I need help: Waiting on a laparoscopy but... - Endometriosis UK

Endometriosis UK

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I need help

saint_ellen profile image

Waiting on a laparoscopy but they can’t tell me how long the wait will be due to covid. I’m losing the will to live. The back ache, tummy ache, the burning sensation in my back, constipation, bloating and swelling. My lower abdomen is now hard to touch, I’m finding it hard to finish my meals. I take painkillers most days. It’s so painful I either can’t sleep or when I do eventually fall asleep it wakes me up a couple of hours later. I feel like I’m screaming for help now but no one is listening. Has anyone else got these symptoms or have any suggestions on how to manage them?

19 Replies

hi hun how's u doing today 🙂 I'm so sorry to hear that ur suffering, I unfortunately understand what ur feeling, I've had issues with my periods since 13 and diagnosed with endometriosis since 05, in total I've been past from piller to post for the last 24yrs. I suffer with the same symptoms (and some others 😂 I've a long list on my profile) it's ridiculous that ur made to wait when ur clearly suffering 🙁 I can offer you a few tips that will help? senna is natural and available over counter as well as on prescription and will help you with the constipation that the opiates have caused. if ur using Ibuprofen regularly I hope the Dr has put u on a stomach protectors? unfortunately I got 3 peptic ulcers from using Ibuprofen for yrs without a stomach protector, if not then take with food until u can speak to ur Dr.

I'm in the same boat when It comes to sleep, pain wakes me several times a night, I'm always exhausted to the point of I have to have a nap mid day just to be able to cope with the rest of the day (Im waiting to speak to my GP about prescribing me a muscle relaxant?)

I hope you get the help u need hun but if you want to chat or rant plz pm me, it's nice to speak with ppl who understands ur pain 🙂xxxxx

Hi lovely, thank you for reaching out. My GP hasn’t said anything about the ibuprofen so thanks for mentioning that I will check up on that. I’ve just been to get some co-codamol in the hope it takes the edge off more. That’s what the GP recommend after I mentioned that the ibuprofen wasn’t having a massive effect. More than anything I’m feeling so fed up and frustrated and to be quite honest p*ssed off with the NHS. I’ve also been in this boat for 15 years, PCOS already diagnosed at a young age; asking for help for years, more so after my mum died from ovarian cancer when I was 19. It’s only now at the age of 30 because I’m having fertility issues, the endo has been discovered. Before then the conversations were always ‘you’re young’ or ‘period pains are normal’ or ‘the risk of ovarian cancer is small’ or ‘come back when you want kids’ 🙄😭

😂 Yeah tell me about it, I hear it constantly when speaking with the Dr's or hospital, I'm 37 I have 3 beautiful children and my tubes tied I requested a hysterectomy and was denied? wtf? I smoke cannabis for pain and use cbd oil instead of paracetamol I'm aiming for more natural pain relief 😂

I was actually considering CBD oil! But I would have no idea where to start 🤣 just need a good trip to the Dam that will sort us out haha xx

😂 😂 🤣 I got mine from amazon but u can buy it in pharmacy. the pain clinic refused to prescribe it, she said I need to stop smoking cannabis as it was more dangerous than opiates?! wtf 😂 🤣 I could do with a trip to the dam too 😂 🤣 🤣

Firstly I believe I have IBS and have consitpation. I am taking laxatives which is helping me but what is the best medicine is doing My Nichiren Shoshu Budddhist practice, the doctrine is The Lotus Sutra, chanting Nam Myoho Renge Kyo. This practice is helping me because it is not outside of my self and makes me understand why I am suffering and how I can lessen that suffering and get through this obstacle. Please look into this Buddhism not just to get rid of your IBS but for your life as a human being.

saint_ellen profile image
saint_ellen in reply to Beempty

Thank you kindly, i am always open to anything that will improve my situation ♥️

I’m so sorry you are going through this, my 19 year old daughter is going through the exact same thing. We are waiting to see a new gyno that hopefully specializes in endometriosis as we think she has it but it hasn’t been found. Have you had a IUD or Lupron shots? What about CBD oil for the pain. Please talk to family members or a friend and try and hang in there. I know how hard it is as I watch my daughter everyday. I hope you get help and figure this out. Take care of yourself

I’ve not heard of either IUD or Lupron shots, I will look into it. I’m currently going through fertility treatment also so that may have something to do with it! Xx

Yes research and ask a Gynocologist about it Good luck

Lots of nutritional changes can help to ease the pain and look up The Endo Life for more detailed info.

