Diagnosis and second surgery

[Bethalex]

Hi everyone,

I received my endometriosis diagnosis after over 5 years of problems! I had a diagnostic lap on the 23rd but the endometriosis was that severe they were unable to remove any of it. They also diagnosed me with a frozen pelvis.

How long has others hard to wait for their second surgery? I can’t go on like this and just want them to remove what they can. I also have my wedding in July and really don’t want it to effect that.

Thanks

[Pirracas]

Hi Bethalex,

I had my surgery On Saturday 27th and exact same result as yours.. The Endo was so severe they will need to do a second major surgery. I still have not had my follow up appointment with the gynaecologist where I guess he will explain next steps moving forward. He did mention having to take injections to force a temporary menopause before next surgery.

Even though I don’t have a reply for you I just wanted you to know you are not alone and we may be able to help and advise each other.

[Bethalex in reply to Pirracas]

Thanks for getting back to me! Sorry your in the same position.

All it says on my discharge notes is second stage surgery needed nothing about injections. I have an appointment tomorrow to discuss with my consultant so hopefully I know more by then.

I hope you get to speak to him soon

[Pirracas in reply to Bethalex]

Good luck with your appointment! Hopefully you will get some more answers. Keep in touch and let me know how it goes.

[Bethalex in reply to Pirracas]

Good morning,

I just wanted to update you to also give you a bit of hope after my appointment with my consultant yesterday. She diagnosed me with stage 4 endometriosis.

I have been referred for an urgent MRI to assess the damage to my bowel and then I just have to wait for a date for my next surgery.

Hope you get some answers soon!

[Adeno2020 in reply to Bethalex]

Hi both so sorry about your first results... I’m due my lap soon waiting for date but I was wondering what symptoms you have? I have symptoms and constantly told it’s defo endo but now I’m waiting for lap I’m so scared they won’t find anything ?

[Bethalex in reply to Adeno2020]

Hello!

Mine started in 2016 after having my daughter.

It started with my period just stopping, then they came back and I was in agony and on really heavy, I tried every pill possible but they either gave me headaches or made me really sad.

I had around 3 ultrasounds all came back clear. I had to keep going back again and again saying I’m still in pain or I’m on my period for 2-3 weeks every 2 weeks.

Last October I was going to have the more a fitted when the did an ultrasound and found two large cysts one on each of my ovaries. I had my lap on the 23rd where I received the stage 4 diagnosis!

I definitely get your scared that they won’t find anything, it was a bit easier for me because I already knew about the cysts!

Even if they don’t find anything don’t give up!!

[Adeno2020 in reply to Bethalex]

Sounds similar to me, I had problems before and started period early but since having my daughter 2019 everything went down hill I got sepsis from a womb infection when she was 3 weeks I’ve been in hospital 5-6 times since with gynae problems, had a cyst removed and had another 3 re appear .. but they always make out it’s in your head don’t they

[Pirracas in reply to Bethalex]

Hi Bethalex, thanks for letting me know! I have my follow up appointment on the 15th. Looking forward to getting more answers too. I do really want to avoid the injections as I have read horrible things about the side effects. I was really scared about the first lap as I had never had surgery before but the recovery is being really good so I am not scared to have a second surgery if this means they can remove all that severe endo. Would love to keep in touch and share experiences as we go through this.

I will ask my doctor too about the MRI option.

Wishing you the best!