Due to have hysterectomy and oophorectomy at 36 next week and panicking

[hysterectomywoes]

Hi everyone

I am due to have a hysterectomy and oophorectomy next week due to pmdd and I am now having major worries about the aftermath and surgical menopause. I am only 36 and would need to be on HRT for at least 15 years afterwards. I do suffer with pmdd so have severe debilitating physical and mental symptoms for around two weeks of the month but the complete unknown of surgical menopause is making me think twice and have doubts about the procedure.

I've just been on holiday abroad on what should have been my bad week and I was fine, irritable at times but actually ok. This has made me wonder if I could make life changes to manage my symptoms, eg I hate my job/ career, would changing this help me keep my ovaries?

It's so difficult because if you have pmdd the dysphoria element to it does tend to trick you into thinking you're not unwell in your good weeks ? And you start thinking you don't need treatment/ surgery etc. But then you ovulate and bang, you're back feeling hideous and begging for surgery.

Not sure what I'm looking for here, perhaps if you've experience of surgical menopause and can reassure me it isn't THAT bad I don't know.

My friends and family are not helping me because I feel like they just want me to go and get it all whipped out and don't really understand the full implications of having ovaries removed at such a young age, they aren't the ones who will have to live with menopause and balancing hrt will they?

The op is on the nhs so I am not sure I could delay or move it.

My consultant told me this operation would change my life and I believe him. You can not go on as you are, putting estrogen back in to your body is no different to putting thyroxin in or insulin. The good news for you is that once your body is no longer producing hormones from your ovaries, the doctors will be able to get your levels spot on. Louise Newsomes MIL (who was married to a GP) has been on HRT for over 40 years and she's 80+, listen to this....

podcasts.apple.com/gb/podcast/the-dr-louise-newson-podcast/id1459614845?i=1000463985613

Will have a listen - thank you.

Can you request a discussion with the specialist who is in charge of your care? It's a big decision and while time is tight I am sure they'd rather be confident that you're 100% clear that this is the right thing for you. Are there alternatives short of the operation that you could try? On the other hand I think modern HRT is amazing stuff and there are lots of ways you can adapt it to work for you, plus the risk/benefits of taking it under 50 are very clear. (I still think the benefits outweigh the risks of taking it after that point for most women but prior to that age I think it's even more clearcut). Good luck whatever you decide.

Thank you - yes there are other options and unfortunately I have exhausted all of them. I could stay in chemical menopause long term but I'm severely intolerant to the progesterone element of the add back hrt hence the step to surgical management (no uterus no need for progesterone)

I have my pre op on Monday so will discuss at length.

To be honest, if you have recently had a 'good' week with fewer symptoms, I'd delay the operation.

I would suggest, if you have not already done so, that you get more than one opinion and ask at least one more gynaecologist for advice, even if it means paying £250 for that, to see someone really expert, anywhere in the UK.

One thing I have learned after years of seeing drs, is that they all have their own opinions. Rarely do they all sing from the same hymn book.

At 36 you will need a lot of estrogen as 'normal' hrt doesn't bring levels anywhere near what they are in young women. You will also need testosterone as the ovaries produce some of that. You also need to consider that (rarely) this operation can cause issues with the bowel and bladder- it's major surgery and they avoid it nowadays as much as possible when other options are available.

@Rina66 I have listened to the podcast way back when, and I don't think it's comparable to the OP unless I've missed something. Dr Newson's mother didn't have PMDD or have a full hysterectomy.

You always make very valid points @JinglingHellsBells and you are a wealth of information, we are lucky to have you on here.
I was just giving my opinion as I do have PMDD, which is totally debilitating and as the OP said, in the good weeks, makes you doubt your diagnosis. Your friends and family always remember the full horror of what you’re going through, hence why they encourage the operation. The reason I recommended the podcast was to highlight that the OP could take HRT safely for a very long time as that seemed to be a concern of hers too.

Hormones fluctuate, a good week where a bad week should be, may not be life style related (although I truly believe lifestyle helps, it’s definitely more chemical than that) it may just be a longer cycle or no ovulation so the progesterone hasn’t started building in your system yet.

