[carrie73]

Hi

Please can someone advice. I had a laparoscopy 3 yrs ago to remove an endometrotic cyst on ovary and they also said my womb looked 'bulky' maybe due to adenomyosis but they can't be sure. Subsequently I have had a few ivfs! During treatment 2nd ivf utrasonographer said I got fibroid. I have recently had a transvaginal scan & the doctor performing the scan said its a fibroid. However, after a tearful consult with a specialist he believes its adenomyosis due to my symptoms (painful periods) & not a fibroid. I am also due to have an MRI(own request)....consultant said even if result says fibroid he won't be convinced as he believes its adenomyosis!

Pls can someone help me with some answers to the following questions:
(1) How did you have your adenomyosis diagnose? Was it a definitive answer?
(2) If you had an MRI pls say what % adenomyosis?
(3) Any other ways to confirm adenomyosis?
(4) My measurement of fibroid or adenomyosis is 6cm...if its adenomyosis I was told its bad! Anyone with this amount of adenomyosis got pregnant/baby?

I am a bit depressed as throughtout treatment all drs gave me the impression that adenomyosis was not that big a problem (it may affect implantation but does not mean you can't get pregnant)...anyway the conclusion to my many failed ivfs was my age. I am going thro' a difficult stage in giving up with OE to accepting DE.....BUT its only now I'm told even with DE with bad adenomyosis it not good!!!

Many thanks in advance!
Carrie

 

[mc2002]

Hi Carrie


Sorry to hear you're feeling down. I too have been diagnosed with fibroids/adenomyosis and agree the lack of clarity and information makes it really hard. I've had two myomectomies to remove fibroids/adenomyosis and have more growths now. I currently have a Mirena in to try to limit the growth until we start trying with me (we've been ttc with my civil partner for the past 21/2 years, but that's another story!).


From what I've been told and read, it's incredibly hard to diagnose adenomyosis definitively - I think the only way to diagnose 100% is to take a sample of the tissue. I too have been told I have a 'boggy' and 'enlarged' uterus and the last myo I had, the histology report identified the tissue as adenoymosis/fibroid. So even then, no conclusive answers!


I have had two MRIs, one before each myo, but they were never able to diagnose adenomyosis on these. This was 3 years ago now so not sure if they're now better.


I too recently had a scan with our fertility consultant who didn't give me much hope about my chances of having a baby in the future. I was really down for a couple of months - on top of all the other problems we've had ttc, this seemed like a double blow. However, I refuse to give up hope... I'm sure there must be people out there who've been successful who have adenomyosis. It seems that very few people actually get diagnosed with it so I'm wondering if some people have it but don't even know.


I too would love to hear some success stories and from other people who have adenomyosis. Don't give up hope though...


Sorry if this has turned into a 'me' post! x

 

[mrsm2009]

Hi Carrie, I'm sorry you're having to deal with all these conflicting opinions 

In 07 I went to a specialist with painful periods and had a laparoscopy for endometriosis.  When I went back saying I still had the pain I was symptomatically diagnosed with adenomyosis and simply thrown a leaflet about the mirena coil to help ease the monthly pain.  Two years later when ttc'ing, after losing our first baby and having trouble conceiving again, I insisted on more investigation for the adenomyosis from a different specialist.  He sent me for an MRI as he explained it is the best way to assess 'patches' of adenomyosis.  It turned out I didn't have it at all and the pain had been coming from a submucosal fibroid (somehow not picked up by the first specialist in 07, despite having the cavity dye test during the lap  ). 

I think / hope the MRI will help give you some answers.  You could see what your consultant says about the results and always ask for a second opinion too.  When I was looking into it I found little about adenomyosis, I don't think it's been very much researched as yet, however I do recall there has been some research into adenomyosis and fertility in Belgium, maybe have a google as it might give you some info and the people involved might be able to point you to someone over here. 

