Endometriosis, adhesions- diagnosis one month ago- help!

[A1239]

Hey,

A long story short.. for as long as I can remember I’ve had the worst periods ever, 100s of trips to the doctors to only be told it’s all in my head. Then after a long battle with a gyno they found a cyst. I begged them to operate and check for endo but they were adamant there was no chance it would be..

I woke up from the laparoscopy that lasted 2.5 hours longer than expected to find out that I have endo! My surgeon didn’t even come and see me at my ward- I only knew what is wrong with me from my discharge notes! And I’m still waiting for my follow up appointment to even speak to her about it. 12 weeks of waiting for that appointment is driving me bonkers!

I took my discharge notes to the doctor to get a better understanding and this is what I know.. I had a cyst on my left ovary that was removed. I had adhesions on both my ovaries sticking them to my ovarian fossa. I also had spots of endo in my POD and also adhesions to my left pelvic wall.. and that’s all I know? Am I supposed to know what stage I have? What does this mean for my fertility? Has anyone had anything similar to me and what did they do/ understand?

I’m 27, and haven’t been on any contraception for 3 years- and I’m not planning on going back on it. But i feel really worried that my fertility is already too damaged

Thanks for any advice in advance x

[Giraffe92]

Oh my god you are literally living my life! I knew nothing after my lap, they told my husband more on the phone! I'm 7 weeks post op and have my follow up in 2 weeks and still don't know where my endo was, how severe it was, or whether it is normal that I am still feeling the same pain as before the lap but more intense at times. So frustrating that there are more people in this situation, I thought I was just unlucky with being left in the dark :/

[HollyMaria]

It’s absolutely horrific how they can leave you hanging like that. I understand they may be busy and whatever but there’s no excuse to leave an operated patient without answers or atleast a follow up. I have also been in this situation and it’s frustrating. It resulted to my mum almost punching one of the nurses which isn’t cool but the frustration is there and it’s not going away!!

You could ask your GP for an urgent referral with a different consultant like a specialist that can see you sooner. It would help in your favour if you can’t wait 3 months for an appointment

The woman who done your operation should be able to tell you what stage you’re at with endometriosis and then offer you a pain management plan as well as an in depth conversation about your fertility.

I hope you get that sorted. Literally, all the best.

[A1239 in reply to HollyMaria]

Thanks so much for your message. I actually managed to get my follow up moved forward and had it last Friday. I know what stage I have and next steps ish but still really not that much clearer on fertility other than “now is the best time to try”

[HollyMaria in reply to A1239]

That’s brilliant! So happy to hear you have got some answers. It’s annoying to hear ‘try for a baby now’ when you may not even be ready yet. It’s like is it really now or never!? Don’t feel pressured. It sounds to me as you are still fertile though!

[Giraffe92]

I don't need my marriage saving by praying to the Easter bunny, get out of here with your mumbo jumbo.