Endo related back pain?: Hi, I’m going to... - Endometriosis UK

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Endo related back pain?

Endowarrior9
Endowarrior9

Hi,

I’m going to get straight to the point... Sadly I experienced a miscarriage at the end of May this year. Prior to that I begun experiencing the endo pain as I had stopped the Medroxyprogesterone so we could try for a family. For the last 3 years I have struggled with lower back pain/leg pain that is pretty much as disabling as my stomach pain. But since the miscarriage it’s become unbearable to the point where I’ve been taking prescribed morphine to manage my pain. I have seen a spinal consultant who has suggested that the muscles have tightened because of all the pain I’ve been in recently and am now being referred to pain management. I’m also seeing a specialist physio who helps me with the pelvic side of things but my reason for coming on here (as well as a bit of a rant to others in my position) is to find out if others experience referred back/leg pain this bad? I sometimes feel like I’m being silly but there are days that turn into weeks where I simply cannot manage the pain. Your advice/comments would be much appreciated!

21 Replies
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Hidden
Hidden

I've suffered with this for many years. The back and leg pain is just as bad. Basically, I have pain the whole of my right side dragging right into my leg. I believe it's to do with nerves and how they run and also sometimes endometriosis is active on nerves themselves. It really is horrendous. I actually have a mobility scooter and also use a wheeled walker. Endometriosis is a really vile disease.

Please do see someone who is a specialist in endometriosis, not just a gynaecologist because you really do need help with this.

Good luck!

Hidden
Hidden

I'm so sorry I meant to say that I was very sorry to hear your sad history of miscarriage.

Also I really don't think the back and leg pain has anything to do with muscles. It sounds so much like my pain. I also have endometriosis affecting my diaphragm and chest.

I do hope that you get the help you need.

Endowarrior9
Endowarrior9
in reply to Hidden

Thank you so much for your advice. It really has been horrendous recently but I’m trying to be positive, as you will know that’s easier said than done!

Sorry to hear about your situation, I really feel for you. I also experience back and leg pain, thankfully not as severe as you mention. But quiet dull, constant pain in conjunction with the horrendous stomach pain. I was offered Prostap (I’m 43) and found it to be marvellous. I’ve been on it for one year and have been pain (and period) free. I found a fantastic consultant who specialises in endo and she is brilliant. I hope you find some help. Best of luck

I'm so sorry to hear what you have been through :(

I have had hip\groin area pain and also lower back and going down my leg since march some days it's bearable some days I might aswell cut my leg off it feels. With that pain you are not alone!

I was diagnosed 3 days ago after months of MRI scans on my hip and lower back and after much pushing my doctors 5 months later they decided to send me to a gynaecologist.

Can I ask do you find the morphine tablets help? I'm currently on amatripiline and naproxen x

Endowarrior9
Endowarrior9
in reply to Piggyb

Hey,

I’m glad you finally got the referral you needed.

I do find that the morphine works (oramorph) but I only have this when absolutely necessary, unfortunately that’s been daily recently but it’s not something the Drs are willing to prescribe. I am currently off work on long term sick because of my pain and taking this type of pain relief is definitely not a long term solution.

But it may be useful to ask them about Gabapentin/Tramadol/Coedine. Gabapentin is a controlled drug and you do have to take it for several weeks for it to work.

I will say though, this is just what I know from my own experience over the past 7 years.

:)

Piggyb
Piggyb
in reply to Endowarrior9

Thank you for the information :)

In sorry you are suffering with so much pain and I'm sorry for your loss. I too had stage 4 endo, and was diagnosed 12 years ago now after years of suffering. At the beginning of this year I had a flair up. Sex was too painful, going to the toilet was painful sitting and walking and standing. Basically if I didn't move I could get comfy but that was it. This got worse over time, I was going back and forth to the drs. At its worse I couldn't walk, the pain was unbearable. So endo can affect your back and legs. I was on tramadol, oramorph, codine, naproxen and paracetamol for about 4 months. I've now had a hysterectomy, I'm 38 and have had my family. I'd wished that the drs had given me this back in 2016 when i was going through heavy periods, migraines and pain but they said I was too young, it would have saved a lot of suffering if they had listened to me. If you can find an endo specialist. I hope you receive the right treatment soon xx

Thank you Riajane, it’s such a frustrating condition!

