Is Adenmyosis a dirty word???

[smartyq]

Has anyone came across this in any of their appointments, whenever I mention this to Dr's and consultants I've came across over the last 12 months it's almost like shhh we don't talk about that! Or seem cross like I shouldn't have said the 'A' word!

[missteal]

I think I may no why. Adenomyosis can only be properly diagnosed after a hysterectomy so if you mention it to a Dr they think "well we can't find out if you have it unless we do a major op!"

My consultant has told me that I most likely have this but can't diagnose me with it so he's just treating me for it anyway as the medication is working. The treatment for adeno and endo are the same so a diagnosis isn't always needed anyway. He came to the conclusion with me because I had mild endo removed and then two years later had another lap to find I had no re-growth but had the same symptoms and the treatment was working.

Is this something you think you might have? what symptoms do you have as I might have similar to you x

[daniellewright]

Yes - they don't like to talk about it. Please feel free to visit the Adenomyosis Advice Association website and email me for further support as necessary. I fear the reason

they don't want to discuss it is because VERY FEW are trained in what it actually looks

like - hence why I started up the AAA. I can confirm now though that the NHS and other

teaching hospitals and organisations are actually using the website to teach gynae clinicians

all about the condition. It has been like pulling teeth, the agony of making them all realise

that adeno is SO common. Danielle Wright, Founder of the Adenomyosis Advice Association

[lizzy1976]

Hi, i had an appointment with my gynea a couple of months ago, he said i had adenomyosis, he had seen it when he was doing my 3rd op to remove the endo, i have all the symptoms of it and have had for a long time, he also said it cant be removed and my only option was hysterectomy, which i might say he didnt want me to rush into as we dont have any children and failed ivf in March, so i am left in limbo at the minute and was put on the pill again to help with pain. I was looking through the internet and found a site that was of a doc in the usa who can remove it.. how i dont know but i guess they are more aware and further on in some operations than over here in Northern Ireland! Oh the joys of living in pain and shaking when i walk from taking pills, good thing is that i am not on my own which is nice to know x

[mrsgoogle]

Hi there, my consultant suggested I had this just last week. I was diagnosed with Endo about 8 yrs ago. I have been very, very fortunate that it never affected my fertility (I am a mum to three). Anyway, my symptoms were relatively minor after the birth of my youngest 5 years ago then in Jan of this year they came back with avengence. Chronic pain and a 2 wk cycle- which is what threw me initially as my endo was never really 'cyclic'.My GP was of no help so I went privately to see my consultant. Had an internal where he said my uterus seemed very bruised and tender, He was concerned about the pain I had on one side and wanted to check for cysts- I had a scan and we ruled that out.I was more concerned that my symptoms all sounded like cervical cancer- I really must stop googling ! Anyway I had a hysterostomy (camera up my bits!) last wk and my consultant said it's highly likely that is what is causing my extra pain and bleeding.My uterus has basically grown into the muscle wall. Sounds lovely ! I've tried all the treatments, lotions, potions, HRT over the years, you name it ! Nothing helps, if anything they worsen my symptoms or give me a whole new set that I didn't have before. In a nut shell I am now doing a menopause dance ! I am 37 so an early one would be just grand as it is likely to be my only respite from this illness. My biggest fear is I have two daughters- the thought of them going through this when they are older breaks my heart.

[mrsgoogle]

Oooo I forgot to add there is a drug just launched in the USA that supresses periods for a yr. Not available here yet- my doc said when it is that is what he wants me to try.

[JulesUK]

I had never even heard of adenomyosis before I read about it on here about 2 months ago (so useful you people however to cut a long story short I recently changed my gynae and she sent me for a ultrasound I wasn't expecting them to find anything as scans often don't pick up the Endo just the lap. Anyway turns out the guy who did my scan was some kind of expert specialist (I was told but can't remember his title) he was excellent, picked up my Endo that has come back and also told me there was the adenomyosis and explained it to me whereas no one has ever before, my new gynae recommended a lap to remove my Endo and she also explained that the adeno cannot be treated in the lap surgery because it's in the muscle therefore cannot be removed. (that's why a hysterectomy is good for adeno as its in the womb but is not a cure for Endo as that's in places other than the womb) yesterday I had the lap to remove the Endo and she has fitted a mirena coil which we hope will help the adeno. (it's too long to keep writing!)

