Endometriosis rules my life

I am 32 years old and got diagnosed 8 years ago with endo during this time I've had 3 children which has not eased it at all and after not being able to take no more and various tests and scans I had a lap 11 days ago To remove a 3cm cyst off my right ovarie and a cyst off my tube and my tube as it was twisted and also had the merivra coil fitted I woke up to be feeling crushed after being diagnosed with a bulky anteverted uterus at 8cm extensive endometriosis stage 4 with my bowel being attached to the back of my uterus my POD is obliterated my ovarian fossas not accessible endometris on the pelvis side walls (both sides more to left) and endometriosis on my uv fold I am now still in agony thinking surgery would eased the pain and wishing upon a hysterectomy as soon as I can I'm tired moody my eating habits are awful just snacking never eating Meals as don't feel hungry and constant pain in my side legs back and stomache every period feels like I'm going into labour along with me having sickness feeling constipated and bleeding like I've been shot by an ak47 I really don't know how much more of this pain I can take 😢

11 Replies

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  • Hi Joanne - where in the UK are you?

  • Wolverhampton x

  • I too am 32 and i am 7 weeks post hysterectomy . my life was very much like yours the bleeding the pain and endless laperoscopies. I have had minimal pain since and am healing well and now back to work . please go back to your consultant do not let this rule you. My consultant Dr Ford is amazing based in Surrey .

    I hope you get some help and pain free days soon.

  • Hi, so sorry to hear your news,

    A bulky womb suggests adenomyosis and the only cure for this is a hysterectomy but a hysterectomy will not help your endo , this needs to be a thorough excision job done by a specialist, as for the endo, are you under a bsge specialist centre????

    And did they remove any endo during your laparoscopy????

    I had both and wasn't dealt with at a bsge centre, I've had excision and a hysterectomy and I'm still in pain, so please make sure you get the right surgeon, xxx

  • I'm have been treated through the gynae unit at my local doctor and have to go back in 4 months for a reason plan of what to do

  • Hi Joanne, sorry you're going through all this. Was your laparoscopy diagnostic (ie. Did they just look around) or what did they do when they were in there? The best treatment for endometriosis is excision surgery with a specialist surgeon at a bsge centre. Especially with Endo as advanced as yours is. You shouldn't be operated upon by General gynae, and by the sounds of it multidisciplinary surgery with a bowel surgeon alongside could be needed.

    Please bear in mind recovery for even a simple disgnostic lap can be 3-6 weeks. Then 6-8 for a lap where some work was done. For excision of stage 4 with bowel involvement it's major surgery - recovery 8wks+, it took me 3 months. Your body needs time to heal and recuperate before you'll see any difference from the op.

  • I presented at my doctors and got referred to the gynae unit and under a specialist there they had to remove 2 cysts and my right ovarie and tube when I had the lap done other week and that's when they gave me the long list of other problems x

  • Ok, so presumably they will be planning to remove the pod Endo etc. at a later date but are giving you time to recuperate from this op before review to decide what the next move is.

    I know it's a lot to take in right now, take it easy on yourself and just concentrate on recovery. The Endo diet and holistic therapies can help in conjunction to medical treatment.

    This website ( endo-resolved.com ) has a lot of info on things like that, recovery and also all the medical treatments you can pursue to manage endo.

    Hope you feel better soon, it will take time but you will begin to feel more like yourself xx

  • Thank you for your help xxx

  • Hi,

    I agree with the others,this is a complex job now and you need the best care available.

    Use this recovery time to find the best specialist for this job.

    You will need thorough excision of all endo and you will need that bowel specialist.

    You might need the uterus taken also.

    Its not insurmountable and it has been found which is the main thing.

    When you are weighing your options,think quality of life and pain reduction are the goals.

    This will get better after the next surgery,it has to.

    If they do all the necessary work you will be feeling much better.

    We will all be here for you

    Kind regards

    Rose

  • Hey,

    I just read about your mirena.

    Id knock that on the head as you dont need to go through that until they do a hysto.

    Thats ridiculous they put that in at this stage it will aggravate an already inflamed uterus and you will bleed more with that.

    Check your iron levels and b levels before you go into next surgery and pull them up as much as you can.

    If you have been bleeding and in pain for a long time they will be down mate.

    Rose xx

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