Feeling lost with it all....

[Littlebirdy34]

Feeling so fed up with it all at the moment, negative lap in early March, 2nd opinion a couple of weeks ago which was pointless. Was first told I would have been checked everywhere despite my letter just saying my uterus, ovaries, tubes, liver and appendix looked fine. When I asked what could be causing rectal bleeding when I have a period she then told me colorectal might find it on my bowel when I have tests with them (so contradicting). Am currently waiting for a colonoscopy, hormone level results and a referral to urology regarding my bladder issues. Starting to think I should just put up with the pain and bleeding as it's now becoming the norm. Sorry for ranting, just always helps if I right it down

Thanks for reading x

[weekari]

Ugh, I'm so sorry this is so much of a struggle. I can totally relate to getting nowhere with the medical investigations. I had been referred all over the place, had a lap that found nothing 2 years ago and just got diagnosed with severe endo last week after an mir looking at my hip & back pain. In those 2 years between my lap and diagnosis I felt like I was abandoned by the medical services but I got some fight in me and looked for other approaches. I knew there was something 'wrong' but I just didn't know what. I trusted that my body was trying to tell me something so I thought try different approaches to see if I could better understand. That's led me to get input from Chinese medicine, acupuncture, a chiropractor, reflexology, reiki, lots of restorative yoga and other weird and wonderful things. All of this has been so helpful and had left me with so many skills and resources to help me cope. I'm by no means symptom free but I can cope better with it. Now I'm being pulled back into the medical world again and I go with a lot of hesitation. I know it's not the only approach and I'll be careful about what I accept treatment wise. I won't reject a medical approach but I'll certainly be open to other ways of looking at it all.

Just because the medics aren't helping you, doesn't mean you need to just give up and accept this is your life. My advice is to try trust your instincts (and it may take a bit of reflection or meditation to really get in touch with what your instincts are) and to try some different approaches , Even if you're sceptical. I was so sceptical, especially with things like reiki but it definitely helps me. Even if it's just helps because I'm lying in a nice room with a kind lady being nice to me for 30 mins, if it helps me cope, it's worth it. I try to just trust it all a bit more.

I hope you find something that helps you. Xx

[Littlebirdy34 in reply to weekari]

Thank you for messaging, I'm just so frustrated with it all. All the waiting and then having to explain everything all over again with someone new is just exhausting me at the moment.

You're right that I need to take myself away from the situation and almost break it all down so it's not too much to handle all at once.

I've had a lot of appointments recently, there's stuff going on at work and life is just so hectic. This and a 2 week painful break through bleed has just wiped me out.

Really appreciate your reply and I'm going to keep your journey in my thoughts. I will get there in the end x

[weekari in reply to Littlebirdy34]

It totally sounds like you just need to focus on your own well being just now. Give yourself a bit of space and a lot of self care. It's traumatic going through all this and we need to stop now and then and give our mind a chance to catch up. I recommend lots of sofa & netflix day, spa day, cuddle furry things day... Or whatever it is that would help you just go 'ah' 😊

[Hidden]

Your situation sounds like so many and it’s true that you really need to say to yourself, I need ME time, & focus on you. You have to be determined & very persistant in the pursuit of getting the medics to pay attention. I knew something was wrong with me but it took me 8 years to get persistent. Whether the total hysterectomy will resolve my problems remains to be experienced. But the fact that I was never diagnosed with endometriosis has me hoping I the surgeon got it all!

Don’t give up, be determined.

[Littlebirdy34 in reply to Hidden]

Thank you x

[Nikki84]

Hi,

When you had your lap was it done by A gynaecologist or a endo specialist.

If it was done by a normal gynaecologist a lot of the time they don’t know what they are looking at when you have your op, NICE have brought out new guidelines to help women get diagnosed quicker, you can ask to be seen by a specialist or many ladies find going private gets them diagnosed quickly.

Hope this helps, keep fighting, if your body is telling you something is wrong then listen to it.

I have been suffering since the age of 11yrs and was always told nothing was wrong and it’s all in my head, I am now 33yrs old and was diagnosed early this year with stage 4 advanced endometriosis. It has cost me my fertility and I am waiting for major surgery were I have to have a bowl resection and and have a bag fitted for 3 months and then more surgery to reverse it. I am shit scared, they have told me it’s very risky dangerous surgery and I will be in more pain after surgery than I am now, I never thought the pain can get any worse, I have been bed bound for the past 2yrs on a morphine patch and lots of other drugs, the worst part of all of this is that it has cost me my fertility, and the funny thing is that is was my private fertility doctor that found it all after years of being told it’s normal and all in my head. You should always listen to your body and remember doctors are not always right, you have to become your own expert on your body, print the NICE guidelines out off the NHS website and take them with you to see your GP to make sure you get referred to the right place.

Sorry for the long rant, it just makes me so angry reading the same thing time and time again , about women not being listened to, to think if they did I would have been diagnosed over 20yrs ago and not in the situation I am in now. Good luck lovely and keep fighting the ass holes lol xx

[Littlebirdy34 in reply to Nikki84]

Thank you and I will. Doctors is booked already and I will be heading there with the right information, some days it just gets all too much though.

Your reply is really appreciated x

[Hidden]

Bless you Nikki you’ve got it all coming. I’ve missed having kids too. I always new there was a reason! They just don’t listen. Your advice is right in that you have to get determined and persistant, & in all honesty doctors are guessing a lot of the time.

A friend of mine had to have a poo bag for several months. They are very discreet these days. She was tall and slim at the time & you couldn’t tell she had a bag. It was reversed successfully. Be positive as best you can xxx