Hysterectomy finally on the horizon

Diagnosed with severe endo 2012. Multi laps every year or so. Been told too young for major surgery (in my 30s with family complete) even though Ive asked if it's an option.

Now been told that as 2nd course of prostrap wasn't successful and pain management has not been working in the last 2 years now been told hysterectomy is now an option but as endo is all over my bowels and pouch of douglas I need to be seen by a bowel specialist and possibly referred to a more specialist hospital for the op to be carried out.

Would love to hear from any in a similar situation or who have gone though a similar op.

9 Replies

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  • I had this surgery 3 weeks ago - you MUST make sure you are seen at a bsge centre if you have disease on the bowel as this is a complex surgery. Please don't have it carried out by a general gynae, even if they tell you they are able to do it. You may also need to make a decision about whether or not you keep your ovaries. I had mine removed as it's been shown that the risk of the endo returning is much reduced if you do. So far my recovery has been rough (I've been back in hospital twice) but in terms of the hysterectomy decision, I am overall already in less pain and don't have any regrets. Please feel free to message me if you have any specific questions. x.

  • Jo, may I ask what has caused you to go back into hospital twice? X

  • Sure. I had problems with pain 5 days post op (my bowels basically went to sleep after the surgery and when they started working again the pain was just unbearable) and spent a night in A&E for pain management. I then got an infection in the vaginal wound and had a massive bleed 16 days post op (lost about a litre of blood) and had to go back to A&E again for that, I was admitted and spent 2 nights in hospital for IV antibiotics and monitoring.

  • Hi I had a full hysterectomy, removal of ovaries and also a bowel resection in Jan of last year for the same reasons as yourself. I was seen by 2 senior gynocologists and a bowel specialist. My operation was done as a laperotomy not keyhole surgery due to the severity of my endometriosis. unfortunately haven't had any children so making the decision was a bit harder. I can honestly say the benefits have out weighted the risks for this. I am no longer in extreme pain (I used to take dihydrocodine, morphine and pethidine daily) I have a life back and can actually do normal things for a 32 year old. Yes I am struggling a bit with the emotional side of things but I'll get there. X

  • Hi

    Did you find any weight gain after surgery. How about your personal life coz after removal of ovaries I heard that feelings may decrease or increase? How far it is true? Doctor advised mr for hysterectomy. So little tensed about all these.

  • Hi I have gained 2 stone since my hysterectomy but have managed to loose a stone of this do far via healthy diet and exercise! X

  • Please get to a bsge centre so you get the best team for this. I had my hyster by General gynae and was left in worse pain as endo all over POD and bowel and the op caused adhesions. I finally got a bsge clinic to help two years later

    Good luck

    bsge.org.uk/centre/

  • I'm having my full hysterectomy on Monday, I'm 34, married with one IVF child. I've been under the care of a specialist endo consultant for 12 years, endo in bowel too but hoping they don't need to resection.

    Good luck - an endo specialist will know if a hysterectomy is the right option for you

  • Hi everyone! Thanks for the advice. I have now received the date of my follow up appt with the gynae consultant - 15th May. He did mention being referred to somewhere else if needs be at our last appointment but following your advice I will be asking to be seen at the bsge centre at John Radcliffe, Oxford. Thanks to you all and Happy Easter x

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