Finally had my gp appointment Tuesday after 7 weeks of waiting!!

[Lauraxoxo]

So finally had my appointment. The gp basically said it’s endo. She said the only real way we will know for sure is having a laparoscopy.

She has put me on the combined pill for 3 months and advised me to keep a diary etc. I am due back in July to review.

Part of me was hoping she would send me to a gynaecologist or something. Putting me on the pill just seems an easy way out? I suppose you have to go through the motions though and be seen to be trying things though.

Will just see how this pans out! Xx

[Jajo1987]

Sorry to hear what your going through hope you start to feel better soon I was diagnosed a few months ago and one of the treatment plans along with four or five other options is the pill apparently it manages the symptoms a bit better, but with other health I wasn't elegible for that so Im waiting for the 1st operation to improve it, just the waiting is the hardest part when your in pain, hope it works for you x

[Lauraxoxo in reply to Jajo1987]

Thank you. So do I! Just seems such a long drawn out process!

Hopefully you’re not waiting too long for your op xx

[Jajo1987 in reply to Lauraxoxo]

Thanks hun well hopefully won't have to wait too long got an appointment next Thursday so they'll go from there normAlly about six weeks I'm hoping! how long have you been waiting so far to get to this stage? Do you still have the symptoms xx

[Lauraxoxo in reply to Jajo1987]

I went to the gp beginning of the year. She instantly dismissed endo as she said I’d be taking time off the pain would be so bad. I said well I can’t just do that. So anyway she sent me for ultrasound scans and they came back clear. Not that it would pick up endo but least it was nothing else!!

I demanded and appointment to discuss. Had to wait 4 weeks then it got cancelled. Then had to wait 3 weeks for this one. The appointment was videoed so I used it to my advantage and really went to town!

I’ve been bleeding constantly for 3 weeks and it seems to be stopping. Still get pelvic pain but cramping has eased a bit. Hopefully the pills will regulate the bleeding. She has said I don’t need to take a break on them though as no period means no pain as she put it xx

[Lauraxoxo in reply to Jajo1987]

I think I’ve been suffering years the more I look back but just been fobbed off with ibs etc as the symptoms of endo and like other things but it is seriously all making sense now. I just hope one day I get a solid diagnosis so I know for sure! Feel a fraud saying I have it when I don’t know for sure lol xx

[Jajo1987]

No I think good on you for writing this as I suffered for years before being diagnosed but I never wrote anything as I thought the same, and wish I had now because was a horrible at the time of not knowing, I was kind of lucky in a way as when the pain did get so bad I had a ca125 test so they were investigating that which is why it got pushed through so quickly but I've heard people wait years before being taken seriously, hopefully it will be good news for you though, but all the symptoms you've said sound so similar to mine the bleeding inbetween/ constantly is a classic sign although there are lots of other reasons for this. And people have all different levels of it so for her to say 'taking time off' is a bit insensitive as like me I've had to literally drag myself to work on days where its unbearable. Think I've had one or two days off over the years but you have to pay the bills so I've literally been in tears with it at some points and shouldn't of been in. I think it just takes that one good doctor too really get things moving and sort things out xx

[Sez73]

I don’t know whether this will help at all but I wanted to share my story.

I’m 44, since I was early 20’s I suffered debilitating chronic fatigue, back pain, leg pain, excruciating pain when I sneezed, and a general gut feeling things weren’t right & I was ill. I didn’t even know what endometriosis was 20 odd years ago but I did know something was not right. I went repeatedly to my Gp who said the pain was all in my head and tried to push anti depressants on me, despite regularly going to the GP they did nothing. Fast forward 15 years, I was 37 trying for a baby and not able to conceive. I’d moved to Oz and happened to mention all my symptoms to my new GP who was appalled I’d been basically ignored in the UK. He ordered many tests but one was a tumour marker Ca125 test which came back elevated, this can point to possible endometriosis. Bearing in mind my other symptoms he referred me to a gynaecologist, 4 weeks later I had my first diagnostic laparoscopy which was scheduled for about half an hour to 40mins, 6hrs later... the 2 surgeons spoke to my partner to explain they’d uncovered 24+ years of severe stage 4 endometriosis, I was riddled with it. It had wrapped itself around the tubes between my kidneys and bladder & I was close to losing a kidney, it covered all my abdominal cavity and I had chocolate cysts in both ovaries. I finally felt vindicated that it wasn’t all in my head and was so angry at the my GP in the UK. Within 10 mins of coming around from the anaesthetic I knew instantly there was a big change as all my chronic fatigue had simply disappeared, I didn’t feel riddled with this unknown heaviness I’d had for so many years. For 6 months post surgery I felt great, unfortunately I’d thrown IVF into the mix and that set me back a lot and my Endo returned very severely again so I had repeated surgeries. I still suffer due to my desire to try and have a baby but I’m more in control of it at least having taken responsibility for my own health.

