Hello everyone, I come here looking for some help desperately. I had surgery booked to treat my endometriosis but after starting the surgery the surgeon ran into complications and couldn't actually treat me. I have been suffering for many years with pain on and off and it had always been put down to my PCOS with some a & e trips resulting in me being told its all in my head even. Finally I had been given a diagnosis of endometriosis and with surgery booked I could see at least a temporary end in sight. After waking from my surgery to find that absolutely nothing had been done in terms of treatment ( I have stitches so actually worse off) I broke down into tears. I have a 10 month old little boy who I struggle to care for as some days I can barely walk due to my pain, with the high dosage pain killers only knocking me out and masking the pain temporarily I'm trying to find other ways I can manage the pain or treat the pain myself as I do not want to be knocked out on painkillers all of my sons young life I want to try and live as normally as possible so if anyone has any suggestions of what helped for anyone, be it diet/medication or anything I would love to hear it. I have been told I could be waiting up to a year for a open surgery date as keyhole/ a lap is not an option for me so I'd like to try help myself manage without the highly addictive pain killers I've been put on.
Thank you for your time x
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Shels97
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I’m so sorry the surgery couldn’t happen, I find the problem with endo is you can feel really worn down by it all and gets so overwhelming.
My pain is managed by being on the pill, which has helped a lot but otherwise I try to stick to the typical ‘good habits’ of eating well, lots of water, exercise etc. I found drinking alcohol can make it worse (a boozy month means worse pain). In really bad times a hot water bottle, painkillers and doing something to take my mind off it is the best I can do - wish there was some magic thing to make the pain go away! Sometimes I also just need to allow myself to feel sorry for myself for a bit and then pick up myself up with motivation.
Good luck with a new surgery date - you’ve got this! X
That all sounds really horrible and so disappointing. You must have been devastated. In terms of pain, I find heated wheatbags a convenient and surprisingly helpful aid and no side effects.
I'd also suggest pacing yourself. If you're exhausted don't push it or you'll feel even worse the next day. Do what you can when you can and just concentrate what energy you have on your child, everything else can wait.
I'm also a strong advocate of the low fodmap diet which is an elimination diet you do for 2 or 3 weeks and helps sort out any food groups that might upset your endometriosis. My endometriosis specialist recommended it for me.
I'm very sorry for your situation which must be so difficult. Good luck xx
hi hun how's u doing today? I was diagnosed in 2005 and I have had every combination of pain relief you can imagine in 24yrs (too the point it eventually caused my immune system to fail and catch sepsis /encephalitis) because of this I decided to get off most of the meds I'm on. I'm currently on pregabalin 600mg & butrans patch 30mg (I've reduced it to 15mg against the pain clinics advice) aswel as cbd oil instead of paracetamol and I smoke cannabis for pain, I couldn't function properly on all the opiates as a parent or person not to mention they take 40+ minutes to actually work. opiates are highly addictive (thankfully sepsis completely knocked me out so I didn't feel the withdrawal). the pain clinics advice to me was that I should stay on the opiates and stop smoking cannabis? wtf? 😂 I can take a few drags and feel relaxed and comfortable in a few minutes, not high or sick, I can function as a parent and a person. smoking cannabis has also helped me with my anxiety and panic attacks (to the point I came off all anti depressants) in my opinion it should be legal 😂
hopefully you find what works best for you, I understand what it's like to be a parent and in so much pain that you can barely move, if you would ever like to talk (coping strategies or just to rant) please pm me 😊xxx
Hello, thank you for your reply. I'm sorry you've had such a hard time but I appreciate you taking the time to share what helped for you. I have read on a few occasions people recommending cannabis the only thing that has ever stopped me since having my son is the fact that it's not legal and often mothers are looked down on for using it even though in my opinion I would be able to cope a lot better caring for my son on a small amount of cannabis than the high dosage of pain medication I'm on currently. However, being seen as putting my son in danger is a big fear of mine due to childhood social worker issues so sadly I don't feel I'd be able to give it a try. I have tried CBD oil and that didn't help me personally. Really I feel having a couple of puffs should just be seen as the same as having a glass or two of wine! But for some reason weed is the enemy in this country! 🙄 x
It took me years to find the right specialist to manage my endo and adeno pain. I would go to my gyno but only get prescribed hormonal solutions which didn’t work or did work but the side effects were horrific. I got pain relief from the Zoladex injection for a few months but as it’s a medically induced menopause my body felt weak over time and I was sweating non stop. I couldn’t cope being on it after four months, I felt like a fragile old woman.
