I was diagnosed with endometriosis and adenomyosis a couple of months ago through scans after years of suffering. I am yet to have my first laparoscopy and I'm having to hound the hospital to put me on the surgical list which is far more troubling than it should be! Lately I've been really struggling with pain and nobody is able to help as the doctors cannot do anything and the hospital won't get back to me. I'm having constant pelvic and back pain, awful fatigue and sleepless nights, my anxiety is also through the roof as well as really bad mood swings. To top it all off I'm now also having trouble passing wee and have to wait a while before my bladder actually let's the urine go and my breasts have started really aching.. Not really sure what's going on or what I should do now? Feeling very alone right now, sorry for the long message just need some advice..
Ella xx
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ell_t18
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Oh bless u that sound awful. What about your GP? My GP does all my pain relief not the hospital. Are u on Facebook? If so there are some great endo & adeno support groups on there as well. If u are ever down they are always there x
My GP is really interested in endo but I'm not sure if she will do pain relief, I'll have to get back in touch with her and try different things as codeine just makes me feel so ill and out of it. Thank you so much for your reply x
First of all, I am really sorry to read of your suffering as I'm in a similar boat. I've also been diagnosed with endo and adeno awaiting a hysterectomy in three months. The chronic pain is very difficult to live with and I would suggest finding a good GP in your practice with an interest and understanding of this and relieving the pain. Luckily I have found a GP who has tried me on a new painkiller called Acupan (I'm also taking ibrofen, buscopen, norethisterone and intermittent paracetamol) which makes me feel better than taking Tramadol and Cocodomol. Ask your GP to do a letter to your specialist to speed up your surgery. Are you being seen at an Endo Specialist Centre? I would highly recommend this. The pain I experience radiates down my groin, legs and round my back as well. I am exhausted with a capital E. The most relief I get is sitting with feet elevated although I know how important it is to keep moving around and keep pottering on. I seem to be sleeping for hours on end missing this beautiful sunshine which is a crime!
Have you got some good emotional support from friends/family? This is needed at times like these however, many people struggle to understand what's going on. I have found this site to be helpful in finding others who can truly empathise with what's going on?
Please try and do what you can and manage the pain as effectively as possible.
Yes my GP has been really helpful, I actually have 2 GPs that see me regularly as their both so interested in endo and adeno! I definitely need to talk to them about managing the pain again and see what they can do, as I'm in cocodomol at the moment and I hate the way it makes me feel. Yeah my GPs have written letters and been phoning but still got nothing back and it is an endo specialist as well which is why I don't understand why they're taking so long!
My family and friends are supportive but they just don't understand, they try their best and I really appreciate everything they do, it's just so nice speaking to people that actually feel the way I do, I don't blame them for not understanding why I'm always so drained and why I don't really go out that much, it must be hard on them too! It's all so new still and confusing, so thank you so much for your reply, it means so much x
First of all, I am really sorry to read of your suffering as I'm in a similar boat. I've also been diagnosed with endo and adeno awaiting a hysterectomy in three months. The chronic pain is very difficult to live with and I would suggest finding a good GP in your practice with an interest and understanding of this and relieving the pain. Luckily I have found a GP who has tried me on a new painkiller called Acupan (I'm also taking ibrofen, buscopen, norethisterone and intermittent paracetamol) which makes me feel better than taking Tramadol and Cocodomol. Ask your GP to do a letter to your specialist to speed up your surgery. Are you being seen at an Endo Specialist Centre? I would highly recommend this. The pain I experience radiates down my groin, legs and round my back as well. I am exhausted with a capital E. The most relief I get is sitting with feet elevated although I know how important it is to keep moving around and keep pottering on. I seem to be sleeping for hours on end missing this beautiful sunshine which is a crime!
Have you got some good emotional support from friends/family? This is needed at times like these however, many people struggle to understand what's going on. I have found this site to be helpful in finding others who can truly empathise with what's going on?
Please try and do what you can and manage the pain as effectively as possible.
As others have said try your GP. I have found hospitals are too in organised and overworked to deal with stuff like pen meds. GPS can recommend all sorts of things. I had trouble sleeping due go pain and anxiety so I take a low dose anitdepressent which works on the nerve pathways to make the body think it is in less pain but also make you sleepy.
You may need to experiment a bit with what you are on too. I find that if I take two tramadol like the dose says then I run out 2 hours before I can take more. However if I take 1 I can take them every 4 hours and be covered constantly without overdosing.
I have also been through several million different anti-inflammatories until I found something that works, so maybe you just need to experiment a little.
It sounds to me like maybe your anxiety is making things worse too, stress really screws with me and makes everything so much worse! Try not to panic too much, you don't have control over this and that is a damn scary realisation; that despite all the care / hair dye / salad that we use, we aren't really all that in control of this squishy body thing...
There is only so much you can do in this situation and you need to be kind to yourself :)! Consider an alternative therapy like massage and take time for yourself where you can. Massage can really help relieve a lot of the stiffness and tension and I find it takes the edge of that mental fatigue as well as soothing stress.
Thank you so much for replying, yes I'm going to get back in touch with my GP as she is really interested in the reproductive system and has been so helpful! It really is all about trial and error so I will definitely try some new things. My anxiety is definitely making things worse, I completely understand as when I'm stressed it really does affect my body! It's just still so weird not being in control and not having a cure for this, I'm still getting used to the fact this is forever! Yeah, I was looking at reflexology and things like that, which would hopefully help a little , I'll definitely try massage. Thank you again
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Feeling cheated
Feeling so guilty
Worried🙁
Feeling hopelesss
1st laparoscopy But worried about fertility after op. 
