This is all so new...

[Florencexx]

Hi, up till a few weeks ago I had heard of endometriosis, but that was all, it was a word.

I had gone to my Drs in November 2015, after suffering bad pains for a couple of years, they had got to the point that I had to take a few days off work each month, the pain was incredible, waking in the night crying and trying to rock myself to sleep, sitting on the loo in tears trying to wee was so painful not to mention walking.. Anyway I would be OK after 4/5 days, but then the next month it would start over, finally decided to go to GP mainly to get some pain relief .. Fast forward to July, 8 months later, I have just had a laparoscopy and hysteroscopy to look inside and was only told 2 weeks ago that I have severe and extensive endometriosis, with all my organs stuck and adhered together... I did not even know or fully understand what endometriosis was? And now I have this, I don't know if severe is bad? or if there is a scale.

I was put straight on an injection a few hours after the laparoscopy which will be given at monthly intervals Decapeptyl, I did not know what it was for, but was told it will reduce the endometriosis and then I will be given a hysterectomy.

Since having the injection, I have had really bad chills, and a massive head banging headache, feeling like my eyes are being pushed out of my head! I don't know if this is normal or not, I know the injection shuts off the pituitary gland in your head, so is this why I have the extreme pain? I am due my next injection in about 10 days and I don't know if I am doing the right thing? As you can imagine this has all come as a huge shock, I don't know where to turn or what to do for the best. Xx

[Hidden]

Bless you... I am sure others will reply to this post. Are you under a specialist endo consultant or a general gynae? How old are you? I have always refused hormone treatment, I am under the impression that it will not help anyone with stage 3 or 4 endo. If it gave me those symptoms there is no way I would continue. That is NOT normal. X

[Hidden in reply to Hidden]

Sorry, there is a scale. 4 is the worst, 1/2 is superficial. But it is mainly used in America. If your organs are stuck together, your endo is not superficial.

[Florencexx in reply to Hidden]

Thanks for your reply, from the consultant talking to me afterwards he sad it was bad, and that if I wanted to have children I would not be able to due to the severity. Fortunately I already have a child (now teenage) and do not want any more children. I am 40. I don't think I am at a specialist centre but I did ensure that the gynaecologist was well respected in his field as I did research before hand. I almost paid privately to see him but was quite fortunate to get a cancellation within the NHS in my initial consultation, and then only waited 3 months for the laparosocpy/hysteroscopy.

[Hidden in reply to Florencexx]

Have they discussed a surgical treatment plan? The fact that they have out you on hormones would suggest that they are not endo specialists. You should be treated now by an endo specialist. Have a look at bsge.org.uk/centre/ to find your nearest. Also look at Lindle's posts on here for further guidance on what to do next. If you're not already on endometropolis on Facebook, then I would join that. Some world leaders in the treatment of advanced endo post/answer questions on there. I have found it invaluable and chosen my endo specialist by chatting with ladies on there. Good luck! X

[Tboag]

You should Defo be with a bsge surgeon, go to your Gp and ask for a referral, if it's exstensive your gyne SHOULD have past you over to a clinic but unfortunately some don't, I think it's a ego thing sometimes,

But the surgeon that are on the list have had more training to excise ENdo and you may not need a hysterectomy if they think they can remove all Endo,

A hysterectomy will not cure endo and unless you have a thorough excision job done at the same time you will still be in pain, I know course that's what's happened to me , I had a hysterectomy for adenomyosis and excision. Work, by a genral gyne, a brilliant gyne, but unfortunately im still in pain, so I'm now on list with a bsge specialist and he will go back i and see if anything was missed,

Good luck and welcome