Endometriosis & Adenomyosis... Endo Removed but still struggling!

Hi hoping some of you lovely people could advise me on what to do next! My gynocaecolgist doesn't really fill me with confidence! I had months of very heavy periods, chronic pain & mood swings. I tried a variety of pills including tranexamic acid & mefanimic acid with no relief so decided on the depot pro Vera injection which had worked for me years before! Big mistake, my bleeding became constant, the pain worse. I felt sick, light headed & needed to wee constantly. I became very anxious & struggled to live any life! I finally got a scan which showed I had Adenomyosis which my G.P was very dismissive of! I requested a referral to a specialist who initially said it was just heavy periods & there would be no chance of endo being found! He suggested I continued to take codeine 5 times a day! I fought this saying that this was not healthy & went on to explain just how much of my life was being disrupted! He eventually agreed to a laporoscopy & hystocropy. Endometriosis was found & removed! (I'm not sure by which method). He said that there were also 2 fibroids attached to my slightly enlarged womb but they were too small to remove. I bled constantly for a couple of months after surgery & although not as intense was still in pain. The consultant said this was not normal so suggested hormone tablets. I did this for the recommended 3 months but had only 7-10 days a month without any pain. Bleeding was a lot less though. I am now trying to manage without anything but pain is becoming chronic again & bleeding very very heavy even though not constant. After my experience with both the injection & the hormone tablets I am very resistant to trying the coil! I am due to see my consultant again very soon & know he is going to suggest an ablation. Does anyone have any thoughts? Will an ablation manage pain as well as the bleeding? Are they successful generally? Are there any other options? I cannot carry on like this!! Please help me! Thanks in advance!

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  • Hi am really sorry to hear you are suffering from endo and Adenomyosis. I recently had a laparoscopy (6 weeks) I was told they found the most severe endometriosis on uterosacral ligaments and in the pouch of douglas, I was told this was a removed but that they couldn't remove the Adenomyosis in the uterus and the only cure would be to have a hysterectomy if I was still in pain which I am still at the moment. I had a similar experience to you I have currently been off work for severe pain for a year at the beginning of May. I was first told I had pulled a muscle then I was constipated and then IBS which I think I do have but most of the sever pain from endo and Adenomyosis. It has affected my life and life and my family's I have 3 children i am taking codeine and tramadol only a daily basis to get through the day. Have they not discusses a hysterectomy with you as that really is the only cure for Adenomyosis.

    Hope this helps you know you aren't alone

    Jo xx

  • Bless you it sounds like you've been through it, I have the same endo and adeno, endo twice now, has been lasered, have a mirena coil fitted for adeno but not had any improvement so am on pro stap at the moment then will discuss hysterectomy next.

    There is no 'cure' for adeno as it is endo growing in the muscle of the womb so it cannot be lasered it can only be treated to prolong having a hysterectomy

    I have a whole load of symptoms for adeno that affect my every day life and in pain all the time taking naproxen cocodomol every day and tramadol as and when.

    At the moment the prostap is very difficult as it puts you in a chemical menopause

    I'm just trying to ride the waves at the moment

    I was gutted to be in menopause at 32 but I'm lucky enough to have one child and I just want to get my life back

    Good luck!

    Don't forget, what doesn't work for someone else may well work for you and vice versa, we are all different :)

  • Hi

    Sorry to hear you are also going through this just when you think Endometriosis suck Adenomyosis joins the party.

    In also struggling to do anything at the minute has turned mine and my family's life upset down. I'm very blessed to have my 3 children. I am also only 32 and finding it hard to come to terms with.

    I have such bad reactions to synthetic hormones that I can't see prostap as a option for me and as my consultant said I'm delaying the inevitable, which I know if true.

    Xx

  • It sucks arse! ;)

    But hey what can we do! Just got to go with it, it's taken away so much already I'm not going to let it take away anything else it will not break me down, it's hard, I've become a recluse but just got to keep going

    I'm suffering with the prostap just now but reading other people's stories I'm hopeful it will get better! Consultant asked me how I feel about having children I said I want to be a fun happy mum to the one I have got, not smacked arse face grumpy mum in pain all the time! Looking back I'm lucky to have her, first had endo at 19

    How do you feel about having a hyster? Is it worth you giving prostap or zoladex a go? If they work you can have them for 6 months, I know what you mean about delaying the obvious but it's better to delay it for as long as poss as you have to start hrt 1 year after hyster and you have more chance of arthritis etc

    Just got to take it as it comes, I have moments where I feel so sad and guilty I'm affecting my husband and daughters lives with this but you just got to keep pulling yourself up, it must be really hard with 3 children to look after I struggle with the 1 at the moment

  • I'm the same I feel like I'm house bound most of the time because either I'm I'm pain or drowsy and feeling sick from painkillers.

