Just been diagnosed with deep infiltrating endometriosis

[nikki1978]

Just wondering if there is anyone else suffering from this or just endo in general?

I had a large ovarian cyst discovered last June and was referred to a gynaecologist. Luckily he turned out to be an endo specialist and he sent me for an ultrasound which showed what appeared to be a cluster of cysts with partial septation and some issues with the rectovaginal septum.

Then in November he did a laparoscopy to try and remove the cyst but he found one ovary was stuck to my uterus, my appendix caught up in adhesions and the cyst and other ovary were hidden in a mass of adhesions behind my uterus. My pouch of douglas was obliterated (full of adhesions).

Last month I had an MRI to try and work out exactly what was going on with the cyst etc. Just had my results today and he said I have deep infiltrating endo. There is a large endometrial cyst and one of my tubes is blown and full of blood. To get rid of all this involves a 6 month course of zoladex which will induce temporary menopause. This should calm things down enough to operate. Its a 5 hour op involving two gynae surgeons, a colorectal surgeon and a urologist. They should be able to do it keyhole thankfully.

At this stage however I have no pain which can often be the case with stage 4 endo. So we are going to watch and wait.

All a bit full on but I was worried about cancer so it doesn't seem that bad to me at the moment.

Would be interested to hear others experiences :)

Gosh, that sounds horrible. I can't understand why you are not in agony with all of that going on. I have had endo for nearly thirty years and have had virtually every treatment going. I had the six months on Zoladex which was very effective and much of the endometriosis shrivelled up resulting in less requiring lasering away. This could mean that you may be looking at less extensive surgery after the drug treatment. How old are you? I had a drug-induced menopause when I was 22 and then again at 42. Both times were fine apart from a few hot flushes. I would ask for a local anaesthetic prior to the Zoladex injection though - it makes in painless (rather than rather painful)
Are you hoping to have more children?

I'm 36 and no my family is complete so no worries there thankfully. Yes I'm not sure why there is no pain but he said it can happen with the more severe forms. I'm not planning to take the zoladex yet as both the consultant and i feel that with no symptoms (well very few) I won't go for the surgery yet anyway. If and when I do go for it the wait is 6 months anyway so I would start the zoladex then. I have been having stabbing pains during ovulation recently and some pain during sex so there is a good chance that will increase as time goes on. Sorry you suffer from this too but good to know it can be controlled. Do you have much pain now?

Sorry to have taken so long to reply. My endo has been controlled in later years with the Mirena coil. Maybe that is something else for you to consider. It releases progesterone locally and is great at keeping the endo at bay.
My pains are all caused from adhesions from previous surgeries (six laparoscopies, three laser treatments over 30 years) so, again, something else for you to take into account. Every surgery, even surgery to remove adhesions, leaves behind more adhesions which tear if I lift and twist at the same time. The pain then takes up to four weeks to subside.
I would definitely consider the mirena coil. In fact I am surprised it hasn't been offered as it seems to be a standard treatment for endo these days