Endometriosis UK
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Awaiting diagnosis

Awaiting diagnosis

I'm new on here.. Hi :)

I have been experiencing on going pelvic pains for the past 5 months, and the last month it has become more severe. Recently been getting severe back pains too, so been in and out of doctors / hospital enquiring all of this.

Doctor's suspect is endometriosis after all the tests and examinations I have had done. And have told me the next step for me is a laparoscopy.

I am currently waiting for my gynaecology referral appointment, but I feel like I'm just going to get reassessed and will have to wait longer for further examination.

Which is quite inconvenient as I've already been off work sick for nearly 4 weeks now, as I'm unable to sit up for a whole day and these painkillers are making me so drowsy and lightheaded.

Basically what I'm looking for is second and third opinions of my situation, and other experiences of how long people waited and whether anyone knows any tips on how to get seen quicker, please :)

Any comments / help / tips would be greatly appreciated.

(I've attached an image showing my symptoms thus far)

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Hi, I'm a newbie here too. Sorry to hear your suffering. I was back and forth to my docs for 7 years before a new GP put everything together and said he suspected endo and pcos. He suggested I get a private appt with a consultant and see if i could be referred back to the NHS because the NHS wait times for gynae in my error are so extreme. This was not possible to be referred back so it was an 8 month wait for a NHS appt and to begin the process or I could pay to have the operation privately.

I was very lucky and managed to have the operation done privately but still had an 8week period to get though whilst trying to hold down a full time job. My work arranged shorter working hours following a note from my gp this could be something to try whilst waiting. I am now back in the sane position as you now though, my private consultsnt put me on zoladex through my gp so i didnt have to pay £100 per injection these helped massively with the endo symptoms but bring there own kind of hell themselves i only wish i had done more research on them snd not blindly trusted the professionals.

I would say my best advice is perseverance as much as it's hard I still worry about what my work might do when im having time off cause i cant get out of bed or i need to see a doc again but you have to just keep thinking about you and going back to the doctors again and again. Perhaps ask about a pain management clinic. I would suggest a tens machine I wore one like a handbag for months though it didn't help all the time it helped with taking less of the stronger painkillers Sorry it's not more helpful advice.

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Hi, thanks for your reply.

Oh god, that's a long while! May I ask when this was?

That's good that work was able to sort out the hours for you. Good shout - I shall see what my employer can do. Unfortunately, I'm unable to afford to go private. It's such a shame hearing about all the delays and complications. I hope you're doing well in other words. I am currently on Naproxen and Tramadol for my pain relief however it doesn't get rid of the pains as mine can be quite severe (as you probably have experienced). Tramadol also puts me in a state where I'm unable to stay awake or focused or anything hence why I'm still off work sick.

Thank you for your time and advice, it's appreciated honestly. My GP has suggested pain management clinic as I have tried all the painkillers - if the tramadol don't help then I need to go back and get referred for pain clinic.

So we'll just see what happens. My gynae referral appointment is in 3 weeks time, hopefully won't be too long until I get to the bottom of all of this.

All the best x

Reply

Of course. I've been back and forth for years but finally got a diagnosis in May last year.

I know how you feel with the tramadol I was still in pain and couldn't do a thing, when on them i find it difficult to even get out of bed and wash myself I'm i permanent zombie state and know being at work on them brings extra challenged I knew I would make mistakes cause I just couldn't focus. The naproxem gave me sever stomach cramps as well its like a never ending cycle. I tried taking 'j.collis brownes mixture' you can get it from boots this gave me some relief at times.

That's great that you can see a specialist so soon on the nhs would say to be as brutally honest as you have to domt let them fob you off. For so long I thought I should just get on with it and be brave but it doesn't get you anywhere. If you feel your being fobbed off take someone with you to the next appt. I have had to go the extreme of making a formal complaint about a GP Who told me this was all nothing and I needed to get on with it and 'deal with periods like everyone else' just 3 months before I was diagnosed and had the inflammation removed.

Its a long road and I made the mistake a couple of times of giving myself a false hope that things were getting better which means I've crashed harder when they havent.

Hope you get a diagnosis and some answers soon. :) x

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