So angry and upset

Hello everyone hope your all okay.

I'm having such a tough time. My app. to see the consultant came through for 14 weeks after my op!! Which is just ridiculous as I'm not on any kind of medication.

I went to the doctor today to ask for a earlier follow up so I can get started with a treatment plan and while I was there I explained all my symptoms of. Being constantly tired, feeling sick, feeling faint, bloating, pain in my pelvis all the time, pain in my bum, every time I wee it feels like a urine infection. Her response was that's endometriosis nothing I can really do. Which is not helpful!!

She also got a letter from my consultant which I have never seen before saying what was going in the lap. It said I have significant endo on my bladder, ovaries, tubes and pouch of Douglas!

My mum was told it was just my ovaries and tubes I'm so upset I feel completely out of the situation I don't even understand what is happening and know one can explain to me ;(

It's really getting me down and I feel so low. I'm 20 and should be enjoying my life thinking about making a life and settling down to have children in a few years. But no I don't think I can.

I feel so betrayed by my doctors as they sent the letter to my old address! They are supposed to be professionals!!

Sorry for ranting I'm just so upset and feel like this endo is ruling my life ;(

Hope you are all well xxxx

7 Replies

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  • Ah honey it's really hard.

    I would strongly recommend calling your Consultants secretary directly - they can often get you appointments quickly (mine could get me in the following day even though my consultant was notoriously difficult to pin down). Explain that even if it's just 5 minutes or a telephone conversation you would really appreciate it. Be super duper nice and sweet, but then if they can't help call PALS and do a formal complaint, you should have a follow up on average 6-8 weeks after your op at the very latest. Even if you can have a telephone consult where they can at least offer to write to your GP with a suggestion of a temporary treatment plan: even tri-cycling the pill for the time being until your proper appointment.

    I would also suggest taking the time to research your options regarding treatment so you are aware of your options and can discuss them. Try Endo for Dummies book, or the Endo-Resolved website.

    Good luck x

  • Hi Laurenb19,

    Unfortunately your situation sounds all too familiar. I had my first lap 3 years ago and had to wait 3 months for the appointment with my consultant as they were going on holiday and 'hospital policy' meant I couldn't see another consultant, which was ridiculous as I'd already seen 3 different ones leading up to my lap. Anyway, I went to see my GP and they were kind enough to write to the hospital and I was able to get in a month sooner. The suggestion about writing to PALS is a good one, my brother in law is a GP and said that PALS have 3 weeks to deal with your complaint. You could write directly to them, lay it on thick about the emotional side of things, very poor communication (which I think is bad but in your case appalling) and the fact you are trying to get on with your life but can't until you know the facts about future treatment. If you don't want to write yourself, my brother in law says that there are GP PALS Liaison Officers, your GP may be able to write to them for you, this may add more weight to it.

    I know it is really hard being taken seriously by any medical person, but do keep going.

    Be strong and take care.

  • Thank you both for your support.

    I am going to call his secretary today and see what happens. I am just so upset that this is going on and it's worse than I thought and I wasn't told.

    My mum is going to make a complaint as it was sent to the wrong address! Which there is just no excuse for!

    Have either of you tried Cerazette?

    Hope your both having a pain free day xx

  • Hi When I was 20 just had enough,as I felt I was under attack,then I got my dream job,and had something that was mine through hard work,and I made my mind up that Endo might have ruined my life,but no more I went to a homeopathic practic,got a load of B6 and other natural theraphies,and felt I was now in control,within a month things were a lot better for the first time I didnt need a D&c and I felt that maybe just maybe things will be OK and I realised if you thing negative it affects everything,so chin up and find out about natural remedies which have been around a 100 years or more and take control Crystalgirl

  • Hi, I had my lap done in feb, I to had endo in pouch of Douglas, blocked tubes and cysts removed on ovaries, it took me a couple of months to even feel slightly normal, my doctor put me on the pill three months on then have a period, so I only have a period four times a year. She also put me on amitriplyine to help with pain, I was taking this up until two weeks ago and I feel sooooo much better. My very good gp also told me to take zinc and higher dose of vitamin D which you can get from healthspan online. Hope this helps you x

    My consultant was very pleased with what I was doing and wants to see me again in November x

  • I totally understand why you feel upset and its fine to rant you need to talk about it. Thats just not on about not telling you the whole picture as you have a right to know, have you asked for a full copy report of your lap because you're entitled to have it. I really feel for you I am kind of in a similar situation although I was given a report saying that I only had a few spots on the right side of my pelvis but I am still having pain and bladder symptoms, and some digestive issues but changing my diet has helped that a lot. And I havent had a follow up yet, I had my lap in March and my follow up isnt until 9th July exactly 4 months afterwards and I was told it would be 3 months. I hope this appointment helps you hun and you can get a pain management plan, big hugs. Let us know how you get on xx

  • Hi,

    totally understand also! I was told after my last laparoscopy - they'd removed 2 cysts from my tube, and that i have 2 areas of Adenomyosis, bulky womb. Told I would have a follow up appointment in 8 weeks,

    after calling the secretaries and waiting & waiting for follow up app...I ended up calling Pals , they solved the issue immediately, they got the secretary to book me a follow up appointment,

    also the secretary read some notes- turns out i have endo on pouch of douglas, which i had know idea about. ! Also they said they'd sent a report to gp practise in april, Gp in previous visits seemed to know nothing about this. .

    It is hard to know where to get information when you are told one thing, and then of course it's tempting to google your condition & frighten yourself too much!

    I'm so glad for this forum, It makes me understand the disease & how we can look for answers.

    best wishes, & I hope you get some good advise, I guess my only advise is: take care and try to do things that are relaxing, as stress will only exacerbate the condition. ask others for help, If you haven't already then contact the pals support, they are really great.

    Also you could write to the practise manager? or maybe change Gp to one that has an special interest in Endo?

    Also I found that going to a nutritionist was really helpful, and some people say accupunture has really helped them.

    take care xx

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