Keep pushing for answers, we shouldn't have to but we know it's the only way forward. Take care x

[NickiP1602]

I'm with a specialist now and apart from the MRI that will confirm Adenomyosis, he knows I've got it because the uterus is very big and bulky and the disease is visable from the photos he took when doing my lap three weeks ago. He has said if I had children, he would remove the womb now but because I don't he obviously won't and is still adament than pregnancy is not completely ruled out for me, even though I've given up hope! From reading all these blogs on this site, I would say the key for all of us is making sure we have a consultant who is expert in the field of endo and diseases that go with. My previous laps were done by a consultant I thought was brilliant only to find that he has actually caused me more problems than I had needed! Sometimes it costs money and its not right, but health is valuable and I would now advocate that by paying for a specialist will in the long run pay dividends. There is no price on health!

[Chrissie66]

I think lots of consultants still assume they can use the Mushroom Technique with their patients, and are disturbed when they are confronted with strong minded women who have done their research and aren't prepared to be fobbed off. Lots of them still expect us to just nod when they say there is nothing they can do. Although in this case there isn't much they can do for adenomyosis, but that doesn't mean they shouldn't at least discuss the options with you.

Take care x

[nickym1d]

Hi

Danielle thanks for sharing your website info, will definitely take a look.

Ive just had surgery here in Dubai with an amazing surgeon who has removed adenomoysis from my uterus. He also did some fancy surgery on my ureter and rejoined it in a different position in my bladder. Total amazing surgery that my doctors in the UK all told me i had to live with.

[Littlel13 in reply to nickym1d]

Hey, thank you for sharing. What is the consultant name? X

[smartyq]

Well its good to hear that you ladies are all pro active and not lying down and taking it all.

I myself had a hysterectomy (apart from my ovaries) 3 weeks ago. I had all the signs and symptoms of endo and adeno put clear laps and MRI didnt pick anything up.

Consultant said that it may be andeno but couldn't confirm this until after i had hyst.

I have got 3 children the youngest is 3. so didn't want any more children. As i am still very sore and recovering it is hard to say if the chronic left hand side pain has gone yet. But i know that i will not be getting heavy periods and dragging pain down my pelvis and legs anymore.

unfortunately because of my age and having my ovaries i will still have PMT which i have done a bit of googling (me too mrs google!) Andeno is due to higher estrogen in your body which there is a medical name for i cant think now. I am intending on seeing a natural healing clinic to give that a whirl!

xx

[inpain]

They cannot and wont know you have this unless you have had a hysterectomy. So those whose consultants say they have it are incorrect as they dont know. The womb needs to be removed and sent to the lab for analysis and then the results will be back Nothing else is then done as the womb is removed.

[hopefully in reply to inpain]

Yes it is quite right it is difficult to diagose as it is within the uterus, but many women will have procedures to look inside the uterus, whether this be a camera or the procedure to remove fibroids within the uterine cavity.

I have was diagnosed with adenmyosis, which I had never heard of before that surgery. During my 3rd lap a year and so ago, I was having my bulky uterus inspected, the doc cut it open clean and within it found what he later said was adenmyosis, it was previously a suspected fibroid, the doc said it was very strange and wonderful discovery! - as it had chocolate cyst within and he had never seen this within adenmyosis, (despite being a v exp. spec. cnsltnt!) he showed me the pictures and it looked very amazing smooth white outside with thick creamy chocolate inside!!

Anyone else had chocolate cyst anywhere else other than ovaries?

I agree from the research i have done into womens gyna disorders, it seems that estrogen is too high -I think they call it estrogen dominance. it is said if the estrogen is much higher then the testosterone this causes the imbalance.

I believe that change of diet can help this a lot if you think about it we are consumng alot of excess estrogen hormones regulary in food ( cows milk) meat plump chickens)not to mention those that mimic the hormone. If you can offord organic is wouldcertainly improve your health and well being i am led to believe only its a bit pricey

[smartyq in reply to hopefully]

My cousin after a scan for something else discovered she had a chocolate cyst, quite nasty little buggers apparently she eventually had her ovary removed.

Since my opp I have been doing my own little bit of research, which has lead me to Estrogen Dominance, which again completely does not exist in any of the British web sites.

Because I have still got my ovaries, my hormones are still all over the place, so would like to learn more about calming them down. HRT is not an option just yet as I am 38.

I again have All the symptoms of this, but cannot find any sort of advice or cure. I am going to attend a natural healing clinic in the new year in the hope that they can help and advise me. xx