Me, my life and endometriosis

Hi my name is Emma, I'm 32 years old and got diagnosed with endometriosis 6 years ago, after a long battle with heavy bleeding,  fertility issues, chronic lower back and adominal pain. 

5 years ago I had an endometrial ablation After bleeding constantly for nearly a year, this reduced the bleeding to nearly nothing and stopped most of the other systems. 

18 months ago all the symptoms reacurred but this time they were more intense and frequent then previous and I'm become so emotional unstable, crying one moment and being so angry the next. 

I'm currently taking noristorene 25mg a day long. And waiting to go back to see  gynie where I'm hoping to convince them to allow me to have a hysterectomy. 

5 Replies

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  • Hi Emma , I'm sorry you are suffering. A hysterectomy will not cure endometriosis. You need to have all the endo excised . Are you with a endo specialist at a BSGE centre or a general gynaecologist? 

  • I know its not going to cure the endo but it will stop most of the bleeding which will be a start 

    As this is bring many issues of its own. 

    I'm under a general gynaecologist. 

  • Hi I would highly recommend you have a look on the BSGE website and find a specialist near you then go back to GP and ask for a referral to them. Believe me I do know what it's like to constantly bleed.  A specialist may be able to do something that will stop it so you wouldn't need a hysterectomy.

  • I agree with the other poster, a hysterectomy so young can cause a whole host of problems just as bad as Endo and they are likely to leave your ovaries so pain will continue anyway and you'd be left with a double whammy. Get a referral to a bsge centre specialist and make sure you have excision surgery. Having further surgery with General gynae will not treat endometriosis appropriately - risking damage (by untreated Endo) to not only your reproductive sys but also bowel, bladder etc.

    I'd act on this pronto - ask your gp for referral or if you have a spare £150ish book to see a specialist at your local private hospital for immediate consult. They can advise you on the best way forward and how to get onto the nhs list for surgery - you can have it done privately but it's a bit of a waste of time and £££ as severe Endo usually has to be treated with an icu nearby (which private hosp don't usually have). 

    bsge.org.uk/ec-BSGE-accredi...

    Excision surgery, prostap for 6 months (with pill back to back) stopped bleeding entirely for me and when continued to take the pill back to back once off prostap Bleeding was very little, no proper periods.

    I know it can be so painful and frustrating that you would almost agree to having them cut off your head if it would 'cure' things. Seek expert advice and read up all you can on other avenues before agreeing to something that could create even more trouble. 

    If you haven't tried the Endo diet, acupuncture or any hormone treatments it's worth a shot. Diet and peppermint tea made more of a difference for me than handfuls of high dose painkillers. 

    endo-resolved.com/treatment...

    Here's some info on treatments, there is much more on surgery and also natural treatments on that website that you'd find useful xx

  • Sorry to jump on this post but apple bird, you mention paying for a private consultation. How does this work please? If I pay to go see a consultant will I be able to transfer back on to nhs for treatment even if the hospital is out of my area? 

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