I ended up going to a pain specialist and finally got relief. She prescribed two medications: Amitriptyline and Norflex. The first relaxes the hypogastric nerve which is connected to your uterus and also serves your bowel and bladder. The second is a muscle relaxant to assist with a tight pelvic floor. In the four weeks I have taken these my pain has decreased significantly where I can manage it with over the counter pain killers and some days I’m virtually pain free.
Diet wise, I eat simple food and avoid dairy and white carbs - as these bloat me and cause pain. I don’t drink alcohol because I have a sulphite allergy which started when I first got diagnosed. It’s my belief there is a link but I can’t be sure.
Sometimes even a gentle self massage on the belly with lavender oil takes the edge off it and just relaxes the area.
Hot baths are great as are warm water / water rehabilitation pools.
You sound like a wonderful mother. Hope you find relief soon.
PS. I’m in Australia, Melbourne - happy to share the details of the pain specialist if you happen to live here.
Thank you for your reply. I am in the UK I'm afraid but will definitely look up our equivalent to some of the things you've mentioned. I am hoping to do some research and then return to speak with my gynecology team about what would be a good option for me as all they seem to do is give women a coil and send them on their way here.
Hello Dear, I have had endometriosis for 25 years. It has caused me major depression. I have had depression and anxiety. During this time I have used paracetamol/with and without codeine, hot water bottles, sleep, and pill, in 2007. I had a laparoscopy to remove endometriosis & chocolate cyst ovary, I would say there was an improvement after this... But the pain returned when I took the pill and it took 5 yrs to fall pregnant. I had 2 children, 2012 & 2013. After I could no longer stomach the pill. It gave me severe nausea/vomiting (very much like morning sickness). So I haven't used birth control since. The pain has returned in full, I have stumbled across something. I wish I had 20 years earlier. I started using Melatonin for sleep... I noticed something dramatically different when I took it during this period. It helped with the pain! I have been able to take less Panadol since and I haven't had to use the combo of Panadol/codeine since you could say melatonin has now taken the place of codeine. I hope it will help a little to get relief from pain….
Hi, I hope you manage to find a combination of different strategies that work for you. I found diet made a big difference to my symptoms. For me wheat, sugar, processed foods and caffeine made the symptoms worse. Focusing more on anti-inflammatory foods with lots of fruit and vegetables helps. I also use some homeopathy and find this useful too. I know some people find acupuncture good for pain - it's just finding what works for you. Good luck.
I’m currently waiting to see the specialist but I was diagnosed with endometriosis before I had my kids in 2015 so I am pretty certain that it’s just come back again.
Because of my medical history I cannot take hormones or the mini pill etc
So they just prescribe me strong painkillers to take to manage the symptoms ;it’s not ideal because like you said it’s not the best to take strong pain killers when looking after little ones)
So like you I have been researching options and I’m trying the low fod map diet
Feel free to send me a message and let me know how you. Finding it if you do try it xx
Hi thereI'm in the same boat as you first diagnosed with pcos then later to find it's endo as well as the pcos.. Great!
I agree that wheatbags are a savour but I have 2 on the go as they don't stay hot for me and i even tuck them in my trousers if I have to get up and walk around the house . I literally burn my skin sometimes to get the relief of the pain.
I use the deep heat - heat pads if I have to go out or am at work, they stick onto you and warm up for over 8 hours or so. Ibrofen gel is another one I use in between popping pain killers.
Like you after a long journey I was also fortunate enough to have one child but
I think the hardest part about being a mum and suffering with what we do is that they are too young to understand what we are going through. My daughter is 3 and some days thinks its funny to jump on mummy when she's in pain. It's not their fault but it can be very hard and sad to try and do normal mum everyday tasks when you are in so much pain.
Also I do agree with not overdoing it, does seem to catch up with you. I don't know about you but everyday tasks and busy schedule can wipe me out and that's days without pain.
I think with pcos side stay away from dairy completely if you can. Low gi diet good for pcos but low fodmap for endo and no red meat. Generally find going for wholefoods, plant based and unprocessed
Good family support will help you too but it can be difficult when people close to you don't really understand.
I hope you can find something that will help you. You aren't alone xxx
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