So down today 🥺 Why does everything take so long and nothing helps

[Mindfullness4791]

I'm in my late 40s and have a provisional diagnosis of Adenomyosis

I don't think I've ever felt so low, as today. I'm waiting for urgent mri scan results, that I had 5 weeks ago. I am in crippling pain. My bowels are all over the place and everyday I have rectal bleeding. I can't tolerate stronger pain relief, as it causes constipation, which I already have and it makes the pain worse.I've got 18 months to wait for the hysterectomy and it seems like a life time away. I just feel so trapped by it all and can't see a way out of this awful situation. Nothing helps. The Prostap was hideous. Morphine wore out after an hour.

Sorry, but I just needed to let it out.

Sending love to all of those going through hard times xxx

[Moon_maiden]

We all need a good rant at times, the forum is great for that.

Ask the hospital for a copy of the results from the MRI, GP can see them as well sometimes. I always ask for a copy.

I can’t believe you have to wait so long for the hysterectomy that’s just ridiculous. I’d imagine you’ve Endo as well as adeno. Ask GP to write to the consultant to make it more urgent, they may take notice.

Hope you feel better soon, or at least a little bit. Nefopam is a non opiate painkiller but not sure about constipation.

[Mindfullness4791 in reply to Moon_maiden]

Thank you so much 🙏💕I am so anxious with the pain 🥺 As the consultant requested them, he sees them first and will write to me. I've emailed his secretary today. I need the mri to help with expediting. They have messed the whole diagnosis from the first scan. Going from one diagnosis to the other. I had a laparoscopy and no Endo was found but I did have a globular uterus, which they said was almost definitely Adenomyosis.

I will look into Neofopam.

I hope you are okay xxx

[Moon_maiden in reply to Mindfullness4791]

I hope you get the results soon. It’s often the way that they don’t diagnose properly at the beginning. I find that ridiculous really when you know the symptoms, they underplay things too much.

Look into other pain killers, taking paracetamol regularly can help. 🤞 you get pain under control.

[Mindfullness4791 in reply to Moon_maiden]

Thank you so much. I've doubted myself so many times but this pain, unfortunately, is very real! X

[BloomingMarvellous in reply to Mindfullness4791]

Problem with paracetamol is it reduces the levels of Omega 3 in the body so ultimately weirdly that depleting will cause more pain long term. You could ask for Nortriptyline as a low dose taken daily ( night time )which my GP put me on ( their lowest dose is 10mg but I take 5mg and get the benefit !) in common with doing the Curable App which he gave me a free six week trial on NHS . Make sure you have high quality daily Omega 3 which helps with the nerve pain and us endo folk need higher levels of full stop. Make sure your diet isn’t absolutely loaded with omega 6&9 ‘s making any deficit in the omega 3 more pronounced.

[Mindfullness4791 in reply to BloomingMarvellous]

Thank you for your advice, it means a lot🙏The problem is it does reduce the pain a bit and the Naproxen helps with the nerve pain.I just trialled Amitriptyline, which was awful, as I got insomnia. I asked for Noritriptyline but my gp has put me back on Mirtazapine.

I'm going to start taking flax oil seed supplements. I can't take fish, as I'm a veggie. I'm also low in iron/folate so will look at upping those too.

I'll have a look at the curable app too x

[BloomingMarvellous in reply to Mindfullness4791]

Amitriptyline is ghastly agreed. Well known for nasty side effects. You can get an Omega 3 based on algae which has the EPA/DHA balance but you’ll have to take more of it to reach the dose required. Veggie - other sources are ALA which if your body is converting well enough gives only 15% EPA/DHA which is what the body desperately needs in dealing with endo. I used to be veggie but after 25 yrs took the decision it wasn’t appropriate to keep on making my body sick because I wasn’t getting what I actually needed. Instead I ensure my choices are as informed as possible 💕

[Mindfullness4791 in reply to BloomingMarvellous]

Thank you for the useful information 🥰. It is very helpful. I will have a look into the veggie options tooXx

[1Poppy1234]

It's so unfair isn't it the pain and the lack of pain relief that targets it. I use fibregel to help with the constipation bouts I get. I use a heat pad that fastens around my waist that helps a bit. Also I take tumeric for inflammation. I go to a holistic chiropractor and she helps with the spasm in my stomach but not the pain but it makes it easier. Hope you find something to help. Have you tried decapeptyl jabs?

[Mindfullness4791 in reply to 1Poppy1234]

Thank you. I use Laxido as Fybergel also aggrevates it. I love my heat pads too 😊 Thanks for the recommendations of a Chiropractor. I'm glad it is helping you. Are they the same as Prostap, as I've been on them before x

[merlin-mimi]

I’m so sorry to hear that you are going through all of this! Waiting is honestly one of the hardest parts. A good rant always helps though 😊 I would also get in contact with the GP and see if they can do anything to speed it up and see if they can offer you anything to help regulate your bowels. It’s such a vicious cycle with pain meds and constipation. They may be able to prescribe you laxido or movicol to help regulate your bowels whilst you take stronger pain meds?

Down days are very normal with this condition (though that doesn’t make it any easier). I have tried time to talk to help with my down days and they offered me some cbt to help combat it. They offered me online cbt within a month until I can see someone in person. I wondered if this may help you in the meantime?

I really hope that you get the help soon! Unbelievable that you have to wait to long! Sending you positive thoughts ❤️

[Mindfullness4791 in reply to merlin-mimi]

Thank you so much. It's just so slow and disjointed 🥺The problem with laxatives is sometimes they give me cramps too. Rock and a hard place comes to mind but I do take Laxido, which helps a bit. It seems that when I'm flaring I get really constipated and the pain relief doesn't help.

I will look into cbt again. I have generalised anxiety disorder, so have had it in the past and it did help.

I'm seriously considering re-mortgaging the house. It's just so much money though.

Take care x

[endo_the_stigma]

This is exactly how I've woken up feeling this morning, you are not alone lovely and my messages are always open if you need to talk💛💛

[Mindfullness4791]

I'm so sorry you are going through it. It is such a lonely place to be 🥺Likewise, happy to chat anytime 💕. I almost feel like a fraud too as I haven't got a 100% diagnosis, which adds to the feelings xx

[Mel5523]

Hi, so sorry you are going through this, I have recently been diagnosed with adenomyosis but have no idea what the next steps are, constipation is constant and the only pain relief I get is with tramadol, which makes the constipation worse, and round a vicious circle i go! Can I ask why you are booked in for a hysterectomy?

[Mindfullness4791 in reply to Mel5523]

Thank you and I'm sorry you are too 🥺You are so right about the circle. That's why I'm so frustrated as you help one problem and start another. Nothing I have tried has stopped the pain.

A hysterectomy cures it and I'm in my late 40s. They are going to remove my ovaries too.

[Mel5523 in reply to Mindfullness4791]

Thank you so much for your kind reply, did they give you the option of a hysterectomy or did you have to ask?

[Mindfullness4791 in reply to Mel5523]

You're welcome. At my last consultation he said I'm listed you for a hysterectomy. I really don't want to have one but know I have to 🥺