I've had Endometriosis for 15 yrs, now heading for a Hysterectomy!

Hi, I'm a long-term sufferer of Endometriosis. A couple of years after I had my daughter, now 20!, I was rushed to hospital after weeks of abdomen pain that left me curled up on any flat area I could find. I had incredible pain & discharge, which turned out to be the lining of my womb but no blood was present?

I had my first laparoscopy soon after ,the surgeon's found my right ovary stuck to my pelvic which they managed to release. I also had a cyst on that ovary that over time re-absorbed. Endometriosis was found in various parts of my abdomen but it was decided to leave it alone?

I was told the best way to control the endometriosis was the Mirena Coil. This was inserted & forgotten about for 7yrs. In that time I was pain free but suffered depression daily.

My second coil was fitted at my local doctor's and to say the pain was excruciating on insertion is an understatement.

During my time with this second coil I again suffered depression but I have always had a dull pain in my abdomen. So 4 years ago I had a 2 laparoscopy which discovered endometrial tissue on my urethra, bladder, bowel, lungs ... surgeon said it was riff with endometriosis! I turned down a Hysterectomy as I was scared.

Recently my pain has increased week by week over a year or so. I've got pain under my ribs, all down my abdomen to my bladder. I suffer depression, tired all the time , want to pee all night, have pain in my hips the list goes on. I couldn't stand it any more. I went to my doctor who immediately referred me to Lancaster Hospital...I've since heard scary stories from ladies who have had bowel nicked so wondering what to do?

I've had the mirena coil removed and now on my 4 month of Prostap injections. I've nearly got over the dramatic mood swings & hot sweats but have joint pain and after yesterday's injection I had abdomen pain?

Now waiting for a laparoscopy with possible hysterectomy in the future. This is all taking place at Lancaster Hospital & not sure if the best place to be.

I'm self employed and long-term single but have a fantastic family& friends for support.

I'm scared ,worried about all the surgery possibilities, any advice would be fantastic!

Thanks in advance...

Em x

1 Reply

  • Hi Em

    I am so sorry you have been suffering for so long. I don't know if you aware but we now have specialist endo centres where your sort of case should be dealt with, according to the NHS contract for treatment of severe endo. The hospital mentioned does not appear to be such a centre and so both your GP and the hospital are in breach of contract for even suggesting that you should be dealt with in a general hospital. The surgeon who operates on you must have done at least two years specialist excision training in addition to the training of a general gynaecologist, but in practice will need many more years experience of such surgery for a case like yours.

    This is the NHS contract that applies in England:


    And this is the training a surgeon must have had in accordance with the General Medical Council:


    A hysterectomy is not a cure for existing endometriosis. It is absolutely vital that this is fully excised whenever possible as endo, especially long standing endo such as yours, can produce its own oestrogen to feed itself from cholesterol in the blood (cholesterol is the base molecule for oestradiol). And only the very best of surgeons should be doing it.

    Can you click on my name and have a look at my post on finding a specialist. The one on rectovaginal endo might be useful too, to see what you identify with.


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