Adenomyosis

Good evening ladies, 

I was wondering if anyone who has been diagnosed with Adenomyosis could tell me if they also had endometriosis and whether there was any distinction between their symptoms. I'm wondering if I may have both (only endometriosis has been diagnosed). The reason I ask is that I have very heavy periods and these returned as soon as my periods returned after my laparoscopy. There was no improvement in my periods even after thorough excision surgery. This leads me to wonder if I also have Adenomyosis. If anyone could offer any advice this would be much appreciated x

18 Replies

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  • Hi I had adeno and endo but can't be sure what symptoms come from what, do you get painfull periids and pain any other times

  • I have pain before and during my periods and also mid cycle (I have a 8x6x6cm endometrioma- waiting for an op to remove it). Like you say, it's hard to tell if my symptoms are caused by endo which I know I have or if I also have adeno. I had so little relief from a thorough excision of endo. My only relief was while I was on Prostap.

  • Are you under a bsge centre?

  • Yes, and they have been brilliant. I think I'll ask about adeno when I go in for my lap 

  • I have both, I've started to try differentiate between the two!

    I recently asked this question somewhere else and a lady replied that her Adenomyosis pain is her back pain, pain that radiates down her legs and contraction like pain during her period. 

    If a bulky uterus has ever been mentioned to you after your surgery, this is a sign of it.

    sorry I can't be much help, I'm still looking for answers, I'll let you know if I find anything xx

  • Yes I had both, and have had a hysterectomy last July for adeno , I had contraction type pain during period and back and leg pain, but I still get the leg pain and my pain in back is a lot easier, but still in bum cheeks, it's very hard to differentiate between the two as they are so similar, x

  • Hi, I've recently been diagnosed with both. My symptoms returned after my lap and dr said its hard to tell which or both could be causing the pain. I had an mri scan which showed signs of endo and ando and the lap confirmed it. Good luck xx

  • Thank you! Xx

  • I had both adenomyosis and severe endo which affected by bowel resulting in total hysterectomy and bowel resection. I agree it is difficult to distinguish between the pain if there is a difference but when I had a period my symptoms and pain were increased hugely. This is why I think I put up with my symptoms for so many years. I felt awful most of the time but these feelings became normal because periods were horrendous.......if that makes sense?

  • Hiya, sorry to know that. I have both and endo was diagnosed through lap and the other is by MRI. Hope this helps. 

  • I was diagnosed with stage 4 endo and adenonyosis. It's difficult to identify between the two, I started with a heavy dragging/bearing down pain and contraction like pain. I am 30 years old and had a hysterectomy last week as that was my only option! I'm so so happy I did! 

    Good luck in moving forward to the answers!! They are there just keep pushing for what you feel is the right thing to do xx 

  • Hi, I had endo excised in October and only about 10% of my pain eased, so I was sent for an MRI last month which showed no further endo but probable Adeno. They can't fully diagnose until after hysterectomy which I'm booked in for on 9th May. 

    Symptom wise - I feel like I'm over 9 months pregnant. Dull constant pains rather than sharp red hot poker pains I had with endo. Feel so heavy on the inside. Constant pressure on my bladder so I'm nearly incontinent, back-bum-leg ache, out of breath after climbing up the stairs, number 2s are urgent, and I'm now getting heartburn too. Huge sticky out tummy that's really hard (although mine does go squishy again for a few days before my period). All things I felt when I was very heavily pregnant. 

    My period pains are also lower nearer my pelvic bone rather than up near my ovaries, and yes I get contraction pains too like second stage labour when you get the urge to push! Oh and I feel like I waddle 😅

    Period wise, I'm not as heavy as some people, but my lining on MRI and hystoscopy looked normal, it's the walls themselves that look to be causing me trouble. I do still get big clots that sometimes won't flush away. 

    Finally I'd say from my experience my endo progressed over years, whereas Adeno got significantly worse rapidly over months.

    I hope that helps. I would suggest if you're still in pain after endo is removed you go back to your specialist and ask for an MRI to rule out everything else.

    Hx

  • You might find this useful. The symptoms of adeno and deep rectovaginal endo can be very similar.

    adenomyosisadviceassociatio...

  • Yes I had both my uterus was enlarged and that is how they diagnosed me with Adenomyosis

  • Hi, I had both endo and adenomyosis but was only diagnosed with this when I had my hysterectomy. The pathology showed I had adenomyosis. For many years I suffered painful periods and was diagnosed with endo after a lap in 2009 ( although I had symptoms from 2005) but I never had extremely heavy, flooding periods. These started after a lap in 2015. I had had enough by Nov and was starting to become anaemic so asked for a hysterectomy. I have private healthcare and don't live in the UK so had one 4 weeks later. I bled very heavily during surgery which I put down to the adeno and needed iron infusions for 3 days but it really was the best decision for me. 

  • Yes, studies and research (and my doc) say that those who have endo will always also have adeno. BUT those wh have adeno don't always have endo. 

  • Hi there, I have just recently been diagnosed with stage 4 Endometriosis with recto-vaginal and ureter involvement and extensive Adenomyosis, as well as some uterine / endometrial ?polyps. This was diagnosed through surgical excision of a nodule at the rear of my cervix followed by MRI and U/Sound. I have been taking a Prostap injection for 6 months now, and I also take add-back bio-identical hormones (Testogel, Estradiol and Crinone - Progesterone pessaries). I am pain-free for the first time in about 5 years. Yes, it is difficult so separate out what pain belongs to what condition because you're just one mass of pain. I know now that the immense dragging down feeling I had in my lower abdomen was the adenomyosis. I will need a hysterectomy and extensive excision surgery, possibly including a hopefully temporary small bowel re-section. The thiught of all of this surgery terrifies me but I can only take the Prostap for a max of 2 years and I'm only 45 so I imagine that as soon as I stop the Prostap I will be disabled by the Endo & Adeno & associated pain again within a vey short space of time, therefore... I need a long-term plan, and unfortuantely the only option is surgery. I am just undergoing some final investigations to support surgical planning - a female gynea attempted a rigid hysteroscopy last week which was very painful. she was able to get through my cervix but only a little way into my uterus due to obstruction. So, i am now waiting on a flexible hysteroscopy to see if she can get around the obstruction to have a good look around the uterus. I am annoyed that they didn't put me straight in for a flexible, given my already known level of disease state / pathology... & I don't really know what a flexible is going to show, other than what we already know.. that it all needs to come out! These doctors do like playing around with their scopes! I am going to ask for sedation for he flexible as now I know what to expect and given the level of discomfort with the rigid I am unwilling to go through that again feeling all tense and stressed. Please feel free to ask any questions. By the way... the add-back hormones are fabulous! :-)

  • I was reading about the difference.

    It sounds like basically the same thing only endo invades the uterus wall and inside while endo goes out and hits every other organ

    To tell the truth I don't believe there is a difference

    I mean endo can invade ovaries bowels bladder ovaries tubes

    The other invades inside uterine muscle walls and is said to happen to older women .

    REALLY ?

    I don't think there is enough difference to care where it goes

    I am of course open for correction as I don't have many answers

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