I've been prescribed Amitriptyline for pe... - Endometriosis UK

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I've been prescribed Amitriptyline for pelvic pain. Has anyone had success with this medication?

Mindfullness4791 profile image

I've seen the consultant for Adenomyosis. He is referring me for an urgent mri to confirm it's Adenomyosis and listed for a hysterectomy, including my ovaries. It's an 18 month wait.So, I've been prescribed Amitriptyline and he wants me to trial Prostsap again. Which I'm nervous to do, as it was the add back hrt that caused my major flare.

Has anyone had success with Amitriptyline. I'm hoping it will help with the leg pains 🙏

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Mindfullness4791
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hollymolly123 profile image
hollymolly123

Take calcium supplements. That is standard with my Doc when on down regulation

Mindfullness4791 profile image
Mindfullness4791 in reply tohollymolly123

Thank you. What is down regulation please?

hannah11 profile image
hannah11

18 months is ludicrous, I am so sorry you are in that situation! Sending you so much love and strength while you wait. I

I was on Amitriptyline for years for another diagnosis and was surprised when it helped my endo/adeno pain. It def made things a lot easier to manage and was good for nerve pain. However, the massive downside for me was the drowsy side effect it caused. It never settled down for me but I am quite drug sensitive and may be an extreme case.

You can always try it for a little while and see how you get on. I hope it will bring you some relief.

Mindfullness4791 profile image
Mindfullness4791 in reply tohannah11

Thank you so much. I think you just get used to everything taking so long 🥲I will definitely give it a go, as will need something to help whilst waiting for surgery. I hope you are okay x

endowarrior12 profile image
endowarrior12

I’m on it just now, its main benefit for me is it helps me sleep which is great. It can take up to 6 weeks before it starts to work on pain and I do think it’s helped with nerve pain, not a huge difference on the pain front though x

Mindfullness4791 profile image
Mindfullness4791 in reply toendowarrior12

That's good it helps with the sleep. I get leg pain, so I'm hoping it will help with that 🙏 x

Greatescapes profile image
Greatescapes

Hello,

I just wanted to ask why the doctor is sending for an “urgent” MRI? I ask because I had an US which showed Adenomyosis, this was in Dec22. I was referred to a gynaecologist and in June23 she said I have a uterus the size of a grapefruit and large fibroids however the US scan back last Dec showed a small fibroid. She suggested I have a hysterectomy, just following an internal examination. I told her I would like to get another scan to confirm. She discharged me from her private surgery where I had been outsourced back to NHS for an MRI. I finally had an appointment at the hospital this week, just an initial consultation and the doctor said that my womb is enlarged but thinks the pain is from Adenomyosis. She has prescribed me zeletta a progesterone pill as she said it will reduce my periods and eventually the pain and at this stage is least invasive so best to try and manage the symptoms first. I’m a bit reluctant to start taking them as I’m worried if it makes any fibroids/endo worse, which she said it shouldn’t. I asked for an MRI but she said they will do an US first and then see if an MRI is necessary. That’s why I just wondered why your doctor is sending you fit an urgent MRI and should my doctor be doing the same? I’m 42, pain every month since 2017, managed with paracetamol and ibuprofen but recently replaced with naproxen.

Mindfullness4791 profile image
Mindfullness4791 in reply toGreatescapes

Hi there, to be honest I'm not sure why it was urgent. He just said he was sending me for an urgent mri. I've had a laparoscopy and 2 ultrasounds and they've all shown different things 🤷🏻‍♀️ I'm so confused with it all and part of me is now worrying. I've had the date through for next week.

Greatescapes profile image
Greatescapes in reply toMindfullness4791

Thank you for your reply. Try not to worry and I hope the scan goes okay. Best wishes xx

Mindfullness4791 profile image
Mindfullness4791 in reply toGreatescapes

Thank you 💕

Cailleach profile image
Cailleach

It is used to treat nerve pain. I am on nortryptyline which is similar and I find it helps. The leg pain in particular could well be nerve pain. The trick is to find the right time to take it in the evening so you are not too sleepy the following day. If I have to get up say at 8am I take it at 4-5 pm, but it is probably different for everyone.

Hope you find it helps you.

Mindfullness4791 profile image
Mindfullness4791 in reply toCailleach

Thank you. I haven't started it yet. For some reason I'm nervous 🥺 x

I tried it and found the side effects horrible. However, now I do use a low dose of a similar drug Nortriptyline ( I use half the lowest dose 5mg per night ) plus daily omega 3 high quality , pelvic physio ( try @corerecoverypt for guide) and have tailored my diet to reduce inflammation. I like Katie Edmonds book Heal Endo as a good general education and support in making tailored achievable changes to support yourself.

Mindfullness4791 profile image
Mindfullness4791 in reply toBloomingMarvellous

Thank you and for your suggestions 🙏 x

you’re welcome 🤗

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