Why doesnt my pain and tiredness ever sto... - Endometriosis UK

Endometriosis UK

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Why doesnt my pain and tiredness ever stop!!!!!!!!!

Fighting-Endo profile image
β€’13 Replies

I have constant pain in my back mainly lower back but actually more recently I feel it travelling up into what feels like my lungs and kidneys. Not only that it then seems to travel down my legs, and the pain in my stomach feels like everything is being squeeze or stitched together πŸ˜ͺπŸ˜ͺπŸ˜ͺπŸ˜ͺ My pain is constant and then worsens during my period anyone else experience this? Oh and my tiredness is on another level iv gone from getting up a 6 running and then working to litrally having no energy and needing naps during the day 😴 πŸ˜ͺ

13 Replies
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Hayayaya profile image
Hayayaya

yep this was me.. I was so worried especially with the pain radiating upwards. And the tiredness is the worst!! I wake up exhausted, as if I’ve ran a marathon. I’m currently on the Lucette pill which has helped with pain and tiredness

Fighting-Endo profile image
Fighting-Endo in reply to Hayayaya

Thank you for replying, glad to hear your feeling better 😊 . Did you ever investigate and find out what the pain was travelling upwards? My fear is that my endo is traveling to other organs πŸ₯Ί That is how I feel like iv ran a marathon or been beaten up, and I am supposed to actually be running a half marathon next weekend but honestly haven't been able to train properly, I wake up tired and in pain so not able to walk never mind run lol. I am TTC so cant take the pill, and have just been referred from general gynecology to an Endometriosis Centre in Derby so hopefully they can come up with a plan to help relive me of some pain however god knows how long ill wait for an appointment. Feels like Endometriosis robs us of so much out of life I prefer to have a positive outlook on life but on days like this its HARD!!!!!!!! πŸ’›πŸ’›πŸ’›

Hayayaya profile image
Hayayaya in reply to Fighting-Endo

when I mentioned the pain going upwards to my doctor she said upper stomach pain is caused by stress πŸ™ˆ basically implying that it’s my stress causing the pain rather than endo. I just left it at that.. my main aim at the moment is to get my most uncomfortable symptoms out the way, so that would be lower stomach pain, back pain etc. Good luck!!

Fighting-Endo profile image
Fighting-Endo in reply to Hayayaya

my doc is the same makes you feel like you are lying or overreacting πŸ™„πŸ™„πŸ™„ I hope you get to a point of pain free, good luck on your journey πŸ’›πŸ’›πŸ’›

Knina profile image
Knina in reply to Hayayaya

Hi, I have two conditions, so cannot pin point what is causing my tiredness:)) Traveling pain also might be a nerve pain. I have shooting pains to the shoulder, stomach but it is nerve pain. Maybe it is something you have? I am taking meditation classes now, it helps to see this disease differently. It still hurts, but my perception most of the time is different now.

Fighting-Endo profile image
Fighting-Endo in reply to Knina

yes my IVF doctor said it could be sat on my nervous system but when I mentioned this to gynaecology they dismissed it and said it could also just he a bad back 😑😑😑😑 I have actually been thinking about meditation thank you ill give it a go xxx

CryBaby91 profile image
CryBaby91

hi :)

Yes i have pain on a daily basis now, it's just worse if im ovulating or on my period. But definitely still there, even after my lap and having ablation and adhesions freed ☹️ still having pain in the upper part of my stomach near my diaphragm, round my kidneys and down my right side into my thigh. Though the pain has gone from being daily 7/8 to a 4/5. I'm on menopause injections so don't have periods anymore, so can't gauge if things have improved there at all. Xxx

Fighting-Endo profile image
Fighting-Endo in reply to CryBaby91

hi, glad to hear ur treatment is having a good impact. I was on prostap for 5 months best 5 months ever!!!!! But that was to submis my endo for a round if IVF since then iv been diagnosed with deep infiltrating endometriosis so my IVF is on pause as is any hormone treatment while I wait to find out what they can do for me xxx

CryBaby91 profile image
CryBaby91 in reply to Fighting-Endo

Oh no :( I'm sorry to hear that love. How was the deep endo diagnosed? If you don't mind me asking! I'm concerned there could be more than the endo they found in my tubes but i don't want to accuse the gynae of "missing it" or something lol I've read that deep endo is often missed at laps and usually found with MRI but I'm not 100% sure if that is true xxx

CryBaby91 profile image
CryBaby91 in reply to CryBaby91

the pain reduction is great, but these headaches are murder lol xxx

Fighting-Endo profile image
Fighting-Endo in reply to CryBaby91

oh yes and the hot flushes haha......when I had an Lap they said suspected it but was never followed up that was in march 2020. Then this yr when I went to start my 2nd attempt at IVF I mentioned some changes I noticed in my endo and he done a 3d scan I cant have a MRI coz of an overactive bladder and I have an instrim to help control it which they now think is not an overactive bladder but endo on the bladder. So they can dignosed it without an MRI if there is enough symptoms, history and signs. But to determine the extent of it they will need to operate. Push back on your gynae you know your body, or if you have the pennys ypu could have a private MRI you know when ur endo is changing you can feel sadly we have to fight for our treatment and to be heared xxx

CryBaby91 profile image
CryBaby91 in reply to Fighting-Endo

Oh gosh that sounds awful love, I'm so sorry you've had to go through all that! The way we have to advocate for ourselves so much really frustrates me! Someone with diabetes wouldn't have to jump through so many hoops, i dont understand why endo and other invisible conditions are so poorly managed. I have a really awful bladder too but they just said it is a symptom of the endo :( waking up to pee 4/5 times a night can't be just a symptom surely! It drives me crcrazy, i can't remember the last time I actually slept the whole night lol. I’ve got a post op telephone appointment with him in a few months so I'm going to mention it all then, the hospital is BSGE registered so I'm hoping they will take me seriously and not just say you've had the lap and that's us done. Xxx

Fighting-Endo profile image
Fighting-Endo

deffo ask again its sounds like endo on the bladder, ask for an MRI to at least rule it out πŸ’›πŸ’›πŸ’›

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