Sciatica/nerve pain when walking - what do I do next?

[Catinboots]

I am getting tired of this pain - and the pain does cause fatigue. To give context, I started getting sciatica in 2020. I thought it was due to less movement because of COVID. Over the couple of years, it’s got worse, in addition to elongated, irregular periods and brown spotting. I can’t walk without being in pain in my back and down my leg. I’ve tried to speak to my GP and physiotherapist with other possible causes and furthur investigation (MRI) but they completely refused the ideas. It’s honestly starting to get me down (it is refreshing to hear that others are having similar experiences though) I’m scared to keep going back because a nurse insinuated that I have health anxiety and keeps just giving me pain medication . The whole experience has been super challenging. Can anyone recommend what I do next? I cannot afford private healthcare. I am also currently changing GP so hopefully that helps. Any other ideas would be really appreciated!

[CArolGrace]

Change your gp! And a nurse has no right to make assumptions about your health so make a complaint to the surgery about her for starters- before you find yourself a new doctor. Good luck

[CArolGrace]

Also start documenting all of your symptoms this is vital on building up a picture to the gp when u see them - they don’t specialise in endo usually but if you are an informed patient who has a knowledge of your body and what’s happening and know something is not right, the gp will help you keep pushing

[Purple_Badgers]

Hi! Sorry to hear you’ve been left in pain & fobbed off with the usual “it’s health anxiety/it’s all in your head” stuff. It really shouldn’t be so hard to be taken seriously… argh!!!!First off, you should have at least been referred to a gynaecologist for the changes in your periods. It sounds really unusual and annoying and should be investigated.

Secondly, I had a sudden sciatica problem which I thought may have been due to having incorrect posture at my desk or sitting at my desk too long. I could barely walk and also had a strange tingling/numbness at the top of my inner thigh. This happened just before I had a major crisis with my bowel endo, and I firmly believe it was related. (Back and leg pains had always been part of my period symptoms, along with hideous constipation.)

Thirdly, I agree that having a new GP could really make a difference, and I hope they will listen and treat you with a bit more respect. Keep on sticking up for yourself until you get seen by the right people and have everything thoroughly investigated. Good luck xxxx

[Catinboots]

Thank you so much for the comments and sharing your experiences, I really appreciate it. I will keep pushing and keep a record of everything that is happening. Thank you again xxx

[CryBaby91]

Hi Catinboots

I'm sorry to hear you're being fobbed off, sadly I can empathise as I've spent the last 12 years begging to be taken seriously by my doctors. It's only been the last year where a decent gyne has actually listened and agreed to do a lap, but I fear my endo has been left to run riot for so long now that it will be bad news when they finally do diagnose me. Anyway, I'll stop rambling lol.

Are you using a period tracking app by any chance? I use Glow, it has really fantastic insights and health advice, it's flagged up endometriosis for me more times than I can count! It has Charts you can print out and take to your gp, fill symptom tracker, everything. You can then see if certain factors trigger the pain (like period, ovulating, sex etc.), I actually have the premium version because I find it that helpful! I can link it to my Samsung watch and I even get warnings when I'm about to have my period. Its a whole life app really, I add my food, weight, sleep, stress and sex info on there too. It really helps build up a picture of what triggers flares outside of hormonal changes!

Pain wise, have you tried a TENS machine? It's not a cure by any means, and certainly won't take all the pain away, but it's a nice distraction and takes the edge away. Also, heat is my best friend. I have 3 types of hot water bottle, a long one for my legs, a small one for my belly and then a big wide one for emergency use. I also have a plug in heated pad, which is permanently on now lol I lay on that and it's fab for my back pain! Also reduces how frequently I have to do a hot water bottle lol.

Please do keep pushing your GP. They have no right at all to say that you are just making it all up! And saying you have health anxiety is essentially saying you're being dramatic. Calmly remind them that NICE guidelines recommend that any person suffering the symptoms you are suffering should be referred to gynaecology services. Print them out of you have to 😉 Tell them that pain is not normal, and it's not imagined. Ask them point blank for a referral to the nearest NHS endometriosis specialist, tell them your symptoms suggest endometriosis and you would like to investigate. If they say no then remind them that as an NHS patient you have a protected right to NHS care and if they don't do the referral you will be exercising those rights and making a full complaint.

People see force as a negative thing when it's women, but it's not. You are allowed to take control of your own health, you deserve to be listened to and for them to leave you in pain is cruel and inhumane. They are 100% in the wrong! Hopefully a new GP will be more helpful, but if they're not please don't forget that it is their JOB to refer people on, so push them to do it properly.

