oophorectomy: I'm booked in for my... - Endometriosis UK

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oophorectomy

TillyMint83 profile image
11 Replies

I'm booked in for my oophorectomy on Thursday and I'm starting to get a bit nervous.

The op itself doesnt bother me in the slightest, it's more the life changing impact of early menopause that I'm concerned about. I have been pushing for something to be done about my endo since I was 20 (now 36). I've had multiple laps and tried everything else. I've been wanting this for such a long time, but I can't seem to sleep with worry about if I am making the right decision or not. I had the 6 months of prostap and HRT as a trial which went great, just some hot flushes and a bit of disturbed sleep. I don't know what to do!

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TillyMint83
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11 Replies

Are you being seen at a bsge centre, and have you had excision of your endo? I had an oophorectomy in March last year and wouldn't recommend it until you've had absolutely everything else (plus a second, if not a third opinion).

TillyMint83 profile image
TillyMint83 in reply to

No i'm being seen by an Endo specialist in Arrowe Park hospital. I've had multiple laps with excision over the years.

in reply toTillyMint83

I would recommend getting a second opinion from a bsge accredited specialist if you can, especially if you've got doubts.

TillyMint83 profile image
TillyMint83 in reply to

Can you tell me why you wouldn't recommend it?

in reply toTillyMint83

I didn't say I wouldn't recommend it, I said absolutely every other option should be explored first because an oophorectomy damages your health and so should only be tried when absolutely everything else has failed. I had a hysterectomy + BSO plus excision from bowel/bladder/ureter etc at the big bsge centre in London. I had adenomyosis, so my uterus had to go, and my endo lesions were very large and my pain and bleeding were out of control. All the drug treatments failed, including prostap, and I had pain and bleeding on everything. I had the oophorectomy to minimise the likelihood of the disease returning and therefore try to make sure I don't need further surgery on my bowel. I didn't really have much choice as my pain was so bad that I was regularly going to A&E for help. But surgical menopause is really tough - it affects your mental and physical health - and HRT helps but it is not the same as your own hormones. I am 10 months post op now and I feel basically low level rubbish all the time :/ My hair has thinned, I've put on a lot of weight which will not shift even with months of weightwatchers and increased exercise, I've got constant joint pain and I have all the other menopausal symptoms of hot flushes and insomnia and zero sex drive. It's better than the state I was in pre op, but it's not fun. If there had been any other option, or if I had felt I could manage the pain, I would not have had it done. I am not trying to frighten you or put you off if you are at the point where this is the only option left, but I can't stress enough that you have to be absolutely certain and completely out of other options.

TillyMint83 profile image
TillyMint83 in reply to

Actually he is a PSGE Accredited surgeon, I hadn't realized. I was 100% and settled in my mind with the choice. I've had a long time to consider it all but today the panic has set in and I'm having pre op jitters and just don't know what to do.

TillyMint83 profile image
TillyMint83

Well it’s out of my hands now. Hospital have cancelled it :(

girli1111 profile image
girli1111 in reply toTillyMint83

Oh Tilly, how frustrating! I’m older than you at 48 and in the last two years have had both my ovaries removed, the first time one was engulfed by a dermoid cyst, the second time a large endometrioma was attached in such a way that he ovary needed to be removed. I had been on prostap prior to surgery, so already in a drug induced menopausal state. I had great career from the endo team at the John Radcliffe in oxford, and because I’d previously had a deep vein thrombosis the surgeon referred me on to their menopause clinic for guidance on hrt. I must say I’m incredibly impressed by the service I’ve received, and my mood is stable in hrt. That said, my other condition of rheumatoid arthritis has flared up massively since my second ovary was removed, I can’t be certain that the two are linked, but I suspect so. It really is a case of weighing up your priorities, and your own experience of your pain at the moment. I hope you are rescheduled without too much delay, it’s sole destroying when that happens.... I once had it happen after I was all gowned up and ready to go..... was horrible, so you have my sympathy!

TillyMint83 profile image
TillyMint83 in reply togirli1111

Thank you! I am heartbroken, it’s taken so much and so long to get this far, I feel utterly destroyed. On top of the fact I’m self employed in quite a manual job, so I had to cancel out the rest of January to be able to do this, which is leaving me in an awful financial position to have to do that twice in a year. The emotional turmoil is unbearable xxx

girli1111 profile image
girli1111 in reply toTillyMint83

I know the current crisis is affecting so many, but it may be worth you letting the team know that your livelihood is being jeapordised by the delay, that must be so worrying for you.

TillyMint83 profile image
TillyMint83 in reply togirli1111

I have unfortunately they say they can’t do anything about it. That it’s come from the government and they simply aren’t allowed to do any elective surgeries xx

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