I was diagnosed a little while ago with suspected endo through MRI. Have since developed new pains (these pains have lasted nearly a year). The pain is in my back, top of my bum, hip and down my thigh to my knee. I’m constantly in pain everyday. I spoke to my GP and she wants to refer me for someone to look at my back as she think it could be the “large nerve that runs from your back down to your leg” causing this pain. After doing a Google search I have seen all these symptoms are similar to sciatic endometriosis. Has anyone experienced this? I will try and make an appt for a specialist to try and investigate this for me. But just feeling quite worried.
Thank you xxx
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May246
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Hi there, I would ask your GP to refer you to a gynecologist about this. The new pains you're getting could be sciatica, however, they are reasonably common symptoms of endo. I have pains in those areas most days with my endo and have always had them with my period. Sciatic endo is of course a possibility, although it's apparently rare, I have wondered if I have it as cyclical sciatica was my first symptom of endo. Your GP is probably not aware that these pains can be related to endo and therefore is sending you down the "bad back" route rather than gynae. If you are getting daily pain you really should be getting a proper diagnosis of your endo to find out it's severity and which areas are involved x
Hi, thank you so much for your reply. I will definitely book in to see my specialist about this as I haven’t seen him in a while. My GP told me she knows a lot about endometriosis and specialised in a few courses or something along those lines and is the one that helped me get the diagnosis, so I’m lucky to have such a good GP as I know a lot of people get sent away! Thank you, but you are so right in saying these are common symptoms anyway and she may be sending me down the wrong route. I think i am definitely just worrying and it could not be that. Hope you are ok! Xx
Hi, I’m sorry you are going through this!! It’s awful. I have all of these symptoms right now and have been stuck in the house for around 3 weeks. It has stopped me from driving, going to school and I’ve fell way behind in my a levels. One thing that has helped me a lot is walking. What I mean by walking is literally the smallest walk ever I barely make it to the bottom of my road because of the pain. However it does help with the electric pains in my back going into my bum and hips. Sitting and lying sometimes makes it worse. Don’t push yourself too hard just take it at your own time and pace. What has also helped me is sleeping with a small pillow under the side that is sore when I’m sleeping it helps a lot as it takes the pressure off ur hips. I hope you get some answers soon!!
Hiya, thank you so so much for your reply! I’m so sorry you are going through this too! I’m so sorry you’ve fallen behind in your A levels too, I hope your teachers are understanding! I’m in my first year of uni and am finding it hard with all this pain. I’m so glad you’ve said this too because laying and sitting makes mine worse too! Especially sitting and driving my hips become agony. I will try the pillow! Thank you again & I hope you manage to cope as well as you can and good luck with your a levels! Xx
I couldnt walk ,sit up or drive for a year with this. i saw 9 different back specialaist who all gave me completely different diagnosis. One sent for a bone scan of my whole body and there were two huge cysts on my ovaries (he didn't bother to mention this I just saw it on the report I had requested). I went to th egynae and he said very bad stage 4 endo, the endo can run along your sciatic nerve and along you ligaments between back and pelvis. Plus I had a frozen pelives so my oragns wewre all stuck to each other. I still have pain after the surgery but it is far less bad and I can do everything I could before. The gynae said it is very common.Please get your GP to refer you ASAP.
Hello, I am in a similar boat I think. My GP has referred me for physio as he said he thinks I have sciatica and dismissed that it was anything related to my periods. He said if physio doesn’t help then he would consider an MRI so when I do finally get a physio appointment I am going to stress I only have sciatica like symptoms 2 weeks out of the month and it’s predictable. It’s such hard work sometimes. This is the only symptoms I have so I can see why the GP may think it’s not period related but it really is to me! X
Go to your GP and tell him/her he has to refer you. If you leave it the pain will be there all the time not just two weeks out of the month. You can find an article to shoe him like this that might help...
It's so mad that doctors don't take women seriously. Also if you have any family memebers with endo like a sister etc this also hugely increases the liklehood it will be endo as there is a very strong hereditary link (7 times more likely I think for immediate familt members).So say if it runs in the family too, if he/she keep fobbing you off you could either ask for a second opinion or change your GP. It might also be worth contacting a private gynae directly they don't always need a referral, but to start with really push to get referred. Good luck.x
I get sciatica pains, I’m on a low dosage of Amitriptyline and have just upped it by another 10mg. I find it dulls the pain slightly. Walking most definitely helps when it’s at its worse. Lots of stretches too along with pain meds. Hope you get help soon x
Hiya, thanks so much for your reply. I’m so sorry to hear your going through that! I’m not currently on any pain meds.. I think this may be the next step. Thank you xx
I think this is where I would struggle as well because I am trying to avoid taking any meds at all costs but I think it is heading this way. I was prescribed amitriptyline ages ago but just never took them! Xxx
Hi May and everyone else! I have endometriosis and a twisted pelvis after a car accident. I can't take NSAIDS as they upset my tummy so I see an osteopath for my sciatic pain and he is AMAZING!! The treatment really helps and he gives me "homework" to do as well to get some relief in between visits. I don't know if you're able to look into this but it has made a huge difference to my pain. I also have bowel and bladder issues with endometriosis and have found that where it is really bad on my left side which is the twisted side it has given me some relief from it. His advice is to ice the affected area for at least 20 minutes and I would do this as often as I needed to. Hope this helps and sending ❤️
Hiya, thank you for your reply! oh my gosh so sorry to hear this!! I will definitely look into this! I have started to have bladder issues and have recently informed my GP because I didn’t know if it was linked to the endo. Thank you, sending ❤️ back xx
I had a cystoscopy and urethra dilatation and it made a huge difference to my bladder symptoms. I also took some probiotics with cranberry extract in and that seemed to really reduce my symptoms too. They were Boots ones x
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Thank you, but you are so right in saying these are common symptoms anyway and she may be sending me down the wrong route. I think i am definitely just worrying and it could not be that. Hope you are ok! Xx 
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