Back problems with Endo?

[CiCiWilliams]

Hi girls, is anyone else suffering awful back pain with their Endo? When having a flare up I get the pain in lower back. It feels like my back has seized up and I can barely move l. It's horrendously painful. My pain always starts here and then moves around to my ovaries and abdomen. Is this normal? And does anyone else suffer with this? Help me xx

[Cupcake1617]

I'm waiting for a lap still but I get really bad lower back, that's the first sign of if all kicking off again. I find it hard to sit down and get up and bend down. I find keeping it warm helps take the edge off

[CiCiWilliams in reply to Cupcake1617]

Thanks Hun. I'm waiting for my second laparoscopy. My back just keeps seizing up. It's a horrible pain. My back was never as back as this with it earlier on in my life. Xx

[Cupcake1617 in reply to CiCiWilliams]

Someone somewhere suggested tiger balm (red), I brought some a few weeks ago incase I had a flare up (as I've just had the depo injection again) & I've used it tonight on my right hip & thigh and it has helped so much! Have you ever tried it?

[Hidden]

Hi, I have had my endo confirmed by a lap about 4 years ago. I suffer with lower back pain too, it is worst if I stand too long or lie flat on my back and can be eased slightly by curling up and applying heat. Hot water bottles or microwaveable bean bag thingys are best for home, when I'm out I carry a can of deep heat which I find helps slightly. I used to try the stick on heat packs, but they're naff! I have seen a website that sells 'endo heat packs' which are like an adult nappy that you can heat up - they're much more attractive though and you can pick a colour! If I can find thr website I shall post a link - if I'm allowed to x

[CiCiWilliams in reply to Hidden]

Thank you so much. Great help. Standing too long, wearing heels, lying for too long or sometimes just nothing can set it off. I couldn't physically get myself out of my car yesterday. Starts lower back then come all the way round to my ovaries and abdomen. It's horrendous. I was crying in pain xxx

[Sweetyassi]

Hi, yes I've been suffering with back pains since I first found out I had endo in 2009 and some days and nights my back pains a really horrible that I can't stay in bed, or sit or walk properly. I use hot water bottle when I can.

Sweety.

[CiCiWilliams in reply to Sweetyassi]

Walking and sitting up is real painful when it is like this. I always find that's when I know I'm going to flare up, my back goes first xx

[Sweetyassi in reply to CiCiWilliams]

I get pains and irritation in my bowels and bladder that's when I know I'm getting a endo flare up😢

Sweety.

[CiCiWilliams in reply to Sweetyassi]

Do you suffer IBS as well? I have Endo and ibs and I'm told the two come under in hand. Xxx

[Sweetyassi in reply to CiCiWilliams]

Yes I suffer from IBS and suffer from celiac disease and weakness of the bones.

Sweety.

[CiCiWilliams in reply to Sweetyassi]

It's rubbish isn't it. I made the mistake of eating biscuits today and man am I now paying for it. It's annoyed my IBS and in turn my Endo is kicking off. The fun never stops does it. Xx

[Sweetyassi in reply to CiCiWilliams]

Yes it's horrible, it's one thing after another. I found out yesterday that I have endo on both of my ovaries, on my bladder and around my bowels. I've been in agony all day, have had difficulty keeping anything solid down. You have to be very careful what you eat, anything can trigger your pains.

Sweety.

[CiCiWilliams in reply to Sweetyassi]

I have it on both ovaries and pouch of Douglas for definite. She thinks it might have spread though so will find out in surgery. Xx

[Sweetyassi in reply to CiCiWilliams]

That's the only thing that helps in the short term having an op and removing endo, but in the end not matter what you do, eat, it still comes back.

Good luck with your op, do you know when you're having it?

Sweety.

[cupcake40]

Hi I have suffered with endo for over 20 years and have had lower back pain and top of buttocks. The pain is very bad at the moment and is causing sciatica too I can't get comfortable in any position hot baths help for a short while but mobility is difficult. I am very emotional at the moment but think it is the constant pain, fatigue and frustration. Just come back from having lots of blood tests and next appointment at endo specialist end September. Think I am the only person looking forward to appointment - must be bad. Hope you get some relief soon and we are suffering a flare up as don't think I can cope with this much longer. Claire x

[CiCiWilliams in reply to cupcake40]

Hi Claire,

Sorry to hear you're suffering so badly too. I hope it's a slight comfort that you are not alone. I know that's made me feel less isolated. So thank you for replying. I'm not sure what sciatica feels like so I'm not sure whether it's the same for me. Sounds like you're having an awful time. I too am looking forward to getting called for my appointment. I'm so uncomfortable and I totally get the emotional thing. I have been a wreck. I never cry in pain normally but they're getting so awful. You can message me any time. CiCi xx

[Franjanu]

I have an electric massager with heat and I place it where it hurts for 15 minutes a day. So good! Massage with heat can help with pain

Www.Coconutandwhat.Com

[CiCiWilliams in reply to Franjanu]

Thank you. I'll check it out xx

[NS2408]

Hi CiCi,

I have really bad back pain at the moment as well. Having pelvic pain again as well as an ache after urinating and on bowel movements. I'm on the pill at the moment and it hadn't helped elleviate the symptoms. My back pain is the worst it has been for a long time. Definitely all related.

