I need some help and advice on private specialists?? anybody out there who can help please???

[claire1987]

Hi im new to the site but unfortunately not new to endo, i was first diagnosed and treated for the disease at 19years old im now 27 and last year in november i had another lap and had the endo removed AGAIN and they also diagnosed me with adenomyosis but says this can only be removed with a hysterectomy???!! i am in a long term relationship and the consultant last year told me to give myself a few months to recover from the op and come off my pill (yasmin at the moment) and try for a pregnancy but a few months later i was still having major issues with pain and bleeding after surgery so was referred back and they told me the same thing to try for a pregnancy and go from there....

now im no expert but baby making is pretty much out of the question when the red river is flowing constantly and in my case i have recently been bleeding 3/4 weeks at a time even whilst continuously taking my pill (havent had a break from it since last may so in my eyes shouldnt really be bleeding at all) :/ i have tried several contraceptives and various hormone treatments and pain management all to no avail (and just today i have been put back on the lovely northisterone for a week to stop the bleeding).....

so i have been looking into seeing a private specialist which only deals in endo itself as i feel 85 years of age not 27 most of the time and cant go on as i am and so i was hoping maybe one of you lovely ladies has been down the private route and could point me in the right direction and maybe had any success yourselves kind of at my wits end right now??

Thanks

CLAIRE XX

[stevieflp]

Hi - I have sent you a private message.

Best wishes x

[EndoUK_Comms Moderator Endometriosis UK]

Hi Claire1987,

We recommend that women seek out institutions that have been peer-reviewed by other medical professionals and deemed centres of excellence, rather than relying on recommendations of other people. We feel that a good place to start looking for this information is through the BSGE website and Dr Foster website.

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

The BSGE accredit specialist endometriosis centres have consultants who are specialists in the field of endometriosis.

The Dr Foster website can be used to find endometriosis specialists.

drfosterhealth.co.uk/co...

I hope this information will enable you to widen your choice of consultant.

All the best,

Endo UK

[hayz]

I have been told that adenomyosis can be sorted of treated (60% chance of stopping the pain) by cutting the nerves from the womb. Apparently it's a relatively new technique, been using it for a few years but with success, some women it's stopped the pain for others it reduced it. This was what my surgeon has told me. This technique does not affect fertility.

[claire1987]

Thank you Stevie, thank you endouk I have had a look at the websites & have found a few consultants to look into oh right hayz that's good news they didn't really tell me a lot about the adeno but that's definitely something to look into thank you & even if the pain is slightly reduced I'd be mire then happy with that right now lol xx