I'm interested in understanding if there are others with the same issue as me. I have endometriosis, but have a mirena coil which has stopped my periods. I have some pain at times, but it follows no pattern and doesn't cause me too many issues. However, I've had ongoing issues with fatigue for as long as I can remember now. I can go through periods of time (weeks or sometimes months) where I feel better and can cope, then out of nowhere it hits me like a tonne of bricks again. I struggle to get up in the morning and stay awake all day, have to nap after dinner etc. I can't identify a trigger for the pattern. Does anyone else have this?
Thanks
Gx
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gwen80
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Hey there. For me the fatigue is worse than the pain. I have Endo and adeno and the pain can be horrendous at times but I’ve learnt to cope with that but the fatigue is more debilitating. I lose weekends to it, can’t get through the day without a sleep, have had to go part time at work…feel like I’m sleeping away my life. Been waiting for 2 & 1/2 years for a hysterectomy and have a new date for surgery in April after it being cancelled 4 times due to various reasons - really hoping to get some let up from the fatigue after that. X
Thanks for your reply. I'm interested in how you know you have adenomyosis. I was told that I likely have adeno (due to the way my uterus looked visually during laparoscopy), but was told it couldn't be confirmed without a hysterectomy. Even when I had more pain, fatigue was my worst symptom as well. I can totally relate when you say you feel like you're sleeping away your life. I've also considered a hysterectomy to help the fatigue, but feel like I'd be doing it on the off chance that it's the adeno that's causing the fatigue without really knowing. I'd be really interested in hearing how you get on after your hysterectomy. I really hope it brings you some relief - fatigue is utterly debilitating.
Thanks, it’s nice to hear other people are going through a similar experience isn’t it. The doctors never seem that interested in fatigue as a symptom. I had an ultrasound and the person doing it said she thought that I had adeno, but it wasn’t until a few years later that I had an MRI and that showed it. Between the Endo, which is also on my bowel, the adeno and the fact that I felt so much better when I was on the decapeptyl injections the gynae surgeon at the Endo centre in Colchester gave me the option of the hysterectomy. Don’t know if it will completely help or not as I’ve heard so many conflicting stories but at this point will to try anything! Can you ask for an MRI? Have you been seen at an Endo centre? X
Thanks for your reply. I think I'm going to ask for an MRI. No, I've never been seen at an endo centre. I went to the GP about the fatigue (after giving up for years) between Xmas and NY. She sent me for blood tests. Apparently the results are normal, so she's offered me citalopram (as apparently there's some evidence it can be helpful for fatigue (?!), but I'm also reading that tiredness/fatigue can be a side effect - fabulous!). Or I can have some sort of therapy or someone to help me find something that interests me in life (so patronising - I have plenty of things I'd like to do in life, if only my body would cooperate). I don't want any of her options, so I'm just debating what to go back and ask for. I joined the local ME/CFS charity and they've suggested I ask to be sent to the local ME service. I'm just trying to figure out which way is the best way to go.
That's interesting, I have also just been told I may have adeno due to how my uterus looked during my laparoscopy. However, my consultant has sent me for an internal ultrasound to try and diagnose. I'm wonder why this was suggested for me and not you.
I was told the same after my laparoscopy. Interesting that you are being sent for an ultrasound whereas the poster above was sent for an MRI. Off to research diagnosis of adenomyosis...
I've had more of a think about this since my reply. My gynae said my usterus looked very bulky and is heavily tilted. She said she suspects adeno and or fibroids. Now fibroids can be diagnosed by an ultrasound, so I'm thinking it's a case of if there's no fibroids itself most likely adeno 🤷🏼♀️
She had been trying to get hold of my previous scan I paid to have done at spire and wasn't sent it by my GP, and I was told everything looked normal. So she has done a lap without ever seeing an ultrasound. The fact that my uterus looks enlarged and she's not seen a scan, she may have concerns about uterine cancer, as I got the scan withing the 2 week window, and with the .waiting lists at the moment, it would explain why it came through so quick.
Thanks for coming back to provide more information. I've been doing a bit of research about diagnosis of adenomyosis and it looks like it *can* be diagnosed sometimes with ultrasound or MRI. I'm just trying to figure out how likely it is to pick it up, but I think I really need a specialist to advise me. Just not sure where to go from here... Good luck with your scan tomorrow x
I was like Jane884, got referred for an ultrasound and showed a thick uterine wall which could indicate Adenomyosis as they couldn't see any fibroids, I guess they deduced to Adendo.
I started taking iron tablets because I was unusually tired. I had an iron deficiency before having heavy menstrual bleeding so suspect this wouldn't have helped it. Must say I do feel less tired.
I am now trying to conceive but am experiencing post period cramps... Does anyone stuffer pains outside of their period?
This is exactly what I'm going through at the moment. My consultant has said it's either my body's response to the inflammation of the endo (having a lap in under a month!) or a hormone imbalance.
I've been told I can't imagine what having a hormone imbalance does to the body, it throws every process out of whack. Have you had a female hormone blood test? Or been tested for things like anaemia or folic acid deficiency? I'm having a load of bloods done at the moment to try to pinpoint what it might be as a starting point. Maybe ask your doctor for the same, if you haven't already? x
I feel exactly the same, for me I seem to have literally a few days after ovulation where I feel a tiny bit more energy, my mind feels a little bit clearer then boom about week before period the complete exhaustion hits and makes me feel physically ill, then starts the spiral in my mind of what is wrong with me and am I gonna feel like this forever so three weeks ish of feeling like complete crap then period time approaches and I know the whole cycle gonna start again.
I’m thinking it’s the same as what G3ministar consultant has said about our bodies reaction to inflammation and/or hormone imbalance. But what can we do about it, surely there has to be something cause I don’t know about u girls but I really can’t cope!
Oh my goodness, I am exactly the same!! My pain used to be manageable, but now it's constant all day, every day. I've been referred for surgery but it's just a waiting game now. I'm only 22, and suffered for 11 years. I really do regret the mirena coil, but all the GPs I have spoken to have said there is no point taking it out early. The fatigue makes me so irritable and miserable. Even with changing my diet and gentle exercise, I have no energy. I am worried I will have to go part time at work, but financially that's not viable right now. I feel at a loss and just want to sleep 24/7 😴
Hi gwen80 , any progress? I just came on here to say my bloods have come back to show a severe vit D deficiency (previously it was folic acid, ffs!) and I'm to go straight on strong supplements. If you haven't already, I strongly recommend getting some blood tests done for yourself as if there is anything, you might be able to at least ease some of your fatigue. Good luck! x
HiI had blood tests taken in January. Went back to the GP to discuss and she told me they were all normal and I'd been tested for 'everything'. Hopefully you might be able to get some relief the vitamin D supplements. I've been offered antidepressants and various other unhelpful suggestions (I've posted about it above) and she also seemed to be quite positive when I mentioned going part time at work. Hardly a solution though...so frustrating. I'm wondering whether to see if I can get a scan for adenomyosis and if I do, get a hysterectomy. How much more of my life do I need to lose?!
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