Down and beat by endo.

[EmmaLK]

Hi I'm 24 now but when I got diagnosed with endo I was 22, it's was worse year of my life not knowing what the pain was about and doctors not taking me seriously. I was eventually took into hospital and had emergency lap to find I had endo. And ever since my operation I've had complications. They told me if I of had children they would have gave me a hysterectomy but because I haven't got any they don't want to take that chance away from me.

I've tried everything they have suggested, hormone tablets different types of pills and now I have Mirena coil in and on the pill at the same time! Nothing is working, I've even tried changing my diet as I read it may help! I'm in constant pain so I'm full if pain killers all the time. I'm so down and depressed it's unreal I don't know what more I can do or what they can do'

I was wondering if anyone knew if going private I may get more help than the nhs have came up with.

Emma x

[Catness]

Hello

In my experience I have found that paying to go and see a consultant privatly (who then refers you back into NHS) not only means it's a lot quicker and more efficient, but also I have found the consultants to be more attentive and knowledgable (I have even seen the same consultant on the NHS but because privately they have more time etc It was like I saw a whole different consultant!).

I'm having my third op at the end of June and am staying private as I have become so poorly so quickly, I can hardly work and have no life outside of endo. I'm having excision surgery so I am hoping this helps a little. I'm 24 next week and so fed up feeling like this all the time.

I think if you can afford it, paying to go and see a consultant privatly (even if it's just that initial meeting that's private) would really help. Do your research and make sure you find one that also works on the NHS and specialises in advances endo or your symptoms specifically.

Good luck! Xxx

[Hidden in reply to Catness]

Can I ask how much the excision surgery costs?

And also how long have you had to wait for the surgery ?

Thanks,

Barbara

[Catness in reply to Hidden]

Hi Barbara

For excision of endo, possible unsticking of insides and a hysteroscopy (don't know if I've spelled that correctly! Camera in womb specifically looking to diagnose adenomyosis), surgeons, hospital and anesthetiser a fees I am looking at just under £4500. I could of had my surgery next week (having only seen my consultant for initial consultation 2 weeks ago) but it's my birthday the day after so I opted for the end of the month. I hope that helps feel free to message me if you would like to discuss it further xx

[Hidden in reply to Catness]

Thank you.

I was expecting it to be more expensive but that seems very reasonable.

Good luck for your surgery.

X

[Endo_Girl33]

My GP told me that I had IBS and that nothing else was wrong with me. Then I went to see a consultant privately and he didn't even have to do a diagnostic lap on me as he could feel nodules of endo in my vagina. He couldn't believe that my GP didn't pick up on it and that he was ready to write me off and have me suffer. I couldn't afford to have a lap privatley though so I'm on the waiting list and I'm having one in Septmber. In the meantime the private doctor advised I go on Zoladex, which I've been on for 9 months now.

Going private definitely helped me and was really worth the money.

I hope you manage to find some help. Remember you're not alone in feeling this way xxxx

[sj_is_charmed]

Alternatively, you could be asked to be referred to a specially accredited Endo centre. A list of them can be found here bsge.org.uk/ec-BSGE-accredi... and I though I have to travel over 100 miles, it is well worth it!

[kyla78]

I would also suggest you go on bsge.org.uk website and ask to be referred

[stealth19]

I had my lap privately and I was diagnosed with endo. However went back to see him yesterday and because I still have endometriosis, I apparently don't have endometriosis...I've said I don't want hormonal treatment and his response to that was to say I probably have some bowel complication then.

What I'm trying to say: although privately you will be given much more time and attention, it still comes down to how good the surgeon is!

[EmmaLK]

Thank you all for your suggestions I am waiting for phone call off my doctor tomorrow morning to see if she can get my appointment moved forward for the consultant, I will ask to be referred to endo clinic. Thank you again you all been a great help xx