Let us know how you get on and please don't give up hope xxx

 

[carrie73]

Thanks for your advice!

mc2002 - sorry to hear you are going thro' a tough time. I agree with you about not getting a definite answer. But from both of my doctors (fertility & specialist endo) they both said the only way to diagnose adenomyosis is by a biopsy. The endo specialist said you can't remove adenomyosis as it grows amongst the uterus fibres, whereas a fibroid the fibres of uterus gives way for this growth so it can be removed. This is a bit confusing now as I saw some old posts here saying they had some kind of adenomyosis removed...I think its something called an adenomyomia or something??
I've looked thro' all the old post on this forum re adeno & I think I did see some ladies that did have babies. Don't give up hope....as I see age is on your side!

mrsm2009 - thanks for sharing your success story as it gives us hope. I suppose from the beginning adenomyosis was a wrong diagnosis for you as at the lap there was no mention of your uterus looking 'bulky' or something like that. Can I ask when your fibroid was removed how long do you have to wait before ttc?

carrie

 

[mrsm2009]

Hi Carrie, there's 3 types of fibroid, intramural which are in the womb muscle itself, subserosal which are on the outside of the womb, and submucosal which impinge on the inside of the womb.  Mine was submucosal which is the least common type and the one that tends to more commonly impact fertility as it distorts the cavity.  However removal of submucosal fibroids tends to be easier as it can be done through the cervix, thus you can usually start to ttc again after your next period.  The 2 other types of fibroid can either be removed laparoscopically or via an open abdominal myomectomy, depending on size and location, which take longer to recover from (up to 6 months with an open myo). 

I had mine removed last November and got pregnant this April so I was very lucky.  Will you be given a hysteroscopy as well as an MRI?  My MRI showed a growth / thickening but it wasn't until they went in with the camera and had a look afterwards that they could be sure what it was. 

Hope you don't have to wait too long for answers...    xxx

 

[mc2002]

Hi Carrie


I haven't heard of removing adenomyosis before... I think the adenomyosis gets 'jumbled up' in the muscle wall of the uterus so I would have thought this would be really hard to do, especially without leaving loads of scarring potentially?


Mirena tends to get used a lot to limit growth but obviously that isn't an option when ttc.


I hope you get some answers soon - let us know how you get on. Good luck & try to stay positive! C x

 

[poppin]

Hi Carrie, I'm so sorry to hear of your suspected diagnosis and that things are a bit rough at the moment, it's horrible to go through this, and the  information available is really confusing and scary isn't it.  From  everything I've read about adenomyosis, I agree with mc2002 that the  only way to get a definitive diagnosis is by doing histology (after a  hysterectomy), however, MRI appearances of adenomyosis are usually very typical (unlike on ultrasound where it looks very similar to  fibroids) so gynaecologists tend to be happy to diagnose on the basis  of an MRI.
 
  I had my adenomyosis diagnosed by MRI (also have grade IV endo diagnosed  by lap).  Mine is 7cm in the longest axis and is located on the posterior surface of my  uterus (the underneath) which is the most comon site.  I've personally not managed to achieve pregnancy  yet (ttc many years and 2 ICSI's) but have heard of plenty of others with the  same diagnosis who have, so please don't give up hope!
 
  One thing  that might be worth mentioning is that in the medical literature, there seems to  be greater success in patients who have  received a course of GnRH agonist (zoladex, prostap etc) prior to ivf  treatment - the idea is that the GnRH reduces the size/bulk of the  adenomyosis maximally prior to treatment, and also regresses any  associated endometriosis.  One study showed that in most (not all)  patients, 3-6 months of injections was sufficient to return the uterine  size to normal, and then the rates of ivf success were equal to those of  age-matched controls with the same degree of endometriosis only.  The  only caution would be that if a patient is not a brilliant responder,  their doctors may be concerned about shutting down the ovaries too much  prior to treatment - however, if you decide to go for the DE route next  time, it might be well worth considering a course of zoladex beforehand.  There's also evidence that women with endo+/-adeno have a higher rate of immune issues, but I see from your sig that you have been at ARGC for your last cycle so I'm sure you've investigated this thoroughly.

I have heard of the occasional case of people having adenomyosis removed surgically, mostly where it is concentrated into a discrete mass (adenomyoma) rather than being diffuse, but it's quite unusual as there is some evidence that it can increase the risk of uterine rupture etc in a subsequent pregnancy, due to having removed some of the normal uterine wall mixed in with the adenomyosis.

Take care and really hope you get some answers soon xx