How serious can endometriosis get???

Hi ladies, I have been diagnosed with severe deep infiltrating rectroviginal endo and severs adenmyosis. The endometriosis is very severe and has effected bowel,bladder,uterus,cervix,my.entire pelvic sidewalls and it's looking like my lumber spine as well. My question is how serious can endo get??? I'm worried and scared that whilst I've been told by my endo specialist it's very serious how serious can endometriosis become? Xx

14 Replies

  • Very serious and it also depends. What else is going on with your body. From the Endometriosis. And what your health is at time of diagnosis. It can make a person very sick. Depends on what stage is in, too. It will change your life in a lot of ways.

  • Hi Victoria I can relate to your situation well. My insides were a complete mess and it was like spaghetti junction with a mass of adhesions and cysts all over my pelvic walls, uterus, bladder and cervix. I was in debilitating and chronic pain all the time. In fact when I had my very last laparoscopy operation 4 years ago I asked the gynaecologist to take a video (which I hope to put on youtube soon) and it was an eye opener for me to see what a mess I was inside. And suddenly I had a whole new appreciation of WHY I was in so much pain. The key thing I realised about endometriosis was it was an Estrogen Dominant condition and I tried to reduce the estrogen overload from our foods and environment. I made some major changes in my life and, I say this to give you hope, I managed thankfully to heal myself of endometriosis and adenomyosis through natural methods. My mother had suffered terribly from stage IV endometriosis (like myself) for many years and the doctors thought a hysterectomy would 'cure' it - but of course it didn't. The operation left her very depressed and bitter afterwards; and still in pain and bed bound. When things got really bad for me I vowed that I would keep researching and try and find another way. The body is always wanting to heal its self so I researched and researched and learned all I could as to what was stopping it. I retrained in a few areas and I am hoping in time to create content which may be valuable and helpful for other women too. Try not to be too scared and research all you can. In the meantime you may want to start by cutting out wheat, gluten and dairy (there are many wonderful alternatives in the supermarkets these days). Swapping your every day wheat products for gluten free made a huge difference to my pain although it took about 2-3 months to notice. If you need any more info or help let me know. Best wishes

  • xx thank you xx

  • Hello, sorry about your diagnosis, did they take any endo away??? Also what is your next step, ??? What did your gyne advise, treatment wise, endo can do different things to different people, how are you coping so far symptoms ect.

    Wish you all the best xxx

  • Hi there

    Sorry you have this news it is a lot to take in ,I also have a similar case to you .

    Have they suggested surgery?If so is your gaeni an endo specialist?

    The only way I have dealt with this is to take it it chunk by chunk so to speak.

    I have an appointment tomorrow to discuss further surgery ,and yes it is serious what you have been told and the surgery is complex but I have to have faith in my consultant to do the right thing this is the only way I can do this .

    You need time to let it all sink in ...Do you have another appointment to discuss further?

    I do wish you all the best

  • Hi mablesky, good luck with your appointment tomorrow. Please let me know how it goes. Do you have the same severity of endo as I do? I would be very interested in what your consultant says especially about surgery and recovery. I have to wait until after my mri scan next week before I see my consultant again

    Best wishes xx

  • Will let you know am really nervous first time ever I've been nervous about a consult but I am taking someone with me for a second pair of ears !!!

  • Thanks and good luck xx

  • Thank you all for your replies. My endo specialist couldn't remove any endo at the time at it was deemed as too dangerous. I'm awaiting major surgery with several consultants due to the severity. As for the pain it's constant and excruciating

    I'very been very clear and will not be having a hysterectomy. It sounds really stupid but I can feel it's getting worse and I and my consultant can feel lumps of endo in my back. I will try changing my diet but to be honest I'm not eating much as I feel so ill. I would like to know what I might except with the surgery and recovery. Thanks you all xx

  • Hi Victoria 044

    I am in the same position as yourself. I have been told I have severe endo and it has spread everywhere 😔 my last laproscopy theyvsaidbtheh couldn't remove any as too dangerous and need many consultants for my next op. Waiting for an appt to come through today to speak about my next op.

    I am worried too but will be in touch to what they say to me x take are x ps be strong I know the pain is hell !

  • Hi missy22, I wish you luck with your appointment. Thank you for your reply. Means so much to be able to talk to other ladies who understand. Thank you xx

  • Hi catlou, I'm having an mri.scan on Tuesday to investigate my spine,bowel etc so hopefully will know more soon. X

  • I had surgery to remove endometriosis from bowels and ovaries was out of work for 7 weeks there not an easy 7 weeks but kinda worth it I was painfree for a little over 12 months, pain is creeping back now but believe that to be my own fault as was not sticking to the diet its so important and makes a hugh difference how you get good results

  • Hi all, does anyone else have deeply infiltrating rectroviginal endo stage 4 and severe adenmyosis?? Would be lovely to chat to someone who is in the same position as myself and awaiting or had major surgery. Many thanks x

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