I hope you feel better soon.

Nicki

[CiCiWilliams in reply to NS2408]

Hi Nicki,

Same here. It starts in my lower back and then come around to my ovaries. It's so painful. Having problems when weeing too. So nice to hear from you and know that I'm not alone.

I didn't get on with the pill. They've put the mirena in to try and help with symptoms. So far, no joy. I find it intriguing how it seems to effect everything. Before my first lot of surgery I only got minor back pain, now - it's excruciating. If my back seizes up I just cannot get up.

Feel free to message me anytime.

CiCi xx

[Sunset81]

Same here my back pain as been really bad went to gp said it was to do with nerves in back and endo got some more meds to see it they help and let me sleep Amitriptyline 30 mg plus my usual pain meds hoping they work

[CiCiWilliams in reply to Sunset81]

My GP said the same. Apparently the body rewires the nervous system to cope with the constant pain and this causes us to be more sensitive to things.xxx

[Sunset81 in reply to CiCiWilliams]

Hi I use an electric heat pad it's helps loads xxx

[pinkfairydust10]

Hey Hun I really feel for you. Me too I also get horrendous back ache- got it now. It also affects my bowels. I find hot water bottle really helps. No position helps it I just lie there. I find the back ache worse than the pelvic pain at times. does anyone have anything that helps, I am tempted to try acupuncture. Hope your appointment helps xxx

[CiCiWilliams in reply to pinkfairydust10]

Thank you. Still waiting for my surgery date. I have used acupuncture before. I found it helps but it's quite expensive to go regularly I found. I should be able to get it via the pain clinic after my op though, so that will be good. The only thing that eases it for a while is a very hot bath xxx

[TAnd71]

Hi, i have similar experience to everyone else. I have it mostly after wearing heals, laying too long, sleeping and sometimes certain sexual positions. I have had deep tissue massage with a very sympathetic ostopath. Also as it keeps me awake a lot I also feel totally exhausted. I've taken to sleeping with a pillow between my knees on my side. I've been doing it all week and no pain. My osteopath told me it sticks inside. I'm sure he used some long words to explain but it's always better after a good walk with my dog on beach. Im definately interested in the head pads though. I sleep with hot water bottles held in place with cushions. I know it's not nice to have these symptoms but when I read others sufferings it helps me feel like I'm not alone and im not just moaning all the time about nothing. Hugs for lonely silent sufferes out there

[CiCiWilliams in reply to TAnd71]

Thanks for your reply Tracey. Did the massage help at all? I get it with sex as well. It's so horrible but my partner's very good. I'm finding nothing seems to soothe my back. I try putting cushions underneath to support it but it does little for the pain. I find it nice to hear that I'm not alone so really appreciate your reply. Hope you're feeling better xxx

[TAnd71 in reply to CiCiWilliams]

The deep tissue massage helps a lot, but my pain is much less recently since I started juicing. I watched a good TV series about the benefits of juicing I juice twice a day, fruit and spinach. I has made a huge difference. I had no pain for almost 2 months until I had an extremely emotionally painful experience which effected my hormones and my eating, sleeping etc. So you know how that goes. I also found the deep tissue massage quiet emotional first few sessions. But the thing that seems to work is less sugar. I also take maca powder

[Hidden]

Hiya, I also have back pain in lower back and on my right side where my kidney is, I also have pains going down my left leg. These are all extra to my constant pelvic pain. The extra pains I have are since my hysterectomy this year. I'm on so many painkillers that I must rattle each time I move. Xx

[CiCiWilliams in reply to Hidden]

What pain relief are they giving you? From what I've heard it seems to cause lots of secondary issues. There just seems to be no end with it :-(. Lower back is what is getting me all this week. So painful. Hope you're feeling better honey xxx

[Hidden]

Hiya, I'm taking 30/500 co-codamol, 50mg amitriptyline, 300mg gabapentin x 3 a day. I also take omeprazole as I have a hiatus hernia, citalopram and a inhaler. I still feel a lot of pain even though I am taking all of the above. I guess anti inflammatory is the better pain killer but I can't take them due to my hiatus hernia and asthma. I have an appointment with the pain clinic in 2 weeks so I'm hoping they will find something that will help me with minimal side effects.

I hope your pain settles for you xxx

[CiCiWilliams in reply to Hidden]

Thanks Claire. I have the strong cocodomal too. I can't have anti inflammatory tablets as I'm allergic which is horrible as its what I could do with. Hope you feel better over the weekend. Xxx

[Hidden]

Thank you, hope you are feeling better too xx

[sukoshi]

Yes, same here! I have had lower back pain radiating into upper buttocks and hip area on and off for years. Seems to flare up whenever my body is particularly weak. Haven't been diagnosed w/ endo yet (1st lap in October) but have had this and other symptoms that doctors didn't put together for a long time.

[scarletspy]

Oh god yes! I get an intense aching pain in my left lower back and nothing helps - not painkillers, anti-inflammatories, moving about, etc. I wish I could help but I haven't found anything that works for me yet .