When is surgery necessary?

[Jenn2022]

For the last few years I've had very heavy periods - annoying, but manageable. For the last 12 months I've had really bad bloating in my stomach on and off - annoying, but manageable. For most of last year I had an on/off dull ache near my left ovary - annoying but manageable. Since November the dull ache has worsened significantly. Sometimes it's fine, other times the pain spreads to my hip and I'm crying for hours.

An MRI showed stage 4 endo and a 6cm chocolate cyst on my left ovary. Both drs I've seen have said I need a total hysterectomy.

And they may well be right but I can't help thinking: 4 months ago I was fine. The problem is the cyst. I don't have painful periods. I don't have bowel or bladder problems. I don't need to worry about fertility issues. If the problem is the cyst, is a hysterectomy really necessary? Isn't it a bit of an over reaction if I'm not having any other symptoms?

If I have the coil fitted will that stop the endo getting any worse? Or will it get worse no matter what I do?

I know you guys can't give medical advice but I'm just really hoping to get some other view points and opinions to consider.

[Jane884]

Hi Jenn. A hysterectomy straight off the bat does seem extreme to me too. Can I ask your age please? Have you been told you have any problems with your uterus itself, like Adenomyosis?

[Jenn2022 in reply to Jane884]

Hi, yes they did say I had adenomyosis. I'm 45, so no more kids for me, but on the other hand I'm probably not far off menopause either.

[E-ZEE]

Hi,Yes I agree with Jane884 ,hystertomy usually suggest when Adenomyosis diagnoised.Coil can minimize you symptoms but can't help your endo to stop growing.First thing is to consider are you under the treatment of Endometriosis specialist consultants or gernal gyno?2nd question how do you know it is just because of cyst and rest is ok?Endo effects each and every part of your body.In your case I trust ,second opinion would be great before taking any decision.

I wish you pain free and healthy life ahead.

[Jenn2022 in reply to E-ZEE]

I've seen 2 drs - both endo specialists. All the pain I experience is in my left ovary/hip area. So I'm assuming it's all cyst related - but maybe I'm wrong But when I read the symptoms of women with stage 4 endo, I don't have any of those symptoms apart from the heavy bleeding.

I just thought a hysterectomy was a final resort - not the first thing to try?

[E-ZEE in reply to Jenn2022]

It can be frozen plevic on your left side,not just becoz of cyst, usually dctrs offer some lepron injections or coil options as well but if both of your dctrs suggested surgery might be there is a only option according to your MRI reports.Lets talk to them ,they know better why they just giving you this only option. Sometime you have stage 4 endo with mild symptoms and sometimes stage 1 with severe symptoms. Good luck x

[Jenn2022 in reply to E-ZEE]

Thank you

[Avourneen]

The hysterectomy is probably to sort out the adenomysiois. I am in a similar poistion and similar age. When covid cases drop a bit I will get the hysterectomy because it lessens the chances of getting uterine cancer which can increase if the endo is left.The pain might be that the endo is in your bowel or on your ligaments. They won't be able to see that in detail unless you have a laparoscopy. The endo can continue to grow even after menopause especially if you still have your ovaries. If you are unsure see a different specialist but I would seriously consider it. Especially if you have not had any operations before. Good luck.

[Jenn2022 in reply to Avourneen]

Thank you

[Minnie153]

Hey Jane,

So sorry to hear what you’re going through; I’ve been in your position with pain from a endometrioma on my left ovary. I’d say hysterectomy is a bit of an over reaction if I compare from my own experience. I struggled to get a diagnosis of the cyst even though I had longstanding endo. Eventually I had a left sided oophorectomy and then almost 10 years later excision of significant endo by an endo specialist, at the same surgery he insterted mirena coil which helped with pain and progression of the illness for over 7-8 years. Mirena changed 2 yearly to get maximum benefit from the hormone content. Unless your bleeding can’t be controlled with mirena I’d try for that first. I’ve just had hysterectomy due to uncontrollable bleeding but I had adenomyosis too.

Good luck xx

[Jenn2022 in reply to Minnie153]

Thank you. I'm meeting the consultant again on Wednesday to talk it all through and make a decision. Hopefully that will bring some clarity.