Adenomyosis: I had an appointment today... - Endometriosis UK

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Adenomyosis

buddie29
buddie29
•14 Replies

I had an appointment today with a new consultant who said that i have an uneven womb, one side being 8 and the other being 22 in size, he said that this could be caused by adenomyosis. What is it? I know it pops up on here a lot but never really paid attention. Am a bit annoyed that i already have endo and don't need something else in me that's messed up.

TIA

Becca :) x

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14 Replies
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Tboag
Tboag

Hiya, I had Adenomyosis and also have endo, adeno, is when the endometrial cells grow inside the uterus wall, and makes the uterus bulky and bigger than normal, I had terrible daily pain with mine, I've had a hysterectomy for mine now in July this year, I'm feeling much better but still having problems with my endo, has I don't think it's been dealt with properly,

How old are you?

And where is your endo?

Also are you under a endo specialist, or General gyne?

If you want any more details, please let me know, xxx

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Janine33
Janine33
in reply to Tboag

Can I ask, what were your symptoms of Adenomyosis and were they similar to endo symptoms or quite different ?

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Tboag
Tboag
in reply to Janine33

My symptoms where extremely painful periods, daily pain in back legs groin pelvis, hips, tiredness painful toilet habits,

I'm still in pain but nothing like before, I'm still struggling, but managing to work and live life to an extent, I would say 70% of my symptoms where the adeno, but the 30 left behind still need treatment, I still get very similar pains, in same places, but obviously not the periods, thank god, xx

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buddie29
buddie29
in reply to Tboag

I'm confused how just by having an uneven womb he thinks I might have adeno. It was literally a passing comment and then he went on to something else. I'm 19 which makes hearing all about the hysterectomy a bit scary tbh. Endo was found on my pelvic wall behind both ovaries but i'm adamant that I have it else where. He's on the BSGE accredited centre so I guess he could be called a endo specialist. xx

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Tboag
Tboag

It's very hard to diagnose, so don't read to much into it, my gyne told be after I had my first lap, and was diagnosed with adeno and endo, my uterus was enlarged and bulky and tilted,

Is your consultant on the list or the centre, I'm lead to believe consultants can work for the centres but not be on the list themselves, if this is true it doesn't make sense

, my adeno was confirmed by biopsy after hyst, but I'm convinced that I have endo else where also, I've got an appointment coming up for a BSGE consultant 18th, cozy I only see a gyne before,

Are you still getting pain/symptoms after removal of endo, ??

Did he excise it?

What did he say was the next plan?

Xxx

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buddie29
buddie29
in reply to Tboag

Ok ill try not to :) the hospital is a accredited centre. This is a different hospital to where I had my Lap so I got referred here when I still experienced pain. My consultant then did excise it.

For now he's put me on 4 months of laxatives and to take the pill back to back for 3 months. Ive done this before at my last hospital and neither helped so waste of time really but didn't want to argue as every time I said a point he would pretty much smack me down xx

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Tboag
Tboag
in reply to buddie29

It's very hard with some docs, especially at your age, have you read through Lindles post,

What are your symptoms and where is the pain and when,?

You DONT have to do anything you don't want, and the pill doesn't rectify the condition only suppresses it whils on it, as soon as you come off it, it will Probably come back,

Why the laxatives?

I've been drinking an aloe Vera gel, 60 ml a day, this has helped me with my digestive system I've my regularity and my energy level, I'm now working for the company, pm me if you want more details on that,

When is your next appointment?

Xxx

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buddie29
buddie29
in reply to Tboag

No i haven't seen it, i'll have a look. I don't know what my symptoms are for adenomyosis because it was just a fleeting comment after looking at my womb, he then went on to other things. My symptoms for endo are I have bowel problems and cant go to the toilet when on my period and if i do go there is blood. The laxatives are because i am constipated one minute and then the next i have to rush to the toilet so he suggested using them to free me bowel up more and that using them will probably take away most of the pain i feel. I also get severe back pain in my lower back. When i am on my period i get almost like i'd imagine contractions feel like because one minute it is just a dull pain and all of a sudden that area spasms and it feels like someone is scrunching up my insides.

