Endometriosis UK
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Oophorectomy experiences?

Hello,

I’m booked in for an oophorectomy to remove both ovaries laparoscopically and I just wondered if anyone else had had this done and what your experiences were like. I’m most interested in how long the recovery was and how you got on with starting hrt. I’ve read that surgical menopause is quite a shock to the system but how long does it take for the hrt to work if you start it straight after the operation?

Sylvia xxx

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I had this done in march last year together with a hysterectomy and extensive excision - I had endo on my bowel, bladder and ureter. I think it depends partly on how old you are (I was 39) but surgical menopause is really hard. I had to wait 13 weeks post op before starting on tibolone and it took about 4 months for it to reduce the hot flushes to a manageable level. I am still having them, but I have 3-4 a day now instead of 15-20 and they are not as intense. HRT does not feel like your own hormones and things will not be the same as they are now and that takes a lot of getting used to - I have been taking HRT now for 7 months and it's still a work in progress. My hair has thinned a lot, I'm having problems with a 20lb weight gain that will not shift no matter what I do, and I've got constant joint and muscle pain. My endo was so severe that this is an improvement on how I was before but it's not great. I've been referred on to the menopause clinic at the hospital to get help with finding a HRT that suits me better but sadly it's a very long wait and I don't have an appointment until Feb.

All I can say is that this should be an absolute last resort when everything else has been tried and has failed - it shouldn't be an alternative to other treatments and they need to excise all the endometriosis tissue at the same time or you may continue to have pain.

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Thank you for your reply, I’m sorry it was so tough for you! I’m 29 and it is definitely because it’s a last resort. If you don’t mind me asking, why did you have to wait 13 weeks before starting tibolone?

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It is to reduce the chances of the endo returning - I also had 3 months of prostap without HRT addback prior to surgery to drop my oestrogen so I had low levels for 6 months in total. Are you being seen at a bsge centre?

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Ah I see. No I’m not but only because the hospital didn’t want to do the paperwork, my consultant writes most of the research articles done on endometriosis so I trust him completely! xxx

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Hello Sylvia,

On the morning of my hysterectomy I changed my mind and opted to keep my ovaries. I have ME and was worried about recovery (I need to work) if I had to face menopausal symptoms as well.

I wish I'd taken the risk now as I'm still having cyclical pain, which interferes with my ability to work.

Ah well, we do what we think's best.

A colleague recently had an oophorectomy to cure her PCOS and says it's the best thing she ever did. She's having mild menopausal symptoms but says they're nothing compared to the pain she experienced before.

It's such a personal choice. I hope you have a speedy recovery!!

Best wishes xx

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Thank you! And thanks for the reply, hopefully it will work out for the best xxx

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Hi Sylvia, I'm in the exact same boat as you. I am booked in for my Op on Thursday. Have been 100% set that it was the right decision until today and now I am also looking for the answers just as you are. The unknown is so tough isn't it? Especially knowing how different an experience it seems to be for everyone. Jen x

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Yep it’s the unknown that’s driving me mad! Good luck with yours, really hope it works out well for you xxx

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Well my op for Thursday has just been cancelled due to a shortage to of beds. :-(

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Oh no! I’m so sorry! I get so anxious in the run up to an op so I would be so upset! Have they rescheduled it? Mines on 5th Feb xxx

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No they’ve said they don’t have any available dates for him at the moment. He is booked up for 6 months xx

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Oh god! Poor you! You have my deepest sympathy! I work in a school so I’m also seeing the effects of budget cuts there, it’s so frustrating to be on the receiving end of it though xxx

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It’s awful isn’t it. I know it’s not the hospitals fault but it just doesn’t help how i’m feeling. I’m self employed too, so have already lost the remainder of January’s orders, as I cancelled everything upon receipt of the date. I can’t afford to do that twice in a year.

I hope all goes well for you Hun xxx

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I know what you mean, it’s awful and has such a big impact on the patient, mentally but also in your case, financially! Let me know when you get a date xxx

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