Hi. Your situation mirrors my own. I had an ectopic pregnancy in 2010 which ruptured my fallopian tube. Had pain ever since. 3 laparoscopies, physio, Zoladex. Nothings worked. Now on Morphine and Tramadol. Those only work if you take them regularly. Today is my first day without leg pain. I agree, the pain is hard to describe and makes your legs so weak you can’t walk. It’s like the worst form of sciatic pain. I think we’ve both suffered so much that our bodies are now hyper sensitive to pain and the brain’s pain receptors can’t switch off.

I wish I had answer for you, but I’m in limbo waiting for an MRI and ultrasound before a treatment plan is decided on. I think I’ll be having a hysterectomy. So I’ll never have a baby naturally. Adoption is the only option left for me. But I have to get my life back on track before I go down that road.

Please keep in touch. It would be good to hear how you’re doing xxx

Hidden
Hidden
in reply to Crispy69

I really felt I had to reply and just say that a hysterectomy isn't a cure for endometriosis. I had a hysterectomy over 15 years ago and I still suffer terribly. Removing all endometriosis is the only way and even then symptoms often come back. I would hate you to go through all that without being aware of this. Perhaps you are and want to go ahead anyway.

Good luck!

Crispy69
Crispy69
in reply to Hidden

Thanks for the info. I’ve been warned that a hysterectomy is not a foolproof solution but I’ve resigned myself to it now and living in hope

Hidden
Hidden
in reply to Crispy69

I really hope it works for you! Good luck!

Lioness36
Lioness36
in reply to Crispy69

Hey, feeling touched..I'm so sorry you going through the most...Is adoption what you really want? If yes, then I'd encourage you to do it...Give a child a chance to a family n warmth n spare yourself a grip too...

I'm only 22, both my tubes are blocked, found out when I did a Laparotomy which was supposed to be a Laparoscopy but due to multiple previous Operations they had to cut full open to remove the Endo n that's when they discovered the tubes were also blocked...

IVF and adoption has been given to me as options though there are so many risks of I do the IVF

I'm scared n confused..

Hope all goes well

Hi,

I’m so sorry to hear what happened.

After the miscarriage I did have a HyCoSy (they put dye in your Fallopian tubes) as my gynea found some thickening in my left side. But that test was inconclusive and they encouraged us to keep trying, though in the meantime we are seeking fertility advice.

I’m with you on the pain sensitivity, a couple of Healthcare Professionals have told me the same thing.

I hope your MRI shows some positive results to help you move forward in the right direction.

I will certainly post again and keep people updated.

:)

My legs are awful - I feel like a pensioner with the stiffness and pain. Nobody seems to care as they say it's not endo but of course we all know it is!

The endo may be forming on or near your sciatic nerve and pressing on it which may account for pain being transmitted down the leg. If it were me I’d be asking my specialists all about sciatic nerve endometriosis and how it presents itself, see if things start to add up. There are articles on the internet about this specific form of endo if you do some digging around.

Hi, sorry that you've been having it hard...Do you have any kids ? Surgeries? Because from what I know is that the back pain happens most often if you've had previous surgeries, talking from experience...My back pain causes discomfort to my abdominal area as well as upper middle back pain.I no longer can stand for even ten minutes , some days my spine gets swollen too and causes me to vomit..I'm seeing my gynaecologist in two weeks from now to check what causes this n what she may suggest we do cause I'm struggling alot...life is not the same again..

Hope you get sorted out soon...

#Giant Huggie

Hi,

Thank you for your reply.

No Kids yet but we have been encouraged to keep trying as it was positive that I did actually get pregnant in the first place so fingers crossed 🤞🏽 I do also have a fertility appointment scheduled in a few months time though if nothing happens.

I have had 5 surgeries, I do believe my back/leg pain started after one of the surgeries 3 years ago but never had that investigated until now.

I have now had an MRI on my back which was fine, so I’m going to see a pain specialist this week as they believe that the pain I get from my endo has caused me to tense up and cause severe pain to my back muscles. Hopefully they can give me some more advice :)

I really hope you find out what’s causing your back pain!

Only just spotted your post when you posted a new one to update on how treatment is going, so I thought I'd post on here.

I've recently replied to another lady's post about back pain, my findings, my physio's assessment and what I've done which could help..

healthunlocked.com/endometr...

I know you're going through physio, but have you considered seeing a movement and mobility one? They specialise in post operative and tightness, which could help, they'll mobilise areas - it may take a few months but there are things that can be done. I didn't like the idea of steroid injections for the pain as to me it won't sort the problem but rather just numb the pain to help cope, some women are okay with this, personally I'd rather sort the cause.

I'm not saying it would work for everyone but I've found it definitely helps when we look at what we've been through and consider the core (abs) and back as one unit.

Hope that helps xx

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