Degenerative disc disease and endometrios... - Endometriosis UK

Endometriosis UK

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Degenerative disc disease and endometriosis!!!!


Guys I’m absolutely devastated !! For 6 years of my life I have been told over and over again my gynaecologists and doctors that my pain is endometriosis and I have to live with it. Even when I have presented with daily symptoms of agonising pain that has left me unable to walk or stand or lift for long periods of time. I was always brushed off! YES I DO HAVE ENDOMETRIOSIS AND YES I DO HAVE EXCRUTIATING PAIN FROM IT however it was not responsible for my daily severe nerve pain in my pelvis. This was infact a bulging disc sitting on my sciatic nerve that left me dibilitated. I had never been offered a spinal MRI even though your spine is responsible for all your nerve endings and pain receptors . Basically I have been living a lie for even longer and as much as my endo pain is debilitating I did not have to deal with this additional pain and told to accept this as my life. I am writing this today because I want my endo sisters to get spinal MRI and check your spine!!!! There is a possibility that your back pain and pelvic pain or even radiating pain down your legs is linked to a bulging disc it is worth a try to see if it is and if you can be helped. I had to share this XxxxxX

20 Replies

I have been to see my gynae consultant today and they have said that my back, hip and leg pain might be due to a bulging disc or muscular skeletal of some kind. I get numbness/tingling in both legs but mainly the right side. I also get it in both my arms after I've been asleep. I'm now awaiting the referral for a mri scan of my spine and to see a orthopaedic doctor.I have been feeling so low and my anxiety is terrible at the moment. I can't go back to work, do housework or food shop. Painkillers aren't helping but I'm hopeful that they will find the cause of my pain. I hope you'll be able to get treatment and start feeling better very soon x

Fooofs91 in reply to Bikergal900

I am so happy you are getting an MRI I wouldn’t wish this upon anyone but just knowing is the greatest relief . There are so many successful treatments for a bulging disc so hopefully it can be removed as a form of additional pain . I wish you all the success and a pain free life 🌹🌹🌹🌹 thank you so much xxxx

Bikergal900 in reply to Fooofs91

Thank you and thanks for sharing your experience. Hopefully it will help others by us all sharing our experiences. I wish you well and hope you too find some relief, all the best xx

Fooofs91 in reply to Bikergal900

Thank you my love sending hugs xxxx

Fooofs91 in reply to Bikergal900

Painkillers do not work at all I can hardly walk on hard surfaces and I haven’t worn flat shoes for 6 years!!!! This is a gold standard symptom of disc problems that when I used to tell doctors they would laugh at me and think I’m crazy !!!!! Xxxx

I'm so sorry they didn't pick this up sooner for you. Thank you for sharing, I suffer with similar so will try to get my consultant or GP to investigate.

Fooofs91 in reply to MissMarlene

Please please check your spine !!!! I am 29 years old and I had this from age 25 it is very rare but it was the reason for my daily pains on top of my endo pain. I hear a lot of woman with endometriosis complain of constant back aches and leg pains I really hope they can find relief of this as it may be a spine problem and not even endo related. Or in my case additional pain which makes life hell . I really wish this clears any abnormalities and you can gain an understanding of what is really leading to this pain xxxxxx

So sorry you’ve had to deal with this. If they suspect endo they should more, an MRI to check everything else in the area, it would save so much in the long run. Because of severe weight loss I’ve had MRI’ and CT scans in recent months to check for any other possibilities, but nothing major showed, but at least they did something. I had to whinge big time though and I had some help from gynaecologist who thought too severe for endo.

I hope you get it all sorted very soon.

Fooofs91 in reply to Moon_maiden

Absolutely !!! I had to beg and imagine even after begging I was turned away . I am so angry and annoyed I have lost the prime years of my youth I am only 29 if this was discovered sooner I wouldn’t have been debilitated. I am so grateful that a physiotherapist ordered an MRI ( it wasn’t even a bluddy doctor) . I got my answers and I wouldn’t wish for anyone to go through this long suffering !!!! XxxxX

I am in a similar situation. I find it shocking that doctors guess ailments & prescribe without any visible evidence. I've recently had physio where the therapist didn't once touch me - & that was before Covid-19! I'm pretty sure I have hypermobility & a degenerative condition happening to my spine, coupled with rheumatoid arthritis. That's along with undiagnosed endo... The list keeps growing when doctors don't listen.

