Adenomyosis back pain

[Romano1234]

Hi all, does anyone with adenomyosis have bad lower pain and pelvis pain at the back? My skin also feels bruised to the touch around that area although there is no bruise to see.

[Alaine1 Administrator]

Hi,

Yes I’ve suffered this with adenomyosis and it was as debilitating as the pelvic pain. I refer to it as the belt of pain to the endometriosis specialist I’m under for both adenomyosis and endometriosis. The back pain felt like someone was trying to break my back. Fortunately I’ve been kept on long term Zoladex which is off licence as I’ve completely failed all other medical treatments for both pain and bleeding. A lot of specialists won’t do that with Zoladex and those that do will only do so if you really have tried everything and used for 6 months. Some will allow less time but it’s very unusual. I did have a big flare up late last year when I had to come off the Zoladex for 3 months as it has become less effective and the severe pain and bleeding had returned. The only thing I’ve found that helps especially at work is to wear a stick on heat patch on my stomach and place one on my back. I get the cheap ones from the pound shop as they get really hot. Not as hot as a hot water bottle but still good enough. I’ve never really found medications to help the back pain. One thing I would caution is be careful with the thinking your back pain is all adenomyosis. I’ve got degeneration in my back and also have sjogrens which causes a lot of pain bone - so effectively 3 separate conditions affecting the back. The degeneration in the back there isn’t much I can do but the sjogrens is being treated and that’s helped massively but the adenomyosis back pain I’ve found is very difficult to treat. I can tell the difference in the different types of back pain.

Are you being treated for the adenomyosis?

[Romano1234 in reply to Alaine1]

My back pain is like tooth ache. Felt in the bottom vertebrae and where the SI joints are on the pelvis. The skin on those areas is painful to touch like I have bruising under the skin however I’ve had MRI and only thing it brings up is L4 and L5 discs are dehydrated and thinning. Although the hospital say this is ok and shouldn’t be causing the pain I’m in? I’ve had loads of scans and one showed up that I have a uterus that looks bulky, like adenomyosis is present although had nothing else to confirm this. Was going to have a laparoscopy but decided that they’d do the back checks for any issues there beforehand. I didn’t think womb pain would give back ache like I’m describing. I have little to no front pelvis pain.

[Alaine1 Administrator in reply to Romano1234]

My back pain from the adenomyosis feels like bone pain rather than musculoskeletal but the pain goes all the way round. Back pain with both endometriosis and adenomyosis are both well known to cause back pain. I also have bursitis in both hips which causes a lot of pain and does affect the back. Sometimes it’s not always possible to identify the cause of pain. It’s possible to have adenomyosis and in fact endometriosis but have no pain. In this case it’s often an accidental finding during a scan for another symptom which in your case is back pain. One word of caution I would say is be careful it doesn’t get attributed to adenomyosis which sounds as though you have no symptoms so are asymptomatic. Even if no cause for your back pain is found they can still treat it which would usually start with physiotherapy and pain killers if necessary. Have they mentioned about treatment for the back pain?

[Romano1234 in reply to Alaine1]

Yes, I’ve had mri, x Ray and can’t find where the pain is coming from so now I’m on naproxen and gabapentin for the pain. But I’m wanting to know what’s causing it and if I do exercise am I’m making things worse and they can’t tell me. I did suffer with very heavy periods clots the lot but I’m on the pill for that so don’t really have a period now so that’s ok so the only symptom I have is the back ache, back hip ache near the SI joints and sciatica. It does feel like bone pain though and I kind of think why would my skin/muscle on the back and the back of the hips hurt if it was being caused by adenomyosis? Surley I would be able to feel that pain on the surface? Or would I? Xx

[Alaine1 Administrator in reply to Romano1234]

Not necessarily as pain is very difficult to locate for many people. A good example is pelvic pain. Many people even with endometriosis say it’s in my pelvis. They are unable to say where about abs point to it. With adenomyosis it’s a little easier to be specific as most people will say it’s coming from my uterus. Back pain is often very difficult to locate the source unless you have severe degenerative disease or osteoporosis in the spine or another disorder. Back pain is a very well known symptom of adenomyosis. Another explanation is that the adenomyosis has caused the back to feel/be a little out of alignment - not massively but enough to generate pain even though you are on the pill now. It could be the result of poor posture - sitting slightly twisted on a chair at hip level. The best thing would be to have physiotherapy on the back to see if it helps. It won’t feel better straight away but should gradually get better if you were to stick with the exercises

[Romano1234 in reply to Alaine1]

Ok cool thanks. I. Have a retroverted uterus so think that might be sitting on the sciatic nerve also causing issues xx how are you now? You going for a hysterectomy? Xx

[Alaine1 Administrator in reply to Romano1234]

No not having a hysterectomy as I had a brief break from the Zoladex and it’s continued to work well for controlling the pain and heavy + prolonged bleeding from the adenomyosis. Also the hysterectomy wouldn’t cure the endometriosis or help with my interstitial cystitis. I still get some pelvic pain from the adenomyosis but we aren’t sure if there is another issue which might be gastrointestinal related. Unfortunately the zoladex itself doesn’t help with the fatigue from both the endometriosis and adenomyosis but at least it works well for controlling the biggest issue. I also have a lot of other chronic health problems on top so it all has an impact. But I’m grateful for where I am in my journey.

