Don’t give up until you get answers ❤️Post laparoscopy adenomyosis diagnosis

[Dartmouth93]

Just wanted to share an update, after having my second laparoscopy yesterday. Last year I had it done with a general gynae who didn’t see me before or after the lap, took no surgical photos and provided no report. She was adamant I had nothing wrong and that I just had IBS but I pushed for a second opinion with a BSGE accredited endo specialist who has been brilliant. I woke up from surgery to be told I don’t have endo fortunately, but he showed me my surgical photos and my uterus was mottled and different in colour and size and is tilted, so I have been diagnosed with adenomyosis. I feel so relieved to have a diagnosis but a bit overwhelmed as there’s not a lot of info online about adeno and I have to wait 8 weeks for a follow up. Anyone else been diagnosed with adeno? Don’t give up and keep pushing for answers ladies you know your own body xxx

[EndoSuckss]

Hi! I have adeno - and appreciate it's a lot to get your head around!

Adenomyosis is the same as endometriosis, but the difference between the two is where the tissue grows. So with endometriosis it grows outside the uterus, and can end up anywhere, but with adeno is grows in to the muscle of the uterus.

Endo can be excised from organs (although, as we all know, this is difficult and doesn't always go to plan), adeno can't!

Happy to answer any questions, as best as I can xx

[Dartmouth93 in reply to EndoSuckss]

Thank you so much, it’s really hard to understand as there’s barely any information. How do you control your symptoms? I wanted to go pill and hormone free but I’m thinking I’ll probably need to go back on my pill back to back xx

[EndoSuckss in reply to Dartmouth93]

Erm... I have a mirena coil and my bleeding is just unbearable without it. I don't like having the hormones, but the alternative is bleeding so heavily that I lose a week per month! However, it hasn't helped stem the adenomyosis as its now quite extensive and I'm booked for a hysterectomy! But not having periods has been a massive game changer for me, and has eased the pain somewhat!

[Moon_maiden]

How are you feeling after op? That’s great you have some answers. Still not going to be easy to deal with.

My uterus was enlarged but at that point it didn’t matter if adeno or not.

I’d second pushing to anyone being told the same. Although my hysterectomy was with an Endo specialist, and lots of adhesions around getting uterus out, he failed to have a colorectal surgeon involved so I’m having to go through it all again as the pain didn’t leave. A different team I hasten to add.

[Dartmouth93 in reply to Moon_maiden]

I feel okay thank you luckily the gas pain has subsided quite quickly this time, activated charcoal tablets and small 15 minute walks have helped it seems. Just overwhelmed as it seems a bit of a grey area. Lack of info so hard to get my head around…was surprised he didn’t find endo as well tbh xxx

[Moon_maiden in reply to Dartmouth93]

That’s great recovery is going well.Adeno is pretty harsh and not easy to deal with.You could request a copy of your records to see more info.

I understand what you mean about being surprised with no Endo.

What did consultant say about dealing with it?

[Dartmouth93 in reply to Moon_maiden]

Thank you, yeah when I have my post op follow up mid December I’m going to ask for a copy of the surgery notes and photos. Recovery has been going ok except my incision wasn’t looking right so went to see the nurse and apparently it’s over granulated which is when it doesn’t heal right apparently? So I’ve got to go back next week. He didn’t say a lot tbh so I’m hoping to get more from my post op 16th December. The only thing he did say was how much the coil helps but I really don’t want to have it so I might ask to go back to taking my pill back to back in 3 month blocks. I don’t know whether he could look at prescribing something other than cocodamol and naproxen for the pain or referring me to pain management, I’m not sure xx

[Moon_maiden in reply to Dartmouth93]

Hi

Great recovery is going well. Is the wound looking white round the edges? Keep as dry as possible, wounds getting wet don’t heal well. Did the nurse say they’d do anything next week or just a check?

They won’t be able to give you the notes at the appointment, you have to apply to a different department, there should be a form on the website. They tend to make it hard to find. Any problems pm me and I’ll take a look. They have 28 days, If you apply now you’ll have them in time for your appointment and you’ll be able to ask questions to cover and ask what’s what in the photos.

Tell GP you need to try some stronger pain relief, they can do others including Oramorph, patches, non opiates like Nefopam. Pain consultant gave me Amitriptyline and Pregabalin. Tell them you want a referral to the pain clinic, at the same time ask them to put all the hospitals including private giving NHS appointments on your account and the booking info, then you can go online and book your own. Booking at private was so much quicker for my hands, treatment stays within as well.

[Bigsize9foot]

Hey Dart, I’ve had my lap today to remove an endometrial cyst and ovary. The consultant expected extensive endo but there is none! However he suspects adenomyosis as my womb wall is bumpy. He may have said more but I was so groggy I haven’t taken it all in. I remember he said this meant it might not help with my heavy periods which is a bit disappointing

[Dartmouth93 in reply to Bigsize9foot]

I was surprised he found no endo if I’m being honest! Had you had scans MRI etc before? Nothing showed up on my MRI and my ultrasounds which were a few years ago but my uterus was bumpy and mottled when he did the lap, so this combined with the fact it’s tilted and pelvic exams, tampons and sometimes sex is painful that’s what gave him the diagnosis of adeno. My aunties and gran all had hysterectomies young and my aunties have confirmed endo so I suppose having adeno would make sense. I was groggy but he was on about the mirena which I really don’t want or taking my pill back to back which might be a better option for me xxx