Adenomysis

[Adhamilton]

I'm in so much pain!! Can some describe the pain to me!! 😩

[brizzlebird]

Me too! I have excruciating left hip pain, deep lumbar and cocyxx pain. Dragging pain down both legs like the worst toothache × 1000. Womb cramps. I cannot speak, sit, stand or walk i feel on verge of collapse daily. What does yours feel like? X

[Adhamilton in reply to brizzlebird]

Hi thank you so much for replying to me!! That's like me totally! I feel my insides are burning and I feel like my insides are going to fell out😩 ! Lastnite I had to have a very hot bath!! My legs pain so bad I could of cryed I had 21 years of kidney infections as well!! I'm waiting for my date to have my hysterectomy!! 😩 X

[brizzlebird in reply to Adhamilton]

Ah it's truly hideous isnt it. I am on my knees with it atm. I saw my consultant ystrdy he took one look at me and booked me for a hysterectomy, possible 6 mth wait..I can't really find anything to touch the pain, do you? I take max dose tramadol, paracetamol, mefanamic acid and diazepam to just try and knock me out. I had excision of stage 4 endo in Nov but it wasn't the magic wand I hoped it would be because of the Adeno x

[Adhamilton]

I nearly died from tramadol!! so I can only take paracetamol and ipbrophen!! Do you feel your pain at the top of your stomach aswell under your ribs!! I had a lap and I had no endo just adeno x

[Heloo85 in reply to Adhamilton]

I dont have adeno but just had a lap for stage 4 DIE which has left me with severe constipation. Im currently being treated for my 4th impaction this year and oh dont i know that rib pain! Be sure to keep an eye on your bowel movements as your bulky uterous could be causing you constipation which is causing your rib pain! Wont cure you, but could be helped with laxitives, if thats your problem!

[Adhamilton]

I should be having my hysterectomy in the next 5 weeks!! Everyday I feel like I can't do another day of this!! But I get up and carry on again 😀 I've just had a double iron infusion! X

[MMB89]

Could I ask how they diagnosed your ademyosis? Is is that they take a small sample of the uterus and look under a microscope? xxx

[Adhamilton in reply to MMB89]

Hi it's gone on for years had ultrasounds, vaginal ultrasound and my uterus is very bulky and lumpy bumpy and had a lap to confirm had horrific pains and had to have iron drips regularly!! X the only way they know for definitely is when I have my hysterectomy I think!! X

[MMB89 in reply to Adhamilton]

I went to the endo study at the royal free hospital in May and one of the consultants there explained that they take a small sample of the uterus tissue and they look under the microscope. I am going to bring this up at my next endo clinic appointment as I am just not getting back after my laps/treatments.

Are you under a BSGE center?

[Adhamilton in reply to MMB89]

Have you seen a gynaecologist? X how's your pain and bleeding? X

[Adhamilton]

Yes in Cornwall!! X how your pain? X

[Kimple123]

Hi. The first description is just me! 3 years of investigations and a gynae doc diagnosed me in ten min. Before that they went skeletal and concentrated on coccyx and then colon/rectal. As soon as he heard my symptoms he said he thought was my womb and adenomyosis. The scan he did showed my womb with large shadow and it’s own bloody supply. So obvious to him apparently. He also showed me the sort of deep pockets where cells shed. I’m relieved on diagnosis but my head is melted thinking unlikely I’d be able to have second child. I’m 42 and we planned last go at beginning of year then COVID happpened and hubby lost business and Iv been in so much pain. So no idea how I feel.

But anyway. Can’t believe I’m reading your symptoms and how like me it is! After all this time! Hips. Dragging pains and coccyx. Back pain. Exhausted!