Back pain

[Kinz10]

Hey all, new to here. I have been suffering for so long now and always get back pain before and during a cycle. But their getting worse and this one has ruined me. Does anyone get it crippling even after your cycle ends ? I'm also getting burning in my rib cage and the pain is moving through my left side from my neck to boob pelvis and leg. Had this pain for two weeks now and I can't do my daily normal activities have had to take time off work to and it's not easing up at all nothings working so fed up.

[CryBaby91]

Hi Kinz10

Yes pain outside of your cycle is something lots of us have! It INFURIATES me that people think of endo as a "period problem" when in reality it can impact you outside of your cycle and even after hysterectomy/menopause. Hormones stimulate endo and make it worse, but pain can be daily.

I get all those pains too, so you are not crazy. Endo can press on nerves and cause pain to travel everywhere. And bowel/stomach/digestive issues can mean that you get rib and shoulder pain.

Have you downloaded a good period tracking app? I noticed that my pain is way worse in the week of ovulation and then obviously the dreaded period. It helped me to map when my pain will be intolerable, and then days when I'll have pain but it is manageable with painkillers etc.

Also, are you diagnosed or still looking for diagnosis? If you need any advice on pain relief just let me know xxx

[Kinz10 in reply to CryBaby91]

Thank you so much for the reply, it makes you feel your going crazy. I track all my cycles at the moment I'm getting very little relief maybe a few good days in between cycles. I have never had back pain like this though 🥲 has been so bad no pain relief has helped and mobility has been hard. I am an extremely active person my job is physical and I already can't do half due to how this makes me feel I'm so tired and hurt all the time. I thought after my cycle the pain would ease but although slightly better it's still there I cant sit stand,bend I'm going crazy. I am due to have a lap have gone through the pre consultation phase two times third time lucky next week 😞 been waiting for a lap for five years !!! I feel ringing drs is a waste of time noone listens to you x

[CryBaby91 in reply to Kinz10]

Oh love I totally understand, they really do make you feel crazy but I promise you're not! Have you considered using a walking aid to support your back better? I have a stick 🙂 mine lights up haha.

Waiting for that lap is murder, and the wait times are silly atm! Are you using any heat relief? Like a heat pad, hot water bottle, portable heated pad? Or a TENS machine? I've never found anything that totally gets rid and I'm on like 5 types of pain relief 😂😂 but making things more manageable is definitely doable with the right meds. Please ask for a referral to a pain clinic to try get your meds sorted, you shouldn't be left in agony xxx

[Kinz10 in reply to CryBaby91]

I have tryed everything but nothing seems to touch this. Been to drs now and they have prescribed me amitriptyline have you ever had this xx

[CryBaby91]

Yeah I've tried it it can be helpful! Everything is worth a try babe xxx

[Kinz10]

Thank you your an angel 😇

[ccfd9]

You have ligaments that travel past your ovaries and womb, which when your endo flares up causes these ligaments to tense and pull which can pull your back out of alignment. It may help to see a good Bournemouth trained chiropractor who will help put your back back and ease some of these back pains. However, you also need to think about reducing the inflammation. Have you thought about a nutritional approach? Dian Shepperson Mills is an endometriosis specialist and has helped thousands of endo sufferers, see endometriosis.co.uk

[Avourneen in reply to ccfd9]

The endo actually grows along these ligaments and needs to be removed via excision surgery.

[Kinz10 in reply to Avourneen]

Thankyou avourneen 😊

[Kinz10 in reply to ccfd9]

Thankyou. I have just coped up until now 🥲 but it's just getting to the point it's unbearable even off my cycles. I don't really like taking meds. I am only now learning about different things so I will definitely look into this. Thank you.

[Annabelannabel]

Sounds silly but I work physically too and found sports massage really helpful painful at the time but totally worth it the other side. Also not sure if your on anything but hormonal pills and that really help especially with period pain everyone is different. My endo consultant put me on dienogest and I have an implant aswell to try and suppress my endo as much as possible. They said i need more than just the impant. Go back to your consultant they are responsible for your endo care and say you need to get this pain under control us lot can't afford to be off work especially with cost of living crisis. I wrote emails letters voicemails when I feel really bad because they have a duty of care over me. Keep fighting no one deserves to suffer. Its hard to fight during a flare up so when you feel slightly better push them and keep a record emails letters etc. They can't ignore you.

All the best

Annabel

[Kinz10 in reply to Annabelannabel]

Thank you Annabel. I have always taken the mini pill due to suffering with migraines so the full pill has never been an option to me or the implant. They said about the coil but they would have to knock me out lol too painful. I do love a sports massage not had one for a while so IL definitely be trying this again. I should keep on but it's my own fault I always feel bad for ringing,but I'm going to have to change this. At the moment I'm only taking transenamic acid and meneforic acid been on these 5 years now and they ain't as effective as before but I feel they are better than nothing. I trialled a new endro drug last April but it made be so sick so that was stopped. Now they have prescribed amptriptiline which is an antidepressant not heard of many people using this x

[Annabelannabel in reply to Kinz10]

