Confused.. in no pain but have endo

[Emily525]

I’m 26 and have been diagnosed with an endometrinoma measuring 4.6cm on my left ovary via a confirmed an ultrasound and MRI scan. I was originally referred urgently due to my high ca125 levels and occasional left leg pain. Thankfully it’s not cancerous, however I’m so confused what to do now..I’m in no day to day pain from the endo itself apart from occasional leg pain- periods are normal, however do have some GI issues which I’m currently working on.

The consultant I saw was extremely dismissive and threatened to discharge me if I decided to not undergo surgery. He didn’t even explain the diagnosis and went ahead to list surgery risks within 2 mins into the consult. I felt extremely intimidated and overwhelmed that I just went completely blank and walked out feeling shattered. I really do not want to undergo surgery as the risks outweigh the benefits for me. Also do not want to be on birth control meds for the rest of my life with it’s 160+ side effects. But at the same time I don’t want this to progress and get worse. Please I’m in dire need of advice of what approach I should take.

I feel like my life is over before it’s even started. I’m not married yet, however always dreamed of having my own family. Been depressed and anxiety has heightened ever since this diagnosis.

Do you have family support here?. Can you talk to your GP about this issue and your anxiety?

What risks outweigh the benefits to you in terms of surgery?. So called chocolate cysts can further increase in size and could cause you a lot more problems in future if it is not removed from the ovary. I remember almost falling off my chair in shock when laparoscopic type surgery was suggested by a kind consultant surgeon, being addressed by someone with little to no bedside manner would be awful.

I would also urge you to contact Endometriosis UK and seek their advices. Do not let your fear and anxiety here potentially drive your decision making into making poor decisions for you.

CA125 is also an inflammation marker so levels can be raised with endometriosis .

Your leg pain could well be due to endometriosis as could the GI issues.

You say you're not in pain. What was the reason for the tests and scans?

High ca125 levels and constant leg pain

High ca125 levels and constant leg pain

Welllll... accept to go through the surgery..chances are you'll wait super long for it.. I'm waiting since september and no appointment given yet... and u can always cancel it if with time you change your mind. Noone will tie you and do it ;) Meanwhile do other tests or whatever with gp? Theyll be more helpful once they know youre under gyne and waiting for this maybe?

Same u know if it gets worse..at least already on the wiaitng list.. waiting lists are so long at the moment....

OP you poor thing, that sounds awful.

I'm much older than you, about to have a gynae surgery and I was abs devastated after seeing an absolutely lovely gynae in a private appointment. I can't imagine how you must feel.

Do you have a nice GP? I would go and have a cry on them. They may be able to refer for counselling and they will at least be able to go through the pros and cons for you. Push the receptionist - you need an urgent double appointment, if necessary tell them you are having a crisis.

Any GP worth their salt would counsel a woman your age through this.

I hope you get some sleep lovely.

Unfortunately no. They keep pushing BC and telling me ‘your young’ brushing it off and not taking me seriously. I’m looking into changing my GP :( Thank you for your kind words.

Thank you for your suggestion. That is true waiting lists are unbelievably long. Yes I’m focusing on my gut issues which I’ve neglected for years which I think is the main driving factor for my endo..

My GI issues were at least partly caused by endo deposits on my bowels.

So sorry yes I’ve heard some stories on this too. I’m scared there may also be some endo elsewhere :(

I would have the surgery if I were you. I was in a similar position - I went to the doctor due to my periods suddenly becoming heavy after being normal all my life. I didn’t have anything like the usual pain that people describe with endo.
After further investigation it turned out I had stage 4 endo, with large multiple chocolate cysts on both ovaries, endo on bowel, etc. I feel much better six months on - although I didn’t have pain as such, I realised that I did have some symptoms that I’d never thought could be endo-related - I thought I had mild IBS (it was endo on the bowel), weak bladder as I needed the loo all the time (it was the cysts pushing on my bladder) and other things.
It’s a progressive disease so you’re better off having the surgery while you can.