Back pain: Hi, I was diagnosed with... - Endometriosis UK

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Back pain

Chris0zx6r profile image
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Hi, I was diagnosed with endometriosis about 5 years ago after the birth of my daughter. I had a laparoscopy and then the implants afterward. Recently I had bad period-like pain, which then moved to the side and down my leg (like sciatica) and then across the bottom of my back. It was so severe I couldn't stand up, was constantly bent over. Now due to ibuprofen and paracetamol I am able to walk, just, but it's still very painful. Has anyone else experienced this? I'm pretty sure it's to do with my endo as it started with period-like pain and I haven't done anything to hurt my back, but my doctor is very dismissive of that theory. Please let me know, many thanks, Chris :)

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Chris0zx6r
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gemp54 profile image
gemp54

Hi, I'm sorry to hear about the problems you're having. I'm afraid I cant help as I am yet to be diagnosed but I have started having the pain you described since the birth of my son 8months ago. I've also had period pain with persistent bleeding (the bleeding is only for the last couple of months but its been erratic since the birth). I had an internal and external scan that showed nothing. Do you mind me asking what symptoms you had that lead to the diagnosis because the doctors seem to dismiss the possibility of endo and I've had months of unrelated tests which are driving me mad! Did you have a scan and did it show anything. My last doctor said it was unlikely to be endo as it didn't show on the scan but I thought it was unlikely to show on a scan and required a laparoscopy. Xx

Chris0zx6r profile image
Chris0zx6r in reply togemp54

Hi, a little while after I had my daughter I was getting pains. My doctor referred me to a gynaecologist, who after an internal, thought I had a cyst and booked me in for a laparoscopy to have it removed. It was only when they did the op that they discovered I had severe endo. It does not show up on scans or MRI's, the only way they can tell for certain is via a lap. Other symptoms I've had is pain during sex, IBS like symptoms, depression, aching legs and tender boobs. I'm not sure if it's all related or not, but from what I've read each could be. But this is the first time I've had the back pain :( I hope you get diagnosed soon and things improve for you! X

gemp54 profile image
gemp54 in reply toChris0zx6r

Thanks for your reply. I also have been previously told I have ibs, have irregular periods, sometimes quite bad period pains but whether I get the pain tends to be erratic like the bleeding tends to be. Since my little boy was born I've had these back/hip/pelvic pains on and off, usually (but not exclusively) when I've been bleeding. Its sort of a hot burning kind of pain but then some shooting pains and primarily low in my back and hips a bit like labour pains but more constant. The doctors next step is blood tests tomorrow which should have results back within a week so if that isn't showing anything maybe they'll looks at endo then!? Xx

confusedandworried profile image
confusedandworried

Hi, it may be worth looking at Adenomyosis as sciatic pain is also a symptom of this. I have both endo and Adeno and have sciatic pain with it.

Adeno is similar to endo but is within the muscles of the uterus.

Sometimes Adeno can show up on a scan if your uterus looks enlarged or bulky, sometimes it does not. An internal exam may reveal a tender uterus. In my case the consultant said my "uterus was very tender" and I had "cervical excitation" - my words are that it felt like he was poking me with a knife. Adeno may show up in a biopsy done through a hysteroscopy. Unfortunately again it may not if the Adeno is diffused. Then it is a bit like finding a needle in a hay stack. Often it diagnosed if other potential suspects have been ruled out and the symptoms fit.

Adeno can be controlled through meds but ultimately the only cure is a hysterectomy.

I have opted for a hysterectomy for the Adeno and excision surgery for the endo to be done in March. A hysterectomy does not cure endo for reference.

Also my surgeon is adamant about leaving the ovaries and only removing the uterus and cervix due to the health risks associated with removing the ovaries.

If your GP continues to fob you off seek a 2nd opinion &/or change pratctices if necessary as it is not okay for women to have to put up with pain.

Best wishes

Ka_chazzy profile image
Ka_chazzy

Hey :-) I also get this problem. I was diagnosed oct 14 and I get horrific back pain, sore tummy and numb legs. I presume it is endo but it is excruciating. I have resorted to wearing a back brace at times and wrap around heat pads xx

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