Adenomyosis the same as endo? - Endometriosis UK

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Adenomyosis the same as endo?

Adeno2020 profile image

Hi

Some of you may have saw my posts so will know my background but quickly for this who haven’t. I was told I had endo for years and had a lap July this year to find no endo just adenomyosis and scar tissue on the bowel.

However recently I have been informed that adenomyosis IS in fact endometriosis but just means it’s in the womb. Is this correct ?

28 Replies

Hi Adeno2020, this is my understanding as well. In adenomyosis, the tissue grows in the womb as opposed to endometriosis where the tissue grows outside the womb.

Adeno2020 profile image
Adeno2020 in reply to Lagoon

Thankyou for the reply, Does that mean I’m time potentially endometriosis can occur? Meaning the adeno can progress to grow outside?

Lagoon profile image
Lagoon in reply to Adeno2020

My understanding is that although they are similar, they are different conditions. And they can happen together. However, having one doesn't necessarily mean that you will develop the other one. I have endometriosis, I was first diagnosed with this. More recently, I was told that I have adenomyosis too. I also think that there are slight different risk factors for developing each of these diseases. However, your question is valid, I don't think I have the knowledge to reply to this.

Adeno2020 profile image
Adeno2020 in reply to Lagoon

Thankyou for all your advise

Lynne_support profile image
Lynne_supportAdministrator

Hi Adeno2020.You might find our webinar on adenomyosis and endometriosis useful, you can find it here endometriosis-uk.org/adenom...

Best wishes

Lynne - Endometriosis UK

Thankyou

My understanding is that adeno and endo are the same but adeno affects the uterus and endo is anything outside the uterus.

Hope this helps

Adeno2020 profile image
Adeno2020 in reply to EndoSuckss

Thankyou

Adrnomyosis is when the endometrium infiltrates the muscular wall of the uterus. Endometriosis is the growth of endometrium outside of the uterus. They are 2 distinct diagnoses and you can have one without the other or both. Both produce pain with menses but I’d imagine from a prognostic point of view, endometriosis is much worse because it can cause your organs to stick together whereas adenomyosis is limited to the uterus.

Hope this helps. ❤️xx

Adeno2020 profile image
Adeno2020 in reply to Jmiller623

Thankyou xx

When I was diagnosed on my report it said “endometriosis of the myometrium” so I’m assuming it’s a form of it but then again from experience I feel adenomyosis will directly affect the quality of your womb especially when carrying a child because the womb itself the wall of the womb is affected only going by experience here not medically qualified to give answers but I think endo and adeno could be similar but produce slightly different outcomes with pregnancy maybe 🤷🏻‍♀️

Adeno2020 profile image
Adeno2020 in reply to Kayl101

Yes that makes sence Thankyou ! Luckily I have a little girl already because surgeon said next option is hysterectomy (I’m ok with this) but I’m only 25 so not sure if they’d still go ahead? Currently on coil and it’s not helping the slightest !! Been just over 3 months now

Kayl101 profile image
Kayl101 in reply to Adeno2020

Woah that’s very early to be offering a hysterectomy! Obviously it’s your decision at the end of the day but it’s a major surgery which is why they don’t tend to offer it straight away to younger women however I have noticed with mine it has gone worse each year with noticeable heavier prolonged bleeding, more clotted and more painful. I would like one more child so I’m putting off a hysterectomy but I am 33

Adeno2020 profile image
Adeno2020 in reply to Kayl101

It is early but I’m an ease with the option. I don’t really want anymore I’m content with my one. And when it flares up I’m begging them to take it out I’m just thinking they will put me on a years and years waiting list because of age haha. How does adeno affect getting pregnant and pregnancies?

Nikkky profile image
Nikkky in reply to Adeno2020

Hi, please don’t rush into having a hysterectomy as it won’t necessarily solve your problems. I did have a hysterectomy in the end but I still have pain as it can cause scar tissue to form. The doctors don’t explain everything properly and don’t tell you what happens after a hysterectomy. If you have your uterus removed and keep your ovaries you’ll go into menopause within 5 years (because the blood supply to the ovaries is affected). Obviously if you have your ovaries removed you’ll go straight into menopause. I know this sounds appealing when you’ve been suffering, as the thought of no more periods sounds bliss. However, menopause, particularly caused by surgery at a young age, can cause more severe menopause symptoms (mental and physical). You would need HRT but it’s not straight forward as getting the right dose and balance can be tricky. Also, hysterectomy can lead to prolapse of other organs. I would advise you to do lots of research before making a decision. Just to also mention that if you had scar tissue on your bowel that wouldn’t be caused by adenomyosis- but it is caused by endometriosis. You might not have had any active endometriosis at the time of your surgery (or it’s not been visible to the surgeon) but you can still have scar tissue there. Did your surgeon explain why you would have had scar tissue on your bowel? If they weren’t an endo specialist they might not have been as experienced.

