ost and disheartened

[Rockandroller92]

Hi all. I hope you are all soldiering on.

I have been fighting this never ending battle for years now and I got diagnosed 3 years ago. I had endo in my pelvic wall which was dealt with. 6 months later I ended up in hospital for 5 days and nothing could be found wrong with me. Every day I had a new diagnosis from Gastro, urology and Gynae, I then got diagnosed with endo again and chronic IBS.

For the past 2 years I have been in and out of my health centre and hospital in the city with horrid pain to no conclusion.

I was blue lighted to hospital last night with excruciating pain where my Appendix is and this has happened before. Because all my vitals and blood tests, etc are all ok they just told me I have chronic pelvic disorder or something. I suggested it may be endo on the appendix and because this is rare they basically ignored me. I had an MRI in October that shows no active endo but I am awaiting another laparoscopy. If they cannot find nothing again they have said I will have to deal with it with pain management and maybe CBT.

I sometimes think I get panned off and they think it is psychological due to PTSD and anxiety. I know it is physical pain and not in my head but because of the constant dismissal I feel at a loss.

Anyones response would be greatly appreciated as I feel like giving up. I spent my birthday in an ambulance and A and E why would I do this on purpose or over nothing.

Sorry just feel very self loathing today.

X

[plotments]

HiSorry to hear your having such a tough time.......it's horrid what we have to go through to be heard it's a constant battle with the medical profession

You've got to keep fighting on.....ask Dr for referral to endo specialist.....you've been diagnosed in the past and with everything that has happened you need to be seen by someone who knows what there dealing with you really can't carry on back and forth to hospital.....chronic pelvic disorder.....yes endo....and they tend to say "rare" when they haven't really got a clue......endo can travel anywhere through the body

Get back to Dr and bombard them with all your symptoms history scans etc and don't leave till you get that referral.....and don't let them fob you off with excuses about covid......there's a vaccine now.....the sooner you get on the referral list the better

I hope you feel a bit brighter soon

take care

🌻🌻🌻

[Rockandroller92 in reply to plotments]

Thank you for your response, I really appreciate you taking the time to listen and respond. Its comforting to know I can find people who understand.

[plotments in reply to Rockandroller92]

we all totally understandI had to get an ambulance at the weekend.....not a nice experience especially being on my own while at hospital...And not a nice way to spend your birthday

[Rockandroller92 in reply to plotments]

Here for any support you may need whenever its needed. We all need to try keep positive.

[plotments in reply to Rockandroller92]

Same here hun🌻🌻🌻

[Student_2324]

I’d agree, I’d suggest speaking to your doctor. I’ve been waiting for a diagnosis for 2 years now, first it was pelvic inflammation, then ibs and now I’ve finally been referred to gynae for lap which is a long waiting game! My doctors have sent another letter asking to be priority as it’s affecting me so much, if my pain relief doesn’t work I have to go to hospital for stronger medication. My pain is also on my right side majority of the the time so I do believe it’s on my appendix, it’s not really rare is it if it spreads to bowels and the digestive system as your appendix is within that region? With endo, you know your own body, no one should be telling you how much pain you should be in, you’ve had endo before and it can come back so why would they dismiss it, I don’t know. We just have to keep fighting and telling the doctors what we want, don’t let them fob you off. I know hospitals try to, but I honestly rant to my GP so much but it’s working!

I wish you all the luck and hope you get sorted soon and helped with your pain xxx

[Rockandroller92 in reply to Student_2324]

Thanks for your response. It affects all parts of life. I've had to take time of work alot which now I have to be monitored about time off so I am trying to grin and bare it but think that's why I ended up so bad on Friday. I hope you get relief soon. The most frustrating thing is they know I have it and still they keep telling me to work on my mental health. I understand the links between gut and mind but I have been working on my personal growth and mind and still I get this unbearable pain.

Positive vibes to you and sending you hugs.

[Tuxedo34]

I know exactly how you feel and have been through similar situation. The last time I went to hospital which was a couple of months ago I was treated with utter contempt by the doctors there who I'm sure came to the conclusion I was just looking for pain drugs to feed a habit or something. They also refused to perform another lap which I know I need. I'm so sorry you are going through this, so much more awareness is needed of this horrible disease.

[Rockandroller92 in reply to Tuxedo34]

Hi thank you for responding. I felt exactly the same the other night. I felt they thought I just wanted the strong drugs. I'm still coming down off the morphine my whole weekend has been spent in a dream land and sleeping. I had to spend my birthday in bed. Why would I intentionally do this. So frustrating x

[Brambledoggy]

Morning. Just read your post. Don’t do self loathing please. Instead try and be kind to your mind. Endo can be the cruellest condition, but you’re body is going through enough without you beating your head up too. I totally get it, 100%....been there, done that, got the flipping t-shirt. Read my profile. You’re going to need some second and possibly third opinions and if it helps, take the feelings you’re having and turn them into strength for fighting with your GP, surgeon, endo specialist. You deserve some answers. There is a way forward for you but you’re going to have to fight for it. Sending support along with everyone else here. You are not alone. It might not feel like it, but you are strong and with the correct support, are going to get even stronger. ☺️

[Rockandroller92 in reply to Brambledoggy]

Thank you so much I try not let it get me down but its hard when the professionals make you feel and sound like a liar. I hope you are ok x

[Princesspeach84]

This post here is the reason we need to teach about endometriosis in schools. Medical staff need to be educated much better on this horrible disease. It’s so misunderstood and it’s so much more than just period pains! Keep fighting to be heard, I was that sick of being ignored I paid private and saw an endo specialist and they helped me. When I first saw endo nurse I cried my eyes out as the first thing she said was ‘ You will have been unheard all this years, but I’m listening and I’m listening now’ 😭 I don’t think drs appreciate the mental turmoil over having endo. I wish you luck in finally getting heard! x

[Rockandroller92 in reply to Princesspeach84]

This is the route I'm thinking of taking. Thabk you so much for your kind words and motivation. Take care x

[Octavia8]

I really sympathise with what you are going through. I have had a similar experience with medical teams. I have been in so much pain and have been dismissed various times with them not able to find something wrong. I have felt so low that I thought about ending the suffering. It has been a struggle including having to be a bother to my local GP by calling so much however I am finally getting referrals. It’s humiliating knowing that even the mention of ‘endometriosis’ makes most doctors recoil and instantly dismissive. I have joined group after group, signed petitions to get more funding into research for this condition and I chat to people I have met through support groups on Facebook about ways to cope and also to encourage each other. Remember to be kind to yourself and know that your not alone. With best wishes x

[Rockandroller92 in reply to Octavia8]

Im so sorry to hear that you have had such a horrendous time. Its not good hearing people go through this but its reassuring knowing im not alone. No one I know understands it or really knows about it which makes it hard. And because it can come on so suddenly I think people think I am making it up or just want pain meds. I hate the strong pain meds I feel like I am in a dream state and don't really know what I am doing. I just wish they could listen to me. It seems to be where my Appendix is, alongside pain during BM and urination that causes most trouble alongside mental health strain. I cannot afford private but at times I want to as I do no want to feel this low anymore. The main support in my life is my partner and if it wasn't for him I don't know where I would be. Sorry to sound so doom and gloom x