Recent Diagnosis, and finding it all a bit overwhelming

[PanicAtTheHorizon1]

Hello! I had a laposcropy yesterday and was told I had severe, deep infiltrating endo. Particularly they were worried how close it had come to my kidneys. I'm waiting for the follow up appointment, but I want to get my head around what my life might be like going forward, but have no idea on where to start researching this! Any tips are welcome!

[Bakewey]

I know exactly how you feel - though you know something is not quite right the language used to describe the impact of Endo is scary.

I have been waiting over 10 weeks for my follow up conversation! Tried Dr Google which eventually led me here, and it fair to say the information shared here is in layman’s terms that I understand and is less worrying.

From what I gather, you will either be placed on a watchful waiting list or some form of removal surgery will eventually be offered.

Please, try not to worry, try to keep yourself as healthy as you can and take time to enjoy the little things in life.

Wishing you answers soon.

[PanicAtTheHorizon1 in reply to Bakewey]

Thank you for replying!

I've had the removal done, as much as they can and now just waiting for that appointment to see someone soon!

I hope you get your appointment soon!

[BloomingMarvellous]

Oh PanicAt The Horizon,

First, you’ve got the lap done and getting there has no doubt been a wrangle and probably taken an age - so that’s a huge well done for getting this far. You’re all post operative and you get news that’s ruddy hard to process. It’s a hard swallow at the best of times to begin to get yourself around.

My first thought and experience is it’s a swirl of questions, maybes and total well panic and numbness. Relief at knowing and that utter fear and speed thinking about the worst all jumbled up. Feeling perplexed and alone. Best advice …. Breathe. And again . Cry as much as you need to, talk to those who are supportive of you , journal all the worries and fears down because amongst that lot will come you essential questions. You will need time to emotionally process this all and that won’t be in a jiffy. So my best advice is take time to come back to a new even keel, be kind to yourself and reassure yourself you’ll do the best you can for yourself in the future. Overthinking the what ifs once you’ve done the research and got the information is a surefire way to scare the sh*t out of most of us . So do whatever makes you feel the best and most grounded for yourself a lot.

I hope your follow up isn’t too far off and that you are being seen at a BSGE centre with medics you can really grill. Keep asking them questions until you are satisfied with the answers and really comprehend what they are saying. Clearing the Endo from around the kidneys will be important to preserve its functionality so they will be extremely keen to sort that. What precisely it will mean for you is at this stage a crystal ball exercise as there’s too little information to go on and even they won’t be able to give you a precise pathway of the future or how you’re Endo will behave going forward.

I know that I found this place a difficult lonely place , but there’s lots of info here on the forum, Lindle is a font of good surgical and pragmatic understanding about DIE and medical treatment in the UK and runs a FB group. There are things to do to self support and understand the illness and I don’t know how long you’ve known about Endo or been treated so ….

In the meantime we are here and please look after yourself.

[PanicAtTheHorizon1 in reply to BloomingMarvellous]

Thank you for your reply!

I've got some relief from knowing they've managed to remove as much as they can for the time being. It's just those worrying next steps that feels me leaving a bit blind at the moment!

Thank you for sharing info about where to look, it's really helpful!

[BloomingMarvellous in reply to PanicAtTheHorizon1]

Hugs. It’s such a difficult but good in a bizarre way to be in the process. I found the following things helpful for self care / support alongside the medical needs and stuff.

Curable App - free 6 weeks trial from Gp prescription or 2 weeks free if you sign up yourself. Helps me with the panic and anxiety and catastrophisation I tend towards as well as the pain.

Understand pelvic floor function role in pelvic and urogenital health try podcast by @leah-brueg with Dr Angie Muller - Number 52 I think on her podcast link. Investigate pelvic floor support with both your specialist team referral and try @corerecoverypt .

Background info and sensitive realistic tips from Katie Edmond’s book Heal Endo. Will give you a good foundation and someone who has Endo herself. Encouraging stuff as it’s the best approach is based on your needs rather rather some fluffy notion it can be alll soooorttted without medics which is so unhelpful and unnecessary.

Your body will take time to recover from what’s already been done so please take it easy.

[K2023]

Hi, did they explain where on your kidneys ? It’s a bit vague of them to just throw close to kidneys at you and leave it at that ,but that’s consultants for you . I had an endometriotic mass around my kidney ureter the kidney was swollen because of the pressure from the mass , it was explained to me Die generally affects one kidney can go to both. I had chronic urology symptoms, needed a wee every 15/20 mins , pain from kidney pressure all around mid flank across back and under rib. I was classed as urgent case after my diagnostic laparoscopy but took them 10 months to get MTD team together . I had the surgery last year 8 and half hours , as the deep endo had caused havoc in bowel and everywhere else , I had a total hysterectomy . I would ring your consultant secretary and ask is it being requested that you see urologist ! That should be the next step from them .As they will send for scans to see if kidneys are being affected ! The consultant should request blood kidney functioning test also . It is scary hearing the words kidney involvement but now being on the other side of it , I wish I knew then not to read into it online as I had 10months of total anxiety and worry . Hope this eases your mind sorry bit long winded 🫣

[PanicAtTheHorizon1 in reply to K2023]

Thank you for your response!

I've had as much cleared up as they could and it hadn't yet reached my kidneys, but was mm away from doing so. I think they are going to send me for scans, but they said all that will be discussed at my follow up appointment, so its all a bit vague at the moment which probably isn't helping me! But as you say, that's consultants!

[BloomingMarvellous]

Take some control. Call the secretary and ask about expectations on time scales and when to remind them . Say you are feeling quite overwhelmed with panic about this and would appreciate so information to help moderate your concerns.

[PanicAtTheHorizon1 in reply to BloomingMarvellous]

I will do! Thank you! I've had to chase everything else up until now so I don't expect that to change!