A solution for the time being could be the mirena coil. I had a mirena coil and it did help a lot with the adenomyosis pain as it releases the progesterone right were it’s needed into the uterus. It worked far better than the contraceptive pill and depot injection. I did end up having a hysterectomy in the end (aged 40) and although I don’t regret it I wish I had known a lot more. If you have a full hysterectomy make sure you have a discussion beforehand about starting HRT straight away so everything is in place in advance. Otherwise you can end up feeling really ill. Good luck.

Adeno2020 profile image
Adeno2020 in reply to Nikkky

That message has helped so much mor Ethan you will probably ever understand. Drs and surgeons do not discuss things in depth. No my surgeon did not explain why there is scar tissue on bowel. So the bowel tissue could but endo but the endo not visible yet?

Nikkky profile image
Nikkky in reply to Adeno2020

Hi, rather than endo not being visible yet it would be that you either have scarring from previous endo lesions and they’ve left scar tissue on your bowel or the endo is still there and the surgeon just didn’t see it. It can be difficult to see, especially if it’s tiny, in a difficult place to see or deeper in the tissue rather than on the surface. Also, if you saw a general gynae consultant and not an endo specialist they’re not as experienced or knowledgeable. Maybe you should ask the consultant why there would be scar tissue on the bowel? The only things that cause scar tissue are endo (as it sticks things together) and previous surgery (where you can get scar tissue due to the healing process). One thing I’ve found over the years is that you can’t rely on them telling you everything. You need to do your homework and ask questions.

Adeno2020 profile image
Adeno2020 in reply to Nikkky

I see, to my knowledge I had a very advanced surgeon. Dr afifi but not sure how true that is. I was very confused about the bowel tissue myself. Even though the surgeon said he removed some of it (not all because was complex) I’m still having the same bowel symptoms! I’m due to speak to them on Friday so I will definitely ask about that! Thankyoj

Nikkky profile image
Nikkky in reply to Adeno2020

Yes, definitely ask him why you would have had scar tissue on your bowel and was it likely caused by endometriosis. If he says ‘no’ ask what else it could be caused by. If he says ‘yes’ ask if it’s possible that there is some endometriosis on your bowel as you are still having bowel symptoms. Hope you get some answers soon.

Adeno2020 profile image
Adeno2020 in reply to Nikkky

Thankyou

Yeah it’s the opposite to endometriosis really. Adenomyosis the endometrium grows in the muscle and makes the uterus large. I have adenomyosis

Adeno2020 profile image
Adeno2020 in reply to Hallj10

Does it affect getting pregnant or holding babies?

Hallj10 profile image
Hallj10 in reply to Adeno2020

Well I have had two miscarriages at 7 weeks so for me it seems to be holding. Do not appear to have any issues with implantation.

I have just finished 12 weeks Prostap 3 downregulation to try and help before I try again.

Adeno2020 profile image
Adeno2020 in reply to Hallj10

So sorry to hear that wish you all the best with your journey

Hallj10 profile image
Hallj10 in reply to Adeno2020

Thank you x

I am recovering from a full hysterectomy as I was diagnosed with adenomyosis.Just wondering if anyone has considered HRT.I am 55yrs of age .x

Hi all. I have some adenomyosis that was diagnosed at the time of my excision surgery for endometriosis. The surgery has helped. However, having a swollen lower abdomen and feeling heavy particularly in the evening and in line with the cycle, I presume is the adenomyosis. I wanted to know: does the adenomyosis stop with the menopause? or does it carry on? i.e. does it too produce its own oestrogen like endometriosis? x

Hi to my knowledge adeno is cured by menopause or hysterectomy because the condition only affects the womb. So with this not working you shouldn’t get symptoms from that. However I know some women for beg to differ but text book you shouldn’t have no symptoms after menopause but I can’t talk from realistic point of view as I haven’t gone through that yet sorry

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