Post hysterectomy pain: 36 yr old. I had a... - Endometriosis UK

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Post hysterectomy pain

Kris36 profile image
7 Replies

36 yr old. I had a total Hysterectomy 5 month's ago for pelvic pain and very little endo. Last yr I had my thyroid removed because of cancer. At my consultation I explained my concerns to my doctor about not having a thyroid and he assured me it wouldn't effect me.

Let me just say, Before my hysterectomy, the pain was nothing compared to what I'm experiencing now! chronic uti s, lower left pelvic pain, back and hip. if I had to rate it,it would be a 6 everyday. I never had this much pain in my life, even before my surgery. sex is a thing of the past because it's horrible and my husband don't understand. My doctor says it has nothing to do with my surgery 😕 I'm so desperate for anything advice I can get. I have a apt. with a general surgeon on December 5th. Anyone going through this?

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Kris36 profile image
Kris36
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Marcia71 profile image
Marcia71

Hi ther. Sorry to hear your suffering. I too can totally relate as I wasn't in anywhere near as much pain before my hyster and ovaries removed in Feb 2015. General gynae's or surgeons just don't get it. They will check bowel and bladder and often find no problem and then say there's nothing they can do. You need to get referred to BSGE surgeon. See Lindles posts on treatment pathway.

Apart from endo causing pain it can also be adhesions. Caused by endo or the surgery itself. Gynae is best person to remove adhesions & check for endo. They also need to put a barrier inside to hopefully prevent any more adhesions forming - this is a gel or mesh that will dissolve in a couple of days. Should always be used but again not everyone does.

How did you have your surgery done? Mine was by incision which i know now is not best for endo sufferer and more likely to cause adhesions.

Best of luck. It's a long and painful battle to get sorted as loads of surgeons and other medics will try to tell you endo can't cause problems after hyster and there are too many of us around to sadly prove this untrue.

Kris36 profile image
Kris36

I had a vaginal Hysterectomy with a robotic machine. They removed everything.

nickym1 profile image
nickym1

Yes!

Me.

I'm going through this too.!

My thyroid was removed in 2013 because of cancer, and I'm 5 weeks post hysterectomy today.

For the last few days I feel knocked for six.

Everything seems to hurt, especially back, hips and shoulders, and I'm exhausted. I'm not ill, but I feel like my recovery is going backwards. My bladder intermittently feels irritated like a UTI.

I couldn't believe it when I just read your post, because it could have been written by me.

My endo was found during my hysterectomy deep in the lower left pelvis. This was (i believe) the cause of my severe pain all along.

I had to continue with zoladex and tibolone after surgery as my ovaries stayed in.

My surgeon is hopeful this will treat the endo, but we'll see.

I've been wondering if my aches and pains are zoladex connected as I'm sure I'm getting hot flashes too. Perhaps the tibolone isn't working for me now.

Sorry for the essay!

Hope you get sorted soon.

Nicky x

Kris36 profile image
Kris36 in reply to nickym1

Be thankful you kept your ovaries, I lost mine and it has thrown everything out of whack with my thyroid meds. it goes up and then back down. I taken 150 synthroid but even this high amount isn't enough.

I have to see a general surgeon for the pain cause it's just unbearable and I have to work. If I could push rewind, I would have never had this hysterectomy. thanks for the reply, I'll update when I see this new doctor.

nickym1 profile image
nickym1

I take 150 levothyroxine (t4)

and 20mcg liothyronine (t3)

So 150 without any thyroid of your own isn't that high a dose.

Is your tsh suppressed?

Let us know how you get on x

Good luck xxx

Kris36 profile image
Kris36 in reply to nickym1

Thats what I dont understand. It was normal on both before I had the hysterectomy,but after is when it went crazy. It went from .0001 to 11.5 to 27.8?? I can't get any good help where I live. 😢 the hormons and pain combined is horrible. I hope you start feeling better with your pain as well.

Thanks for sharing your story.

Nicwales profile image
Nicwales

Hiya your post is so similar to how I feel now and I wonder 3yrs on how you are and if it gets better? And of course had your sex life increased?

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