Stage 4 Severe Endometriosis Diagnosed in Surgery

Last week I was probably the most excited woman ever to spring onto a surgery table. After 18 months of getting up the courage to actually do something about heavy periods and general pain and discomfort down there I was excited that I was finally having a hysterectomy. The previous two weeks of bleeding would be my last period ever! Leading up to my surgery hubby asked several times if I was nervous. To which I would delightfully answer, “nope, I’m excited!” Whilst waiting for my name to be called at the hospital I messaged my sisters on our secret Facebook page to say “Getting my hysterectomy today, exciting!!” When I positioned myself on the surgery table I was asked how I was feeling, again with a smile from ear to ear I said “excited”! So when I woke in the recovery room with discomfort in my lower area and a feeling that I had just had surgery, to be told that the hysterectomy had to be abandoned, I was very confused. Of all the things I had been told none of the options included not having my uterus removed. Yes, they would remove my uterus and cervix and if they can keep my ovaries they will. But to be told that I had stage 4 (severe) endometriosis which revealed itself during the operation and had attached my uterus to my bowel and both ovaries (which were drained during the operation) was a complete surprise. How could they have missed it? Isn’t that why they do all the tests, specialist consultancy, ultrasounds, including internal vaginal probe ultrasound. So they can see what’s going on? Why, when the ultrasound was done, could they see a 3cm cyst on my left ovary and not a larger cyst on my right ovary. How could they not have seen that I had stage 4 endometriosis? And so I asked these questions to which I was told that I had downplayed my pain and the ultrasound doesn’t see everything. The on call bowel surgeon had been brought in but was not able to do the dissection without high risk of damaging the bowel so they abandoned the hysterectomy. My confusion turned to disappointment which turned into a very upsetting couple of days – I would have to endure more pain and go back on the waiting list. When I look back now I realise that somewhere along the way all the pain and discomfort I had felt over the years had become normalised by me. I had had ongoing issues with urinary tract infections to the point where I gave up going to the doctors, used voltaren to remove the pain and often it would go away. Although it would come back often within a couple of weeks, meek but still very present. I now believe this was more likely cystitis, as often I would not have partaken in sex; and alcohol which is dehydrating was bringing it on. Another symptom which I had taken as being part of having a period is the often excruciating pain I would feel in my uterus when having a bowel movement. I had mentioned pain when pooping to the gynaecologist and he said that there could be endometriosis so between this comment and the cyst/endometrioma on my left ovary why wasn’t this looked into further by the gyno? Does he not have a duty of care to know the extent of a patient’s condition. Were the ultrasound results reviewed properly? And why, if I had fibroids, heavy periods, pain when pooping, a cyst on my ovary, a septate uterus (which now looks to me to have been caused by the attachment of the bowel) was I not be given the option of a hysterectomy and actually have to ask if I could have one. It has only been four days since my surgery so my disappointment is very real. I feel that after the abandonment surgery that the gynaecologist should have taken the time to discuss my surgery and options going forward yet he had his “assistant” talk to me. He was very impersonal and made me feel like a number. I feel let down by the him and I feel like doctors who hide behind their theatre clothes and don’t take the time to communicate with patients to fully understand their situation really need to work on their interpersonal skills to be able to do their job properly. I am back on the waiting list and really don’t know what to expect as far as the next surgery except that there will be a bowel surgeon and gyno working together. Is it laparoscopic or full cut? Is it going to be a month or 6 months wait? Will it be a 2,4 or 6 week recovery? All I know is that I am at the mercy of the NZ hospital system. I hope that maybe some of our gynaecologists are reading this and will take these concerns into consideration the next time they deal with a patient and remember I’m not a just an NHI number.

4 Comments on “Stage 4 Severe Endometriosis Diagnosed in Surgery”

    1. It’s pretty crap being on a list. I’ve been waiting 12 months now and wrote an updated story on here yesterday. Still waiting for my surgery. The hospital service to coordinate a bowel and gyno surgeon together is so disappointing. I can feel my ovaries again! Which I guess means the endometrioma have regrown. Hard not to feel sorry for yourself….

  1. I completely understand! I too have stage 4 endo (for 6yrs now) and after 2 surgeries I have been told that a hysterectomy is not in my future as it won’t do anything. Even though all my organs , bladder, stomach, ovaries & colon were all stuck together at one point & my nerves & muscles are just so damaged that I get to live with all this for the rest of my life. This disease just eats away at everything! Keep fighting & demanding answers! You are not alone and are NOT just a number! ❤️ From Canada

    1. Oh gosh, that’s terrible…. I am waiting and want my hysterectomy to remove everything to stop feeling my ovaries and other bits. Its worth a try!

Leave a Reply

Your email address will not be published. Required fields are marked *