Stage 4 endometriosis and the delay in operation

[Sagada]

Hi all!

There is one thing I can't stop thinking about. I know it is rather a question for a specialist, but I hope maybe someone was in a similar situation and/or knows the answer.

In October 2017 I went back to Poland to visit my family. I saw my old genealogist there and I explained to her all the symptoms I was experiencing then for more than a year (my GP made only blood tests which didn't show anything and tried to explain that a painful intercourse was caused by emotional distress, even though that was not the situation - without even referring me to a genealogist and I couldn't afford a private appointment). Almost immediately she found out a large cyst on my left ovary and confirmed to her it was all caused by endometriosis. I could continue my treatment only in UK where I live and work and I fully trusted that once we know what's the problem, I would receive a proper treatment.

It took another 2 months to basically confirm the very same information my Polish genea gave me. Right before Christmas I saw finally a British genealogist who confirmed it didn't look well and I should have laparoscopy done ASAP. Long story short - I had to wait until July for the operation (appointments were cancelled 4 or 5 times, due to e.g. 'human mistake', or the fact the surgeon took last-minute holidays, etc.). At the hospital (they removed the cyst as well as severe endo on several different organs) I was so 'high' on morphine that I forgot to ask the doctor what stage was it. I had the chance 3 weeks later, when a specialized nurse called me.

Since that call I can't stop thinking - did the fact the operation was delayed for more than half a year had any impact, that I have the most severe stage of endo? Would it be better if I received the treatment earlier? It is not an urge to find someone to blame, but I just want to fully understand what's the situation... I'm aware there is a high risk it may all come back sooner than later. And if it does, I just want to be sure that waiting for half a year does not have any real impact - or if it does, that I should maybe take a stupid loan and do it privately ASAP.

[Sagada]

Hi! Thank you so much for the reply! You're right there is so many factors to consider... maybe I'm just worrying too much and overthinking...

The pain got worse when I was waiting for the operation - from being in pain for a day or two during period, up to complete agony for 2 weeks April-June (it could have been the cyst, but funny enough, the cyst got slightly smaller at the end, thanks to Chinese medicine I started in March).

I'm just terrified it will all come back and again I'll go through months of waiting in pain. I know this way of thinking doesn't help, but it's beyond my control...

[HellyLlewelly in reply to Sagada]

As the other members said there is no real way of knowing, at age 20ish into 30s I had almost 20yrs of pain during intercourse its a sign, plus my cervix was getting "hit off" shuddering pain down my legs and causing to change positions. I didn't get my Endo removed until 2012 then in 2018 so 6 years between removals but after a baby in 2014 my endo continued to speed post c section and mid 2017 to January 2018 it became unmanageable with periods habing me in bed and longer more painful symptoms with shooting pains and painful urination and bowel movements especially at Menses.

I believe the worst of it is hitting you now but it's been just sustained growth over years. I had it on my bowel my uterus and 1 ovary was taken over by it. Have you had children? Have you considered any hormone treatment post op to keep it at bay? The pill or Zoladex injections?

I had a Hysterectomy this year so had everything including my painful cervix taken away, ovaries too.

I'm still healing but can say sex is the least painful ever in my whole life now. Im on hrt patches with progesterone to calm the endometriosis regrowth. Good luck in your recovery. Your time scale sounds good to me I waited 9 months and had 22 to go so had to take a loan out for hysterectomy. I live in Ireland in the North so it's NHS, our system here is flooded with cancer taking all routine surgeries at the moment.

Best Wishes.

Helly.

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