Endometriosis UK
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had hystectomy about 2 months ago

hi i had a hysterectomy around 2 months ago still have 1 in half ovaries I'm getting pelvic pains pains threw my back side and down my legs it doent matter wht i take the pain doesn't go away is this normal i thought all that pain would go away .

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Sorry to say this sounds like my experience. If it is, it's because they didn't remove all the endometriosis at the time of your op. I had to fight and wait two and a half years to finally get excision of endo and removal of adhesions and bowel unstuck from pelvic wall which were all caused by endo and hyster.

If it doesn't get better in another month then get your gp to refer you to a bsge centre.

Good luck.

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thank you

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Hi, I am in a similar position, so I don't think I can help at this stage, but can sympathise.

I had a hysterectomy 6 weeks ago and assumed all the pains would have gone. I've developed excruciating lower back pain (a new pain for me). A pain on my right side that I have had developing over the last year has come back with gusto and now I have the occasional right leg pain and limp thrown in. I have been put on Naproxen for the pain and Lansoprazole for the reflux/chest pain that the painkillers cause at night. The painkillers are not working, I am limping by day and awake from early hours until dawn.

My GP is treating the pains as scar tissue and healing from my TLH and BSO with rectovaginal excision. He has said it will take time to heal. I am sceptical as the side pain is the same one before surgery but more intense. I did wonder if it was kidney related as I have had at least 2 UTIs since the operation and traces of blood in urine. Or a trapped nerve as the leg is involved.

It might be worth investigating other issues. Like you I had hoped all the pain would go with such a radical surgery, I am sceptical it's not just pain from surgery.

Let me know how you get on and hope you find some answers.

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thank you all my pain is on the left side its fustrating I'm hoping its just the recovery i hope it gets better for you as well does it mostly happen at night with you guys as well when trying to sleep but with the pain you can't sleep and like me always up and down

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I have it during the daytime, but it's dull and it eases with gentle excercise/walking as long as I don't overdo it. Night time is unbearable and it's destroying my sleep. I fall asleep ok, but it kicks in after 2-3 hours laying down and rapidly increases to a chronic hot throbbing pain. I sneak out of bed (trying not to wake husband and children up) to go to the loo and exercise, stretch, go back to bed and try to get back to sleep. Invariably, this doesn't work.

I am very concerned that I was dealt with by a general gynaecologist and not at a BSGE centre. My GP says the consultant has removed my whole reproductive organs and adhesions. I did ask if the pain could be any residual or difficult to see endometriosis and he said it was unlikely.

Was yours treated by a general gynaecologist or at a BSGE centre?

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yes the same as me by a general gynaecologist i understand I'm feeling the same as you i have 100 hot showers a night it help eases it but then when i get out its back to pain i feel sorry for my husband he try to help me he feels helpless i just got to put up with it

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Neither of you need to put up with this. Get your GP to refer you to a bsge gynae - my hyster was done in general gynae by one who believed endo would die off. It doesn't. You'll have lots of medics tell you endo can't be there after a hyster but it can.

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Thanks Marcia for sharing your experience, it really helps having some fore-knowledge, just need a receptive GP.

I've agreed to try the pain relief for 2 weeks and leave off HRT for Year to 'let it die off'. Sounds like both my consultant and GP have the same outdated opinions on that one. I have my proper 6-8 week hospital follow up in 2 weeks and I am going to request the referral to endo specialist centre at the hospital. If they don't then I'll try the GP on the basis of pain isn't working and pain is clearly still there. My old GP at the same survey missed the endo completely, so I'll use that as leverage with new GP, her boss. If that doesn't work I'll have to get creative.

Lesdaile - sorry to hop on your post, but hopefully it helps to know someone is experiencing the same issue and problems. I'll let you know if I find a way into a BSGE centre or endometriosis specialist or any other helpful info.

Keep sane,

Melanie

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thank you ladys it does help knowing there is people out there who understands thank you both for your reply it helps :)

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Mel

Either consultant or GP can refer you to bsge endo centre. Tell them you feel endo not responding to all the treatment they've suggested and you're therefore entitled to referal to bsge clinic. Several have never heard of them so go armed with knowledge of where you want to go - you can go to any centre.

bsge.org.uk/centre/

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Please go back to your GP and ask for a referral to a bsge centre - I had a hyst +BSO plus excision of endo at a bsge centre 7 weeks ago and I have no pain. If you are still in a lot of pain it needs to be investigated.

Best of luck. x.

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