Endometriosis, Extreme pain on lower back and thighs

[Jeraldine12]

Endometriosis Extreme pain on lower back and thighs 😪

Hi

I was diagnosed 3 years ago with endometriosis from an MRI scan that my doctor sent me for osteoporosis in which I didnt have , since then I've been on all sorts of pain relief that didnt do much , I had the prostap injections that stopped my period so it did get rid of that pain but the worst pain I have is the lower back pain and pain in my legs I have the pain all the time and also I get shooting pains down my thigh that comes and goes and it really affects my walk and so embarrassing when I'm out in a supermarket

I had a phone appointment with a gynecologists 2 days ago after waiting months for this phone appointment and he said the pain in my legs had nothing to do with endometriosis and told me I needed to see orthopedic surgeon, Then he asked me did I have an MRI on my back and legs and I said well i did have mri scans that's how i was diagnosed with endo so he said well I'll ring u back in 20 mins I got the feeling this guy didnt even look at anything before he rang me , He rang me back and said ermmmm okay I'm going to book you for surgery but you could end up with a bag or lung clots or leg clots etc and I'm like excuse me will I have an appointment to see someone to explain about the surgery or what's going to happen please ..... he said no you will just have the surgery I've booked you in now you'll hear back in 12 to 18 months and that was it a 5 min phone call I feel a bit lost to be honest any advice would be very much appreciated from anyone on here please

Thank you

[MrsMarlene]

I'm so sorry you had such an awful phone call. I've had an equally bad face to face consultation with a BSGE Endometriosis specialist. Without talking about the surgery or risks I've been booked for a laparoscopy and excision, and he wants to give me a mirena coil - not a chance. I'm on progesterine only pill, and also have adenomyosis so would NOT want that. What I want but cant get is a hysterectomy.

I also have excrutiating pain in my hips, thighs and right down to my knees. It feels like hot electricity shooting up and down my nerves! I am never seen without a hot water bottle against my upper thigh.

I think you should ask to speak to another consultant. I will be doing that same, if and when anyone begins treatment again.

[Jeraldine12 in reply to MrsMarlene]

Thank you for your reply and the advice🙂 I will definitely be asking to speak to someone else I really sympathise with your pain because I know how bad it can get because I'm the very same i also have adenomyosis and ovarian cysts too the endo nurse told me the reason for the leg and back pain is because the endo is pulling on nerves so i was prescribed pregabalin which has took the edge of a little bit but not fully took the pain away or the shooting pains away maybe i just need a higher dose for it to help more i hope you get to speak to a more understanding specialist and he let's you have a hysterectomy like you want i think if that's something you really want then I really hope they do the op for you x