Any tips for endometriosis pain?!

[Sarahvk95]

Hoping someone has some tips for pain relief for me! I had been suffering with lower back /pelvic pain for almost a year and I was referred to a gynaecologist who recommended I have a laparoscopy to determine the cause of my pain. Since then I have been diagnosed with endometriosis and I also had some adhesions which were treated while I was under for the procedure. The pain did initially subside, but I am now just over 2 months post op and the pain is returning with a vengeance! Needless to say I am upset the operation hasn't helped much. I'm taking prescription strength cocodamol and ibuprofen almost on a daily basis and the doctors can't suggest any alternative for relieving me of this pain! I have an active job which the condition is really starting to interfere with and I just need some way to ease this awful pain! 😭 Im also quite worried about possible fertility problems I might have in the future, although it will be a couple of years until I wast children to appear, I don't want to wait too long and scuppor my chances 😕 anyone have any words of advice for me with these issues?? I'd be very grateful 👍

[Catness]

I would really look into diet and lifestyle. Following the endo diet has been proven to help many of us with pain as well as bloating and fatigue. The endo diet is intense but worth a try. The book I always recommend is Carolyn Levitt ‘Recipes for Endometriosis’. In the book she goes into the science of the endo diet and how people with endo are sensitive to things like gluten, soy and sugar.

I also changed over all my sanitary wear to organic cotton/ chemical free (Sainsbury’s have just started stocking a brand called Yoni in my local shop, or there is a brand online called &sisters which is also good. This has improved things a little too.

I’m also doing yoga every morning to try and help my back as that is my worst symptom by far - never ending back pain!

Xxx

[Purplecard]

Sorry to hear your in pain I have been pain free since my first op having been placed on the zoladex implant but before my surgery and full diagnosis of severe Endo i was in so much pain. Although I have no advice on medication for pain relief i believe meditation is meant to be good as far as the mental impact the pain can have on you. I did use regularly a yoga ball as I sometimes found rocking back and forth on it helped whether this was more a distraction I am not sure. I really hope you can find something that will help with your pain.

[BNatalie]

I’m sorry to hear your pain has returned. I went through a surgical removal operation myself 4 month ago and found my pain was slowly returning 2 month post op, it is only now going back to being severe/unbareable. A body length hot water bottle sometimes helps me on a night time. My doctor put me on tramadol for my pain as I’m the same as you, with an active job. I have also recently asked to change my contraceptive pill, to see if this makes a difference. It hasn’t as of yet but I’m sure you’ll be willing to try anything given the amount of pain this condition causes! I truly hope you get sorted.

[RJS626]

Sorry to hear how much pain you're in. In terms of non-drug pain relief, especially to help keep you moving at work, I know you can buy heat patches cheap at least online that stick on like a plaster between clothing which are supposed to last for hours and hours. So this is supposed to have the benefits of a hot water bottle/heat mat while being as discreet as a plaster.

Also, there are lots of really positive reviews out there for tens units (among women with endo in particular) which would be worth looking into. You can buy cheap wired ones to try out initially but I think it would definitely be worth the extra money to buy one of the wireless units if you find they reduce your pain to use under clothing for pain relief at work. (I am at early days with mine so tentatively saying that for me, yes, pain can be reduced while I am on the go!)

Otherwise, I can't particularly think of alternative pain relief which will have a painkiller effect of lasting for a certain amount of time independently. I also see very often that people find following certain dietary choices and keeping active can really make a difference. Take a look at the 'Pain management' topic section and type in any key words like supplements or tea or anything that comes to mind that you'd be willing to incorporate if you see enough recommendations for it.

Hoping you find some relief soon x

[elisepalmer71]

Hi Sarah. Take a look at my post on information and advice on pain relief and get back to me if you need more advice. I’m sorry you are suffering with this pain. You can try a hot water bottle (or several) if you haven’t already. You aren’t alone and we are here to help and support you. Take care. Blessings. Elise x

[PCollind]

After trying various remedies have found application of lavender essential oil in a carrier oil extremely helpful along with meditation. Inhalation itself is quite helpful. Please give it a try.

