adenomysosis found at lap: Ii had a... - Endometriosis UK

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adenomysosis found at lap

toty profile image
toty
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Ii had a diagonistic lap yesterday.dr briefly said he had found small patch of adenomysosis in muscle of womb, but no endo found. I have been sufffering for about 20 years with bleeding probs,pelvic pain extreme fatique bad rectum pain ibs symptoms painful lower back, list goes on.

when i asked nurse if dr checks out bowel and bladder in lap she said no, as i feel that is a area where endo could be,i was suprised to hear that he hadnt ,also would he check out POD area, again i dont no.

I have a appointment to c him in 2/3 months time.

can any one tell me about adenomysosis can it spread , could it be coming from bowel, could bowel be stuck to uterus would dr have checked this ?

thanks for any advice or experiences ,hope this makes sense, feeling rubbish and headachey today.

Toty xxxx

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toty
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Impatient profile image
Impatient

There is a great website for all things Adenomyosis related or Adeno for short.

adenomyosisadviceassociatio...

yes it can spread but only within the uterus muscle tissue - it is not like endo which can growon any tissue anywhereand spread from one type of tissue to another.

Adeno is strictly within muscle tissue.

That said it behaves just like endo. it bleeds every period - trapping the blood in the muscles causing pain and swelling bruises which eventually get reabsorbed by the body over a period of time, only to be triggered again next period.

Getting is diagnosed in a lap is a rare event. Lucky you, most cases it is deep inside and extremely difficut to diagnose.

TReatments are the same as for endo.

Surgery to remove the uterus will take away all the adeno... but only when you are finished with the uterus for baby making.

Prior to that - management of periods -reducing or preferably stopping them altogether should provide you with some relief until you are ready to lose the uterus.

You do not have to have a full hysterectomy including ovaries, just the uterus part of you.

Keep the ovaries as they will prevent the need for years of HRT.

You can have both endo and adeno - but it is more common to have one or the other.

It seems likely that you were on a period or just finished one at the time of the op for the adeno to be visible as lumps. That being the case if you did have endo too, it would also be active and very easy to spot. I am sure in spotting the adeno your surgeon would have been looking in the POD at that moment or the pouch to the front of the uterus. those are the usual locations for spotting adeno if it can be seen in a lap.

If you didn't get told youhad adhesions then no your bowel and uterus would not be stuck together.

Adeno doesn't cause adhesions in the pelvic region, though lots of things can not just endo.

janeingirona profile image
janeingirona

Hi. Your list of symptoms is the same as mine. The rectal pain confused everyone and I even had a laparoscopy and colonoscopy to rule out other causes.

In the end the only explanation is adenomyosis and fibroids. I have a very distinct focal adenomyoma which was diagnosed after MRI (previously thought to be a fibroid). It's not very big but it looks different on ultrasound to the fibroids as it looks just like a smooth round marble in 3D. Interestingly, it is in the middle of the fundus and I have a retroverted uterus so, in theory, it could be lying on my rectum.

It seems hard to believe this is causing so much pain but there it is! The gyne thinks there's likely to be more, diffuse adenomyosis in other areas of the iterus and possibly cervix as well (extremely sensitive on exam!). The rectal discomfort is very strange though as it feels like I want to push something out and it can radiate down to my anus! I have worried myself silly that endo, a prolapse or thrombosed hemarroids have been missed but am reassured there is nothing else there!!!!

You might want to have a laparoscopy to double check but just wanted to let you know that all the symptoms you havee are possible just from adeno! It's just that a thorough gynes will want to rule out other causes first. My gynae explained that it has to be a diagnosis of exclusion

toty profile image
toty in reply tojaneingirona

thanks for that reply, very interesting, what were you advised as treatment, and do you suffer from exhaustion and mood swings xx

janeingirona profile image
janeingirona in reply tototy

Hi Toty. I tried desopop pills (desogestren) but they caused continual bleeding and nausea. I have been offered hysterectomy but I'm not keen (too scared of complications!). The desopop also seemed to trigger ibs symptoms and am battling that - and rectal pain - ar the moment. My whole digestive tract is inflamed and I've been having homeopathic treatment for that but it's not helping much at all. At the moment this is my biggest problem. Homeopathic remedies seem to be working as I had a very normal period with minimalpain last mmonth. However, it's still too soon to tell.

I'm seeing a gastroenterologist tomorrow as my doctor is convinced there could still be a bowel problem missed at colonoscopy. The rectal pain/preasure is triggered by episodes of diarrhea! Does anyone else get this?

The gynae said mirena unlikely to help if I had a bad response to the Pop and has offered Esmya. Has anyone ever tried this for adeno?

janeingirona profile image
janeingirona in reply tototy

I forgot to mention I had terrible exhaustion but since starting the homeopathic remedies it's not so bad. Very lethargic, though and impatient but I think it's because of having to out up with not ever feeling right!!

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