Specialist

[Dee3e3e]

Hi everyone

I just wanted to share my experience and hopefully it will benefit someone out there.

After 7 months of being off work sick and debilitating pain, consultations with almost 20 healthcare professionals trying to convince them there was something wrong I was diagnosed with endometriosis this year and my surgery was done by a gynaecologist I had never met until the day of the surgery. She told me they were surprised how much endo they had found and that organs were tethered together and theyd done quite a lot to cut it away and I should be pain free within 2 months and discharged me the same day.

I took that with a pinch of salt. Pain free? Endo? Just lol.

Anyway here we are and symptoms have returned with a few added extras now and I got referred back to gynae. I was told obviously the endo had come back and there was no point doing any investigations because what's the point and my only option was to chemically start the menopause.

Cue me crying hysterically.

I have a degree and a masters of science so I went and did my homework. I looked up the drugs he suggested. I looked up the NICE guidelines and I looked up the core research/Cochrane reviews behind them. And I came to the conclusion that no this wasn't good enough and he'd made sh*t up. Sorry but he had. I'm so angry that he tried to push me into trying something based on lies. The way he described it (yet again) is that this would be a cure...that the drugs would dissolve all the endo away.

Here I'd like to say that obviously this is the treatment choice for some people and for some it works well but for me it was unsuitable and additionnaly inappropriate to suggest it was the only option.

I asked to speak to an Endometriosis specialist for a second opinion and I saw him today.

As soon as I walked in he apologised. He frownwed and looked at my notes and back to me and said I dont know why you havent been referred to a specialist centre.

He asked where I had the surgery done, who had done it, what was the follow up. Answers: not a specialist centre, not an endo specialist, no follow up.

I said I'd recently seen the gynae consultant and he read the notes, his face dropped. He asked do you want children? I said yes.

He said this was just not the right pathway at all. He said I needed a blood test and an MRI and to be seen by in the endo clinic with a team of specialist surgeons.

I could have cried.

This time with absolute relief. Not that I particularly want surgery. But just that someone was taking responsibility and prepared to actually do something about it.

Long story short. I feel I've wasted a year being seen by the wrong people.

If you have endometriosis and are looking to discuss treatment options, from my personal experience gynae isn't good enough. Ask to be seen by an endo specialist ASAP.

Best wishes xx

[Starry]

Huge hugs. So many people seem to have this happen. It almost happened to me ( was told I needed a hysterectomy) but for the amazing advice I got here. So glad you are in the right place now.

[Dee3e3e in reply to Starry]

Thanks! I know it all sounds so unfortunately familiar!

This place is great, not sure what I would have done without it

[luthien]

Aww no poor you. That all must have been so awful emotionally never mind physically.

I'm glad you've found a specialist that knows his stuff and can help and you're happy to share your story so others can learn from your mistakes

[Dee3e3e in reply to luthien]

Yeah it is. So relieved now.

Haha not sure they were my mistakes....more like doctors need to reread the NICE guidelines and fingers crossed some updated comprehensive guidelines support endo patients are brought into practise!

In the mean time we need to stick up for ourselves and demand better treatment

[Sway72]

I’m so happy you got the right help you need 😊

[Hidden]

I will be getting a BS in biochemistry soon and will pursue my PhD so yay for someone else who looks stuff up like I do!!!

I’ve had to do the same thing for my recent health problems. I’m glad you’re being taken care of now. Sorry you’ve had to go through all of this xx

[VW17]

I'm 34 and have had constant stomach issues, IBS, dreadful periods, exhaustion etc etc. Had a laparoscopy end of October where endometriosis was diagnosed and treated. Have new pains now and on second dreadful period. I fear nothing will improve. Have been offered no follow up appointments...😔

[luthien in reply to VW17]

Oh dear

Could you try and get a referral to another specialist or have a second opinion?

[VW17 in reply to luthien]

I was going to see if any improvement next year as it may be too early to tell....just feel a bit down about the whole thing. Seem to get nowhere....

[123happym]

Thank you for this, am waiting to hear from my consultant re surgery then may request a BSGE referral. Have been considering my options.