Losing Faith

[Lunaloo123]

I’m so disappointed… I had an appointment on 20th January with the surgeon that did my diagnostic laparoscopy and was told that I was being referred to another hospital to deal with the rest of the endometriosis that is still there. Fine.

I chased this up a couple of times (which has obviously annoyed the surgeon and her secretary) to find that they hadn’t put the referral in and so did it yesterday after our phone call… supposedly.

I’ve been waiting over a month for a letter to cover what we discussed in the appointment, referral to the new hospital, referral for an ultrasound and other bits and bobs and none of it has been done almost 5 weeks later.

I am quite upset. I’ve finally been told I’ve got stage 2 (didn’t know that until yesterday) google doesn’t tell me too much about it but I’m wondering does this grow into the higher stages or am I just making a fuss over nothing? Stage 2 is described as “mild” online… if these symptoms and this pain is mild then I do not want to go on to the next stage.

Hopefully they have actually referred me now and I can get someone even better than “Mary Poppins” as I call her.

I just feel back at square one again.

Sorry to rant…

[Msunited Moderator Moderator]

Hello Lunaloo123,

Sorry you are currently going through such a disheartening time.

The feeling of being ignored isn't nice and you deserve to have your concerns heard.

You are always free to rant here! Would engaging in a more instant chat be of more help to you?

endometriosis-uk.org/web-chat

They have representatives that are dealing with 'endo' too, so you may feel understood knowing you have this in common!

Or you could write in with them here [e-mail]

In the meantime, you could have a look at some stories shared by other women on their journeys

endometriosis-uk.org/person...

I hope your journey begins to see a more positive outcome

All the best

[gatherings]

So sorry you are going through this! I relate to the stress that can come with following up with doctor's offices and making sure all the referrals and such are in order; it's work on top of managing a disease and feeling unwell. Good on you for advocating for yourself and putting that foot work in by following up.

You are not alone! Keep the faith.

I had one very disheartening appointment whereas they did not have answers for me despite much testing and I started to doubt my experience and think it was all in my head and I called a friend who encouraged me to keep going, and I eventually got in to see a new doctor who believed me and helped me confirm a diagnosis of "Endometriosis." I hope you'll find the help and support you need with your new provider, as sometimes going to someone new can make all the difference. I hope the resources listed above and through this site are a support to you as well.

[Lunaloo123 in reply to gatherings]

Thank you so much. It’s so difficult because I am not a person to complain. Often if I’m in pain at work, people don’t actually know about it…

We shouldn’t have to fight to be heard or taken seriously. I was told that I’m a stage 2 endometriosis, and it was made to sound that because google calls it “mild” then it’s nothing. Personally I don’t trust that it’s stage 2 but we shall see with the new doctor.

Im glad that you finally got heard and I hope that things improve for you. This whole thing is a pain in the lady bits!

[Rainbow2468]

Rabt away you have every right to be annoyed. Sadly we have to chase them up, i could have been left ob a permanent loop of waiting for a follow up appointment if i hadn't chased something up at gynaecology. So you did the right thing. We should not be left in pain and discomfort. Sending you a safe hug too ❤️🤗

[Lunaloo123 in reply to Rainbow2468]

Thank you, it’s such a shame that we have to winge and moan about it but it’s the only way we seem to get any acknowledgment.

Hope everything is okay with you xx

[Rainbow2468 in reply to Lunaloo123]

Hi it's so unfair i agree, but we should be listened to and respected. And thank you, I'm having a good day, i hope you are too xx🤗

[Selfel]

So sorry you are going through this and having to advocate for yourself all the time is disheartening and unfair, but seems to be necessary. I have had some success with contacting PALS when ringing the hospital alone isn't working.

As for the stages, my personal view is that it's not necessarily related to pain. It all depends where it is. I haven't been given a stage but told it's severe, I must have had it a long time but only became really painful in the last few years. You can have a whole baby in there and it not be that painful, I think what it is pressing on is more an indicator of pain rather than how much you have.

[Lunaloo123 in reply to Selfel]

Thank you for explaining it. I think I saw the word “mild” and almost lost it. There is nothing mild about the contraction-like pain that I’m feeling at the moment.

I hope everything is improving for you and thank you for your message xx

[Selfel]

I have had one endometrioma drained and am on prostap. Previous to that I know what you mean about pain. Mine would always be worst at 3am so it would wake me up too.Your feelings are valid, if you are in pain keep pushing. As an aside, I think I had more success when I took my partner to appointments. Sadly, if a man is there and agrees that you are in pain, they seem to take more notice.

[Lunaloo123 in reply to Selfel]

Unfortunately I’m going this alone… so I will just have to put my big girl pants on and shout as loud as a man would!

I’m glad your pain has eased and I hope the prostap continues to work. X

[Selfel in reply to Lunaloo123]

Do consider taking someone, even if not a man. I'm sorry that you feel alone in this. I'm in my mid 40's and am waiting on a hysterectomy, hopefully I can draw some kind of line under it then. Don't hesitate to use the forum, even if it's just to offload.