do I ask for a 2nd opinion - emotional rollercoaster

I was diagnosed with stage 4 endometriosis after having an ovarian cyst removed in December- told deep/recto vaginal endo (pouch of douglas completely obliterated). I had been to the GP and had numerous scans but endometriosis was only confirmed from December laparoscopy procedure. Went back to see consultant who initially advised Prostap injections for 12 months with HRT but was clear this was to only bide me a year until I would need total hysterectomy. Then at my 1st Prostap injection appt I was told that due to the extent of the disease the hysterectomy was recommended sooner due to the risks of adhesions whilst waiting that year. I consented for the hysterectomy procedure and even had my pre-op assessments completed. I was then called back to see the consultant this week to be told that having reviewed my case with a fellow consultant the operation risks were too high i.e. bleeding/bowel injury (potential need for colostomy). Understandably - my head is all over. The plan for now is for me to stay on Prostap and HRT hoping that my periods will stop. if not MIRENA coil is the next step....I am struggling to tolerate the current treatment (nausea/headaches) and I am worried about getting my pain under control....I would really appreciate anyones thoughts......

9 Replies

  • Hi was this through a general gynaecologist or a specialist from the BSGE website?

  • gynaecologist i think - how would i know if BSGE specialist?

  • Have a look on the BSGE website if they are not on there then find one that is near you and go back to GP and get referral to them for a second opinion. It is nhs guidelines that severe endo is only treated by a specialist not a general gynaecologist as they are not qualified or experienced enough. So please get that second opinion.

  • didn't know about NHS guidelines ...will get referral - thank you so much

  • do you have a link to these guidelines? had a quick look but couldn't find it - would like to take to GP with me ..thanks in advance

  • Don't know how to put a link on . All I did was googled BSGE (British society fo gynaecological endoscopy). If this doesn't work search on here for a lady called Lindle . I know she has posts on how to find a specialist.

  • Same as Jean said, was this by a bsge specialist, ???

  • Hi - click on my name to see my post on how to find a specialist centre but this treatment is appalling and the gynaecologist is completely in breach of all NHS regulations for not immediately referring you to a specialist centre. Where are you located?

  • I agree with the other ladies. Don't do anything until you see an endo specialist. I have stage four with bowel involvement and had both an endometriosis specialist and bowel specialist working together prior to my surgery. It's absolutely critical that you have the right people looking after you as your condition sounds a lot like mine was prior to my surgery two years ago. I ended up having some bowel removed so both surgeons were involved in the op and after care. A GP should not be deciding on your treatment as they wont have the expertise.

    FYI I had a Mirena fitted during my op two years ago and my specialist has recently confirmed that no new endo has formed since my last op. The Mirena stopped all bleeding so I no longer suffer from severe bleeding. However this is my experience and it may be different for others.

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