Yep i know it only suppresses it but he said that because my pain is only when i'm on my period it's not that bad and so we just need to try and cut down the pain. Didn't mention anything about a lap because i have mild endo so didn't think that would be an option :/

My next appointment is in 4 months time where i'm guessing he's expecting me to go in and say im cured haha which is not happening xx

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Tboag
Tboag
in reply to buddie29

I couldn't say what pain went with what condition although I can say in my case the adeno was causing most of my pain, but there really isn't any text book answers, ladies with endo in the same place and same amount can have different levels of pain and in different areas, same with the adeno, I have been told my endo has all been excised from utralsacral ligament and behind uterus, but I no now my symptoms are coming from the endo as my adeno is cure/gone, I cannot believe he said that to you about the adeno without explanation, that's beyond belief, if you don't feel any better within the month, I would try to get seen sooner, or go back to your go and get rereferred to a different centre, good luck hunny xxx

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buddie29
buddie29
in reply to Tboag

Yh, i guess the pain would be different for every woman. I think he just thought it wasn't a minor thing cos its not affecting me in anyway maybe. He couldn't see my left ovary so don't know how that is but surely if its healthy you'd be able to see it cos it would be in the normal position. This is the second centre ive asked to be referred to so am a bit wary of asking to go to a different hospital. I think i'm just gonna wait it out and ask him what he meant when i go back in 4 months, thank you for replying :) xx

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Yvette101
Yvette101

Hi I have recently been diagnosed with adenomyosis and suspected endometriosis. The only non invasive way to diagnose adenomyosis is with an MRI scan. From what I was told they can see the adenomyosis in about 85% of cases. Mine showed up very clearly and also showed that my appendix appears to be attached with scar tissue to one ovary and that my other ovary is adhered onto my pelvis. I have no idea what pain is caused by what although any extreme left or right sided pain must be to do with my ovaries.

I have been put on Cerazette a mini pill to help with my adenomyosis because for me the only other option is a hysterectomy ( There is an adenomyosis site I once found that shows them experimenting with a much less invasive surgery which is suitable only for women without uteruses that are all scared up - and mine is due to the endometrial ablation which I am told by the consultants has caused the current state I'm in ) The Cerazette helps but I have been on it for only 2 months and is not perfect.

I would therefore recommend requesting an MRI scan and see what that comes up with. If they refuse maybe try a new consultant. I was lucky and had private health insurance even so it has been 3 years since pain started and 3 consultants later before I was offered an MRI (which I didn't know I needed) The pain from endo and adenomyosis can be referred all over the place so I believe it is of no use to try and judge what the problem is like that. You may have endo in places that they didn't look?

The last thing that may be of use for you is that for me at least it's a hard fact but alcohol and sugar in my diet significantly increase pain. For long periods of time (until I lapsed taking the remedies due to cost I found that natural progesterone cream, enzyme supplements of serrapeptase with nakitonase and high doses of DLPA kept me going, without it appeared the diseases progressed rapidly)

Good Luck x

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buddie29
buddie29
in reply to Yvette101

I have seen that an MRI is the only way to diagnose it really, thank you :) i'll ask him for more information on why i have adeno next appointment and then ask for one.

I believe i might have tried cerazzette but it wasn't for me, i had break through bleeds and spotting all the time i was on it.

Yep i believe that may be the case, after my lap he said he only looked at the womb, ovaries, bladder and pelvic walls which isn't really very helpful if i'm showing symptoms of maybe having it else where. Him saying that i only have mild endo however is making my consultant now say that i don't need a lap so don't know how easy it is to persuade him :/

Ahh ok, well i dont drink alcohol and i dont tend to eat sugary foods, however unfortunatly sugar seems to be in everything now a days.

Thank you for answering :) xx

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Mommy2
Mommy2
in reply to Yvette101

Hi Yvette101, can you tell me anything more about your endometrial ablation causing you trouble? I'm scheduled for one in February for endometriosis. Did you have a Sonohysterogram as well? Thank you

Reply
sarahgregory
sarahgregory
in reply to Yvette101

Hi Yvette101, just found this post and your comment when looking up adenomyosis. Could you tell me what exactly they found on your mri and the terminology of what they found please? X

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