Back pain

[Lornalost89]

Hi all

I'm wondering if anyone is struggling with severe back pain? Today I am crippled my legs also feel like they are made of stone.

I'm really really struggling but my specialist is adamant it's can't be related to endo as I'm using zolodex.

I've never had a lap or anything just my MRI report sent to the specialist which was referred to as "bullshit"

I dont know what I'm looking for I just worry as my MRI wasn't viewed and the report was deemed so poor that we might be missing something that's causing this pain.

As I am today I don't know how I can manage going forward, I've had no endo symptoms since starting zolodex and very minor menopause symptoms so it was agreed this will be my long term treatment.

BUT MY BACK 😭😭 I know back pain is a very common thing however this just isn't right and has got worse and worse and everyone just keeps fobbing me off as its ok. It's very low central back pain doesn't move but makes me nauseous aswell as right sided flank pain 😢 I've been to A&E before and told its muscular but we are 3 years on and nothing helps 🤢

[Tangoandmax]

Who has referred to the MRI as bullshit? Please tell me it wasn’t the specialist you’re currently seeing? If the report was not sufficient it’s the consultants job to request an another opinion or scan if needed.

Zolodex isn’t going to miraculously get rid of all pain. Yes it should help switching off hormones which will hopefully stop endo growing but if you have not had a lap, they can’t be certain how much existing endo there is and how severe.

For reference, (pre op) my pain was constantly lower back and down legs. So much so that I couldn’t sleep without a hot water bottle/taking tablets. When really bad I didn’t feel like I could be upright. I’m six weeks post op excision of endo from both pelvic walls and ligaments. I also had organs stuck together.

How long have you been taking zolodex? I think they say to give it time, but if symptoms are unmanageable I would insist on further action, or maybe a second opinion. I’m always wary of doctors who say it can’t be this because as most of us know, they get a lot wrong when it comes to Endometriosis!

[Lornalost89 in reply to Tangoandmax]

Hi. Yes it was the specialist I'm seeing. Actually said my local hospital are wasting money doing scans if that's how they write a report. But she said there's no need to repeat/do lap as there will be nothing to see now I'm using zoladex.

I've been using it 4 months now and is has helped everything other than the back/legs/flank. I was actually told "I'm not a back dr" when I was expressing this pain is continuing.

I'm currently laid up with tramadol and hot water bottles with no relief it's just the constant battle of trying to get help/ listened too.

I didnt know where to start with a second opinion as it took so long to get to see this specialist. They say my bowel is fused to my cervix etc which is why I thought the back pain could be linked. But like I say. No lap and using a report done by someone who has no idea .

I'm going to request my records and look to reach out to someone for help x

[Tangoandmax in reply to Lornalost89]

Are you at a BSGE centre? I’m sorry it’s so rough, also having a terrible day, tens machine on front, hot water bottle on back and cocodamol every four hours today.

If the pain is continuing despite treatment hormonal treatment they should be investigating further but I suspect it’s location of endo. I’m not sure how a specialist can think it’s not related, it absolutely baffles me how every consultant you speak with addresses management/treatment differently. I wouldn’t be entirely confident in their capabilities though if they’re saying you need a back doctor, it’s nonsense. The symptoms on the NHS website literally says lower back pain, it’s incomprehensible. Maybe show this to them? 🙈🙈

I also did a subject access request, it’s good to have all of your information. Absolutely worth getting a second opinion though especially if they’re not listening. Sometimes think they’re happy to just fob you off with hormones as it’s easier for them.

Hope pain improves for you soon xx

[Lofty1589]

Zoladex and other similar drugs should not be used as a “diagnostic” tool! I was on 7 months of Decapetyl and 5 months of Prostap. I still had pain, still bled. Was told by one dr that it meant I couldn’t have Endo but my consultant (specialist) said it meant that it wasn’t working properly. I HAD WIDESPREAD STAGE 3 REMOVED IN FEBRUARY! I’m so sick of drs saying that if it doesn’t help symptoms etc, then it isn’t Endo. Those drugs don’t do anything for the size of Endometriosis and can have horrific long term effects that aren’t discussed.

Please say you are on some form of HRT

You need to see a different specialist. They have outdated and harmful views and you deserve a lot better for your care.