Information Please After Hysterectomy

[reader26]

Hi. I am 62 and went through the menopause many years ago. A few years ago I started bleeding again and was diagnosed with something other than endometriosis. I decided to have a hysterectomy as it was a condition that could have turned cancerous. During the keyhole op the Consultant terminated the op as he found that my womb was stuck to my bowel and if he had continued the way it was I might have ended up having to wear a colostomy bag. He continued treating me another way. However, all this time I had chronic lower bag pain but this intensified so much that it started affecting my walking. The Consultants kept saying it was nothing to do with what I was being treated for so my GP sent me to get my back checked out. That was clear so he referred me back to the Gynae Consultant and I told him I wanted to go ahead with an open hysterectomy.

The op went well and there was a bowel Consultant in theatre as well as my gynae Consultant. As soon as I came round from the op my back pain was gone. I couldn't believe it. It was so lovely. The only pain I had was from the actual op itself.

During Summer last year my back pain suddenly came back and it is now as intense as it was before and in exactly the same place. I can hardly walk more than a few yards without having to sit down. I keep saying to myself it can't be anything to do with endometriosis as I haven't got my 'bits' anymore. I have been to see someone about my spine and the MRI came back clear so I don't know what it can be now. I have tried to search for information on whether I can still have endometriosis after previously going through the menopause and after a hysterectomy but can't find anything. Has anybody come across this before or perhaps knows where I can find info out, please. I am on all the painkillers I can have, Tramadol, Naproxen and Fentanyl patches and am getting desperate. Many thanks if someone can help.

[cmbxm]

Have you been checked for adhesions or scarring from your previous surgeries?

This might not be similar to you, but a few years ago I had severe back pain that wouldn’t go away, turns out it was prolonged for so long because the way I was sitting and laying (because these particular positions were the only ways my back wouldn’t hurt) was shortening muscles in my back and when I was sitting up right and walking it was causing muscle strain, I needed lots of physio to re-lengthen the muscles in my back, but it did eventually stop the pain.

Hope you find a solution soon x

[reader26 in reply to cmbxm]

Hi Many thanks for your reply.

No, I haven't been checked for adhesions or scarring following my ops. Could that cause exactly the same pain?

My pain is there all the time and sitting in certain positions doesn't ease it at all.

The physio gave me some exercises as they think it is to do with osteoarthritis at the base of my spine but they haven't helped and I can't get out of my head that it is exactly the same kind of pain and in exactly the same place as before my hysterectomy. The pain immediately went after my op.

Am pleased to hear that your pain has stopped now and that physio helped you.

xx

[cmbxm in reply to reader26]

Adhesions can cause similar pain as they can grow exactly where you’ve had something removed, it’s definitely worth mentioning this to your doctor x

[reader26 in reply to cmbxm]

Thank you. I certainly will. X

[Gwen172]

Hi, I think I am going through the same thing. I had total hysterectomy over 24 years ago for endometriosis. My womb was stuck to my bladder. To be honest the pain never really went away. I have seen countless specialists thinking it was my back causing the pain. I have low back pain radiating down both legs and under my feet. I have just had to put up with it. I5 was only last year that I actually realised what it was. I have frequent flare ups of really bad period pains. What on earth is going on??? Anyway, I have seen a specialist in a BSGE centre and he thinks it is still endometriosis. I had a mri scan the following week. This was all private. Nothing showed on th3 scan. Next step is laporoscopy. The only definite way of diagnosing. Not sure really which way to turn. You never get rid of endometriosis that’s why it’s calked a disease. The relief I have had to know I’m not going mad!! Do I just stay as I am or more ops. I am on pregabalin, dihydrocodeine amitriptyline. My drs here are useless. They just are ignorant to this disease. They think because I have had hysterectomy then I’m cured!! Just had to reply. Wishing you all the best. X

[reader26 in reply to Gwen172]

Sorry to hear about all your pain and I really sympathise with you. Before my open hysterectomy I had so much trouble convincing the Consultants that the pain might have had something to do with the endo. I couldn't believe it when the pain went after my op. I do hope you find the cause very soon and hope you decide the right path for you to take going forward.

Take care x