Diagnosis adenomyosis and Endometriosis


I had my first laparoscopy a week a 3 days ago. I'm still feeling quite sore but better than I was expecting to. I was diagnosed as having Endo which has been removed according to surgeon but also got told I have adenomyosis and was told my womb was very inflamed. The reason I had the lap was because I have had chronic pelvic pain for a year and a half. I'm feeling very scared as the surgeon said if the pain was still there she would recommend a hysterectomy. I have 3 children and don't wish to have anymore but from what I've read about a hysterectomy It's major surgery which causes a lot of side effects. Amy advice from anyone else in this situation.

Many thanks

10 Replies

  • Hi - how old are you as this would be the most relevant factor?

  • Hi. Thanks for your your reply I'm 32 so I consider myself young to have a hysterectomy. I have a family history of pco and endometriosis my mother had to have a hysterectomy at 30 due to heavy periods and chronic pain.

  • Hi there

    Sorry to hear you've been in so much pain, glad you're feeling a bit betterbit now though.

    I can't really give you any advice about a hysterectomy other than its a very common procedure so side effects are sure to be well researched and rectified.

    I was wondering whether you might be able to share your symptoms? I'm 24, haven't had children yet but hope to in the future. And have just been told I have adenomyosis and fibroid tumours in my uterus lining. The doctor said usually for women with children they'd suggest a hysterectomy but because of my age they want preserve my fertility so said they'd wait to see what they find in my lap (at the end of April) and go from there. They said they might not be able to cut out the tumours too. At the moment in taking cocodamol and tramadol to try and cope with the pain which changes but is constant all day and night.

    Sorry to go on so long, I've never seen anyone on here post about adenomyosis, I'd be so grateful if you could share your experience of it.

    Thank you so much


  • Hi.

    Thank you for your post it's so nice to hear that it isn't just me. I'm feeling very anxious about the whole thing. I have always had heavy periods before having my periods I was hospitalised due to the bleeding being so bad. The pain is the biggest problem for me it's everyday it never goes away have good and bad days but the bad days I feel so unwell that I can barely move. I'm taking the same painkillers as you and I feel they help with the pain but make me want to sleep. I have been off work for 9 months due to the pain. My surgeon said it's pretty much impossible to get to any of it my womb. Really am so pleased you posted as I feel so alone with what is going on.



  • Hi Jo, sorry it's taken me so long to reply.

    Your symptoms sound really similar to mine.

    I've always had really heavy painful periods I used to get dizzy and wobbly so they put my on the pill back to back for three months at a time which makes it a lot shorter and kind of patchy when they come. I'm July I started getting extremely bad pains in my pelvis sometimes i can't pin point where it's coming from and sometimes it feels like my ovaries or uterus is trying to escape! It's excruciating!

    i have a really active job and My boss is really understanding, she says she can see it's getting worse and has told me to take some time off to rest and stuff.

    I'm just worried that if they can't treat it they're not going to be able to do anything till I'm ready for a hysterectomy. So should me and my partner try for kids now instead of waiting a few years?

    I don't know if it will help but sometimes having a hot water bottle between my legs can be really soothing. I know what you mean about the tablets, when I first started taking them I thought my arms were floating!

    I spoke to my friend (a mum of a child I teach) she said she's had a hysterectomy, said it was really straight forward and the best decision she's made and she didn't have adeno so there must be even more benefits for you! :)

  • Hi. So sorry I completely forgot to reply to you.

    Your symptoms sound exactly like mine are I'm exhausted from it they are day and night so I don't get a rest from it. I am now 4 and a bit weeks post laparoscopy and I can honestly say the pain hasn't improved I had endometriosis removed but was told that they couldn't remove the Adenomyosis so I figure that it must the Adenomyosis that causes this pain. I have been off work for nearly a year now due to the pain so I completely understand where you are coming from. I really don't know exactly how much it would effect you getting pregnant I had my first child when I was 20 and I don't think I had it then or being pregnant kept it under control. I do exactly the same thing with the hot water bottle that made me laugh. Yes i agree if there isn't anything else they can do them the hysterectomy will be the last resort.

    I hope your laparoscopy goes well. When is it? Let me know how you get on .

    Jo xx

  • Hi, I was diagnosed with adenomyosis and endometriosis stage 4 which was implicating my bowel last year after many years of suffering, the latter years being awful as far as pain concerned. I made the decision to have a total hysterectomy/pelvic clearance as I am 47 finished my famiky long ago and no need for a uterus. I had my surgery 2 and a half weeks ago, it was major surgery and I did also need a bowel resection also but despite being sore I can already tell I feel so much better already, no pelvic and back pain that I had before. I am feeling confident that once I have recovered from the surgery I will feel fantastic.

  • Thank you for replying the biggest thing that stands out to me of what you have posted is that you hope to be pain free, which is all I want I'm so fed up of the constant pain and taking pain killers. That's amazing that you can feel that your pain is better, as soon as I was coming round I could still feel the pain was in the same area which makes me think that it's the inflammation of my womb causing the chronic pain. It's really lifted my mood to hear that you are feeling a difference.

    Good luck with your recovery please let me know how you are feeling.

    Thank you

  • Hi

    I'm 40 & had a total hysterectomy 8 weeks ago due to endo & adenomyosis. I have 1 child & we decided we didn't want any more so after many years (since my periods started) of suffering, I knew it was the right thing for me. I had keyhole surgery & was fit & healthy prior to surgery, other than this. The 1st 6 weeks was uncomfortable, but since then I have turned a corner & can hardly tell I've had anything done. I am self employed & work from home & was working part time after 10 days. My energy levels aren't back up to where they were & not started back at the gym yet, but I'm working full time & doing everything else. Just started HRT & can tell that is working as the hot flushes & night sweats are getting more bareable. I had injections 4 months prior to the op also, so been in full blown menopause since sept.

    I'm looking forward to a pain free future. My left ovary was stuck to bladder bowel & pelvic floor, uterus was stuck to bladder & bowel also. My pains were a dragging pulling feeling on left side & central stabbing pains, bloated & generally tender. Also used to have awful pains every time I needed a poo which was embarrassing as it would double me over!

    I hope that you find a solution that suits you but I can say I'm glad I had hysterectomy. if you decide to have it, try to be as fit as you can be prior to the op as I know this made a big difference in my recovery & take your time after. Don't expect anything, just trust how you feel & talk to anyone who has been through it to help understand what is normal. Any doubts go back to your gp as I had an infection after 2 weeks.

    Take care


  • Hi.

    Thank you for your reply. I'm really pleased to hear that it has been a positive thing for you as all I seem to hear if bad views over this and I know it's a big deal to have it done. The pain you have described is exactly how I would describe it I literally feel like someone has stabbed me and it gets worse and worse the closer I get to my period, sometimes so bad that I am literally limping. The pain is exhausting as it's day and night and it has impacted my family as I have 3 children and I feel like I'm always unwell. I really want to be pain free. Thank you for all your advice it has been really helpful.


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