To cut a long story short, in reading your story I think you need a much better GP!

Endo cannot he picked up on ultrasound. It also concerns me she’s put you on the combined pill which suggests you’re taking oestrogen and progesterone, you should not take extra oestrogen as it ‘feeds’ endometriosis. The only real way of diagnosing Endo is by laparoscopy.

Simply papering over the cracks and putting you on the pill and asking you to keep a diary...well I don’t think that is good enough for you. You could lose a year at this rate and the sooner you know the better I think.

You should ask to be referred to a gynaecologist but ideally someone who specialises in endometriosis as general gynaecologists can be as useless as useless GPs.

Don’t be afraid to push push push as you have to take responsibility for this illness yourself. Just because your GP says one thing doesn’t mean they’re right.

You may or may not be ready to have a baby etc and that may still be a long way off for you but you should be getting expert advice now to tell you about your options and things to consider for the future. Had my Endo been discovered in my twenties and I’d been given advice to consider starting a family earlier, I would have at least had options.

Even if you have to pay privately for an hour appointment at a BSGE specialist centre you will get proper advice unlike what your “helpful” GP is giving you.

This illness can’t just be papered over, if you’re at the start of your journey you need proper advice and I don’t think your current GP is acting in your best interests to be honest.

It’ll maybe cost a couple of hundred pounds to go see someone privately, an expert who can answer your questions and give you some better advice and it will be money well spent. Or I’d say tell your GP you want referred to a specialist Endo centre.

I’d wished I’d had more advice years ago and I’m now 44 still battling trying to have a family and doing all I can to beat this illness. No where near enough is done to educate those just coming through recently diagnosed or suspecting they have Endo.

Doctors are not God, they are not always right and I wish to this day I hadn’t allowed myself to be continually fobbed off by my utterly useless GPs who wouldn’t have known the true impact of endometriosis had it slapped them in the face.

You have every right to get the best advice and help for you. If you don’t feel your GP is doing enough then help yourself instead. When I started to take control and challenge doctors, it was the best move I ever made and it led me to one of the best surgeons in the world who finally helped me.

Good luck and I’m sorry for my long message. If one person doesn’t suffer as much as I’ve had to and seeks help sooner and doesn’t just put up with useless GPs, then it’s worth me getting sore fingers texting a long message!!!

All the very best, if you feel something isn’t right, you go and get the answers you need in whichever way you can. Take control and it could save you a lot of pain down the line. Xx

[Lauraxoxo in reply to Sez73]

Oh my goodness. How awful for you in the early years of it. I’m disgusted by what I have just read. I’m so pleased you finally got sorted. It really does seem to have such as stigma here in the uk and I’ve no idea why! They seem to really drag their heels in looking for a diagnosis! It’s crazy.

Thank you for replying. I can’t believe your story but I’m so happy you are sorted now. Xx

[Sez73 in reply to Lauraxoxo]

No worries. I don’t want to scare you by my story but just want to help by saying you stick to your guns, if you don’t feel you’re getting adequate help go and see another doctor. All too often us Endo ladies are fobbed off which is awful as it can have catastrophic consequences as I’ve found. All the very best, sorry for my long message, I was just so cross hearing how blasé your GP sounded, it rang bells with me.

Good luck with everything here on in xx