Yet another clear lap, it has to be Adenomyosis...need help!!!

Hi

This is my second blog i have added and have had alot of good possitive feed back, i just dont know where to go now...

Yetserday i had my second laporoscopy, this came back clear, everything was clear and healthy, Adenomyosis was loosely mentioned in a brief consultaion with my Gyny consultant 2 months ago. I had mentioned this again to her yesterday prior to the lap. She doesnt think it can be Adeno as the pain i have is a constant and have apinfull intercourse (when i feel well enough to have it!) I am constantly tired and have heavy painfull periods.

In 2 weeks time i have a follow up appointment, i need to know now what to ask for. I am 100% convinced i have Adenonmyosis as they have proved i dont have Endo..

I have had an MRI scan but that came back clear, although it wasnt a colour doplor or inject me with any dye or anything like that. She has mentioned zolodex injections will that help?? what are they?

Please help i am at my wits end, i am so upset, in agony and my family life it crap. My children and husband are suffering, another part of my life my consultant doesnt seem to see that my illness is having such a massive impact on.

Thank you

Sarah

13 Replies

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  • Hi sarah im really sorry ur having a tough time :( zoladex is a 4 weekly injection that puts u in a temporary menopause but if they havent found any endo then im not sure its a good idea as it probably wont give u any answers, they say it it gives u pain relief then u have endo but it doesnt always give people pain relief endo or no endo, wear r u located? Have u seen a specialist? It may work in ur favour to actually get the help u need, feel free to message me if i can help u find a specialist i will :) xx

  • Hello Emmashead, thank you for your post, i think i am going to have to look to find a specialist in Adenomyosis rather than an Endo specialist, as it seems pretty clear i have not got that. I am in the East Mids, i have been traveling all over to my various appointments, so if i can find the right specailist then i dont mind traveling.

    Sarah xx

  • I really feel for you as the first lap I ever had was "clear" too. I was in a similar situation -constant pain, every second of every day.

    It was only when I had an emergency lap a few years later that they found a few 'spots' of endo - in the end I got referred to a specialist who did another lap and he gave me a DVD of it. Turns out I have quite a lot of endo but it's clear and yellow and the original doctors didn't pick it up (it didn't show up on an MRI either).

    Zoladex is a very strong drug which puts you into menopause while you're on it. Some people are helped a lot and others not so much; some people really struggle with the side effects and others manage okay. I wouldn't usually suggest ever agreeing to take zoladex unless you have a diagnosis but I would have thought that more surgery at this point would be pretty bad for you in terms of adhesions so maybe something like zoladex would be a good thing to try. You need to do lots of research into the effects and make your own decision.

    It's difficult to say whether you have adenomyosis - if you did, the likelihood is that it would be indicated on an ultrasound or MRI but then it depends on whether the person reading it knows what to look for, and the same goes for your laps. It could be that something like zoladex could help to determine whether it is endo related, but it can't be relied on as it doesn't help some people much.

    Whatever they tell you, avoid staying on it for longer than 6 months as this is all its licensed for - I stayed on it for 2 years and that was a very bad decision for me as I still have some side effect 3 years after finishing it.

  • Thank You Ladies so much for your advice. I feel like i am banging my head against a brick wall constantly. My gyny consultant did the Lap herself on Thursday, and althoiugh i am yet to have my follow up appointment the concensus was it was clear.

    She has mentioned Zolodex quite a few times and seems quite keen for me to try, but like Emmashead said if i dont have endo it wont do anything for me, would it do anything if i had Adenomyosis??

    I am totally convinced i have this i just want someone to find it and help me get my life back. This is my second oppionion so i feel i am running out of time!!

    Sarah xx

  • Hi, it might well not be adeno - my consultant who is one of the UK's leading endo consultants, told me that adeno cannot be confirmed visually, only suspected where there is a bulky uterus. It can only be confirmed after biopsy but by then, if it is not adeno, you have already had a hysterectomy! I had a bulky uterus.

    As you have pain with intercourse, which I also had, I would like to suggest that you could have endo recto/vaginally which might well not have shown up in a lap (not sure about that).

    I opted for total radical excision of the abdomen and my surgeon also went in from underneath vaginally to remove the recto/vaginal endo. I opted not to have a hysterectomy and I have found that, since this surgery, I no longer have any endo pain whatsoever (20 months now) so I am glad I did not go on the bulky uterus to have a hyster. Even if it was adeno, I still would have had pain had I not sorted out the recto/vaginal.

    I know it is very stressful and confusing but thought this might help.

    All best wishes

  • Hi Sarah. I don't have any advice really. But I'm just letting you know I'm in a similar position to you. My lap found a burst cyst. But my second found lumps, but cleared of endo. I'm too I'm constant pain. I went to a specialist and he has put me on prostap. If this helps then I'll have another lap in 9 months. I'm convinced I have endo even though they haven't found it yet. My consultant had to do an internal and he said he could feel something there. He said its hard to find endo sometimes even in laps. I think it's affecting my bowels/ rectom. I also feel like I'm going crazy. It's hard, but I hope they find the cause soon for you xx

  • My first lap found endo and my second one in May found nothing, I have been in pain often and have very painful intercourse before and since my first lap. They have tried to out me on everything any anything the only thing that works for me is staying on the pill without a break. I have been on it for a year now and I am starting to feel better. I am going to have a second opinion soon from a new hospital as the last hospital discharged me saying I has IBS. Thank you for sharing your story it has given me something to research ready to suggest to my new consultant.

    I wish you all of the best. Make sure that you take your husband with you to your appointment, I am useless without my partner. He can keep a clear head while i am an emotional wreak. He helped them see how much it was affecting me. I would seek a second opinion if you do not feel that they are taking you seriously. Get the doctor to write down key points for you about the medications they suggest, so you can research it yourself. My doctors have been very vague about side affects in the past.

    Good Luck x

  • I am so sorry you are having trouble at the moment, the only bit of advice I can really give is to keep trying, you can have more than one second opinion so if you need more take more.

    I have been on Zoladex it did not take the pain away but it did stop the periods which meant that I was not as worried about trying to second guess my hectic period schedule.

    If you need any advice or just need to talk message me.

    Kind Regards

    Emma-Jane

  • Hi, please feel free to visit the adenomyosisadviceassociatio... website for info and support x A problem shared is a problem halved x

    Take care,

    Danielle Wright

    Founder - Adenomyosis Advice Association

  • Thank you to all you wonderful ladies leaving me lots of messages and advice, i have follow up appointment with my consultant regarding the Lap i had 2 weeks ago will update you, and no doubt ask for more advice!!!!!!

    Sarah xx

  • BREAK THROUGH

    Had my follow up app on tuesday, consultant said that she finally thought that I had adenomyosis and am booked in to have full hysterectomy next month. Just goes to show if you do persist with these professionals you can eventually get answers!!

  • Hi Sarah,

    Hope everything goes well for you. I can also add that I have been in the same position with some laps showing everything to be clear even though I am in pain every day!! Don't ever give up as you should always listen to your body. After clear MRI's for me too, my endo reared its again and was seen at a subsequent laparoscopy. Keep going and you will get there x

  • hello my name is meko ihave read your article it looked similiar to me.would you please let me know is there any success or improve after surgery?

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