Worried I might have Sciatic Endo

[1991A123]

Hi ladies,

Im currently waiting for my laparoscopy diagnostic. Should be having it around xmas time.

I think I may have Sciatic endo. I have been having endo symptoms (heavy periods, painful intercourse etc) for around 12yrs but since around October last year the pain in by lower back, coxyx, and legs have been awful and I'm always experiencing frequent tingling in my left leg.

Has anyone got similar symptoms, or been diagnosed with sciatic endo?

I'm worried as reading up its says if left untreated it could lead to lasting nerve damage. Thanks x

[Tinkerbell1990]

Hi,

I have similar symptoms and also have to wait until December for laparoscopy - the wait is horrendous! And I get extreme pressure and the tingling in both legs and feet. I did the same reading up about it and got scared about the lasting nerve damage 😞 my doc has booked me in for an MRI to see if they can diagnose any sciatica. It might be worth asking your doc about that??

[1991A123 in reply to Tinkerbell1990]

Hi,

Thank you for responding it is really reassuring that I am not alone. If you so don't mind me asking, How long have you been experiencing the sciatica symptoms for?

Thank you for the advise I will defianlty go back to my drs to hopefully be referred for an MRI.

I hope everything works out for you. Xx

[1991A123 in reply to Tinkerbell1990]

Hi Tinkerbell,

Just wondering how your feeling? Did you manage to have an MRI after?

Also if you dont mind me asking do/did you get stabbing in your thighs?

Thanks

Kirsty

[BrightLights88]

Hi

I was diagnosed with endo in 2018, after my first laparoscopy in August I even getting more severe stabbing dull pain only on my left thigh I also get lower back constantly. I used to use hot water bottle but I think I will ask my gp for a referral for mri. The pain is getting a lot worse on and off during the day

[1991A123 in reply to BrightLights88]

Hi brightlights, thank you for responding, did you manage to get a referal for a MRI? Do you also get sacrum pain, and tingling from bum cheeks all the way down? X

[BrightLights88 in reply to 1991A123]

Hiya, my appointment to the gp is tomorrow evening where i will find out the results from my urgent scan that they carried out last week. Then i will ask for a referral for a MRI. I am due to see my consultant next tuesday regarding the lap they conducted in august and also further more about my bowel surgery that i am also going to have. I have endometrioma in my bowel too. Yes the pain is all on the left thigh, running in my lower spine, and bum cheeks. My physio did they it's got to do with the sciatica nerve pain. I did look it up and it does say this is the type of pain it is. il keep you posted and see what the gp says. Although I am not hoping the for the best as it's a new doctor but il see. x

[BrightLights88 in reply to 1991A123]

Hi I saw my surgeon yesterday for a follow up since surgery. I had explained that I do not have any more endo pain. Instead I am suffering more lower back and thigh pain and bowel pain. He referred me for an mri to find out why that is, and to see if it sciatic nerve pain and where it is located from. Other than that I am currently endo clear for now. x

[Bubble_by]

I have this too! It gets worse around the time my period is due too. I also get like a dead leg feeling as well. I'm due for a review in a few weeks so I hope I will get some answers then.

[1991A123]

Thank you for your replies, I hope you can keep me updated on how you both get on. My request for an MRI has apparently been rejected as I need to try more physio sessions first! I've been given Gabepentin capsules which are helping with my nerve pains but its only masking my problems, and the side effects are not so great xx

[Forest_Green]

I’m also fearful I have sciatic Endo.

I have all the symptoms you’ve listed; the pain from my lower back, through my left buttock, down my leg and into my foot. Constant tingling and pins and needles sensations.

I also have hypersensitivity all in my left side from the waist-down. My sensation is completely altered and gentle touch hurts.

It’s now drastically affecting my ability to walk and had to buy a wheelchair two weeks ago so I can get out of the house.

I was in a very dark place a couple of weeks ago due to limited mobility and my loss of independence

This has all happened very quickly for me; the nerve involvement only started back in June this year. I started to suspect Endo only back in April. But I’d been having symptoms without knowing what they meant for about a year, basically since I decided to stop the combined pill I’d been taking for many years (which was obviously masking everything without me knowing).

My gynae has put me on a 12-month wait list for a laparoscopy and I’m terrified to have to wait that long, as I too have read about the potential for lasting damage. I was put on a double dose of progesterone-only pill in July.

After speaking to an Endo nurse via the Holland & Barrett/Endometriosis Foundation Helpline last week, my feeling that this is more urgent was confirmed, and she couldn’t believe what I told her and has passionately told me to push for a more urgent referral. She was amazing.

My Dr has listened to me, after so many haven’t, and referred me to an Endometriosis Specialist, a Neurologist, and a Pain Management Specialist. I’m not coping and she could see the impact it’s having on my life. Thank god for her.

I am now waiting for appointment dates to come through and no idea how long the wait is, but she’s put them through as urgent referrals at least.

I hope we can both get the help we need asap. Sending love and hugs.