Endo related symptoms ?

Hi all. Sorry to be meaning again.... but I feel really pants :(

Adding to my ongoing list of "reasons I feel s**t" ...

My low back and hip pain is getting worse!

Can I ask if this could be related to my uterosacral ligaments having endo still on them? Do these get left in or taken out with a hysterectomy?

Any other reason I am getting this bad pain?

I keep getting really bad indigestion/heartburn. (Used to suffer badly in pregnancy) My stomach is very swollen again and I can't sleep as it is keeping me awake.

Another new symptom along with this is; really sore breasts - nipples in particular. They feel like they did when I was carrying my children. So sensitive and painful.

Having had hyst in May this year - I know I'm not pregnant.... so why these pains and sensations ?

Iwhilst im moan gets I will also mention that i'm also getting bad pain just under my left collarbone.

SO... are these symptoms related to my HRT (gel form) ? OR.... do they point to anything else?

Thanks guys, sending you all hugs xx

5 Replies

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  • The uterosacral ligaments do get left in, after a hysterectomy. Did you have excision surgery as well as hysterectomy and was it in a bsge specialist centre???,

    Sometimes shoulder pain can indicate diaphragm endo,

    If you go on Facebook endo page, Linda has written loads of files up, have a read,

    Good luck

    I've had a hysterectomy but still gave one overy, and I had endo in uterosacral ligaments, all excused, but I'm still in daily pain, not half as bad still not great, xxx

  • Thanks Tboag - yes hyst was in a bsge centre (Oxford) I haven't seen full op report, told it was excised - but not sure if all was or just some of it?

    Glad your ovary is still working for you :) I had one left in - but it failed after 5 or so weeks - hence HRT :(

    I had heard of diaphragm endo - that's all I need! :-0

    Hope it's not that - I don't get the collarbone pain all the time - but when I do - OWWWWW!!!

    My low back and left hip pain is getting to the point of being as bad as it was before my hyst - really not happy about it - I'd hoped it would have been sorted by my op :(

    How do you manage with yours?

    Due to see my surgeon for a follow up appointment on Jan 23rd so I hope she can help me.

    Take care xx

  • Hi,

    I had lap on Monday and had the endo excised from my left US ligament and my hip and back pain is gone instantly. It's amazing to me that my gynaecologist doesn't think it is related but for the second time this pain has gone straight after my lap. I have endo on my left US ligament but I get pain in my back and right hip and buttock area. I understand that it doesn't logically make sense but that disappearance of the pain immediately after excision leaves me in no doubt that they are linked. Not sure why the doctors are not willing to look into these symptoms more and find out why women with endo experience all these extra symptoms.

  • I remember when I was trying to conceive again after my first.

    I usually had 3-4 cycles a year when I had tender painful nipples .

    I often wondered if maybe those few times I had gotten pregnant and lost early .

    I always had painful Breast two weeks before periods.

    I was told it was normal but nobody I knew that did not have endo ever had that symptom .

    One surgery my dr said he could cut a nerve so I would not feel as much pain.

    I don't know if it was done I assume ppl have heard of it.

    If you are on HRT then it could kick up any endo that could have been missed .

    But I had a lot of pain with just adhesions alone .

    It's like a disease all on its own.

    And adhesions seems to cause just as much pain as endo .

    Adhesions could be sitting on a nerve causing back and leg pain .

    So if a dr says

    No it's not possible for you to have pain after surgery just know he is wrong .

  • Thanks Shelly 92,

    I'm assuming the HRT must be the reason for my sore/sensitive breasts.... ??

    I have suffered badly with adhesions before too... so I'm assuming I have those and the HRT is causing endo pain too :(

    Just so fed up of being in pain - it's been really bad in my hip and low back again today.

    I'm really struggling with sleeping still too.... I'm absolutely dead on my feet - but then I'm tossing and turning and I just can not sleep - hence me writing this at 02:08 in the morning!

    How do you manage?

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