HRT After Hysterectomy : I had a full... - Endometriosis UK

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HRT After Hysterectomy

Tetley1976 profile image
9 Replies

I had a full hysterectomy 3 weeks ago due to suffering from stage 4 Endo for 25 years, I am currently struggling to get HRT I’ve been told by the hospital that I must go on it due to being 44 and the complications I could suffer if I don’t.

The issue I’m having is that my doctors are telling me that they are not experts in this field so don’t know what to put me on and the hospital are saying it needs to be a combined HRT to start with due to the Endo but it’s the doctors responsibility to prescribe me the correct one not the hospital!

I’m on the high risk list for Breast Cancer as I lost my mum In her thirty’s which isn’t helping, as they seem to be very concerned about this even though I get tested yearly.

Currently I’m going around In a circle, so was just wondering if anyone else had experienced this?

Having major surgery, was not a decision I took lightly due to my age but Endo had destroyed my chances of being a Mum 😢 so I took the decision to do this to get my life and my relationship with my husband back (he has been my rock through this but we all know what our partners go though living with Endo without going into details) had I known that I would come up against another hurdle I would have made sure this was sorted before I had the Op!

Sorry for the rant...just feeling frustrated that I’ve spent so many years fighting against Endo and now I’m doing it again to get the right HRT 😔

Any advise will be great fully received.

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Tetley1976
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9 Replies
Mountainwonder profile image
Mountainwonder

Sorry I can’t offer any advice but just to say I too am struggling to get advice re HRT. I’m 42 and had my op in December for Adenomyosis and it confirmed I’ve got stage 2 endo. I should have been seen in outpatients beginning of February but they could only offer me an appointment with the locum consultant so I stupidly waited to see the consultant who did the op. The appointment was this Monday and they rang to cancel because of covid19. I left a message on his secretary’s voicemail asking for a telephone consultation but no one has been in touch. Feels like we’ve been abandoned doesn’t it!

Tetley1976 profile image
Tetley1976 in reply toMountainwonder

Thank you for your reply, hope you manage to get hold of someone and get another appointment soon!

Tinkerbell16 profile image
Tinkerbell16

Hi Tetley1976

After my hysterectomy my consultant prescribed my HRT as they have more knowledge in this area than a GP, this happened at my six week check-up. I was prescribed patches to start with, but they did not suit me, I now have Estradiol gel, which I apply daily to my thighs and it is fantastic. It is best you see your consultant who has your full medical records and you can explain about your family history of breast cancer to find the best HRT suitable for you. Perhaps a phone consultation would be possible in these difficult times. Good luck.

Tetley1976 profile image
Tetley1976 in reply toTinkerbell16

Thank you for your reply, that’s a great help and good to know that the gel worked for you better than the patches - as these would be my two chosen methods.

ladybird10 profile image
ladybird10

Hi there

I had a total hysterectomy and bowel resection 3 weeks ago for stage 4 endometriosis I’m 41.

I was told by my consultant that I needed combined HRT and don’t let my GP tell me otherwise as there is no guarantee every cell of endometriosis is taken.

My mother had a full hysterectomy in her 30’s but then passed away at 59 of an estrogen fed cancer where they think something must have been left behind at her hysterectomy.

Generally gps normally prescribe estrogen only HRT if your womb is removed make sure you get combined

My consultant has recommended I take

Femoston 1/5 I haven’t rung the GP’s yet to try and get it 😬 as I’m still on the blood thinning injections.

Good luck x

Tetley1976 profile image
Tetley1976 in reply toladybird10

OMG I’m so sorry 😢 yes you must make sure you are put on the one the consultant has recommended as the GP’s seem to have very little knowledge on this, which to be honest scares me - as I would have put my trust in a doctor thinking they know best!

Thank you for the advice.

Good Luck x

Whoisthis profile image
Whoisthis

Hi, where are you based? I went to a private hormone clinic, had bloods taken and they were able to prescribe the correct does, of all three.. my testosterone was low as well.

They then do blood tests every 6 weeks and help you manage the balance.

I bypassed my GP they were bloody useless, I’m able to email them directly and it’s been the only thing keeping me sane this last few weeks as my endo operation was cancelled and I’m on morphine for endo pains daily.

But I’d recommend finding a private clinic, getting bloods done, then dropping back into NHS in the future with your own knowledge, then you can ask for what you need xxxx

Tetley1976 profile image
Tetley1976 in reply toWhoisthis

Hi, I’m in Oxford, thank you for you reply that’s good to know. Sorry to hear your Endo Op was cancelled and that your in so much pain 😢 I hope you get another date soon xx

Whoisthis profile image
Whoisthis

Me too!! So the clinic I went to is in Hartley Witney, I’m thinking about 30 minutes from you?

If you can afford it it would be life changing to be listened too and cared for xxxx

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