Endometriosis after care really poor?life after surgery and zolodex.

[Kate345]

So I’ve had the surgery, it’s all removed, great news. But I just find the after care extremely poor. Trying to ring the endometriosis nurse for 5 days to book in a follow up with my consultant and no joy as yet.

My last zolodex was 2 weeks ago so I’ve got 2 weeks of that left then I’ll technically be on no treatment..

They basically said to me ‘get pregnant on go on the pill’ as the options.. obviously I’m going for the pill option then I don’t know what happens.. will there be any type of advice or follow up or help? It seems like there isn’t anything?

Just all makes you feel lost, like they’ve done the surgery you’ve had the zolodex now back to being ‘normal’ even though it isn’t normal is it....

I wish I could be on zolodex forever I had such a great experience and shrunk my stage 4 endo down to hardly anything making the surgery will easy for my dr. But I know you can’t be on it forever.

I’m on a gluten free diet, low Dairy and no red meat as suggested by the endo nurse to limit the chances of it growing back faster.. but then what just stay on the pill forever. Seems crazy.

[danijonez]

I still haven’t seen anyone for a follow up almost 9 weeks later, it’s ridiculous 😞 I feel like the after care was awful as well, the only thing they told me to do was to go on the pill, even though I’ve been on the pill for a year and a half. I feel like they dont even bother reading notes. Like I don’t even know the full extent of my problems and everything they did. we’re human beings I’ve had someone cut me open and fiddle with my insides and I don’t even know two months on what fully happened annoys me so much. Maybe because we’re not like alarm bells to them they just kick us at the back of the queue. I hope you get your follow up soon considering how much work was done inside of you, we just have to keep pushing and pushing for things. 😊

[Kate345 in reply to danijonez]

That’s what I hate I don’t know fully what was done!!!

They only thing they can tell me is they removed it all but that’s not the full story. I want to see the photos they took, I want to know of a plan for the future.

They came and told me the next morning in hospital clearly dosed up on morphine and it’s like... ok.. you removed it all so now what.

It’s very poor!!

9 weeks is long my last time was 3 months later but that wasn’t so bad as it was diagnostic and I knew I had endometriosis but only found out I had aydomiosis 3 months later lol!!!!

I don’t even want to see my GP, clueless about the whole thing it’s always best to hear from the person who did it and the expert but the process is too slow!

[danijonez in reply to Kate345]

I hear stories that people see their surgeon the same day and get to see their pictures which I never got. Luckily I had to stay the night so I could then see a doctor in the morning. A young doctor who was present during my surgery came to me and I was telling her I’m in soooo much pain with my right side and did they check what they needed to check (which they didn’t) and she just shrugged that off and said it was my left side they unstuck an ovary and then she left. I seen another doctor and she told me they found large veins which is causing me so much leg pain. But I got no aftercare instructions for any of it like if I should be doing special exercises for my veins so I just sit here till this day still in agony. But my operation was a diagnostic lap so maybe I’ll give it another month and if no post op appointment then I’ll start kicking off. Absolutely fed up to be honest 😐

[Kate345 in reply to danijonez]

I stayed over night he came and saw me in the morning and was like we removed it all the zolodex shrunk it good.. that was the end of the convo and that’s all I know 😂😂

[Starry]

You can write to the surgeon secretary and ask them to post you a copy of the surgeons and write up of your surgery which should include what was observed where and how it was treated (which they are required to document within 7 days I heard). My surgeon sent me a copy automatically as he is good at comms. I found it very useful to plan the next consultation with him.

My surgeon also didnt see me routinely till 3 months (though he came in specially when I got the viral meningitis on day 4) I believe this is standard because it takes 12 weeks for internal inflammation and pain to subside. Earlier would be pointless as its too soon to start to be be able to assess things properly and see where things are at.

If they are reticent with op notes you can issue what is called a subject access request under data protection law and they are obliged to give you all data held about you and have strict deadlines under law to respond by, though they may charge you a reasonable fee to produce the material.

