Can adenomyosis be ruled out with a hyste... - Endometriosis UK

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Can adenomyosis be ruled out with a hysteroscopy/lap?

pippyness profile image
12 Replies

I have chronic intermittent pelvic pain, dyspaeurenia and more recently started HMB at the age of 48.

A TVU then showed I have a 7mm fibroid inside the uterus muscle but it shouldn't be causing any pain because fibroids aren't painful. A year later and another scan was looked at by two radiographers on the spot and they decided it was adenomyosis. A further doctor said I had both and oh, it could be cancer...

Suitably frightened I recently had a hysteroscopy/laparoscopy and they found nothing at all. I went to my follow up appointment and the first thing she said was, "Any bowel problems?" Er, no.

I was told if there was adenomyosis there would be visible signs of it like adhesions in the uterus. HMB was explained as normal approaching the menopause. So gynae pain has been ruled out by them with no explanation now for what the scan is showing in the muscle.

"Have Tranexamic acid if you don't want hormones, goodbye."

At least I won't be ganged up on by the Mirena dealers any more.

3 years later this feels like I'm back to square one and I really don't want to go down the bowels road, as it were. I was for a while quite happy to believe it was adenomyosis because it made sense. Oh well.

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pippyness
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Julips profile image
Julips

I was diagnosed with Adenomyosis in 2010. It was given as 'most likely' reason for infertility following an MRI on my pelvis. At the time I was told that there was no way of 100% possitive diagnosis unless they removed the womb completely and biopsied it then.

I am not convinced that the hysteroscopy/lap would show that its definitely not Adeno.

The one thing I am clinging on to is that this will go when I pass menopuase. I was chemically put through this (Zoladex) before my IVF treatment and it was great! (IVF sucessful too!)

pippyness profile image
pippyness

Thanks Julips, you're telling me what I was led to believe about adenomyosis.

I keep reading that a good radiographer gets it right 90% of the time. They're the ones that are able to look through you after all, a surgeon is still on the outside even though they're looking inside. Everyone's assessing digital images of one type or another anyway. One of the pics they showed me after the op was just a blurry black triangle - I said "I hope that wasn't taken on the way in!"

Yes, roll on the menopause - I never thought I'd be saying that but hey ho.

Well done to you for overcoming it when you needed to, that's pretty awesome. I don't know how long you tried beforehand but 13 years without contraception and no kids kinda proves to me that infertility is probably part of it... and my bowel probably isn't.

It can be suspected when you have a lap as often the uterus is bigger than normal and "bulky".

I was diagnosed with diffuse adenomyosis by an MRI scan.

X

Impatient profile image
Impatient

I would say the MRI while you are bleeding is probably going to be the most effective way to get adeno diagnosed. it would only show up in a lap op if your adeno was activ right near the outside surface of the uterus and would show up as a lumpy surface, but f it is deeper inside then it wouldn't be spotted in a lap. if you search google images for adenomyosis you can see examples of this.

Julips profile image
Julips

Is it worth suggesting Zoladex treament to your doctor? It really did help re pain when I was on it and the side effects were weird...but I think worth it.

Ive been thinking about what I will do if this reoccurs to the level I was at previously, Im not sure how I feel about a hystorectomy...but its something Im thinking about...feels an odd decsion to make given my fertility path.....

I really hope that you get someone to give you the right treatment. If you feel adeno is correc then continue voicing that. I was convinced mine was endo before diagnosis even though they had only given me 'fibroids' as any sort of explanantion to the first failed treatment.

I was very lucky, my total journey was about 3 years and I fell on the second treatment, I have friends who have been through numerous treatments and over a decade of anguish. I completely sympathise.

x

pippyness profile image
pippyness

Thanks for the suggestions but they pretty much washed their hands of me at gynae and discharged me. I've already been made to feel like a grade1 neurotic for needing to know what it is and whether I can have any treatment for it.

One doctor said to me, "Well if you've had the pain for 12 years at least you know it's not going to kill you." I'm now inclined to agree with her.

From my recent experiences with the NHS I have come to the conclusion that anything less than life-threatening is now deemed to be 'shrug-offable' by doctors and if you can't shrug it off too then you're clearly suffering from anxiety.

All I can see is a miserable old age for many of us while the 'entitled' stomp in and demand their gastric bypass!

Julips profile image
Julips

Pipyness, LOL! It's sad but true! I really hope you find a way to get through the pain. Have you tried the alternative therapies? Accupuncture or relexology is definitely worth a try if you can afford try weekly. If it does help you shoudl be able to reduce the visits to monthly after a while.

Good luck x

Dillweed1 profile image
Dillweed1

HMB?

Julips profile image
Julips in reply to Dillweed1

HMB? Forgive my ignorance but what does this mean?

Dillweed1 profile image
Dillweed1 in reply to Julips

I've no idea either! It's in the original post above. Maybe hormone balancing ...??

Julips profile image
Julips in reply to Dillweed1

Oh yes!! haha! I thought you were suggesting something!

Just Googled...Heavy Menstrual Bleeding....

Dillweed1 profile image
Dillweed1 in reply to Julips

Thanks for that. Had not come across it before!

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