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Adenomyosis Advice Association

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adenomyosis

kellymiddleton130811 profile image

hi all, i'm just looking for information as to what happens now..... i have recently been diagnosed with adenomyosis after having scans, now i had a phone call from my doctor to discuss options, only thing is all options suggested have been tried an not successful, so she has now referred me to a consultant at the spire elland hospital in Huddersfield, i'm am so scared, nervous an strangely happy to be getting back to my normal self (if they go ahead) as the option is hysterectomy, I've suffered for many years with pain, very heavy bleeding an loosing clots an now have a swollen uterus which makes me look 6month pregnant, i suffer with anxiety and depression aswell an constant migraines, so my question really is now i have a consultant appointment does this mean i am going to be having the hysterectomy? thank you everyone for reading i really appreciate your input an hopefully some useful answers.

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kellymiddleton130811
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Lallya profile image
Lallya

Hi kelly

I underwent a hysterectomy in july for the same symptoms.

I no longer have painful periods, pain or feeling tired all the time.

Best thing i ever did.

I still have my ovaries in place due to my age 38. I requested keyhole surgery as it's a shorter recovery and less invasive.

ElizabethC profile image
ElizabethC in reply to Lallya

Hi Lallya,

Would you mind describing how it is hormonally with a hysterectomy but leaving the ovaries? Do you get tested to check the hormone level or can you "sense" when the "period" would be without the bleed?

I am being investigated for possible adeno though it could be also endo (that was checked in my 20s and nothing found and at the time I had terrible period pains and heavy long flow) or it could be fibroids.

The severe pain has just become very noticeable the past 5 months and the swelling has been close to unbearable the past 2 months.

Consultant is trying to push the Mirena Coil which I do not want for various reasons. I just want this badly behaved uterus out (I've not had children, do not want children and am 43 so unlikely to have children anyway).

I do want to keep the ovaries though again for various reasons but am looking for information and experiences living without the uterus but with the ovaries.

Thank you.

Elizabeth.

Lallya profile image
Lallya in reply to ElizabethC

Hi. Yes i do notice when I'm supposed to have a period. I get spots and get tearful. I've worked it out and it's same timing. I had the prostap injection before my surgery which stopped periods but put me temporarily on the menopause i wouldn't recommend this unless things are getting too bad.

I've not been tested to check hormone levels but other than bladder pains I'm feeling great.

ElizabethC profile image
ElizabethC in reply to Lallya

Thankyou. I do appreciate you taking the time to explain it.

I don't think I'd be bothered about "feeling" as though I'm on a period. I can deal with that (and I was never tearful with mine - I AM now though with current probs, though that also may be do with being sick with respiratory issues all last year and having to deal with 3 bereavements in 6 months - most recent 2 weeks ago).

I have bladder pressure rather than pain - the pain is definitely in the uterus. The bladder just feels almost annoyed that it keeps being pushed in one direction and my bowel in the other!

I just want this out but feel I'm about to have a battle with the gynae who seems more keen on stuffing a coil into me (which I absolutely do not want at all).

Thanks again

Elizabeth.

Lallya profile image
Lallya in reply to ElizabethC

So sorry you are having such a bad time at present. There is always light at the end of the tunnel.

As for your consultant demand a hysterectomy if that's what you require every thing else is just a temporary relief.

It's your life your the one suffering. Even though I'm having issues at the moment awaiting to been seen regarding bladder spasms the hysterectomy I've never regretted having its changed my quality of life loads.

Lenton34548644 profile image
Lenton34548644

Hi,Kelly.

I don't suggest you have the surgery because surgery causes damage. I have adenomyosis, I came to know this during when I was pregnant in 2016 and went for ultra scan, unfortunately I lost the pregnancy at 11 weeks. A heartbroken experience.

Last year,one of my friend recommended Dr.Lee for me and followed her adenomyosis diagnose (keep strict diet + takes herbs medicine on time/per day ,i have taken Fuyan Pill for 3-4 months or so ),now i got rid of the heavy bleeding and pain and get pregnat again and last month,i gave birth to a health son.

So,if you dont know what to do next,maybe you can ask help from Dr.Lee from global.fuyanpills.com or you can directly google fuyan pills to get help. Hope my experience will help you. And best wished to you as well !

Lallya profile image
Lallya

Hi kelly. So sorry you are suffering. I myself went through the exact same symptoms as yourself and in july i had a full hysterectomy leaving ovaries in. I feel miles better now but still have some issues. I'm now experiencing bladder spasms which they think are related to my op. All the other pains have now ceased and my quality of life has returned. My opinion is not to other the prostap injection as that temporary put me in the menopause for 7 months before my op and that was hell. The symptoms still lasted 4 months after my consultant said it was my ovaries having a paddy lol as all the other parts had been removed and bladder and bowels had been moved around.

Hope you get all your issues resolved.

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