I am 20 years old and I had my first op last year in October. I was diagnosed with endo and adhesions on the bowel and had to mirena coil inserted to help reduce it growing back and to help with the pain. It took quite a few months for the pain to get better but I still get some period like symptoms at the same time of the month, which causes pain but not as bad. However, suddenly over the last few months I have been having constant back pain and sciatica down the buttocks and legs and recently started to intense right shoulder pain. A lot of the back/leg/shoulder pain are spasms and throbbing, sometimes shooting pain. Is this related to endo? I have coughed up blood on three occasions so could that be related to the shoulder pain...Any one had a similair experience or have more knowledge on this? Thanks.
Intense back pain and sciatica..pain kill... - Endometriosis UK
Intense back pain and sciatica..pain killers daily
I have terrible lower back pain, shoulder pain, sciatic pain on a daily basis and have been told of is SPD as I became pregnant around the same time it started. This was nearly 3 years ago. Neither me or my Physio believe its SPD after 2.5 years of private physio but nhs will not investigate it. I feel that it is connected but no one else does. Waiting for lap to confirm endro so going to go private for Mri after that to check what is wrong with my pelvis.
The pelvis stabilises your body so if you pelvis is slightly out at one side it will cause problems with one side of you body. I.e back, leg, shoulder, spine. And if your pelvis is pushing on you sciatic nerve it will cause pain there too.
Caughing up blood is totally not related to that though. Id get seen at a&e for that asap. Common with stomach problem like ulcers.
Hope it isn't anything serious xx
Hi, thanks for your reply. That is strange that the Nhs won't look into further. I am sorry you are having difficulty with finding out what the problem is and a care plan way forward.
I didn't realise that could happen. How could the pelvis move out more on one side?
Thanks, blood hasn't happened since which is good.
I hope you get the help you need and your pain improves xx
Hi.
Really sorry that you are suffering from bad pain. I have recently been diagnosed with Endometriosis and Adenomyosis. I have had the pain that you are describing around the hip and shooting pains down the leg. I'm unsure about the shoulder pain and coughing up blood though, I think you should contact your Gp about that.
Hope this helps.
Jo x
Hi, thanks for your reply.
I am sorry that you have recently been diagnosed. I hope you are coping okay with it. I will do thanks. I have my first physio sess next week so will see what happens from there and I have a gynae specialist appointment at the hospital the week after, first one since the op. So hopefully will get a lot of answers to my questions and concerns.
Thanks. I hope things improve for you x
You are welcome hun.
Had a bad day today really struggling with the pain I just have days where it's too much to deal with I'm sure we all do.
I would be interested to hear how your physio goes if it helps your pain as I'm so desperate at the minute that I would try anything.
I hope you get some answers I was concerned when you said you coughed up blood I would raise that with them hun .
Hope you are having a good day xx
That's not good. I attempted swimming yesterday to hope it would help with the pain but for some reason straight after I have back pain, but the next morning it feels better. Sorry you haven't had a great day, it is really hard to cope with the pain on the worse days and people around you not understanding or upset that you are in pain etc.
I guess the strategies I use is from the op, having the mirena coil or birth control pills which stops periods in most cases and improves pain. And on bad days I have strong pain killers to get through xx
Yoga Is helping me but has been a bit painful at times but I feel like it helps my back and pelvis stretch and it relieves the pain.
Yes it's tough I have 3 kids and I feel sorry for them as I am struggling to function some days and people just don't understand how bad the pain is.
I've tried contraceptive pill and mirena they didn't help me I don't cope well with the synthetic hormones x
That's good. I found out that the left side of my pelvic is slightly moved, which made the right side feel sore and bruised and the left side create pain down my leg. Going to do exercises etc. I am not sure if it if related to endo as we don't know how it happened. But I want to push for a scan.
Yeah it is difficult, but you can only do your best. Always we have to remember that people that aren't in the situation don't understand because they are not us, but could also be frustrating for them as they love you and don't want you to be unwell.
Sorry the pill etc doesn't agree with you. There much for another option, maybe a few trial and area.xx
Hi I had this pain before Xmas in my lower bavk, top of buttock and accross my hip, the symptoms presented as sciatica and I had lower back MRI and it showed my sacroiliac joint was inflamed which can be for a number of reasons but one is can he caused by autoimmune illness...which obviously would link it to my endometriosis...I was under rheumatologist who checks you for arthritis but his recommendation is physio so I start that this week after a 6 wk wait!! Pilates really helps me also....
Thanks for your message. Ah okay interesting. I had my first physio sess last week. Apparently my left side of pelvic has moved slightly and created sciatica symptoms etc. I do want to push for a scan though to be sure as its effecting my mobility even on pain killers. Do you think a MRI would be best? They have provided some pilates classes which is good. I hope its never majoy and that over time it will heal.x
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