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.

[Hannah818 in reply to 319LCOCKBURN01]

Thank you, that sounds really painful, I'm glad you have found some relief through surgery , I'll try naproxen , started zoladex injection recently, but lower back pains got worse not better after injections, not sure if it's related or coincidental

[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

[ChicaPixie in reply to Sunset-lady]

I also gave up alcohol at the beginning of my journey. It's so nice to be able to chat and compare things we used as you just never know how much it can help another person. I'll definitely be looking at the book and trying it out. Thank you 😊x

[Sunset-lady in reply to ChicaPixie]

Haha I bought a new mattress too. 🤣🤣🤣

[ChicaPixie in reply to Sunset-lady]

Hehe 😂😂 it's nice to know I wasn't the only one

[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?

[ChicaPixie in reply to LollyEllis]

I was just replying to Sunset-lady I'm glad I'm not the only one who decided to buy a new mattress hehe. Though sounds like you've invested in much better one altogether. I'm so sorry you're also experiencing this too. It's not fun when it gets this bad.

Yes when it's bad it seems I can't even roll out of bed. It's so very strange and hard to explain to anyone.

As for my endo well, when I had my first lap my gyne surgeon didn't expect to find rectovaginal endo so they just shaved it off as they explained that's as far as they could go. During my hysterectomy when the same surgeon removed lots of endometriosis from my bladder, pelvic area and upper abdomen she said that unfortunately she could not remove the rectovaginal or bowel endo without possible risk to life. As I now know thanks to this forum not all gyne specialists are knowledgeable in endo. And unfortunately I think all of this was a bit much for mine. I since found a gyne specialist who is part of the bsge centre locally to me and now I'm under his care. Though I now also know it's likely I'll probably need another surgery with bowel resection if my flare ups continue to be bad x

[LollyEllis in reply to ChicaPixie]

I’m so sorry to hear that. Beyond frustrating for you that you are living with symptoms after surgery still and will need another. I’m glad I know what I do from forum and groups etc. in terms of specialists. It seems so common that there is much more endo than is shown on scans for a lot of people. Wishing you the best. X

[ChicaPixie in reply to LollyEllis]

Thank you so much lovely, I'm sorry you're also in the boat of having this symptom with many others. It's definitely frustrating.

With me I know it could be worse so I'm still grateful for every good day I have in between the worse ones. Like you I just feel so glad this forum exists as otherwise I would really struggle and still not be the wiser as to what I'm going through.

Sending strength your way and best of luck to you too lovely xx

[BloomingMarvellous]

Worth understanding how the whole pelvic floor and endo situation works to understand the effect on the back and muscular skeletal system.

Podcast available via @leah_brueg her interviewing Dr Angie Muller a specialist in pelvic floor and endo function. It's number 52 or 57 .

[Aprifire]

I had a laparascopy in July last year which confirmed the endo I had was all along my lower back. I had been suffering with back pain for a long time and it was awful during my periods. Even after the surgery the back pain is unfortunately still present slightly, but as others have said here it definitely is possible. I hope you manage to have your surgery soon and everything goes well!

[Hannah818 in reply to Aprifire]

Thank you , its good to hear the surgery helped

[Gozzie]

I suffer with my back everyday due to endo and also struggle with pain in my hips and legs. I can't walk far and also struggle with stairs because of it.

[Hannah818 in reply to Gozzie]

Sorry to hear youre in pain, have you found anything that helps ?

[Gozzie in reply to Hannah818]

I just gave heat pads and hot water bottles on me constant at the moment. I've been having zoladex injections monthly but I'm beginning to think there making it all worse. Hope you're managing well xx

[Hannah818 in reply to Gozzie]

Hope you find some relief, I'm the same with zoladex, back pain has increased since starting injections , but not sure if it's linked or just a coincidence

[Kinz10]

Hi Hannah sorry to hear you are suffering, I get horrific back pain and sciatica even after surgery this has come back I find a hot water bottle useful on your lower back and recently I have had regular massage and acupuncture unsure if any of these will be suitable for you but they have helped me massively. Hope you get answers soon good luck xx

[Hannah818 in reply to Kinz10]

Thank you , yes that is really useful to know , will try booking massage and another Cupping session, had three days with no pain after one Cupping session few months back , thank you

[Kinz10 in reply to Hannah818]

I know they don't take the pain away for ever sadly but anything to just give you some on free days in between. Good luck xx

[Truffles16]

I never thought I had Endo but just really bad back ache. Then it got persistent and after loads of doctors visits etc we decided to do a lap. I had bad back ache on my right side and the doctors thought it was my appendix, hip, kidneys, Sacral joints etc. I ended up having a Lap 5 weeks ago and had Endo adhesions on my uterosacral ligaments, and para rectal space and rectum. I had lots of adhesions on my bowel etc too. I too suffer with really bad leg pains and have for years. I've also had a varicose vein surgery but wish I had a lap first as i'm convinced all the stuff going on in my pelvis had had an effect on it all over the years.

[Hannah818 in reply to Truffles16]

That sounds really painful, seems like so many women have to go round and round in circles with different doctors before they start getting clearer answers! Did the surgery help with the pain? Did they manage to get rid of adhesions? I've been told I have endo and adhesions around rectum/bowel area as well as rest of pelvic/uterus area , waiting for surgery and hoping they can get it all out

[Truffles16 in reply to Hannah818]

I'm only 5 weeks post surgery and if Im really honest I've felt worse. However it's going to take a while to recover. I'm also mindful that having surgery doesn't mean it's going to make it better in some cases. This is something im going to have to learn to live with now and it's going to be a big adjustment period. So it's more getting used to new normals for myself personally. Endo is very different for everyone though although its great getting advice I would also say be wary of the overload of information as its not a one shoe fits all disease. They got rid of most of the adhesions but I'm still in a bit of pain. Now the blood and tissues are all circulating as they should be so it's like a different pain if that makes sense. Anyway...I'm hopeful it will settle and if it doesn't then at least I know what it is etc