[Sarahvk95]

Thanks for all the suggestions guys! I live on heat patches and hot water bottles atm and iv increased the level of exercise I do so I think I'm gna try the tens machine as my next thing, but I will deffo look into this endo diet too, not my strong suit giving up sugar but hey ho, small price to pay to be pain free 😂

[Hidden]

Hi, sorry to hear you are struggling. I also have back/legs issues with my endo as the deep adhesions are on the ligaments and possibly nerves. Have to take tramadol at night to get sleep, but tend to avoid during day as so strong and instead take codeine. If your endo is impacting the nerves you can try gabapentin/pregabalin which work more on nerve symptoms. They didn’t agree with me (very weird hallucinations within days of taking) but have heard they work well for other people.

For non drug approach - I have regular deep tissue massage with a lady specialising in myofascial release to help release the constant tenseness the pain puts my body into. Have also had acupuncture which helped to varying degrees. I have salt baths to help the leg and back pain when bad. My husband found a full body pillow for me which is great to give support for back/legs when I am in flareup so I can get into slightly more comfortable positions and also have found a hot blanket on the bed is comforting alongside hot bottles.

Am now a month into a zoladex trial which has now stopped periods but have had some pretty crappy side effects. Started hrt on Tuesday so fingers crossed the trial settles down soon and I can let you know how it goes if you want.

Hope you manage to find something that works for you soon

[Butterflyblubum]

This is very similar to an experience i had. *long post sorry* After 10 years of pain and being told it was in my head... a lap finally diagnosed endo. After op, pain never totally went but improved, however this was only for a couple of months then it began building up again. Within 6 months it was back to it's usual full force. The gynae at the time said it was ridiculous, wouldn't happen and I shouldn't need any pain relief other than panadol!!!

Over the years I've neen messed around like hell (by Drs that think they know about endo) and tried all sorts of drugs to help. The worst experience ever was being put on duloxatine for my crippling back pain. It's supposed to work on neuropathic pain.... messed with my head terribly, the worst part was coming off it, I needed to wean for weeks, I withdrew and was almost hospitalized as I was suicidal. Very very scary time- previous to this I had no mental health issues or significant depression. I have tried endep and it did work temporarily but then stops it's effectiveness- didnt like being on this either. Tried tramadol but as it also effects seratonin it wasnt good for my brain and caused anxiety. At one stage pain so severe I tried morphine patches.... made me feel nauseated and I couldnt get over feeling like a druggie. Mersyndol forte was good as has a mild muscle relaxant in it. Can no longer get normal Panadeine or neurofen plus OTC- sux. Voltaran suppositories ok but leaking the oil at work is not pleasant.

Along with endo I have severe GORD gastro oesophageal reflux disease, IBS, chronic thrush and intermittent lethargy.

I work in a busy job that is both physical and mentally challenging.

I have a husband and 4 children. Thankfully my husband is a supportive gift grom god to me!!!

After all these years of absolute hellish pain I get quiet anxious and depressed at times- not on any meds for this.

I take various anti-inflammatories but carefully as my reflux is so bad. Also take Panadeine forte or Endone when pain flares.

No analgesia fixes my endo pain for good, it just helps me get by and pretend to be normal so I can function- try to be a good mum, try to be a good wife and go to work.

Seeing a new specialist in a few weeks.

Xx

[BNatalie]

I have the exact same symptoms as you, I take tramadol, paracetamol and mefenamic acid (it’s an anti inflammatory.) I can’t say they ease the pain if I’m honest but my gynaecologist said we need anti inflammatory medication for our condition. I use adhesive heat pads from amazon and stick them under my uniform in work when I’m having a flare (which is atleast weekly) and I have a long hot water bottle (again amazon) on a night time in bed. I really hope you find a way to relieve some of the pain soon. It truly is horrendous. Much love 💪🏼💛x