my story: Hi all i am new on here, i have... - Endometriosis UK

Endometriosis UK

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my story

dk1136 profile image
6 Replies

Hi all i am new on here, i have been suffeing with chronic back pain and pelvic pain for about 4 yeas now, i have only just recently been diagnosed, i was hospitalised a few times due to the pain and eveytime i was in they would do ultasounds and would find cysts, which would pop and go away but i was still in pain, i had a lap done jan 13 and the consultant said my womb was stuck to my bowel, he freed it and i was pain free for 2-3 weeks then the pain started creeping back, i had a colonoscopy done which didnt show anything so ibs was given as a diagnosis, i started hormone injections (was put into a fake menapause) 7 months ago and all the 7 months i was painfree, for 7 months i could do everything i wanted to - walk, exercise, and just pick my son up which was amazing, the injections stopped in feb and i was due to see the consultant at the end of mach but just 2 days over i was in agony, couldnt walk, bend sit up right, so the dr said im not leaving you in this pain i am going to give you an extra one to cover you till you see the consultant, so my husband and i went to see the consulatnt who was lovely, and we have decided i will be better with a hysterectomy, im 31, have 2 children, a boy and a girl, i know im young but if i was painfree for 7 months while in the "menapause" surely i will be pain free after a hysterectomy,

so at the moment i am on morphine patches which are not taking any pain away at all, i cant sit up right because if i do i feel stabbing ight in my pelvis both left and right, i cant walk properly because my back kills, when i do need to go out i have to use a walking stick, (ive had to use a wheelchair before now) the simplist of tasks - hanging the washing out or hooveing leaves me feeling like a cripple and absolutley exhausted. my husband is fab, because i do experiance pain when we are intermit, he is so understanding.i have curently been signed of work for a couple of weeks, im a receptionist so sitting and standing are a given, but i rreally cant see me going back before ive had my op (the op has to be done within 18 weeks) im just in pain constantly, feel like crying now. ive probably missed loads out but just wanted to say hi really and share my story.

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dk1136
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6 Replies
rachael1981 profile image
rachael1981

It's so hard living with the pain and it's difficult for people to understand what you are going through as well . Have you completed your family ? I assume That they can't give you any more injections ? I'm currently off work also due to pain I'm in and awaiting laparoscopy which will be in June. It's so frustrating and i

Constantly feel guilty as well when I have days off work :0(

dk1136 profile image
dk1136 in reply to rachael1981

hi rachael, yes we have completed our family, my husband and i just want me to be pain free, i feel guilty when im off work too but if we cant do the nomal day to day things without being in pain then what are we supposed to do. x

Tboag profile image
Tboag

Hi darling you really are going through it, I'm not nearly as bad as you but can still sympathise, ive just been diagnosed with endo and adenomyosis, got my follow up today, but my surgeon mentioned hysterectomy, it's the only cure for adeno, as you take the womb so there fore take the disease, I'm assuming at your age they would have to leave your overies behind, so therefore you wouldn't go into the menopause,

Have you had your endo excised by a specialist endo gyne doc,money some genral genes don't no enough about it to give us the best care, as I understand it, endo feeds of estrogen, there for if your overies are still present your body will still produce a normal amount of estrogen, so. Endo can still grow live ect,

They is a ladie on here called Lindle, ive learnt quite a lot from her posts, have a look, there is one about endo after hysterectomy and one about finding the right specialists

I'm not saying that a hysterectomy won't help, but just be clear on all the facts,

Good luck with what ever you deside, I wish you all the luck in the world.

Xxx

dk1136 profile image
dk1136 in reply to Tboag

hi tboag, yes i saw a consultant i was sick of seeing her unde studies so i requested i see the top lady who said ill be having a total abdominal hysterectomy = everything taken out, i will have a look for the lady you mentioned. thank you. x

Tboag profile image
Tboag

-a total hysterectomy dosnt include the overies, it's the uterus and cervics, a radical hysterectomy or hysterectomy with ootherectomy incudes the overies, you are very young medically to have your overies removed due to bone issues, estegen protects bones and without estegen they will be compromised

Xxxx read lindle post

GHawurek profile image
GHawurek

Hi dk1136. Gosh... I can't even imagine how it is being in pain for so long. Pain can take all the joy out of life and still you worry about you husband and say his fab :) That tells a lot about you! I hope everything will be ok! Best regards! - EggDonationFriends.com

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