Endometriosis UK
34,084 members30,482 posts

Missed work again!!

Struggling to get the pain under control, been trying to get a diagnosis since March!! Finally told that its endometriosis with pelvic scaring and multiple fibroids.....have to wait til the 16th of September to decide what will happen next!! :-( Hysterectomy has been mentioned. I'm 44 and have a tilted and a heart shaped uterus....had two miscarriages and two healthy children both emergency c section! ! Does anyone have similar circumstances or symptoms that give me advice? X

1 Reply

Most of us have tilted uterus or retroverted uterus - that is a normal event for ladies with endo, either naturally tilted that way or stuck in the retroverted position with adhesions.

A bicornuate uterus is a lot rarer, there are a half dozen or so forum members with this developmental defect - I'm one of them - and the severity varies. In my case no kids.

A hysterectomy will certainly remove the fibroids - but it won't do a thing for the endometriosis unless all of that is also removed at the same op.

The usual advice is save at least one ovary - that way you avoid the need for taking HRT for years and years.

But whether you retain an ovary or opt for HRT either option will still provide your existing endo with hormones to remain active, which is why it is really important to get a decent endo surgeon to clean you up thoroughly inside removing where possible, all existing endo.

If you have not yet been referred to an accredited endo centre then that is your next step.

bsge.org.uk/ec-BSGE-accredi... lists them all, find your nearest endo centre, write down the details and take that to your GP and ask to be referred to the endo centre and take things from there surgically speaking.

Meantime you could be taking steps to reduce the number of periods you have, back to back birth control pill packs or norethisterone could help.

There are other longer term methods but they probably are not worth doing if you are likely to have a hysterectomy rather than surgery to specifically remove just the fibroids and the endo.

Another option that you might be offered in order to shrink the fibroids before surgery is GnRH drug treatment. These are very powerful nasty drugs with unpleasant side effects routinely experienced.

The problem is that the drugs put your endo in to a dormant state, which can make the much tougher to spot in surgery, where as being on a period or just after a period at the time of your op will make it a lot easier to see the existing endo and therefore more likely it will get to be removed at that time and perhaps save you needing follow up surgery later on. It is a bit of a catch 22 situation, without the drugs, the fibroids may need open surgery to be removed, rather than a laparoscopy.

But the side effects (long term ones too) of taking GnRH are certainly something to research and take in to serious consideration before you opt for that as a treatment program.

Use the search box on the green bar to look up Prostap, Lupron, Zoladex, Decapeptyl and GnRH. There are thousands of previous posts about these drugs on this forum alone and plenty more through google and other websites. Good Luck with whatever you decide to do.

1 like

You may also like...