Endometriosis. A patients’ perspective

Endometriosis. A patients’ perspective

Introduction to Endometriosis

Endometriosis is caused by endometrial cells (cells from the lining of the uterus (womb)) travelling away from the womb and settling mainly in the pelvic cavity, although endo deposits have been found everywhere in the body, except from the spleen. There are various theories of how/why this happens. A few of these are explained below:

  • Retrograde Menstruation (whereby the menstrual blood flows up and out of the fallopian tubes into the pelvis rather/or in addition to flowing out of the cervix).
  • Endometrial cells may be carried to other locations in the body by the blood or lymph fluid.
  • Endometrial cells may be moved to another area during surgery, such as an epiostomy or caesarian
  • Cells in the abdomen and pelvis, which are closely related to the cells of the reproductive system, may change into endometrial cells.
  • Endometrial cells may be deposited outside the uterus before birth.
  • Sometimes, the tendency to develop endometriosis is passed down through families (genetic cause).

Diagnosis of Endometriosis

It was quite a surprise to be diagnosed with Endometriosis! I obviously have a very very high pain threshold, and I also thought everyone had these excrutiating pains before and during the first few days of their periods! One month, however, I had had enough! I was going to see a specialist to re-start The Pill!

I duly saw a wonderful gynae, and to put a long story short, I had a laparoscopy (Lap) and was dxd with Endo. In fact, my pelvis was a complete mess, and I had Stage IV Endo – the worst kind (I don’t do things lightly!!)

Link to various treatments for Endometriosis

Medication fo Endometriosis

I was started on a drug called Prostap – which is a GNRH – a drug that downregulates the oestrogen production – basically, the drug made me temporarily menopausal at the age of 23!! A few months later, I was referred to another gynae, a specialist in Endo and both gynae’s operated on me. From what they said, I gav e them a few grey hairs!! I have since had 4 additional advanced laparoscopies by my wonderful endo specialist.

Adhesions and Endometriosis

Adhesions are also a problem for someone who has Endo. Adhesions can vary from being thin and ‘filmy’ to dense and fibrotic. I always seem to have the latter of the two and adhesions alone can cause great pain – some grow their own nerves!! (Dr Jenner, is this right – I am sure I was told this, but want to check!!)

GNRH Medication and Endometriosis

I have been on another GNRH called Buserelin (with a small break) since 2004.There is no cure for endometriosis, however the idea of this therapy is to reduce/stop oestrogen production so the endo deposits will not grow anymore or even regress. Many people have an excellent outcome with this family of drugs. Because I am ‘Me’, however, my endo decides to grow even on the GNRH. Yes, every Lap I have, gynae finds endo again! This is not usual!!

I am, however, as stable as we can hope for. I know that I will need further Laps, and I try to wait as long as I can before another Lap.