Adenomyosis lower back pain

[Castillo36]

Does anyone with adenomyosis experience chronic lower back pain? If so what do you do for the pain? Tried heating pads and regular pills like Tylenol ibuprofen etc don’t touch it 😭

[Alaine1 Administrator]

Hi,

I can identify with this, I’m sure you can relate when I mention the word debilitating. For me it wasn’t a simple case of taking pain medications as I did need to have the disease under control so this meant trying everything including the mirena twice. Unfortunately I reached the end of the road so was put on Zoladex which has helped the adenomyosis enormously and the resulting back and hip pain. Unfortunately no amount of pain medications helped my back pain. I wish I could be more positive and offer you a quick fix solution but unfortunately there isn’t one.

Saying that I do have some suggestions that I hope you will find helpful. Would you say your adenomyosis is under control or is the medication you are taking helping in some areas but not others? So getting your symptoms under control especially the pain is key and unfortunately that might mean trying treatments that you aren’t keen on trying such as the mirena. If you aren’t keen on that idea you can also try the implanon implant that goes in your arm. Again I’ve tried this myself and didn’t gain any benefit but many women with pelvic pain including adenomyosis do. I had to get my implanon fitted in a sexual health clinic at the hospital where my endometriosis specialist is as gynae clinics and GPs tend not to do these anymore. I personally would try one of these as they do them day in day out. I simply mentioned that my endometriosis specialist had recommended I try this for my pelvic pain and they were more than happy to help. You could try the same sentence, if you aren’t under a specialist you could mention that your GP has recommended it and if you wanted to say it’s also for contraception. I’m not sure how the clinics are operating during the pandemic but I wouldn’t let that put you off. I have also found that sexual health clinics are very sympathetic with pelvic pain and have a very good understanding of it. I’m not sure how they are with male related pelvic pain but I’d like to think they are equally as supportive.

So for me I definitely agree with the heating pads including the stick on ones - try different brands as some are better than others. I personally found the pound shop ones to be the best in terms of heat levels and length of time they remained hot. I would put one on before work at 8.30 am and the pad would still be just as hot when I got home at 7pm. Other options do include a TENS machine which again I found very helpful for the back pain but not pelvic pain. This one is a prescription medication so you would need your GP to prescribe it but again I’ve found it a huge help for not just the adenomyosis related pain but also the other types of back pain I suffer from. It’s called capsaicin cream which comes in two strengths your GP can prescribe and the third strength is hospital use only. It doesn’t work straight away but I use it 4 times a day every day especially on the lower back and find it really helps. It does burn when you first use it but stick with t as within a few days this doesn’t happen to the same extent. The only word of caution I would use is to thoroughly wash your hands as I’ve sometimes touched my face after thoroughly washing my hands twice to find my skin burning!

Other things to consider would be to look to see if the back pain is also related to general wear and tear in the spine, general stiffness of the spine and muscles as you might not be so active anymore because of the adenomyosis. I developed hip pain on both sides which has turned into a form of burstitis. They suspect it’s due to the pelvic pain. I would also look into physiotherapy which very often you can self refer for through primary care or your GP practice might have a physiotherapist in the surgery.

Other suggestions would be to use magnesium salts in a bath and the heat of the water can help with any of your muscles that have gone into spasm. It might also be worth a mention to your GP as they do occasionally prescribe diazepam for muscle spasms and insomnia but the most they’d usually give you is a weeks supply.

General stretching/yoga might help? It doesn’t have to be very fancy but something that helps with the mobility of the spine. The trouble with back pain of any type is that rest very rarely provides any benefit- the recommendation now is to keep moving which can feel impossible at times with pelvic pain.

I hope some of these ideas have been helpful and hopefully some other people with back and pelvic pain might have ideas on what has helped them. As always if any questions or suggestions just shout!

[Castillo36 in reply to Alaine1]

Thank you for all the info will look into a few of those until I can get my surgery I don’t want any more kids and the disease has spread to my ovary and tubes so it’s just time that isn’t on my side but again Thankyou so much for your input 🙂