I have a neck MRI this coming Monday evening. Neck issues for 20+ years & only now it's drastically more uncomfortable do they want to take me seriously... Still not MRI for the whole spine, or even to assess for endo.

When I was a dental nurse, & a patient came in with pain, even if they could tell us which tooth hurt & we could see a cavity, we always took xrays to a) show the depth of the damage, b) to show any further areas of concern & c) to assess the general oral health of the patient. Also we'd take a look medical history from the patient & listen to them.

Not once would we guess & prescribe without that base of evidence... I have no clue why the rest of the human body is any different, besides the fact that it costs the NHS more £££ to treat people holistically... That's my 2 cents.

I'm sorry you've had such a rough time of it; us women get treated like we imagine everything or just make it up.

Thanks for sharing & all the best xx

I am also a dental nurse!!!! I started off as a receptionist for 6 years then I enrolled into dental nursing . I stopped this year becuase the pain was too much : even during my nursing days I had to be put on reception Becuase I couldn’t stand anymore funnily enough I was convinced it was endometriosis pain Bexuase that’s all I I as ever told but it was NOT it was a combination of severe disc bulging and endometriosis which left me in agony every single day .EXACTLY!!!! Dental x-rays show everything and only with exact proof of diagnosis will any dentist proceed with treatment . My whole family works for the NHS including my self my whole life and have paid taxes . I really felt like the reason why I was rejected an MRi for so long was Becuase doctors made it seem like it was something I should pay for myself . It’s so upsetting !!! No one deserves this xxxxxxx

I did like my nursing days - especially when working with a couple of dentists that I just clicked with & it was almost like mind reading going on lol 😅Lots of my family works for the NHS too, but you're absolutely right, there is an unspoken financial discrimination that goes on.

Lots of love fellow nursey xx

Please please push for an spinal MRI just for your own peace of mind . All of our nerve roots are linked to our spine travelling down into the pelvis and leg region it would be good to check . There are so many good treatments for nerve pain . It may help with the endo pain we already live with xxxxx

Thanks 💕

Hi. Don't feel alone, in on the same ship. I ve got a MRI coming after my legs remained numb... I felt depressed cos before now was mainly pelvic pain. Also my doctor after many years has the idea to check the back properly. I walk like a sloth still I ve got so many energy inside me just need to find the way to go forward endometriosis will never ends my passion for painting and make collages. Please please put your energy in your passions or hobbies instead to be sad.

Wish all of you the best. Endo sisters xx. Fny

Fooofs91 in reply to JuditLovo

Hello my love!!! This is exactly like me !! I really hope you get answers for your pain. Endo and all of this pain has really stopped me from living normally but I always push forward without a doubt I am so happy you stick to your passion for painting and hobbies 😌😌 I also continue to do the same . Thank you so much for your encouragement endo sis may God protect you and give you a pain free life xxxx

I feel like the stars have aligned!! I have lower back issues and pain down both my legs. I can barely bend forward and I cannot stretch my legs fully without pain.

I've been told its old age... I'm 32!

I was a dancer before I had children and although never the most flexible I have been baffled to this increasing limitation in movement and so much more pain in my hips and legs and its different to my endo pain.

I am sorry this has happened to you all but I find comfort that I AM NOT ALONE!

Best wishes to you all. I will be mentioning this to my consultant ASAP


Fooofs91 in reply to Thatcher16

I am soooooo unbelievable grateful that you will be contacting your gp in regards to this !!! I would not wish t s upon anyone but if anything does show up and it helps you deal with this additional pain which exactly like you said DOES NOT FEEL LIKE ENDO PAIN then I hope you find relief from this!!!! I am very disappointed and angry that it has taken 6 years of my life Becuase I wasn’t taken seriously and just to accept my fate I do not want anyone to go through this !!! I am wishing you a pain free life!!!!! You deserve it as do we all xxxx

Just wanted to update you that my pain has been getting worse so I went to see a private chiropractor and he is confident I have no nerve or disc issues. I am very twisted and my body is very out of line. I have an extensive report explaining and listing all the issues I have. I am starting my treatment plan on Tuesday and he hopes after 4 sessions I should feel significant relief whilst I wait on an appointment for mri.

Fooofs91 in reply to Bikergal900

Thank you so much for the update my love!!! I hope you are all good and your MRI is fine . Yessssss that’s great news . I also saw a chiropractor he said my body was out of line too down a the strain on the pelvis from clenching mainly due to the endometriosis !!!! I’m hoping soon I can get off these pain killers and start living again xxxx wishing you all the luck xx

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