Bulky uterus - Adenomyosis?

Hi, I have a question you might be able to help me with. From the last ultrasound I had, the gynaecologist who did the scan wrote in the follow up letter that I have a "bulky uterus". I've looked that up online, and as far as I can understand it, I think that means I'm likely to have adenomyosis.

I also understand that adenomyosis can only be definitively diagnosed in the case where the patient has a hysterectomy and a test of the uterus tissue is done. I'm keen to keep my uterus, and I've had a Mirena coil put in - and then read after the fact that the Mirena is often recommended for women with adenomyosis.

So, the first part of my question is this: does bulky uterus normally mean likely adenomyosis?

The second part of my question is: no GP or gynaecologist has talked to me about adenomyosis, what it is, or how I might manage it. Is this normal? Have I fallen between the cracks? I'm kind of baffled that they've not seemed to have picked up that this finding might be of special importance to me.

I'm on the waiting list for an MRI on the topic of endometriosis (maybe in the next 4 weeks or so), so I'm assuming that following on from the MRI, I'll have an opportunity to talk to a gynaecologist about the results. Does it make sense to wait for the discussion appointment after the MRI to discuss adenomyosis, or should I try to bring it up earlier with a GP or try to get a sooner gynaecologist appointment?

[123springtime]

Hi June Viola

Well it’s interesting you said about bulky uterus because that has been written on a few of my ultrasounds but never explained to me either! I thought it meant a larger than average uterus but now you’ve said that it ties with adenomyosis it makes sense. I had a ct with dye in my arm for kidney scan but the radiographer put in report a heterogeneous uterus with possible underlying adenomyosis. I questioned this with my GP he was reluctant to send me to a gynaecologist and continues to treat my pain with medication. I’ve not been officially diagnosed with adenomyosis yet

I think you should ask your GP before you’re mri then they know exactly what they looking for or try asking radiographer on the day? They see this sort of thing daily and are often very helpful 😊 I have tried mirena twice first time it really helped for about 4 years no period no pain but I suffered thrush every month when I would’ve had a period 😕 I suppose any medication is a trade off and comes with side effects. Second time mirena didn’t help me unfortunately but every one is different and it makes sense to try everything so we can get on and lead our lives pain free 😊 good luck with your mri let us know how it goes x

[TennisAM in reply to 123springtime]

Hi, can I ask why your GP doesn't want to send you to gynae? Have you been diagnosed with endo?

[123springtime in reply to TennisAM]

Hello! Yes I have endometriosis I was diagnosed and treated with a laparoscopy years ago but as we know it can grow in other places 🙁 I had the mirena as I said but no one ever mentioned adenomyosis until I read it as a possibility on my test results I hadn’t even heard of it. But after a bit of research i have a lot of the symptoms- I think it needs investigation so spoke to GP he said to treat the pain first so put me on pain medication but I think I do need to see a gynaecologist again as the symptoms impact my life. I think I’ll have to insist on a referral but I am just trying the pain medication first 😊

[TennisAM in reply to 123springtime]

Ah I see. Worth insisting soon, imo. There will be a bit of a wait for an appointment anyway. No harm in trying other things while you wait. 😊

[123springtime in reply to TennisAM]

Yes got to try everything really! Also I would rather a face to face appointment where i can be examined properly and what with restrictions at the moment it’s not a great time is it! Fingers crossed things are moving in the right direction 😊

[Hidden in reply to TennisAM]

Hi,Ah, I forgot to put the back story. Last year I went to A&E for pain, and the surgeon thought it might be appendicitis. Luckily for me, my appendix was fine, but I had ruptured endometrioma. So they gave me a wash out and I went home. My follow-up was by phone a few months later with a gynaecologist after I was referred by my GP. She told me I likely had endometriosis, but because I was trying for pregnancy, she referred me to the fertility clinic (I think they're closed due to covid). I later went to A&E twice in a weekend by ambulance last month because I was in intolerable pain. In the first trip, I had an ultrasound. In the second trip, In the gynaecology ward, the consultant kindly gave me a cancellation appointment for a diagnostic laparoscopy. I have stage IV endometriosis. There was too much work for one session, so she put me on the waiting list for an MRI to be considered with the multi discipline team. Meanwhile, I got the letter from the ultrasound gynaecologist saying I had a bulky uterus (news to me).

In other words, every period time is scary because I could potentially end up in A&E if I were to do nothing while waiting for the MRI and surgery. I'm now on the Mirena and mini pill, and I have successfully not gone to A&E this cycle! Success! Small victories.

In other words, my GP is fine, but getting info from the GP is hard work! I have to know exactly what to ask to get anywhere, and they volunteer no information. I am very proactive in managing what pain I have, but that means I have to understand where it is coming from. Hence, all the questions. Whew. 😉

[TennisAM in reply to Hidden]

Wow, that's a lot to get your head around but at least you're better off now than you were before. Not going to A&E really is worth celebrating! x

[TennisAM]

Hi June,

Adenomyosis is very similar to endometriosis but the legions grow through the wall of the uterus. It can cause very painful periods and heavy bleeding.

I've been told on numerous occasions that I have a bulky uterus. The first time was many years ago but my Gynaecologist confirmed from visual inspection of the outside of my uterus (during a lap) that I most likely don't have adenomyosis. It is possible that you have a slightly larger than normal uterus without having adenomyosis.

Some sonographers can see adenomyosis via transvaginal ultrasound and also Radiologists via MRI scan. Someone also said a gynaecologist saw adenomyosis via a vaginal examination. Worth saying to them when you go for the scan to look for adenomyosis if it isn't on the referral.

I had an mri this year, the gynaecologist didn't ask them to look for adenomyosis but nevertheless they reported that they think I have it. I'm pretty sure, as its a gynaecological issue, they will report on it if they see it.

Treatment is very similar to endometriosis, hormonal treatments and painkillers. It can't be removed as they can't do anything about it as it goes through the wall of the uterus. As you have said, aside from a hysterectomy, which does remove the issue.

In Australia they did a study to treat it via mri scanner. It got rid of it altogether for some women. Not sure what the outcome was.

[AllthatGlitters]

Hi I have a bulky uterus and got diagnosed with adenomyosis (also have endo) due to having an MRI scan. I was given an ultrasound which showed nothing, sure it’s because it doesn’t show up what is deeper inside. Hope you get your MRI soon and get some answers x

[Hidden in reply to AllthatGlitters]

Thanks for the tips! 😊