[Romano1234 in reply to Alaine1]

Is the Zoladex good then? Xx

[Alaine1 Administrator in reply to Romano1234]

I’ve found it very good but it’s very individual like most things. Before they’d consider a trial of 3 months you would have had to try other things and failed them. Long term use is rarely allowed as most women find a treatment that works for them or it’s given short term before using an alternative treatment. It’s good a lot of side effects including bone thinning. I need to have DEXA scans yearly as I have osteopenia but we aren’t sure if the Zoladex is responsible. You wouldn’t be offered it for your back pain though even if it was adenomyosis related. It’s only for chronic pelvic pain and a few other gynae related conditions and is used sometimes in breast cancer. Some women especially those that are older and have had their family opt for a hysterectomy which would only take the uterus as that cures the disease. Keeping the ovaries stops you going into menopause

[Romano1234 in reply to Alaine1]

Yes, if it is the womb causing the pain I’d consider a hysterectomy.

[Alaine1 Administrator in reply to Romano1234]

Just be careful that it is the womb causing pain. There are too many women who go for a hysterectomy who gain no benefit from it only to find out the pain was coming from a musculoskeletal problem in the pelvis that had previously been overlooked or another cause such as the bladder that wasn’t looked into first. Obviously if you haven’t got any significant bladder symptoms that would suggest it wasn’t the problem so please don’t get worried- it’s the first example I could think of at 5 in the morning! Even though I have mentioned about the ovaries being kept with a hysterectomy for adenomyosis sometimes the ovaries go into shock after the surgery. In a lot of patients this is only temporary but in others this is permanent so it’s just something to be aware of. Also taking the ovaries unless there is a genuine reason to remove them is now known to significantly shorten a women’s life - on average it has been shown to be 10 years. It isn’t clear why this is and maybe a combination of things but oestrogen is known to be needed for cardiovascular health, bone health etc. More research is needed especially as oestrogen is so important to many aspects of our lives, but it does explain why on average cardiovascular disease generally doesn’t start until the menopause/after menopause in women. So if you do go for a hysterectomy and the doctor mentions removal of the ovaries please question the reason why and on the surgical consent form have it written and signed by the doctor that they are only to be removed if obviously diseased. That way you have covered all bases so to speak. Obviously if you have certain cancers in your family eg breast and ovarian cancer you would need to discuss the risk of keeping your ovaries as not all breast and ovarian cancers are a result of BRAC genes. But I’m guessing this would already be known to both your GP and/or gynaecologist. Please don’t be alarmed be any of what I’ve written but it’s here to guide you so you can have an honest with your medical team. As always any questions just shout and I will do my best to answer them 😊

[Romano1234 in reply to Alaine1]

Thanks. Can adenomyosis cause that dull toothache back pain I’m getting do you think?

[Alaine1 Administrator in reply to Romano1234]

Possibly but usually back pain related to adenomyosis goes hand in hand with pelvic pain. But there are always cases that don’t go with the general trend. So you may experience back pain and never get pelvic pain. You could ask a gynaecologist to trial you on some medications but like you have mentioned it does seem to be a back issue. Have you been referred to a rheumatologist or pain specialist to check from sacroiliac joint dysfunction. I myself was diagnosed with it by one pain specialist but the rheumatologist argued against it so it was never followed up. It’s always been something I’ve meant to chase up. It does in the following page mention dull ache type pain. You wouldn’t have to have all of the symptoms but might be worth mentioning to GP. It might be that the scan that has picked up adenomyosis is a red herring. Let me know what you think?

painmanagement.org.uk/blog/...

[Lily1986]

Yes I get this too and always thought it was because of stage 4 bowel endometriosis but now I’m thinking it could well be my adenomyosis.If I’m stood or walking at slightly wrong angle for too long it like stiffens up and spasms and have to go lie down to release it. The rest of the time it’s throbbing almost constantly.

I find tiger balm helps a bit but can stain clothing.

Best wishes to you.xxx

[Romano1234 in reply to Lily1986]

Yes I have similar issues. Mine is painful to touch the skin at the bottom of the back as if it’s bruised. So it could well be nerve related.

[Brandi16]

Sounds like you also have some nerve pain in that area.

[Romano1234]

Mines like toothache then towards the end of the day the lower back is stiff with limited movement. They’ve scanned me for SI joints on x day but showed up normal. I have no idea if it’s the adenomyosis as they’ve only diagnosed that by a belly scan and said it looks like that but not 100% sure.