Thanks for your advice, I've seen you on the meno board alot with fab advice for people. During my ten year journey with pmdd I have sought treatment privately from two very well respected menopause/pmdd gynaes and tried many MANY treatments. And that's how I've ended up here, waiting for my surgery. It's a hard one, because the outcome is somewhat unknown but I've had 'good' months before only to be followed with horrific ones.

I had this op, although I was 50, so a bit different for a younger one.

For me it has been a life changer, in thr best way! I have never looked back.

I did not take any HRT but for the surgical meno I took soy isoflavanes and sage for night swears. I took various alternative remedies for 6 months post op and 7 years on, no issues.

I don't know about a 36 year old though, it could be different. Hopefully some younger mners who have been through this can advise you.

The op itself was OK, I took 12 weeks off work due to the type of job I did, but pretty much felt back to normal after 6 weeks.

Thanks - I do really resonate with what you say here, and I flip from thinking it's what I've been fighting for for so long since I was diagnosed to omg this is so huge but then I think what's the alternative? Keep going round on this merry go round? Aaagh it's hard!

Thank you, glad you feel so well since your op!

I'm sorry it's such a hard choice @hysterectomywoes Presumably (I'm clutching at straws here) you have tried all hormonal treatments, including the Pill, mini pill, etc? The late Prof John Studd used to treat women like you and this is from his website www.studd.co.uk/reproductivedepression.php

I'm wondering if you might have seen one of his colleagues or those working as he did? (I don't agree with everything he did by the way!)

I had this operation at the end of April. I'm 40.
Had it for totally different reasons so can't comment on that, however I can comment on operation. Are you having keyhole? I found that the shoulder pain from the gas after was worse than any pain in my tummy. I took 6 weeks off work and needed it and was given hrt immediately on leaving hospital. Other than waking in the night, I have had no typical menopause symptoms.

So I had an oopherectomy age 40.

I already experienced menopause due to chemotherapy. Which was very similar to surgical menopause but with absolutely no HRT, just wham straight menopause.

I had a month of HRT post oopherectomy.

I can tell you that even without HRT, whilst induced menopause was grim to begin with (though this was also wrapped up in chemo), it was significantly better 9 months later. And massively improved when I tried gabapentin for menopause management. Now I can pretty much carry on.

From my experience of ooph plus HRT I would say there is still a period where you get used to the changed hormone levels and your body adjusts. But it will settle. Time is essential.

Best wishes

Oh and YY to 6 weeks of work and being surprised how long recovery takes.

I had hysterectomy and ovaries out aged 38. Hands down the best decision I ever made, totally life changing. The op itself was easy. First few days were painful but then improved quickly and recovery was straightforward. I could drive after a week, work from
home after 5 days and was back to work full time at 3 weeks. I went straight on to oestrogen patches and also have a vaginal oestrogen ring. I have had no menopausal symptoms at all and feel very emotionally stable.

I think this is "throwing the baby out with the bathwater". You are having perfectly healthy organs removed at an early age, unnecessarily, in the hopes of improving mood and pain levels, when in the natural course of things you may find this all settles or alters its pattern to be less debilitating in the next few years as your hormones start to change with perimenopause. I say this as someone who has dealt with decades of chronic pain and mood disorders. Find another alternative. As Jingling says, seek another opinion. A surgeon cuts, that's his job. I have read you have seen this one and that one over the years, but you really owe it to your body and future health to reexamine this decision. A discussion with a surgeon before the operation will be a discussion with a surgeon...

How are you @hysterectomywoes ? Did you have your op or did you delay?

@Rina66 delayed and felt nothing but relief. Had a meeting with my consultant and the option is there if I want it down the line. But just wasn't ready yet. Feeling good and due on in a few days.

I had this at 45 due to huge fibroids and it was the best thing I ever did. I was on HRT for about 10 years and tailed off really slowly. It gave me extra years of 'youth' and fitness.

The main thing is that you are taking control, it's your body. I'm glad you're feeling so much better.