All the best 😘

[Catinboots in reply to CryBaby91]

Hey CryBaby91, Thank you for your reply and sharing your experiences. I hope your lap goes well. I use Flo which is very similar but does not flag up potential problems but gives you advice to speak to a doctor etc. I have tried a TENS machine in the past but it wasn't great - maybe I need a new one? Thank you so much for your reply - I am signed up to my new GP so hopefully all will go well and I can get a referral. Here's to trying to take control of our health. <3

[ArtyPal]

Hey lovely, I'm so sorry you're feeling these pains as well and I'm also incredibly sorry that you're getting fobbed off and invalidated so frequently. I want to just reassure you that your suffering is valid and an experience that I share so painfully with you

I'm on the waitlist for my diagnostic laparoscopy and the gynae handling me is the first person to help me with the sciatic and leg pains and he put me on amitriptyline which is an antidepressant that is used to treat chronic pain. I started on 10mg in October and am at 30mg now (thinking about increasing to 40 but waiting to see if going abroad next week helps as my joints are horrific in this cold wet Scottish weather!) But overall I do think this medication has helped so if it's something you wish to look into I'd definitely recommend it, but it does make you super sleepy at the beginning and any time you increase so take them no later than 6pm!

Some other things that help me:

- I have a neck hot water bottle buy the U curve of it actually fits the thighs so well, my leg pain is usually worse on my left leg so I tend to rest with it there

- hot water bottle belt (I got mines on Amazon and it looks like a koala hehe) helps as you can walk around with it

- deep sea lavender bath salts and preferably in a bath as hot as you can take it for as long as you can take it

I also know a lot of people who swear by CBD oil capsules and drops, but I'm yet to personally try them but it's worth looking into

I can't say when it gets better or worse for me, I have super irregular cycles, but I had about a month straight where I was literally limping! It's such a frustrating and tiring pain isn't it?

For me I used to walk to and from my art studio (20+ minutes each way) but had to reduce to a bus in the morning and sometimes walking home, it may not be feasible for you depending on how active your life etc is but it's totally okay to reduce movement, sometimes I even get a bus for just a couple stops to save my pain and energy

Sending lots of hugs x

[ArtyPal in reply to ArtyPal]

Oh also take note of your pains!! I haven't taken then to appointments yet but in my phone I've started taking note of every pain, the severity, the type (ache, stabbing, numbing) so that when the time comes, the medical people will have to listen

It's okay to demand things, it's okay to speak up and it's absolutely okay to "fire" GPs - you've got this!

[Catinboots in reply to ArtyPal]

Aww, thank you so much. This means a lot. Thank you for sharing some things that help you and validating my experience. I'm eager to try some of the things you suggested. Hopefully, the new GP will be a slightly better experience but I feel more equipped to advocate for myself at an appointment. I've started a document with all my symptoms, pain etc. I hope you enjoy your trip abroad and it isn't too long until your diagnostic laparoscopy. Sending hugs back to you x

[anonyz]

You must push for that MRI referral! I had very similar pain a year ago and an MRI showed it to a herniated disc (L4/L5, C3/C4 & C5/C6) - for which I have been receiving Osteo treatment alongside daily physio and courses of nerve blockers and pain killers when it flares up (50mgPregabalin x3 and 500Naproxen x2 a day). After two really bad flare ups, lasting months with debilitating pain I am now set on a new routine of pilates and swimming, which i've been told will strengthen my core and make another flare up less likely.

Similar to another comment I have found what really helps to reduce the pain is baths with a epsom salts, taking cbd oil and sleeping with a pillow between my legs and using pillows under my knees to elevate them when laying down.

I'm curious how this might relate to endometriosis? I have only recently been diagnosed with it this week, after pushing my GP for a Gyne appointment to check on my adenomyosis, which i have had for 3 years. I have been feeling exceptionally bloated and the pain and heavy bleeding around my periods getting worse each time. A TV scan showed endo is also present.

I discussed my Herniated disc with the consultants at the women's health unit at the hospital and no one mentioned any correlation to the sciatic nerve and endo. I even asked when they were scanning if they could see if there was any pressure from my uterus being put on the sciatic nerve and they said they would not be able to tell.

[Catinboots in reply to anonyz]

Hey, the new GP is definitely taking me more seriously. I am due to have a blood test and TV scan/ultrasound so we will see how that goes! Thank you for your suggestions. In the meantime, I have also been doing pilates and swimming which seems to be helping a lot with the back/leg pain. I will really know when I am due to start my period as this is when the pain seems to get a lot worse. I have researched a little around endo and back/sciatic nerve pain. Depending on where endo is present, tissue has been reported to press on the sciatic nerve, causing pressure and sciatica symptoms too. However, I don't think a lot of people are specialised in this or it may be really rare.

Anyway, I really hope the low impact exercise does help you and do let me know, if you wish. x

[anonyz in reply to Catinboots]

Good luck with your appointment! And thanks for elaborating on the correlation, something I'll be looking in further!

[RoxyMom]

I usually boil a bag of Black Cohosh tea in water and drink it twice a day until the symptoms go away. I repeat when they return.