Endo or oncology surgeon?

[My_adventures]

Hey everyone

I've been on the list for a hysterectomy, ovaries all out for nearly a year. I have two large cysts and one has ruptured. It's still 10 cm on one side and has formed kissing ovaries.

I was on the BSGE centre waiting list for surgery, this is two hours away. When the cyst ruptured I was in the local hospital, when diagnosing they did my bloods, CA125 -1720, CA19 - 872.

I've gone through the central northern MDT for oncology and they have said they don't think it's cancer but they can't rule it out so have put me on the cancer pathway. This means I will be removed from the BSGE endo surgery waiting list.

Ive been given the option of having my surgery locally, but he may only be able to test for cancer and not do anything else. He is not BSGE registered but in his bio (yes I researched!) He does do ablation of endo. So if it wasn't attached to my bowel he could remove everything.

Or be in the main hospital 2 hours away with an oncology gynae (if she will take me on). Then if the cysts etc are attached to the bowel I am in the BSGE centre and they would hopefully deal with it all there. He doesn't know how experienced she is with endo or bowel or anything but locally there is no bowel surgery at all.

He examined internally and said it doesn't feel like the bowel is attached to the cysts - but I was referred to the BSGE because it was very close.

I have had an MRI last may but it seems to only say that the cysts are close - this was also performed at a different hospital two hours away as I am claustrophobic!

This doesn't feel like a decision I am able to make, has anyone any experience of being in a hospital and them being able to operate deal with more issues because you were in the right place?

I feel like I'm losing my mind with all of this.

[girli1111]

Hello, I’m sorry to read you’re having such a painful and frightening time. In your shoes I would opt for the gynae oncology at the larger hospital. I’ve been through the pain of ovarian torsion and ruptured cysts and those frightening CA 125 numbers triggering urgent cancer pathway referral. It was a very terrifying time, but in my case turned out to be ‘just’ my endometriosis and the ruptured cysts. By the time this happened I had already had one ovary removed a few years earlier when it had been engulfed by a teratoma tumour (benign). Second time around the surgeon couldn’t save the second ovary, but performed hours of excision surgery (not ablation which I’d experienced previously) and I have been endo symptom free ever since (4 years ago now). I still have my uterus because it was very stuck to my bowel and a bowel surgeon wasn’t available, but this far that’s not been a problem. Wishing you all the very best x

[My_adventures in reply to girli1111]

Oh wow thank you for replying. That's so good to hear that your uterus is still attached and no issues.

Feels like a mind field doesn't it. There's so much to think about and I'd love to have an expert on speed dial!

[girli1111 in reply to My_adventures]

How are you doing?

[My_adventures in reply to girli1111]

Hey, I'm ok. It's all still a mind field isn't it.

I'm hoping my surgery will be before April, although that is with the endo surgeon. It all got a bit political really in that the larger hospital two hours away is a different trust and was saying they've put you on this pathway because they are trying to make your surgery sooner. Feel like I'm spinning round on a roundabout at the moment!

I'm having a sigmoidoscopy on Tuesday to see how deep the endo is in the bowel muscles.

Thank you so much for checking in, it really means alot.

Hope you are ok and having a good weekend xx

[girli1111 in reply to My_adventures]

Glad you’re ok, hope you get your surgery date soon, as the worrying makes everything much worse x

[Jenova]

Perhaps my answer is no longer relevant. I only showed up here today.

I have had 2 surgeries and psychologically it is always very difficult, I can understand you... I don't know if it is possible for you to choose a surgeon yourself, in my case I was able to choose. Just remember that surgeons have performed similar operations repeatedly and they have experience, you are not the first, you are in the hospital and they will do everything possible. If the surgery is laporoscopic, then you will recover very quickly. The night before surgery, ask for a sedative injection, which will help not get hysterical when you are taken to the operating room. I sincerely wish you good luck, I hope the operation will be successful and it will really help you.