Asking a question on behalf of my Mum wit... - Endometriosis UK

Endometriosis UK

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Asking a question on behalf of my Mum with regards to a hysterectomy. Ladies who have had it what did you keep?

JadeH92 profile image
6 Replies

My mum is 51 has always suffered with extremely heavy periods and as she has gotten older this has gotten significantly worse.

After being put on iron tablets and tranexamic acid by the GP with not much relief she was referred to a gynaecologist.

The gynaecologist examined her and said her uterus was the size of a Grapefruit, arranged an ultrasound scan which showed multiple fibroids. He offered her a hysterectomy but she was hesitant and wanted to see if it could be managed without surgery first.

She had the Mirena coil inserted but the heavy bleeding continued which resulted in the coil falling out. She was then put on the mini pill to stop her periods and this has helped massively but she is still suffering.

The pelvic pain and heaviness is increasing and she is also now having issues with frequent urination because the size of her womb is pushing on her bladder.

The gynecologist wanted an MRI to get a better picture and due to Covid she has only just had the results. The had grown 1.5cm in the 8 week gap from the ultrasound to the MRI scan and this was in April so God knows how much it has grown now.

Because I have endometriosis and adenomyosis I am convinced that my Mum does to and it has just been untreated / undiagnosed.

She has been for an appointment today agreed to a hysterectomy however, the consultant is suggesting she keeps her ovaries and cervix. This obviously concerns her because these are the 2 most common areas to become cancerous.

I was just wondering if anyone who has had a hysterectomy has any advice for her and also if they kept anything when they had it done and if so why?

Many thanks in advance!

6 Replies
eunha profile image
eunha

Here is a video from the specialist I went to. Its about hysterectomy with/without cervix. Sorry I'm not of much more help, hope it goes well for your mom 💕

m.youtube.com/watch?v=FP6ap...

JadeH92 profile image
JadeH92 in reply to eunha

thank you soo much I have forwarded it on to her 💕

BloomingMarvellous profile image
BloomingMarvellous

Sounds as if your Mum has exhausted options at this more extreme end. Complications from not dealing with bladder and bowel constriction are high risk if not dealt with. Your hunch that it may also be the same problem is quite possible too and a biopsy of the tissue post op should reveal that. Leaving ovaries is a real matter for debate with endo as it can be a continuing feed for it. The cancer risk is dramatically reduced with the removal of the tubes according to my surgeon when my ovaries were left but the tubes removed ( not hysterectomy though !) Post surgery adhesions are always a risk endo or not but certainly increase with this disease process. Things like serrapeptase can be really helpful and specific hypopressives pelvic physio important to help with recovery of core strength and reduce intra pelvic pressure. Hope she gets well soon

JadeH92 profile image
JadeH92 in reply to BloomingMarvellous

Thank you for your reply. If I'm honest I don't even think they have considered endometriosis / adenomyosis because let's face it they don't bother when they think they are removing everything anyway.

I think I'll get her to ask if the scans have been reviewed for any other issues than the obvious fibroids and I will let her know about the serrapeptase and pelvic physio.

Thanks again for your reply 🥰

BloomingMarvellous profile image
BloomingMarvellous

As a matter of course they do tissue analysis to check for no nasties. They ought to be able to confirm with that.

Pureunicorn profile image
Pureunicorn

Hi JadeH92,

Im 40 and I had a total hysterectomy in March, I wanted everything taken out as I didn't want to have to go through anymore surgery! My surgeon said I made the right choice and said she even had to take my cervix too. I can honestly say I've never felt so good, I know it's still early days but I'll take that 😁, I take HRT but thats becauseof my age (and hot flushes 🤣). I hope everything goes ok for your mum and good luck x

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