Just diagnosed questioning my treatment options?

[Lillybob]

Hi there! I was diagnosed last Friday after a really difficult couple of years. I had my uterus removed in Nov 2012 as I had adenomyosis. I won't go into all the details as its so long but in brief had a perforated gall bladder, kidney stones of unusual composition and all last year chronic bladder and pelvic pain and urinary frequency day and night. I have been batted between gynae and urology the entire year. I was beginning to accept the prospect that this was Interstitial Cystitis as my gynae diagnosed, the laparoscopy only occurred to discount the urologists theory of endo as I was still bleeding substantially every month, so thankful now that I know what I'm dealing with. It's all over my bladder, cervix and right pelvis I have been excised and cauterised. I'm waiting for my follow up and crammed this week as I knew very little about endo. My gynae said it will be a drug treatment to put me in a menopausal state then he will remove my cervix. My question is, is that enough I'm bothered by what I've read that my ovaries are being left although I won't have a cervix or uterus? Grateful for any advice!! Very confused! Lx

[Impatient]

Not an expert - but my advice is not to have the GnRH drugs at all before having surgery.

Reason is it will certinly put the endo in a dormant state but that only make it that much harder to locate when you do have surgery.

You can get by with only one ovary and thus avoid hving HRT for the rest of your pre-menopausal days and beyond... which is always preferable.

But there is no substiture for having a decent endo surgeon actually remove all the remaining endo.

If they can do that - then there is no endo left for the ovary to feed each month with hormones and if it isn't there is cannot spread.

If there is no uterus there then it cannot spread from the uterus either so effectively you would be cured from endo.

It doesn't resolve the issue of scarring and adhesions which can still carry on growing regardless of any treatment - and may cause pains and problems in the years ahead - but there won't be any endo there to cause new ones to grow.

I have been plagues with kidney stones since I was 15 and my gall bladder was deformed and has been removed after years of problems - lso lost an ovary and doing very well with just one of them left and a very good surgery to tackle endo.

I still have some endo issues, and a mirena in the uterus to stop my periods, but feeling so much better these days. I even have pain free days with no meds required.

I have been through the GnRH treatment after massive surgery - and I went through hell and back with it.

It is prescribed to improve your quality of life - only in many women they do have a very bad reaction to them and you do have to live with that bad reaction because the drugs are implanted in you once a month there is no escape come hell or high water.

So side effects alone is one reason to avoid them - but in your case primarily it must be avoided so that active endo can be more easily seen and decent job done of removing all the endo that remains in the body once and for all.

It should have been done when you had a hysterectomy 1st time round, but anyhow certainly you deserve a decent surgery excision job done now.

Are you being seen by one of the accredited endo centres

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

if not and if your surgeon is not n endo expert surgeon just a regular gynaecologist - then I would speak to your GP and enquire about switching to an accredited endo centre.

It may be that you get offered the menopause drugs after the op - hoping that will stave off post op adhesions - but it shouldn't even be necessary at all, if the surgeon is skilled enough with removing all endo.

Failure to remove any endo lesions will mean they remain active and responsive to the ovaries or to HRT. Hence it is essential to have all of the endo removed if possible.

Hope that makes sense. Don't hesitate to ask for a 2nd opinion from an endo specialist surgeon. You can email or write to them about this if you want them to review the advice you have been given. Most endo experts do not touch GnRH drugs for their endo patients and that is speaking volumes to me about how much of a waste they are. Fobbing you off when really you need a decent operation.

[Lillybob]

Thank you for your very thorough reply I am seriously worried about my gynae now I am going to do my research now and see my Gp. Thank you again for taking the time to by give me advice. Lx