Thigh pain

[EndoQu]

Hi 😊

I have recently developed leg pain which i presume could be related to endo, I have chronic pain and stuff as well. It travels like from my bum, down my thighs, through my knees and to my feet. It's like a deep aching 🙄. Any tips to help with this? Think I have heard that magnesium helps? Does anyone take any medication for it? Thank you 😊

[Greenblue55]

Hi EndoQu, the path of pain you describe pretty much matches the route of the sciatic nerve, so it could be sciatica, which can feel like anything from a sharp stabbing/electric shock like feeling to a deep dull ache. There's no harm in trying supplements as long as they don't interact with any other medication you're on, but they may take a while to do much. I've suffered with sciatica on and off for years and find in general, simple stretches from pilates and yoga help relax your lower back, bum and thigh muscles, and a heat pack and ibuprofen help most flare ups. Mine was initially caused by endo around the nerve, which (the endo) was removed in 2017, but it still requires maintenance to minimise discomfort. An osteopath might also be helpful to explore, but if you're concerned and haven't already, always speak to your doctor, especially if you notice a pattern of it being worse around your period. You say it started recently, so might resolve in a few weeks by itself with rest.

[EndoQu in reply to Greenblue55]

Thank you for the reply, lots of helpful information 😊

[Endo_Jaded]

I second the other response, but I will add I suffer horribly. I’m now on Gabapetin for the nerve pain after suffering for 4 years (building up intensity).

Whilst, sciatica is a high probability, with having endometriosis the probability is also likely too be an endometrioma pressing, or adhesions tugging or Endo itself on the sciatic area.

I now use a cane from Neo Walk it’s super Jazzy and not at all sad a depressing such as the hospital version. I don’t use it daily. But only on my worst days.

My advice is to assume with Endo it’s linked to the Endo until proven otherwise. It could very well be sciatica as my consultant informed me. But endometriosis is invasive and causes a world of problems. My last endometrioma prior to rupture had pressed or caused my left leg to be in such pain with nerves but it also caused it too start swelling with an Oedema.. when my rupture happened the pain stayed but the swelling stopped happening. I’ve another endometrioma growing and now the pain is worse and I’ve noticed a little puffiness around my knee.

I advise speaking directly to a consultant the GP doesn’t seem au fait with this causation to be fair.

Failing this, request a scan of the area and hope it presents something that helps explain the reasoning.

Endometriosis is the worst disease imaginable for being as invasive as cancer can be without being cancer.. my consultant and my friend with breast cancer both said it acts like a cancer without being one and it hit me how right they are.

I’m sorry you’ve had to suffer this too.

I’d assume you are stage 4 with this issue then?

Don’t expect pain relief to help, my GP pretty much knows I’ll take the least amount for the pain and allows me to play around and guide my relief to some degree.

I’m on a Reletrans Patch (weekly pain patch) and codeine for break through pain… however the leg pain was as I mentioned getting worse and I called my GP up and explained I didn’t want to increase the codeine or how many I took, but I also didn’t want to increase my patch unless necessary (essentially weekly morphine). We settled on trying Gabapetin and to be honest i was apprehensive but it’s helping the pain more than pain relief did

–which is too be expected really– you could explore this possibility if you wanted?

I’m here if you want any support, questions or anything at all. Drop me a DM if you feel better even. M

Sending all my endo support your way.

[EndoQu in reply to Endo_Jaded]

Thank you for the information and reply. I haven't been diagnosed and am currently fighting to be put on the waiting list for a lap. My chronic pain has got worse over the past year and now these leg pain issues have also come to say hi 🙄

[EndoQu in reply to EndoQu]

So sorry you are going through all of that 🥺

[EndoQu in reply to EndoQu]

I highly suspect it is endo btw

[Endo_Jaded in reply to EndoQu]

Hi EndoQu,

Where are you located?

If it’s in Mainland UK, or NI I would extremely highly recommend you part with around £400 for a private pelvic MRI to assess if deep endo can be seen.. I’ve been left, ignored and at risk of losing bowel and I get a yearly private MRI ago build my case on the poor treatment under NHS for Endo and the destruction it does internally; while being ignored.

