What came next?

[Lucy1906]

Hello all,

I was just wanting to know after you had received your diagnosis what for you? I think since I got my diagnosis through MRI I’m concerned that surgery is not going to be an option. If I had it my way, and it was completely my choice. I would opt for the surgery to have it separated and for the extra tissues to be removed. Firstly so then I know it’s removed for now, wouldn’t come back and thirdly just for that final clarification, and definitive conclusion which is endometriosis.

I tried so many pain relief, contraceptions and I just don’t really want to keep trying and prolonging the inevitable. My worry that they’re just gonna say that I don’t need the surgery. It’s best for me just to carry on and keep trying different things but that’s not what I want to do.!!

[KittyTherapy]

Hi,

I think surgery is usually offered for symptom control especially when other methods have failed. Is there something specific that you think they would reject you for?

I had an MRI as part of my investigation process which showed indications of endo but then was offered surgery to treat and manage symptoms. It's not cured everything mind you and people have different experiences with surgery.

I would hope they would explore surgery as a possible option for you. Be clear with them about your wishes. Do you know when your next appt is / can you chase them up about it? x

[Lucy1906 in reply to KittyTherapy]

Hi!

I don’t have an appointment booked in yet. I have only had GP appointments so far. So not actually seen a gynaecologist or endo specialist yet, luckily a lot of the Gynaecologists at my hospital specialise in endo! So i am just waiting at the moment!!

I definitely want the surgery and I think it will be the option given, since I have tried so many other options! And with my bowel symptoms too, the colorectal surgeon seemed keen to! Which is a relief xx

[Lindle]

Have you been referred on to a BSGE accredited endo centre as that is where you must be treated.

[Lucy1906 in reply to Lindle]

Well, the hospital I work at, we have on site endo specialist team! Part of BSGE.

[ScottishDee]

I'm the same although I've only had an internal ultrasound. I've been put on progesterone and need to be on that for 6 months before they will even think about referring to gynae. I have asked I'd I can get an MRI but waiting to find out if I can have one. It's very frustrating!!

[Lucy1906 in reply to ScottishDee]

it is incredibly frustrating, I was very lucky that I didn’t have to ask for an MRI but my GP referred me to gynaecology and they booked me in for the MRI before they saw me which is then when I got the call to say that she could see the Endo. I think it’s so hard when they don’t listen to you, and I’m not giving you what you want and have asked for, but I would just keep pushing for it. You know your body best!

[Lucy1906 in reply to Lucy1906]

I do think because I work, and I’m around the specialists and surgeons every day that helped me get bit because of their own. Although it should be equal across the board, possibly in their eyes they’re thinking if we get her sorted soon, it means I won’t be off work as much!! I have no idea, but I’m very grateful for it.

[ScottishDee]

Yeah I'm a nurse but work in respiratory and don't know the gynae team - wish I did! You're right it is so frustrating! Considering going private for MRI but angry that that's what it may come to just to get some answers xx

[Lucy1906 in reply to ScottishDee]

completely agree. Although go private maybe quicker, I just couldn’t bear spending that money for it to possibly come back as you’re fine. But I think that’s probably a has in this situation. I really hope you get the answers you want soon and the tests you want soon. Maybe it would be beneficial to go to your gynae team and just say is there anyone available I can talk to or is there anyone’s email address that you’re happy to give me to email just to ask some questions !! Because that’s what I did after my MRI, I was waiting about five weeks for the results but that was simply because the consultant was on annual leave, but I spoke to the secretaries and they said they would contact her and get her to have a look as soon as she’s back in and she did and she gave me the results the next day Xx

[ScottishDee in reply to Lucy1906]

Yeah I agree that that's a worry. What is it about this condition that has us second guessing ourselves. I hope you get the answers and outcomes you need too. Stay strong!!

[Lucy1906 in reply to ScottishDee]

yeah do you know what that’s so true, I think it’s all because this medical gaslighting that we’re now constantly doubting ourselves and what we know about ourselves. Which I did for so long in the back of my mind I always knew it was endo, but just with the process and how long it took I started to believe that maybe it was just bad period But I’m so glad my family and my boyfriend were like I keep going something not right. It’s just such a long journey and I truly think if it was men that had these problems it would all be dealt with so much quicker.. Especially with the medication we’re given the risks on it, the risk of depression and being suicidal from the pain from the medication is absolutely shocking but because we’re women, it’s kind of put on the back burner. Sorry, I know that’s controversial, but that is how I feel haha xxx

[ScottishDee in reply to Lucy1906]

You're totally right!! Don't apologise - we've done that for too long too! I actually cried when the woman who did my ultrasound said there was evidence of endometriosis!! I'd had problems for so long and was brushed off. I have had ibs symptoms which haven't responded to any treatments , awful period pains and was finally relieved to get some answers. But then it's here's some hormones and we'll review in 6 months to see if it helps! WTF?? No attempt to look at what organs are affected or how bad it is - just here's a pill and get on with it again!