Endo in lower back?

[Hannah818]

Has anyone here had endo in lower back? I'm getting alot of pain in lower back , it's a newish symptom and now seems to be constant, it wont go I'm still on surgery waiting list, not sure what to do , can't sit for longer than 20 minutes and when I lie down it feels worse whether on back or side , feel awful

[319LCOCKBURN01]

Hi,Yes apart from fatigue and endo belly my main symptom was chronic lower back pain. My rectum was being pulled up by adhesions and my ovaries were kissing pulling my womb towards my back. I have my excision surgery a week ago and the relief was instant. I hope you don't need to wait too long to be seen x

[Hannah818 in reply to 319LCOCKBURN01]

Thank you for the advice, I have the same , kissing ovaries attached to rectum and lots of adhesions, waiting for a hysterectomy and surgeon to detach rectum from ovaries and uterus. So glad you've found relief from the pain with surgery

[LollyEllis]

Yes, my main symptoms are as 319LCOCKBURN01 has shared. It also affects down my leg on one side as I assume putting pressure on sciatic nerve. I haven’t been to MDT yet to decide on plan so waiting. Painkillers and started gentle exercise to see if helps. Great and reassuring to hear you have relief from surgery 319LCOCKBURN01 ! Did you have bowel surgeon present for your surgery? If you don’t mind me asking. Haven’t come across anyone who seems exactly same as me before.

[Hannah818 in reply to LollyEllis]

I was wondering the same as I've been told have to wait for gynae and bowel surgeon

[319LCOCKBURN01]

I live in Northumberland and I think I've been very lucky compared to waiting times elsewhere. My gyne consultant had a colorectal surgeon come across from James Cook to do my surgery and it was successful without a hysterectomy. I've had 2x failed rounds of IVF so they did preservative surgery, flushed my fallopian tubes and removed endometrioma, my others had shrunk with the prostap injection so I'm staying on it until I can have a fresh transfer later in the year. I do hope you can be seen soon X

[Hannah818 in reply to 319LCOCKBURN01]

Can I ask if you found anything helped the lower back pain whilst you were waiting for the surgery? Ibropofen not helping and I can't take codeine

[319LCOCKBURN01 in reply to Hannah818]

I take Naproxen when it's really bad and I have to admit the prostap injection monthly has helped to reduce but not stop the discomfort entirely. The surgery has made a huge difference. I had a rectal nodule that was invading my vagina so it's been a relief to have it removed. Like Sunset-lady I've spent years having scans and physio on my lower back, the whole time it was endometriosis.

[Sunset-lady]

It's possibly endo on the uterosacral ligaments which is pulling everything. The pain radiates to your legs and buttocks too. It's not spoken about enough in my opinion. Back pain is so common because women with endo tend to grow nodules on this ligament and it's unusually thicker for us. It pulls our uterus up which is why we have high rectums etc. I had it for years - spent thousands trying to fix it as i was a runner. I saw chiropractors, osteopaths, physiotherapists, pilates teachers and my GP and not one of them mentioned endometriosis and back pain. Doing specific exercises for your sacrum can help a lot. There's also a specific nerve in the leg that reacts to it. Most of us think it's sciatica but it's not. This is a huge area of women's health and endometriosis that is just ignored x I had it for 4 years and then it went away. Once it pulls everything to a point where it can't pull anymore, I think your body settles into that shape. This is only my experience though x good luck x

[Hannah818 in reply to Sunset-lady]

Thank you, il try reading up on it this weekend, feels like another bump in this journeyI really don't want to take more time off work and I can't get relief from pain sitting standing or lying down

Thank you for the advice

[LollyEllis in reply to Sunset-lady]

This is really interesting and helpful thanks for sharing. I went to chiropractor and physio… I specifically mentioned endo (only when I knew I had a cyst waiting for diagnosis) and she said no it is a mechanical thing with my hip. Like you say, little is known by people as these symptoms not talked about.

[Sunset-lady]

OK. If you also want to read look at Healing Back Pain by John E Sarno. Keep an open mind as it's not what you expect but I KNOW it massively helped me. Have a look at it xx

[ChicaPixie in reply to Sunset-lady]

Thank you so much for sharing this lovely! I jumped on this thread as I too suffer from lower back pain. Appreciate your advice I'll also look this up. Thank you x

[Sunset-lady in reply to ChicaPixie]

Well it blew me away. I gave up alcohol a while ago and the author Annie Grace mentioned in her book that she read this book and it cured her back pain. I went on holiday to Cyprus and was in agony so couldn't run. I spent a lot of that holiday in the sauna miserable. Then I decided to read the book. I think many of us with endometriosis are empaths and well, read the book. He has millions of testimonials from people he has helped. After reading that book I was a different person x

[Sunset-lady in reply to ChicaPixie]

Haha I bought a new mattress too. 🤣🤣🤣

[ChicaPixie]

Hello lovely, sadly I know it too well. It was not something I associated with endo before I even knew I have endo. I even changed my mattress as thought maybe I sleep wrong. But after my diagnosis and then after my first lap the lower back pain subsided. Then it came back again after a few months. It seems no matter how I sleep or sit it will hurt. There were times I could not even tie my shoes or do the daily tasks. Then it calms down and I'm ok for a while.

I do have rectovaginal endo and bowel endo which the surgeon left behind in my lap and during my hysterectomy last year. And my back pain has returned again on and off.

One thing I've noticed that helped me at least with sleep is a wedge pillow, I personally hate it as sleeping on a side feels like you're on a slope. But it seems to help when I'm sleeping the pain isn't as bad during my flare ups.

I also try to do very gentle stretching only as far as my back allow at that time. Another thing that someone on here mentioned is Jessica Valant pilates (this lady has endo gentle exercise on you tube)and I try to do her stretching which seems to help a lot. Again only as far as my body allows at the time.

The last thing I used and it helps but only for a short time is a portable massager I got on Amazon ages ago it's meant to be for neck but I used it against my lower back and it seemed to help just a little that I could actually move.

I really hope you will find a way to manage this going forward, please be careful too and pace yourself when it gets too bad. Mine got so bad few weeks back I fainted and fell. It was very scary but now I am just very careful if I'm in any pain I take my time.

Sending lots of strength your way and truly hope you won't have long to wait for your surgery which hopefully will provide some relief x

[LollyEllis in reply to ChicaPixie]

I too bought a new mattress, and although not the cause it has significantly helped and a wedge between legs on side, i have to sleep in a position I don’t find particularly comfortable to fall asleep in now but when i wake up the pain is significantly less than it was ChicaPixie Hannah818 . Not an option for all but I invested in firm orthopaedic one. Also, naproxen from gp (ensure you get omeprazole aswell as it is hard on stomach) and Pilates as people have mentioned.

I could be reading about myself… so bad can’t tie shoes etc at times and others only a twinge!

ChicaPixie can I ask why surgeon left some and didn’t remove?