer with all the same symptoms my love. i do not have any useful advise as i bare with it same as you. your not alone and we are all here, sending love shell xx

Endo766 profile image
Endo766

I have been diagnosed with both and have two children, one of which I gave birth to naturally. Yes, the pain is like labour pain. What I do: I can only describe it as a dry toe curling pain, very much like early labour, I’d compare it to 6cm dialation. When I get an inkling that this is about to happen (monthly occurrence) I take a 400mg of ibuprofen and then wait for the attack to pass using breathing techniques, much like labour. I refuse to take anything stronger or let it ruin my life, let alone day!

It’s so rubbish and I feel for you, changing diet helped, low carbs etc but it doesn’t ever go away fully, learning to live with it and not let it control you helps me.

Good luck with your journey 😘

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