    It had effected my kids as I'm always unwell and I feel bad for them as I'm not the mother I used to be I feel like a old woman, but I'm not!

    I feel angry that it has taken me so long to get answer to what is causing this awful pain.

    Probably not going with prostap as I think I would find it hard to cope as hormones make me feel so unwell, I had 2 mirena and tried different contraceptive pills and they made me a different person I hated how it made me feel and it wasn't doing anything to help with what it was meant to.

    It's so hard having my kids with this i can barely function and I feel such guilt for how everything has changed and how it makes me a horrible person to be around at times because of this pain.

    My partner said to me before I went in and got the diagnosis of adenomyosis and endo (we were only expecting endo if anything) he said he was looking forward to having his beautiful happy girl back, and that's when I realised how much it has effected him aswell because I am so different now, it had to be tough on them too.

    I am worried about the hysterectomy yes i don't think it's sunk in yet, but I think either way there are so many risks both ways I feel like I'm backed in to the corner.

    How long have you been on prostap for ?how long does it work for? What side effects are you getting from it if you don't in me asking xx

  • I totally understand how you feel I feel the same, I got choked up reading that! I feel so guilty, I'm moody, in pain, no fun, grumpy, can't hsve sex etc etc!

    It will be 3 weeks on thurs from my 1st injection, I ache all over I'm so tired I could cry I have a headache I'm bleeding again the cramps are really painful I'm forgetful and get confused I feel like an old lady it still hurts to go to the toilet , God there's loads lol I gave my consultant an a4 paper with them all wrote down on it last time :) got to have prostap once a month for 3 months then go back

    X

  • Sorry lovely I didn't mean to choke up, just wanted to tell you that I can hear you and I'm feeling the same x

    Oh the doesn't sound good are all these side effects common? Will it last the whole time you are having the injection ?

    The thing is we feel so guilty but it isn't something we asked or something we are in control of it's so frustrating.

    It so hard to know what to do, do you know what happens when you go back after this course?

    Sending you hugs it sounds like to are really struggling with this lovely xxx

  • Hysterectomy - removal of ovaries ablation will not work big decision xx

  • Got to give this 3 months then go back about hyster, these side effects seem to be pretty standard they just testing my ovaries to see if they will work after hyster so need to have this to see how that works

    Just got to give it time I'm sure it will settle

    Can you PM me your email? We chat on there if you like xx

  • There is a lovely lady called Lindle I think who often replies to posts on her. If you search her threads you'll see you points people to lists of specialists in excision, the only sure way to remove endo. I'm similar to you, severe endo and adeno, diagnosed after 5 hellish years of chronic fatigue that stopped my life with three small kids to deal with in its tracks. Good to have diagnosis but not easy to deal with uncertainty of treatment. I'm 3 months post excision and whilst I try to see positives not really improved. But surgeon (who is great and I trust) says it can get worse before getting better, symptons flare up. I see him in a month again to review options ie hysterectomy. The anxiety, hormones all over the place, loss of confidence etc has been as tough to deal with since op and hormone treatments as the pain etc. fatigue a bit better, to finish on a plus. Find a surgeon / consultant who is recommended and you can trust would be my main advice. Some are NHS and people manage to see them out of area still on NHS.

  • Thank you all for your comments! I am in the early stages & suffering really badly.... It sounds like you all have experienced so much more than me.. I only have myself to worry about too as have no children! I admire your strength in coping & I feel I should be grateful for it not being worse!! Hard to be when you in it though! All advice is really helpful, my consultant however is refusing a hysterectomy due to me being 37 with no children! An ablation does not sound like the answer and I too react badly to hormones! Lots to think about! I think after reading all your comments that a 2nd opinion from an endo specialist if I can find one local enough is my next step! May mean travelling to London but think it will be worth it! I will check out Lindles posts. I wish you all luck in your journeys in managing things!! Thank you!

  • Hi! I had a lap a couple of months ago and endo was excused. I was like you beforehand constantly bleeding at one point everyday for 9 months and after having the coil fitted it has settled down significantly. I was so ill because of the bleeding everyday so I feel for you but the coil has been a god send for the bleeding.

    It's been about 2 or 3 months since the op and the same pain has come back in my tummy hips and back. Sometimes the pressure in my hips and tugging in the back is so bad it makes me sick. When I told the surgeon he said it couldn't be endo because he had got rid of it all? Does this sound like adeno? I feel like the lap hasn't helped at all!

    Thanks ladies! X

  • I meant excised not excused! Haha

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