Hi I used to use the mini pill too for migraines I had both coils after that copper and hormonal. Anyone reading if you have endo do not use the copper coil its nasty! Worst three months ever. I have had two implants now and they have suited me the best out of the pill and coils. Never tried injections. My endo nurse said the implant wasn't enough to suppress endo and I'm on dienogest too. I do get some light headaches sometimes but generally this set up of implant and dienogest has got my pretty much period free which is one symptom of endo I've been trying to control for years hence why I've tried so many contraceptives. Contraception does generally suck anyway and if I didn't have endo I wouldn't be on anything and let my body rest for once.I'm on amitriptyline too those two pills including the dienogest are all I take now unless I'm in agony I take 500g of naproxen with lansoprazole but I try not to take anything that damages my stomach lining I try and let my endo take its natural way and take as little medication as possible. Amitriptyline I find okay but I've only been on it a month and do think it takes a good 4 months to see a medication settle. I got told dienogest would take 3 months it took 4 and a half to control my bleeding hard to be patient but worth it now. If you need to talk about amitriptyline pop me a message I don't know anyone else on it with endo.

Hope this helps

Annabel xx

[Meme31]

as someone kindly mentioned above, a nutritionist can help guiding you to reduce inflammation. Mine did and it’s possibly the most important help.

Also I use a shakti mat for back ache. It doesn’t have to be the super expensive one, I got mine for just over a tenner on Amazon. It is a bit prickly at first but within minutes it warms up and melts the pain.

On top of that, yoga and many gentle core twists definitely help.

[Kinz10 in reply to Meme31]

Thanks meme greatful for any advice and help. I will check out this mat sounds amazing thank you.

[Starry1977]

I have constant back ache, it’s not agony but constant and uncomfortable. The other month I kept get sharp pain bottom left . It would just happen then stop me moving as it was the type of pain you think if I carry on something will snap. It happened about 8 times in a few hours so didn’t move the rest of the day. Later that night I started bleeding. But generally I have a very tight lower back. It kind of feels like my ovary is attached to my left lower back and that the rest of my lower back is attach to my front. Like pulling . I have a lot scar tissue between womb and bowel so I’m thinking it’s related. I’m also getting aching legs and hips.

[ccfd9 in reply to Starry1977]

yes, the ligaments go from lumber 4/5 to the pelvis past your ovaries to your pelvis and when your ovary is inflamed it inflames the ligament which pulls on your back and pelvis with the result you know only too well!

[Starry1977 in reply to ccfd9]

Trouble is you never actually know if it is the endo or something else like arthritis. I'd constantly be at the doctor's like a hypochondriac if I mentioned every symptom lol

[Kinz10 in reply to Starry1977]

Sounds awful for you to starry 🥲 by all the advice it's attacks the ligaments. Which does make sense it's such an awful condition. I lose all feeling in my legs the other week left side I lost the feeling of my leg for about two weeks and that was during a cycle x

[BloomingMarvellous]

The main ligament for the uterus is three main fingers width … so if you either get inflammation connected to the uterus or along the the ligaments themselves it is going to have a major impact on the pelvic alignment /function and ergo your diaphragm’s position and places your shoulders under torsion. It can cause literal physical ‘corkscrewing’ through the body. That causes a lot of pain, undue physical stresses and immense disruption of the whole being as well as knocking the metabolism to shit . Spasming of the uterus will also cause increased discomfort throughout the whole body for the same reason. To be blunt agony.

Part of managing the overall distortions caused by endo is working on freeing the pelvic floor and diaphragm to sustain the core strength and help level out the metabolic chaos. Lots of traditional core training and kegels can do more harm than help, so important to address it in a gentle and supportive way. I found listening to the podcast by Leah Brueg ( link to website &blog on her Instagram @leah.Brueg ) with Dr Angie Muller. I think it’s either number 57 or 67 ( thereabouts anyway ) really informative. Dr Muller is a specialist physiotherapist with a specific understanding of how this all hangs together. It’s worth a listen to really hear the ins and outs of the issues and types of therapies to look out for. It made a huge difference to my pain levels and mobility when I got it addressed.

[Kinz10 in reply to BloomingMarvellous]

Wow thanks for the amazing explanation I have learnt so much by joining this group wish I had sooner I only came across it my chance. I will definitely have a listen to this !! Thankyou x

[BloomingMarvellous]

you’re welcome 😃. Part of the issue with treatments ( standard ones that is ) is they often only address the lesion and adhesion damage, which is way down the line and whilst absolutely necessary and essential for many of us ( thank god for well informed and great surgeons) isn’t the only part of the puzzle that needs addressing. Even when we remove both and suppress with hormone therapies it doesn’t always deal with the pain and ongoing issues. Understanding gives us tools to manage and other options to try and that’s really key. I spent a lifetime being told that the struggles I had were either “in my head” or were misdiagnosed. Thank goodness for my own experience as a practitioner as it saved my sanity- just - but having understanding is so so important so we can make fully informed choices.

[Kinz10 in reply to BloomingMarvellous]

Thank you so much I have had more sense out of you than any professional I have spoken to lol, but they do make you feel that your crazy that you don't want to go and see anyone so you struggle in silence. I find it's a hard condition to explain to,my bosses are all male and although great with me I feel I can't explain fully what's going on it's embarrassing and on shifts when I got to keep going off to the loo or I can't do something I usually do just hard. On that note I'm off to be a pin cushion now lol thanks for all your help x