Cutting caffeine has helped my bladder symptoms. Having an anti inflammatory diet has helped my stomach c and d. I introduced better foods and felt better and so I can keep going as I was desperate too.

When desperate I take diclofenac 50mg suppositories and it protects your stomach.

I use CBD oil twice a day.

Various supplements help me too.

You can try things to ease the suffering like meditation and yoga (can’t cope without it now) and we are all so different.

Hope you find something that works for you 💛💪🏻 You got this x

saint_ellen profile image
saint_ellen in reply to 635703

Thank you for the advice! I have CBD balm which I rub on my back and stomach but was thinking about investing in some oil too xx

Would definitely recommend the oil. Can't take it during the day because it makes me so drowsy but when I can't sleep with the pain it's a godsend. I get terrible insomnia with the tramadol too and it also counteracts that. I have a CBD pen that I take during the day and it works pretty well when combined with meds. These don't do all that much solo but really help take the edge off when prescription meds aren't enough.

hi hun how's u doing, May I ask what is you've changed in ur diet? I'm not sure I could use it 😂 I weigh 42.5kg so depends on what you have to cut out? I also use cbd oil instead of paracetamol but I also smoke cannabis for pain and since using it I've cut out opiates😊

I use lactose free (85p in Aldi) milk or plant based milk like oat or coconut are my favourites.

Stopped having gluten free bread as £3.70 in Co-op/£3 if on offer at Morrisons, as swapped to oatcakes as also way cheaper. 55p a pack from Aldi.

Cooking from scratch where I can, depending if I get a food parcel delivered from The Council. Reducing processed foods like vegan burgers from Aldi, but not feeling bad if I need to use them. They’re often on offer. Upping the veg intake.

Snacking on raw veg, carrots, cucumber, peppers.

I got some nut bars from the social Supermarket and they are really good. Maple and pecan and the brand is Kind - keep them on me if I go out, when blood sugar crashes 🙄

I use Dr Axe anti inflammatory juice recipe, when I can afford to juice. (Pineapple, cucumber, celery, spinach, ginger, lemon). Doesn’t go down great but my body loves it - can feel the goodness rush hitting me - it’s really good 😊

Upped my water intake loads.

Trying to get 8 hours sleep and reducing stress and using breath work to control my mind.

Honestly just trying stuff and seeing what works for me.

In yoga we learn about breath work and so I have a lot of simple techniques in my toolkit - I thought it was just stretching, but I was very wrong. It’s taken me ages to get it……

Everything is connected for us with Endo - sleep, gut health, inflammation, hydration, nutrition, and lots more I don’t know about.

But I just feel so determined to search out ways to make my body and my mind and my life feel better. Something is working and I have been stuck for so long, so happy to share. Any questions, DM me 😘 with love 😘

Hi. I put myself on an exclusion anti inflammatory diet to help manage the pain and emptying myself several times through the day. I removed: gluten, dairy, soya, chocolate (contains both milk and soya)caffeine, apples, brown rice, tomato purée. I am not starving and eat normally, practically the same meal as my family. I have gluten free bread, pasta, cakes. Also coconut milk as it’s an anti inflammatory, decaf coffee, potatoes, sweet potatoes, rice with quinoa. I have reduced red meat and avoid processed meat and food. I also take magnesium Biglycenate and vitamin D to remain calm and give me the energy, to better sleep too. It is not a diet to lose weight, just to reduce the pain and inflammation. The 3 main culprits are gluten, dairy, soya. It didn’t cure my problems but I was not reacting so badly to food. Bucospan could help reduce the bowel inflammation a bit and/or rubbing Ibulieve gel on your stomach. X

tbh that sounds horrible 😂 I've been struggling with my weight, trying to gain some for the last few years, I'm not sure where I'd get my calories from? I also use devil's claw, it's a natural anti inflammatory but hey what works for one won't always work for another 😊

635703 profile image
635703 in reply to Anastasia17

You can use castor oil and this helps if your constipated or bloated.

635703 profile image
635703 in reply to 635703

Castor oil and run it gently on your tummy before bed. In old pjs as it’s greesy. Works by the morning for me….usually quite soon after I wake.

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