In NI Kingsbridge do MRI £400 per area so Pelvic is £400 and then lower back is £400 as well I believe. I’ll be getting lower back also this year as I’ve been in significant pain and barely able to walk like a healthy 35 year old.

If you haven’t been diagnosed yet, please get private healthcare asap.. they won’t cover you if you’ve been diagnosed! This could help get you treated threefold! I recommend Vitality.. but I also use Benenden as I can’t be treated for Endo by vitality sadly.

Also, write and complain, to your medical board area and demand too be seen, treated and provided with diagnostic and outline your symptoms, impact on life and why you require to be seen!!

I try to help everyone avoid my long wait but also… avoid my inability to be treated privately!

DM if I can help with anything else x

[GoodbyeMalcolm]

Hello. Thigh pain has always been part of my endo. I currently manage my endo with hormones - mirena coil/combined pill. It doesn’t stop the leg pain completely but definitely makes it less severe. I haven’t really found that painkillers make much of a difference.

I’ve found using a roller can help relieve the pain. Something like this: club-cleo.com/innova-rolax-...

There’s some more useful info on this site: medicalnewstoday.com/articl...

Good luck!

[EndoQu in reply to GoodbyeMalcolm]

Thank you for the reply, currently in the combined pill and it is doing nothing 🙄

[GoodbyeMalcolm in reply to EndoQu]

Sorry to hear that. Keep pushing for more options. Getting a referral to a specialist endo clinic might help (but I know how difficult that is.)

[EndoQu in reply to GoodbyeMalcolm]

I saw a consultant a few months back who said he won't refer me to endo specialist yet cuz I haven't tried the pill. I literally cried in the appointment, I was so close, debating whether to see a private consultant. I can't afford a private lap at the mo otherwise I would 😢

[GoodbyeMalcolm in reply to EndoQu]

I’m so sorry. I totally understand your frustration. I’ve been exactly where you are. I was only diagnosed when they found a 10cm endometrioma through ultrasound. Since having it removed the Mirena coil has kept my symptoms manageable. I’m now on the combined pill because during Covid I couldn’t get a new coil. It’s not as effective so I’m keen to get back on the coil as soon as I can. Sometimes it can take a while to try different hormonal options to find the one that works for you. And sometimes none of them work. It’s extremely frustrating. Have they at least told you how long before they will review it again?

Hang in there. x

[EndoQu in reply to GoodbyeMalcolm]

Says 3 months check up on my medical records :). I think he will recommend the coil next, but I'm pretty sure I have vaginismus, so that won't happen anytime soon 😂🙄

[EndoQu in reply to GoodbyeMalcolm]

Thank you for the links!

[BloomingMarvellous]

Yup Sciatica and other nasty pain , second all the above. Endo is likely the culprit but it doesn’t necessarily need to be round the nerve itself as tightening of pelvic tissue can cause misalignment and pull causing pain. Think of the pelvic region as being a bit like a tent with unequal tension on the guy ropes. I find making sure I drink enough water , not straining the pelvic floor , Omega 3 , good multi mineral vit, and working on balancing the pelvic area ( maybe take a peek at @corerecoverypt ) helpful. My knee pain is aggravated by the bowel adhesions to my sides because of the way the attachments of the leg muscles also run to the lower diaphragm . I’d stopped breathing effectively because of the adhesions and it pulled things askew. Now it’s a long road to get things functioning better.

[EndoQu in reply to BloomingMarvellous]

Thank you for the reply, so sorry you are going through all of that 🥺

[USgalwthendo]

Thigh pain has always been a part of my endo. Deep ache. I use a heating pad, tens machine and ibuprofen. It only happens during my cycle so that would be my question to you: is your pain cycle related or is it more or less all the time?

[EndoQu in reply to USgalwthendo]

I think it is worse on my period but it happens throughout the whole month

[EndoQu in reply to EndoQu]

Maybe like every other day ish?