I've finally had my Laparscopy and not sure how to feel 🥺

[Mindfullness4791]

I have posted loads on here about my situation with crohnic pelvic pain and multiple symptoms. I finally had my laparoscopy procedure and it's not Endometriosis. They have said it is looking like Adenomyosis as I have a globular uterus, but the only way to confirm diagnosis is histology after the cervix is removed. They weren't concerned about my fibroid (size of a large orange) as it wasn't mentioned, even though I did bring it up.I feel flat tbh. They've also asked my gp to look for other sources of pain?

I am seeing the consultant it 3 months. It was hard to take it all in, as I literally opened my eyes and they were giving me the results. Will I get a more detailed letter in the post?

Thank you for taking the time to read this xxx

[AllthatGlitters]

hello I have adenomyosis which was diagnosed by MRI so maybe ask for that 💛 as for letters all I have ever received is a discharge note from the hospital of an actual letter when I have paid for a private consultation / scan x

[Mindfullness4791 in reply to AllthatGlitters]

I am sorry to hear you have it. I was thinking I might need an mri but not sure if they will agree to it. Ideally, I would like a hysterectomy to resolve it once and for all 🙏 xx

[AllthatGlitters in reply to Mindfullness4791]

I have become very good at telling the doctors what I expect in the way of treatment, be firm with them, tell them you want an MRI. If they refuse ask for the reasons why. Remember it’s your body, you live with this & good luck ❤️

[Mindfullness4791 in reply to AllthatGlitters]

That is very useful advice, thank you. I definitely think I need a MRI. I am going to speak to my gp anyway. It just wears you down mentally amd physically xx

[AllthatGlitters in reply to Mindfullness4791]

Yeah totally get you, it all wears you out, it’s hard x

[Kieraface]

just like all that glitters I also had my adenomyosis confirmed by MRI scan. Sorry to hear that you’ve had such a hard time. Hopefully the pain eases off and they find the root cause. It could be the adenomyosis as that can cause a bulky uterus which can be uncomfortable. Hope you’re sorted soon xx

[Mindfullness4791 in reply to Kieraface]

Thank you. Sorry you have it. I just feel as though I am having to prove the level of pain I am in and how debilitating it is. I definitely have all of the symptoms of Adenomyosis and kind of diagnosed it myself before the procedure xx

[Kieraface in reply to Mindfullness4791]

I had to use private health care to get diagnosed as I spent over ten years trying to explain to my gp through the NHS that something wasn’t right. Sadly we have to fight for a full diagnosis. An MRI can confirm adenomyosis but I think it has to be quite substantial to evidence it. Best of luck getting the right treatment going forward xx

[Mindfullness4791 in reply to Kieraface]

Thank you xx it's awful that you almost have to prove what you are going through. As corny as it sounds, this has robbed me of enough. Fingers crossed I get somewhere at my follow up 🙏 I just need to find a way of managing until I have a hysterectomy. How are you doing now? Xx

[Kieraface in reply to Mindfullness4791]

I hope you don’t have too long a wait. Sadly still in daily pain but it’s something I’m just getting used to living with how bout you? xx

[Mindfullness4791 in reply to Kieraface]

Thank you. I totally sympathise with the daily pain. It actually feels weird not to be in pain. I'm going to try an anti-inflammatory diet and intermittent fasting. I'll update if it helps. I just feel so out of control with it so trying to see if it can help. Have you been given any treatment options? Xx

[Kieraface in reply to Mindfullness4791]

They want to do conservative treatment so I’m waiting for a cystectomy, possible removal of an ovary, robotic excision of the endo and then they wanna use the mirena coil to stop my adeno bleeding. I would like the option of having a baby in the future and if they take everything then I definitely can’t. This way it could still potentially maybe be an option. While I’m waiting on surgery I’m trying to eat clean and do light exercise (mainly short walks) and managing pain with diclofenic, paracetamol and hot water bottles 😅

Did you get any other options? Or just hysterectomy? xx

[Avourneen]

Don't feel disappointed Adeno is a lot easier to treat than endo and with a hysterectomy the pain should stop, not the case with endo. Ask what they are going to do with the fibroid , removing that will probably help a lot too. Call your gynae or write to him/her and ask them to explain what your options to stop the pain are. Adeno does cause a lot of pain but it is much easier to treat than endo so this sounds like a good thing but do push for answers.

Good luck. x

[Mindfullness4791 in reply to Avourneen]

Thank you. I agree that Adenomyosis is a better outcome and going by my symptoms/history I had already had it as a potential. It's just everything is so slow and it is very debilitating. They can't 100% diagnose Adeno until they biopsy it, after hysterectomy. Xx

[Avourneen]

It is all very frustrating, I was diagnosed with adeno and very very bad endo but by MRI . I suppose the histology is just to be extra sure. it takes so long for doctors to take any notice at all of womens symptoms then an age to get them treated.But I hope you get the treatment you need and it all turns out okay.Good luck. xx

[Mindfullness4791 in reply to Avourneen]

Thank you xx I know I just have to go with it. I know now a hysterectomy is the cure so hopefully I won't have to wait too long. There was also talk of giving me another Mirena coil as apparently 1 isn't enough? I have a follow up in November xx

[Mindfullness4791 in reply to Avourneen]

I was also to going to ask. If I don't get any joy from my follow up is it still worth going to see the specialist in Harley Street for scans? Thanks xx

[Avourneen]

I would just to make sure. Let me know if the hysterectomy helps much, I am in pain with adeno and endo but hysterectomy very risky for me so I'd only do it if I knew it would make a big difference.

[Mindfullness4791 in reply to Avourneen]

Bless you. It is such a hard decision to make. I have my follow up in 3 months, so hopefully I will know my options. I will keep you updated and if i decide to go for scans (depending on outcome of appointment) x

[Endosufferer1]

Did you check who was your surgeon on that day? A specialist or a clown?

[Mindfullness4791 in reply to Endosufferer1]

To be fair they are one of the best. It does say one of his specialities is Endometriosis on his information? I've got to the stage where I don't know who to believe. I have had multiple diagnoses so far 🥹

[Endosufferer1 in reply to Mindfullness4791]

I'd get mad if I were you but AT LEAST they've seen one thing! That's already that!

[Mindfullness4791 in reply to Endosufferer1]

I am saving it all up for my next appointment. If I don't get anywhere, I am going to PALS!