Full Hysterectomy and HRT: Hi, I am... - Endometriosis UK

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Full Hysterectomy and HRT

MissMinion profile image
8 Replies

Hi, I am currently waiting for a full hysterectomy (ovaries included) as after a lap a few months ago they found severe endo. I consider myself extremely lucky to have 3 wonderful children, especially as now I know about the condition, it seems I have been complaining to the doctor for about 8 years about these symptoms! Was in A&E again on boxing day with the agonising pain and vomiting, and am now having another ultrasound tomorrow. Anyway, I am just so confused about the HRT! I am having the op on the NHS but my consultant seems very knowledgeable which is good.....he seems to be the only one that is!! I am just so scared about it coming back especially if I take oestrogen. Does anyone know what the best option is? I know its different for everyone and my mum has osteoporosis so i'm sure that will be a factor in the decision. I would be really grateful for any experiences shared. Thanks Ladies :)

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MissMinion
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Linds123 profile image
Linds123

Hi I had mine on 10th December, previously I had been on zoladex for three months to shrink the endo back so they could do it laparoscopically. They want me to go on hrt (I'm 33) but have told me to wait three months before starting so that if they have missed any endo it will die before I start introducing oestrogen. I don't know if they would normally wait 6 months but reduced to 3 because of the zoladex. I would suggest speaking to the consultant to check whether this would be the case for you. Not sure how old your children are but would recommend getting prepared before the op, you can't lift anything and to be honest you are likely to have zero energy if they don't put you on hrt straightaway. I was discharged within 24 hours and honestly didn't know if I was coming or going I was so tired (and in so much pain from the gas they used in the op). I have been trying to walk loads as they recommended but it is very tiring but I have spoken to others and it seems it is par for the course when you aren't on hrt and your body is getting used to it. Good luck x

MissMinion profile image
MissMinion in reply toLinds123

Thank you that is so helpful. Nobodys even mentioned zoladex to me. When I asked if they could do it laparascopically I was met with a short sharp no, with no explanation! In fact the consultant I saw that day was not my regular and she was awful so ive got an appointment with mine at the end of Jan. The kids are 14,11 and 7 so no lifting involved! I'm expecting the hrt conversation soon, I'm 35, so your comments about not having it for a few months sound good, it's nice to be prepared and know a little bit about what you're talking about! Hope you're feeling better now. :)

Linds123 profile image
Linds123 in reply toMissMinion

My consultant is through an accredited centre and specialises in laparoscopic surgery. This may be why they said no to you. My original consultant (I'm from the Channel Islands) wasn't prepared to do it at all as I had adhesions to my bowel and by the time it got to surgery it was even worse (left ovary attached to bowel, back of uterus, right ovary and the whole womb rotated as a result). Had they been able to operate over here it would have been a laparotomy so I would be in the same boat as you. Recovery for that is about 8-12 weeks whereas mine is 4-6 and you can't drive during that time - a killer for my daughter's swimming training and shopping - Christmas was purchased and wrapped by 30 November, the freezer filled with meals and lots of favours called in to run her round! I'm due back to work next week but had an infection the weekend before Christmas so was in hospital over here having antibiotics (a totally different experience to the nhs that's for sure!!) so feel it's kind of put me back a week. I am surprised you haven't heard of zoladex, or something similar, from your doctor. I would recommend reading up about it before you take it etc, there are a lot of side effects and as a result some consider it a creation of satanic proportions! I only had occasional hot flushes but others have been worse. Some people however have kept diaries to see how they were but I can't help but feel this just scrutinises the whole thing so much so it's not a true account - if I wrote down every ache and pain everyday and continued whilst on zoladex then fair enough but to only start when you're on the stuff will include things you may have had for years but never paid much attention to!

fionat profile image
fionat

Hi

I'm waiting for my hysterectomy date to come through & currently on a different form of triptorelin. I've had 3 months so far & this month I've been prescribed an alternative for HRT as hot flushes & night sweats are a bit extreme. I have found that a few symptoms have returned since taking the HRT alternative, but no way near as severe. They are keeping me on the injections before the op as I also have adenomyosis.

My consultant has also recommended 3 months without HRT post op to make sure any left endo will die off. It is definitely worth discussing these options with your consultant. I am 40 & have 1 child who is 5 & have to do the school run every morning so, hoping I can delay the op until the Easter hols.

Hope this helps & you can get chance to discuss these options with your consultant.

MissMinion profile image
MissMinion in reply tofionat

Thanks for your reply. I am due a scan today so am hoping that will bring my date forward a bit! Just the waiting is horrendous. Will definitely be talking about no hrt for 3 months! This makes so much sense. It seems that people have been given medication to prepare for a hysterectomy but i havn't been offered anything. Thanks again and lots of luck x

Linds123 profile image
Linds123 in reply tofionat

Hey, good luck with your op! Just make sure you plan ahead - you literally can't do anything (although you'll probably feel like you can - I do!) and if you don't follow the advice you can do way more damage. My biggest issue is I can't always lift the water jug out of the fridge (if it is too full) because it is so low so can't make a drink myself and cooking a dinner for everyone is out because the oven is too low and I can't put the dishes into it! On the plus side I've knitted two scarves and watched countless Christmas films! So frustrating x

MissMinion profile image
MissMinion

Thanks for your comments, they really do help, I will be doing my research and writing down questions for my consultant!! x

mitzymoo profile image
mitzymoo

Hi Angels

Happy New Year to you all

I had a total hysterectomy with both ovaries aswell in june as they found i had womb cancer stage 1 so all was removed and don't need any further treatment, but i can't have hrt due to it being endo cancer.

I was told to research natural estrogen supplement to ease hot flushes etc, and there are lots of foods and herbal supplements, mostly soya products so it may be worth mentioning to your consultant about it.

My consultant gave me websites to look up to get the things i needed as some supplements still have things in them that can cause more problems, so be advised!!

Take care and angel blessings to you all

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