Uterus size???: Hi all, hope ur all doing... - Endometriosis UK

Endometriosis UK

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Uterus size???

Pureunicorn profile image

Hi all, hope ur all doing as well as can be 😊 so after months of waiting I I finally go a letter for my consultant, what a waste of time 😒 so bloods are fine, cysts haven't changed (good news 👍) uterus is bulky measuring 101 x 46 x 64mm, is this bad??? Any help or advice would be great, thanku xx

25 Replies

I don't think is "bad" , most important is if you have bad symptoms. My uterus is 160mm length.. up to my belly bottom. This is due to numerous fibroids. Gives me heavy periods, thats is.

Pureunicorn profile image
Pureunicorn in reply to SraB

Hi, thanku for ur reply, I did have bad periods but I'm now on decapeptyl injections (have been for 1yr now) I'm waiting for a hysterectomy, I've nit been told I have fibroids but how knows lol!! Xx

Hi PureUnicorn how are you doing? I have a “bulky” uterus but not sure what the measurements are. That’s how they know no have adenomyosis.

Do you have endo and adeno?


Hi AllthatGlitters, I'm doing ok thanks, hope ur ok. All they have ever told me is that I have endo and cysts, so if u have a bulky uterus does that mean adeno and fibroids do u know? Endo is such a mind field 😫 no one seems to want to give u any answers! Xx

Hey oh I don’t know about fibroids but they said because my uterus is bulky, I have adenomyosis too. That was seen via an MRI scan. Have you had one of those? X

Hi, yes I had one over a year ago when I was referred to the endo specialist but communication has been crap! In April they said they had sent a referral for a bone density test, after me making calls found out that never happened! So I dint have alot of confidence in hospitals at the mo! Xx

Yeah that is totally understandable. It was my GP who gave me the results although gastroenterology referred me at the time as the pain and other symptoms related to gynaecology. Do you think your GP could tell you more? Are they any good? Xx

Hi Mine was measured in weeks as in pregnancy, it was around 16 weeks. I don't know how that compares, but loads of fibroids as well, they were causing the swelling I think as well as Endo

Hi Moon_maiden, hope ur ok, so if u have a bulky uterus does that mean u have fibroids too? I've only ever been told I have cysts and endo xx

My little journey started with a bladder ultrasound, that was ok but she picked up three fibroids. Drs said too small to be an issue but I insisted on a referral. I was pretty livid by that point 😂 they didn’t refuse, didn’t dare 🤣I ended up having private lap to confirm/treat endo, only to be told more extensive endo, large uterus and more fibroids than had been seen. Hysterectomy the fibroids I think had their own blood supply away from the uterus. None of that showed on MRI, at least not in the report. I’m not sure how many in the end, for me pretty sure the fibroids had a lot to do with the uterus being bigger.

I think it will be different for each person, I haven’t seen the biopsy report as that was missed in the records I was sent for some reason.

Do u know what I'm so over it all! They dont fill me with any confidence anymore, I think I will try and call my GP and see if they know anything different to what I know, I just font see how it's so hard to tell us everything without us having to chase all the time! Xx

Oh I am so with you on that one, it’s ridiculous and some of that has been part of my complaint, not providing information that I can make an informed decision. I have a meeting with gynae and head of gynae department on Wednesday. Your GP can also contact the consultant via their system, if they say they don’t know anymore tell them to direct the question for you. The GP should want to know anyway.

Thanku, I'm definitely going to speak to my gp and see if I can find out more. I did phone PALs but that's another one I need to chase up 🙄 xx

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Hi - if you had an ultrasound, they should tell you in the letter if fibroids were observed. If it's not mentioned in the letter, that likely means no fibroids were observed.

A bulky uterus can mean presence of adenomyosis (making the uterus larger than normal). If you have symptoms of pain, it could be useful to follow up and ask if the pain could be related to adenomyosis.

Pureunicorn profile image
Pureunicorn in reply to Hidden

Hi, June_Viola, thanku for ur reply, I've had some many ultrasound looking for cysts! I've never been told I have adenomyosis but that doesnt mean I dont I suppose. I think I need to call my GP and see if they know anything, as I dont seem to get any joy with my specialist! X

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Hidden in reply to Pureunicorn

Hi - they're good questions to follow up on.

For adenomyosis, the mirena coil is often suggested because it can help to shrink the endometrial-like tissues in the uterus (where there is adenomyosis), with local delivery of hormone - levonorgestrel. It helps to reduce the amount of period bleeding as well each month, which can help to reduce endometriosis pain.

There tend to be lower side effects with mirena than the mini pill. However, the mirena is just one size. So, it doesn't sit comfortably for all women. It has been fine for me, but others needed to have it removed because it was uncomfortable. There is another IUD with hormone available that comes in a different size, but I forget the name.

Pureunicorn profile image
Pureunicorn in reply to Hidden

Thanku, I'm already on decapeptyl injections as I tried most other things and they didnt work, think I'm definitely going to call my gp and see what they say and chase PALs to see if they can find out more xx

joey81 profile image
joey81 in reply to Hidden

Hi June Viola, can you kindly tell me if one can have the mirena coil while also still trying to conceive for a baby? I have Adenomyosis and Endo and have had 2 miscarriages and currently going through the third potentially (still hopeful but i may be deluded). Many thanks x

Pureunicorn profile image
Pureunicorn in reply to joey81

Hi joey81, no sorry you cant as it's a form of contraception too, hope everything works out ok for u xx

joey81 profile image
joey81 in reply to Pureunicorn

Thank you xx. Im finding it so hard to get much info on pregnant with adenomyosis

Pureunicorn profile image
Pureunicorn in reply to joey81

Sorry I cant be much help, but good luck and I hope all goes ok 🤞 x

Being on decapeptyl for one year sounds long, i understood should be max 6 months or becomes risky, I would go after those bone density reports as well. Communication is a mess here as well, friday i called gp, gyn and gastroenterologist and no one would tell my how bad are my liever enzymes numbers (gammaGT 135, should be max 40, ALAT 59.. no idea if its ok)

Pureunicorn profile image
Pureunicorn in reply to SraB

Hi SraB, yes well it's only ment to be for 6 months but can be used for longer (so I've been told) it's just so shocking that we have to do all the chasing and find the answers, when it should be them doing the answering and making us feel better/safer! Xx

I have a bulky uterus too- diagnosed with adeno and endo xx

Pureunicorn profile image
Pureunicorn in reply to Zo95

Thanku for ur reply, I think I'm definitely going to ask the question now and the more I read about adenomyosis the more I think I could have this as well as endo xx

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