Has anyone else felt so low they don't know what to do anymore due to pain and not living their life due to this awful illness?

[Rockandroller92]

I know we are all struggling in our own way but after another week of not knowing why I am in so much pain and collapsing at work infront of people and children I just don't know what to do anymore. I can't stop crying I feel useless and a burden to everyone.

[Hayayaya]

I feel like this. You wake up, pain. You sleep, pain. It’s there all throughout the day and let’s be honest, no one really understands us. It’s so lonely as well. The pain mentally and physically drains you, to a point where you don’t know what to do.

A few people on here have mentioned a pain clinic...maybe have a look into this?

Also maybe speak to your GP about the pain and how you’re feeling...they may be able to prescribe stronger pain killers.

If we can tackle the pain, I feel like we will get rid of the constant drain it has on us. Let me know how you get on!

[Rockandroller92 in reply to Hayayaya]

Appreciate your response and ideas. Its so frustrating when people say you will be fine soon, or are you still sore and tired and also saying do something fun like climbing or decorating etc and it's like yeah I want to but can't!! Xx

[TennisAM]

I've had so many moments where I felt the same way. The constant pain and insensitive comments from those that don't understand, can take its toll.

Can I recommend a book. Its called The Happiness Trap by Russ Harris

I used to get upset and feel frustrated about pain etc. I used the following book to help me accept my situation and change what I can. I used to wake in excruciating pain at 4am daily and couldn't get back to sleep. After observing my pain daily for 3 weeks, I had high pain again at night. I woke 5 times at night in pain, each time I thought "this doesn't matter" and went back to sleep within minutes.

What have you tried to reduce the pain? Have you tried anything natural?

I was prescribed Etoricoxib (60mg) by my GP, its a NSAID (needs to be taken with Famotidine/omeprazole to protect the stomach) for arthritis pain but it works great for endo pain and one tablet is good enough for me. My pain can be very severe. It has a half life of 22 hours so will provide pain relief for up to 22hrs after taking it.

x

[Rockandroller92 in reply to TennisAM]

Hi thank you for your response. I found that book yesterday so have ordered it along with a couple other books.

I am on diclofenac just now since last week as had a suspected ovarian cyst on left ovary, provera (HRT), tramadol when it gets bad, omeprazole, fibergel and buscopan. I have also started using a tens machine and deep pelvic breathing. Fair concoction to still hardly help the pain. I think maybe the provera is causing me to get even more emotional as started them last month and have noticed a change in my metal state but I don't know if its the pill or just the mental strain of being imprisoned in my own body.

The doctor on Monday after collapsing at work ( I work in early years) I told them how useless I feel and that my whole life is on hold. Can't go out and meet friends and family, recently bought my own house that I cannot decorate as I get out of breath so easy and then the next day my body attacks itself, I cant be intimate with my partner and can't go to work and I love my job. Every positive in my life is pushed aside due to this. This caused me to have a break down on Monday night and I actually scared myself and couldnt stop crying. I really think I have endo of the bowel or another organ as I always have bowel problems, urine problems and pains where kidneys and Appendix are and sometime down my legs and my groin hurt too.

My partner has started thinking I could have autoimmune as well, but will have to see about this next time I see gynae for my op which has been moved up so hopefully not long. If things continue even after the lap I am seriously thinking of going private.

Sorry for the massive speel!.

Much loves and hugs x

[TennisAM in reply to Rockandroller92]

Hey, no need to apologise. It's important to share how you feel. I know what you mean, I felt very low recently too.

If you can take a NSAID, worth asking for Etoricoxib with omeprazole for your stomach. It can work well.

Did you have any luck with the doctor you spoke to? I hope you have a good medical team?

Have you tried anything natural to reduce the symptoms?

[Rockandroller92 in reply to TennisAM]

I really can't thank you enough for the time you have gave me. My doctor hasn't been the best support to me its always stress with him. I've been on so many different meds and nothing seems to work for long. I don't have a medical team either. Living in a small North East town of Scotland there isn't much support mechanisms or enough knowledge in place.

Do you know how I could get in touch with any endo specialists to ask for some advice and get information on what I can take to help me ?

Thanks so much again and I hope you aren't hurting in mind body and soul. Sending hugs xx

[TennisAM in reply to Rockandroller92]

I am sorry to hear your doctor is not that helpful.

I think it might be worth spending 200ish to speak to someone privately. You could pick someone from the bsge endometriosis centre website if there is a centre in Scotland. Particularly if you're willing to travel if you need an operation.

If you are unlikely to want surgery then I'm happy to send you the details of my consultant who is fab. He should be able to help you with the right meds. Guess you can ask him to recommend three choices so then you could try one, if that doesn't work, try the next etc etc. So you don't have to pay for another appt quickly. He is in London but I know he does telephone consultations. Will send you a message with his details, you'll just need to get a referral letter from your GP to see him and any copies of scans/tests.

Hope that helps

Hugs to you to xx

[Rockandroller92 in reply to TennisAM]

Sorry another thing I meant to mention was I have lost nearly 2 stone without even trying in the space of a month, is this something I should be concerned about as the doctor I seen at a and e last week pretty much dismissed it, they also dismissed the emotional turmoil xx

[TennisAM in reply to Rockandroller92]

2 stone is 12 kgs that's a lot. Hopefully there's a dietician you can be referred to locally. Also a Gastroenterologist would be helpful.

Do you have any bowel symptoms?

[Rockandroller92 in reply to TennisAM]

I am sorry just getting to you now. Ended up in hospital as the pain was getting scary. I am getting a lap soon thank goodness. Yeah I have bowel and bladder problems but don't know if its due to the inflammation or if it's endo on these organs. Really appreciate the kindness and tips you give me, thank you so much xx

[TennisAM in reply to Rockandroller92]

Hope the lap goes well. Let us know how it goes x