HELP

Hi I hope someone can help me in had a complete hysterectomy 5 years ago as severe endo and also on my bowel I had to make a decision to either have bowel surgery or a hysterectomy I was advised to have a hysterectomy I have been on hrt since but the last few months I'm getting the worst pain ever 3 weeks out 4 I cannot function severe pain and fatigue I'm taking tramadol naproxen ampitripyline co codamol but how can I have a normal life just don't know what to do where do I go from here ?

10 Replies

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  • Hi. So sorry to hear about your pain. I totally empathise as I had hyster and ovaries removed in Feb 2015 and been in excruciating pain daily. I'm seeing a BSGE specialist to try to convince them to do excision of endo as it was left behind at hyster but struggling to get them to listen as it is unusual for endo to continue after hyster but it does. Have you been on a HRT with oestregen? This can feed endo. Ideally a combined oestregen and progesterone one should be used - this is what menopause clinic and endo specialist told me.

    I'm sure that's not what you wanted to hear but best to try to get it sorted but it will be a fight so keep up the pain killers to give you the strength to fight.

  • Hi Marcia, it's actually not unusual to have endo after a hysterectomy. If the endo isn't removed at the same time it just continues on. I think a lot of surgeons still believe that it dies off after ovaries are removed,but if the endo is severe this isn't the case as it can produce its own supply of oestrogen.

  • Thanks jean. I know that it can continue to grow, or regrow, but trying to persuade GPS, surgeons - even BSGE ones is tough and a fight I keep having and it's exhausting. If youve any tips on how to convince them I'd welcome them.

  • It definitely sounds like whomever did the hysterectomy didn't treat any endo still in your pelvis proberbly as they weren't specialised in this area and didn't understand the disease!

    You must go to a specialist endo treatment centre (which can be found on the bsge website) it will also tell you where your nearest is and all the details to take to your GP and insist on a referal ( if you ask they CANNOT say no it's your right)

    It would benefit you to watch endo what look it up online as it is very informative and help you understand the disease.

    Good luck sharon

  • i ad hysterctomy 10 yrs ago & now have pain like yourself. On tramadol & oramorph when really bad. Get yourself referred to bsge centre as Endo can come back. I think more & more women who have had hysterectomy for Endo are experiencing problems later so don't get fobbed off. As unfortunately gps are not clued up on the fact it can come back & not knowing correct treatment pathway to bsge centres. Get all the info u need from here or from lindas Facebook page Endo support uk i think. But if u have any questions ill try & answer best i can. Hope today is a good day for u xxxx

  • Facebook page that's best is endo revisited UK as run by Linda who had hyster and endo still problem after.

    facebook.com/groups/1148144...

  • Thank you for your help do you know if it ever stops even if I come of the patches but still on bowel can it die off sorry as I'm not very clued up with all this and would mri show everything or ask for laparoscopy x

  • Ask for laparoscopy to be sure as MRI can often miss it. To my knowledge it won't die off, on or off patches, you need it removed and excised at that.

    They may suggest you try off patches to see what happens but menopause symptoms can be bad and of course you need something to support bones and heart health.

    Good luck

  • Thank you all for your help as feel so alone and isolated as I don't have any friends who have even heard of it and trying to explain how I feel is very difficult for people to understand I think they feel I exaggerate the intensity of the pain 😔

  • Speak to your GP and ask for a specialist gynae referral . It would be better if you could be refer to a specialist hospital . So that they could investigate further your symptoms. Hoping that you get sorted soon.

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