Diagnosed with Severe Endometriosis and 49 and having both ovaries out

[MichelleFelton74]

For the last month I have been having tests after going to the doctors with pain in my right side above my hip. I thought it was kidney area and expected kidney stones. 4 weeks later after several blood tests, raised CA125 blood results,ultra sound showing 9cm mass, MRI, drs telling me possible ovarian cancer.. I got my results thankfully not cancer. My consultant said I had severe endometriosis and was surprised I did not know about this. On the ultrasound a large mass was found on my right ovary, also a smaller one on my left ovary, I’m booked in for my ovaries to be removed in Jan, biopsies, washing (whatever that is) I got a letter yesterday to say I probably have Borderline Endometrium! What does this mean?

Anyway I’m thankful I don’t have C but also pretty scared to go in to full on menopause I mean does it happen within days?

I’m already on HRT have been for a year so hoping that will help. If anyone has any advice or things I should do to prepare that would be good. How long is recovery?

Thank you all x

[nanomyous]

Hi and welcome! I'm glad your tests have been clear, I'm sorry I don't know what borderline endometrium is but hope it is not serious.

I had my ovaries removed three months ago after finding myself in a similar situation three years ago at 50 with a large endometrioma on the right and smaller ones on the left and a raised CA125.

The menopause should be gradual particularly if you already have your HRT sorted out. For me, even without HRT, the effects only started at about six weeks with just occasional minor hot flushes which have become more intense and frequent, and now insomnia - it sounds bad but it's more frustrating than feeling ill and hopefully you will avoid all this with the HRT.

I think recovery time really varies, maybe depending on how much work you have done, fitness, maybe even age. Some have mentioned two or three weeks on here, I only felt fully mobile with energy at about six weeks.

You'll find loads of advice and support here, for really detailed information another good site is the Endo Revisited Facebook site which is run by Lindle another poster here. My own advice would be, in addition to removing the cysts/ovaries, to have as much of any endometriosis elsewhere removed as is possible/you are happy to have removed. I'm much more comfortable now the endometriomas are gone but it was actually the endometriosis on my uterosacral ligaments and ureters which was causing more problems.

Good luck with your operation in January and a swift recovery!

[girli1111]

I also don’t know what borderline endometrium means. I endometrium is the lining of the uterus and the thickness of it is often measured in scans, so maybe the thickness of it is on the borderline perhaps? Ive been told several times that I have a thickened endometrium.

I have also had both ovaries removed, once in 2015 and the other in 2017 both times because of complications of large cysts. I was in late 40s and when second ovary was removed I went into hit flushes within two days (I was in hospital still).

Like yourself, I had few endometriosis symptoms except for several emergency hospital admissions when I had ovarian torsion (cysts causing ovaries to twist and cutting of blood supply so medical emergency). After surgery I was told I have ‘grade 4 deep infiltrating endometriosis’. The surgeon explained that severity of symptoms doesn’t necessarily correlate with severity of symptoms. So my disease was severe, but I guess I’d been lucky with symptoms mainly being the emergency ones. I had extensive excision surgery done at the time of the second ovary removal, was in surgery for 6 hours apparently… so must have been quite a mess in there….

The REALLY good news is that I havn’t looked back since! The gynae surgeon referred me to menopause clinic and I’ve been on hrt since (both oestrogen and progesterone) as I still have my uterus.

Take it easy after your surgery, I work in an infant school so took the full recovery time away from the classroom, and I needed it. Just because you’ve healed on the outside, doesn’t mean you’re all ok inside!

Best wishes