[Niamhy]

Hi

I have also wrote about my treatment after surgery. I developed a infection it’s a long story but it’s in my posts if you would like to know more. My surgeon told my doc he would see me in a year but then the infection wouldn’t go away so we had to keep phoning him after fighting for him to see me he said the infection “isn’t his problem” when he last saw them “they were perfect” I tried to get him to look at them but he wasn’t interested he just passed me on to someone else. Also I ended up in A&E twice then they phoned my surgeon & he told them he would see me but it was a waste of time he wouldn’t even look at them even tho A&E told him it’s infected. I had the infection for a few months, had 7 antibiotics & im still not feeling a 100%. I’m extremely disappointed in how we are treated after surgery I wasn’t given any advice on when to remove bandages or other stuff but I have noticed there are a lot of people who where treated the same as me. I hope they help you soon & good luck 😊 xx

[Endo_This]

Hi Kate, hope you are feeling positive following your excision surgery. I am 6 weeks post op after having my diagnostic surgery in November. I’d had years of abdominal pain so was relieved to find out what was causing the pain. There are so many symptoms that come with endo so we end up feeling like crap everyday! However, I am finally starting to feel more myself! It’s difficult to explain but I feel lighter.

I have to agree that the follow ups aren’t the best. I think because everybody is different they can’t provide adequate advice for individuals which comes across as them not caring. I was advised to take the pill or get pregnant too the morning after my op! I am 34 so will be trying for a baby. But I do wonder what will happen after that, just go on the pill I assume!

I’ve had an appt come through for end of June to go to the clinic which I assume will be a quick 5 minutes check so they can discharge me.

My advice would be try to be positive, eat well, drink water, exercise, move your body! This all sounds like a fob off I know but will help with the anxiety and tension that’s been building up in your body! I have been desperate for somebody to just say if you do these things you’ll feel better. We all know that there is no cure for endo which sucks but by trying to be healthy otherwise you will generally feel better.

I hope all that makes sense xxx

[Kate345 in reply to Endo_This]

I managed to get through to one of my consultants secretary’s and it says that no follow up required but if I want a follow up to arrange One through the consultant who did my first surgery so she’s left a note for her to arrange an appointment and call me back.

I find it a bit rubbish that they no follow up required and you have to do the leg work to get one as I have no idea what they did and what happens now and are basically wondering what to do next

Still can’t get through to the endometriosis nurse

[Endo_This in reply to Kate345]

Did you get through to the nurse in the end? You should definitely have a follow up in case you have questions!

[SB90]

Getting pregnant doesn't cure endometriosis, sometimes in rare cases it may do. Also a hysterectomy also doesn't cure it, the disease can still grow back after removal of the ovaries and womb. The pill will suppress your oestrogen levels and hormones, this is how the disease forms and grows, but make sure the pill has NO oestrogen (female hormones) within it. As this will fuel the disease and make it grow rapidly. Unfortunately the aftercare is AWFUL for most in the UK. Many doctors/doctors nurses aren't specialists and are uninformed or aware of the disease and unsure on how to tackle it effectively. I have been through a lot of this so know first hand and have had to educate myself thoroughly so I know what is right for my body, also my uncle fortunately is a doctor so has supported me during with information. I currently am waiting for my hospital to follow up with my next hormone treatment dose and repeat prescription- as still nearly 3 weeks later they havent sent this to my surgery. Left countless voicemails, messages and my doctors have also contacted as I have to get this every month and will mess up my HRT programme. Absolutely useless is the word in itself. I am sorry you are experiencing terrible aftercare, but unfortunately this doesn't get any better. We also cannot go private as this is a long term chronic illness.. trust me I have tried many a time. Good luck all the best.

[Amycafc]

I had my surgery on Friday and was instantly given a follow up appointment for 18th May.

I too have a million questions that I feel could have been explained to me more before the op... this forum has thrown even more questions into my mind!! Haha. Guess I have to wait until then to find out.

Also I’ve been on the pill for years... that’s one of my questions. I don’t understand how it helps (clearly didn’t help me)

Hope it picks up soon xx

[Kate345 in reply to Amycafc]

Your lucky even with my first lap I didn’t get an follow up appointment through the post till a month afterwards

And now with this one I’ve had to ask for a follow up..if I never had asked I would have not got one this time around

It’s poor but least they are organising one now.

I’m the same a million questions