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  1. #1
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    Default Dealing with Adenomyosis pain

    Help!!! I've recently been diagnosed with adenomyosis on top of stage 4 endo. I used to get a rectal pain only a few days into my period, but now it goes on for about 2 weeks! I've been taking a combination of nurofen/ponstan with panadeine extra. Alone they're not effective. The surgeon has told me the only way to get rid of the pain is a hysterectomy or to get pregnant. Well a hysterectomy is out of the question as we've been TTC for 3 years now and getting pregnant feels like a pipe dream. Has anyone else had similar pain with adenomyosis and how did you deal with it?? I'm going crazy! The pain is unbareable!!!!! 😭😭😭

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    Sorry your going through this. I was diagnosed not long ago too and told nothing we can do about it until no more kids. We are ttc too and it makes me wonder if this is stopping us getting a bfp too. I had my endo laseref off so its been a bit better since then. I think endo causes the pain too. Otherwise I just take panadol and hot water bottles ob my uterus area when its really bad.. What causes it do u kno? I cant find any info on why I now have adeno..So frustrating and annoying isnt it!!

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    Hi @kim85 I have had two laps now to remove the endo. Apparently I don't have much left now. I don't actually get much abdominal classic sort of period pain, it's just the rectal pain and let me tell you, I would much much rather abominal cramping than what I have now. It's most likely the adenomyosis that's causing this pain. The way the surgeon sort of explained it is that the endometrial cells from the uterus are growing into the muscle lining of the uterus (I think) and so it must be growing outwards towards the rectum/vaginal area. Hence the pain down there. Apparently adenomyosis is very common amongst women with endo and also for women who have had c sections. My surgeon (who is an endo specialist leading researcher/professor in this field) says there is still a lot of mystery around what causes and how adenomyosis works. Sigh. So only thing he suggested I do is continue taking pain meds. I just don't want to take 100's of pain killers each month I know it doesn't feel like it, but you're lucky you can deal with the pain with a hot water bottle and panadol. I know a lot of women with adenomyosis and endo can still get pregnant, but if you're struggling now to get a bfp and there are no other reasons, then this may very well be the reason sadly. I know it is in my case

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    Thanks for explaining it more to me.. It does suck they dont know too much about it yet though.. Do u get pain when bd? Thats when it really hurts mw if its too deep.. Its like an internal bruise that gets poked each time!
    I hope it doesn't add to our ttc worries.. I thought once we got rid of the endo I would be pregnant.. Silly me!! Hope u can get some more answers on pain relief.. There may be a natural tablet somewhere that may help at health food store or something..

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    Hi ladies, I was diagnosed with Adenomyosis a few months ago. My Gyn gave me a script for celebrex and this seemed to help well. I also found not sitting for too long is also helpful. As far as pregnancy goes, It certainly is possible even against all odds, although there seems to be limited research on actually being pregnant and carrying to term with Adenomyosis. All the best, it really does suck. I bled for 3 months in a row before anyone would take me seriously.

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    Subbing to pop back in later as I think this may be what I have ...

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    @kim85 unfortunately yes I do have pain with bd, without getting into too much detail though, there are some positions which are more painful and others that are not at all occasionally I take a painkiller beforehand, which kinda takes the fun and spontaneity out of it. Some of my pain is musculoskeletal and I've been getting accupuncture for it, which helps relieve some of it. I've been advised to see a pelvic floor physio, so we'll see how that goes too.
    I was like you - I thought I'd be pregnant by now once I had my first lap 1.5years since then and not even a late period...

    Hi @Beljane wow I honestly thought I was the only one with this sort of pain. Sitting for long periods makes the pain worse for me too, plus walking for long periods! Ugh! I'm sorry you had horrible bleeding for months before anyone took you seriously. Thats what I hate about the medical system when it comes to women's issues. A lot of it gets brushed off and put onto the scale of "normal". Since I was a teen I always thought it was normal to have crippling pain with periods. It is comforting to know many women can still have babies with endo or adeno, but yeah it is a scary thought that with adeno there is a higher risk of miscarriage and not carrying to term question: do you use Celebrex only when you have pain? Do you find it any different to other NSAIDs such as ponstan or even other ibuprofen like nurofen?

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    @bel2466 I really hope it's not what you have! You're very lucky through that you've been able to complete your family. But I can only imagine how much more difficult it would be to deal with the pain and have the responsibility of looking after a family at the same time I'm tearing up at the thought... I really really hope it's not what you're facing here. All the best xoxo

  9. The Following User Says Thank You to Mink For This Useful Post:

    bel2466  (06-09-2015)

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    Thanks for your kind words Mink and hi to Beljane and Kim85! I'm having very heavy periods, internal uterus and rectal pain very often but I don't have endo. I have had lots of abdo surgery: first ectopic op, ruptured ectopic op, c section 1, c section 2, second tube removal op , ivf etc etc
    I am so petrified of any more hospital time or surgeries I really don't want to have any more. I feel for you ladies as you are facing this before kids which must be tough xxx
    How were you guys diagnosed? Ultrasound? Laparoscopy? xx
    Last edited by bel2466; 06-09-2015 at 10:34.

  11. #10
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    I'm so sorry that you're going through this @bel2466 your symptoms sound a lot like mine although I'm glad you don't have endo, you may be able to have medication that's typically prescribed for endo (which is usually contraceptive).
    I'm not quite sure how they diagnose adeno. I read somewhere that you need an MRI or a biopsy, I think. I'm assuming since my surgeon has seen my uterus and has had a lot of experience with this, was able to diagnose it based on symptoms post surgery and just by looking. He mentioned that I have an abnormal uterus which was very stuck... Mostly to the bowel. And I guess it makes sense since I've had all my endo removed and now have this rectal pain, and not much other endo symptoms anymore.

    Good luck! I hope you get some answers and avoid any more surgery. Sounds like you've been through so so much! I dread the thought of more surgery myself...


 

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