feeling super lost, scared and alone right now

[honeyhills]

Hi Everyone, can't thank you all enough for your support and advice. I felt I'd made my decision to keep going with medication to help stop the endo progressing and I have written to a couple of BGSE accredited specialists, some private, some not and hopefully get a clearer picture. Finally feeling hopeful and like I have a real control over the condition.

Unfortunately, over the weekend for whatever reasons, my boyfriend decided that it was all a bit too much for him and has left me. So now I'm hurting a lot, but know that really it allowed me to dodge a bullet because it's obviously something he's not up to for whatever reasons. I now have to move house in the middle of being really poorly.

How can you love someone and leave them when they need you the most?

Sorry that it's not massively endo related just feeling super lost, scared and alone right now and wanted to rant a little.

[dodgeviperdiva]

ahhh sweetie I'm so sorry to hear that ur suffering 🙁 u definitely didn't deserve that, I've been there done that with a few relationships 😔 I'm actually really lucky that I have now found a real relationship and he's so supportive 😊 if you ever want to chat endo related or just a rant please let me know xxxx

[honeyhills in reply to dodgeviperdiva]

Thank you! It's nice to know there are people out there who can be understanding! X

[Moon_maiden]

So sorry you are going through this and he couldn't understand. It doesn't have to be endo related, this is all about what's happened because of the condition. He'll find out that life isn't perfect at some point. Do you have family support? Moving isn't easy at the best of times. I'll be doing the at some point in the coming months, I can empathise. If you are looking at finding and Endo consultant, don't be too fixed on them being BSGE, experience is a key part. The criteria is only based on them doing x amount of rectovaginal endo laparoscopys, nothing that protects the patient.

You sound as though you are looking to the future, considering what you are having to cope with, is amazing.

There's usually someone here to talk to, do pm if you need to, take care.

[honeyhills in reply to Moon_maiden]

Thank you so much. My mum is trying to be supportive, but she also see's his side of it and she doesn't fully understand endo despite my best efforts to help her educate herself. I'm having to stay at hers at the moment as I simply can't be there right now which is presenting it's own challenges.Interesting what you say about BSGE, as I've tended to hear the opposing, but really you're right! I'll definitely focus more on they're experience as opposed to the accreditations.

Thank you again x

[Moon_maiden in reply to honeyhills]

It’s very difficult for you, hard to move back in even for a short time. Keep telling yourself it’s temporary 🙂Have you ever asked your mum if she had/has bad periods? It can be hereditary, she may have just coped and got on with it, that’s what I did.

There’s useful info on endo uk website, may help your mum understand.

You seem really positive given everything 😀

I was at BSGE last year, gynae did op without telling me no MDT after being told that’s what they were waiting for. Still in pain, referred to another centre. Small bowel loops showing as tethered to pelvis. They won’t do anything as think it’s post up adhesions. I spoke to a colorectal surgeon last week and he’s happy to take a look. Speaking to gynae as poss joint op, they don’t go just by scans. Not a registered centre any more but very experienced.

[honeyhills in reply to Moon_maiden]

Yes, I do keep trying to point her in the right direction without being too pushy, also conscious of the mental toll it takes on us to constantly have to explain ourselves and educate others, sometimes even doctors! My Dad's Mum died when he was young of ovarian cancer, which does play on my mind. But my Dad doesn't seem to know anything about it which is frustrating! My mums never suffered, makes it hard for her to appreciate.Haha, I'm trying my best, I just want to stay as mentally well as possible to be able to focus on my physical health as much as I can!

Wow, I'm sorry that's happened to you, just goes to show how important it is to find the right doctor for you and your circumstances! Glad to hear you're following up elsewhere, hopefully new surgeon will help X

[Moon_maiden in reply to honeyhills]

It’s awful with a history of bad health in the family, your dad has probably never talked about it, hard for him now. Hopefully he may open up at some point, quite likely doesn’t remember much. How are you at the moment? Good weekend? 🙂

[honeyhills in reply to Moon_maiden]

I think after a whole week I’m finally coming to terms with the breakup, it’s been hard as we share a flat which I think has made it harder. But I’ve deleted social media for a bit and I’m trying to concentrate on myself… lots of self care this weekend haha! I started on HRT last week so my emotions are so all over the place even more than normal, it’s definitely a rollercoaster. X

[Moon_maiden in reply to honeyhills]

I do understand the property sharing and it’s hard, good you’ve done things for you 😀 hard to do that as well.Here if it helps to chat 🙂

[MusicallyBent in reply to honeyhills]

Wow, similar- My Dad's grandma died of ovarian cancer. She went in to see her GP and told him that she had bad pain in her lower abdomen and it was hot to the touch, and his response was to tell her she was "as healthy as a horse." Two weeks later she was admitted into the hospital and died of ovarian cancer. I agree with you, so frustrating and this is why we need to look out for our own health. Keep advocating for yourself!🙂

[Moon_maiden]

Doesn’t it just 🤦‍♀️, until you’re in the thick of it, it’s hard. I’ve always been pretty empathic with different conditions for various reasons, but this is a whole new ball game.You’ve definitely got the right idea 😀

Best tip is make sure they answer every question you have, and they know what they are doing.

I really thought I had the right dr last year, put it this way, he’ll be regretting the steps he took 😂.

Don’t let the surgeon rely on scans either.

[ZiggyandBC]

I’m so sorry to hear you’re struggling! If he can’t handle your illness then you definitely dodged a bullet, your partner should support you and be there for you through thick and thin. Remember you’re a strong ass woman who deals with this awful disease daily, you deserve to have someone who will be just as strong for you! I’m 4 weeks post op after my laparoscopy with an endo specialist so it you have any questions feel free to ask - or if you just wanna vent about your ex I’m here for that too ❤️❤️

[honeyhills in reply to ZiggyandBC]

Thank you for your reply. You’re soo right, it’s so hard to realise but if he was the one he’d stay by my side when I need him the most! Keep trying to tell myself that really I’m lucky he didn’t do this 5 years down the line. Glad you hear you’re post op! How are you doing in recovery? Do you mind me asking if you got it done on NHS and how long you waited? Im on the waitlist and seems like everyone’s waiting different amounts of time because of Covid! X

[ZiggyandBC in reply to honeyhills]

Keep reminding yourself that he’s not the one for you and you’re better off with him out of your life if he can walk away because of something that’s out of your control! Break ups are absolutely horrible! Yeah lovely I had mine done on the NHS, I was added to the waiting list in Nov 2020 and had my pre op in Jan 2021 but only had my op in June but this was after a lot of hassle and me chasing up the doctors to try and get a date, I ended up asking for a consultation with the specialist who would do my surgery (instead of the general gynae that added me to the waiting list) and thankfully he listened to me and I was after our consultation I was given an operation date the day after! I was told that the list will go down quicker now they’re operating more so hopefully tou won’t be waiting too long but keep calling them and advocating for yourself! No one should have to live in pain xxxx