Just fed up with the doctors

[weekari]

I honestly can't believe the journey I've had. I try to not feed into the idea that I'm being let down or have a victim mentality as I know it's unhelpful. I just try to deal with the reality of the now and not get worked up over what's happened or not happened. I've worked as a non medical doctor in the NHS for over 10 years so I know what it's like. I know it's not black and white and there's a lot that goes on that as a patient you're not aware of but I just feel I've had enough of it today and my patience has run out. I'm just so angry.

It's such a long story so I'll try keep my rant to a minimum... I've been very ill for 4 years. I was told 2.5 years ago I had fibroids, then told I showed signs of ovarian cancer, then told I didn't have signs of cancer but may have endometriosis. I had a lap 2 years ago and was told I didn't have endo and my fibroids were asymptomatic so my difficulties (at that time abdominal pain & insane bloating & crippling fatigue) were due to IBS and stress. I then started to have back pain and in March this year, I was told I may have arthritis. I had an mri and was told I had severe endo throughout my pelvis and that my ovaries couldn't be located. I was then told I needed surgery but more scans were needed to plan it as it looked like my bowel was involved. I had another mri and was told, I had endo and a large cyst growing off my ovary and surgery was definitely required to remove it but I needed a ct scan to plan surgery. I knew they weren't telling me everything at this point and became convinced that I had ovarian cancer. After the ct scan, I was told the cyst was actually a fibroid (the same one from 2 years ago) that had endo inside it and it was causing me all the pain but I didn't have endo elsewhere, just inside the fibroid. It's it just me or did all this just sounds like they just don't have a bloody clue?! Meanwhile I'm just freaking out, getting sticker, leaving my job, have no money and having no life.

I was told that the endo team had been looking at everything and advising. I was told surgery would not be the best route and instead I should take zoladex for 6 months and then 'we'll see'. I was not happy with this.

I met with my GP today as it didn't make sense to me and I didn't feel comfortable starting zoladex when everything was so confusing. I didn't feel I could make an informed decision given what I'd been told. All the info was conflicting and I didn't buy the explanations they were giving me- I can't find anything anywhere about endo inside a fibroid. I still felt they weren't telling me everything. It felt like the consultant was minimising everything and just wanted me to be quiet and just do as I was told. (like when I asked well informed questions about endo, he just joked "oh it seems you're reading the same books as us" and avoided the question).

The GP was great and showed me the most recent letter and there is so much they haven't told me. Like the fibroid is pulling my uterus back and up. My uterus and the fibroid are full of haema(something) material. My case was discussed at the oncology multidisciplinary meeting (not the endo one as I was told, also, oncology!). There was great emphasis throughout the letter about how complex and unusual my case was. The letter also stated that my focus was to preserve my fertility... Which has NEVER been discussed with me and is not actually the case. My priority is to feel well and try have a good quality of life. I'm so angry about this. Because of this assumption, they say that I will not be offered surgery as it would mean a hystectomy but that it would be the only way to remove the fibroid.

I wish I'd got a copy of the letter as there was more in it that was medical but couldn't remember everything.

As a result of all this, I'm requesting my medical notes and tomorrow I am phoning the endo Centre to request a meeting with an endo specialist (the GP suggested this). I just feel I'm not being told what's going on. This is my body! How am I supposed to make informed decisions about my treatment when they aren't telling me everything?

I would never have offered a patient treatment without making sure they fully understood 1.their 'diagnosis', 2. The treatment and 3.the full risks of treatment. I don't feel anything has been explained to me. The consultant just kept telling me zoladex was just a 'tiny injection'. He spoke to me like I was an idiot. I knew fine well what it was due to this amazing forum.

I'm just so angry. I had to vent. Thank you for hearing me.

[lol2806]

I’m sorry you’re going through this. I hope you get some more useful answers from your specialist when you speak to them. Have you thought about contacting PALs? Take care. X

[weekari in reply to lol2806]

Thank you.

I've considered contacting pals a few times but I feel I don't even really know what my complaint is. I feel I don't even have enough information for that! I think if I can't really get an appointment with the endo specialist then I'll definitely contact them. And I'll just see what my notes say.

I don't even know what outcome I would like, other than to be fully informed. Maybe that's enough reason to contact them? I'll sleep on it and wee how I feel tomorrow.

Thank you. X

[Maxi72]

Hi there! Your story defies belief. As a health practitioner, we have a duty of candour in our code of conduct. At no point does it seem that your doctors have been honest with you as to what is happening and if I had the energy I would make a complaint ( but I know how this disease affects you and sometimes it’s just easier to put your energy into things that will make a difference.) It sounds like the specialist you are about to see is at an endo centre. I hope so. Given my experience, this will give you what you need/ deserve- all the information, all the options and a specialist with whom to discuss the pros and cons. I would definitely get copies of everything including the letters to your GP (something that my trust copies me in on) so that you can make the most of your next appointment. I feel so angry for you that you’ve been kept in the dark which must be all the more frustrating and worrying if you have medical training yourself. I am sure your next step will be fruitful and I wish you luck. X

[weekari in reply to Maxi72]

Thank you so much. I really just needed to vent and feel listened to and you've really helped me feel that.

You're so right about the energy, chronic fatigue is my main symptom and I just don't have the fight in me most days. Well me would have had a complain letter written months ago!

I've been told that the specialist team are involved in my case so hopefully it won't be a problem to get an appointment with someone.

Thank you for your support. X

[vixstar84]

Hiya, so sorry to read this. I kind of know what you are going through, I've been v poorly and housebound coming up for 2 years now and have a confirmed diagnosis of Stage IV endometriosis and multiple adhesions. I won't bore you with the story but just strongly advise you get an urgent referral to an endometriosis specialist at a BSGE centre - these are accredited to deal with proper removal of endometriosis. I initially was seen by a general gyny who had no idea and told me endo doesn't cause bowel symptoms!!!!!!! Also I was "diagnosed" with IBS, psychological issues and eating disorder - none of which I have - it was all endometriosis!!!!!! My specialist completely validated my pain and symptoms by finding loads and saying how much of a mess it was inside me. Keep persevering - it's your body - and do push to see a specialist otherwise a year on you will find you are still being passed from pillar to post! Good luck with everything x

[weekari]

Thank you for taking the time to reply. It helps me so much to feel listened to and understood.

Is been a general gynae that I've dealt with but he's told me a the endo team have been involved in decision etc but I haven't actually met them. Plus I don't trust the consultant so he may just be fobbing me off so I need to know for myself. I'll phone the centre today and try request an appointment. My GP is behind this which is at least something!

Thanks for your support, it means a lot.

Xx

[Hidden]

Sorry to hear you’re going through.

Know how you feel, I feel the doctors just feed me dips & drabs. I had my follow up appointment 2 weeks & didn’t get told very much about my surgery. He just said “ endo All removed, his bit was done”! And to go back to my fertility doctor. I still have bowel issues which he is saying is hormone related but because I’m trying for a baby nothing he can do to ease it , but he has agreed to refer me to a bowel specialist. I have to see him again because issues with my belly button ( he treated at the appointment)

I feel there is more he is not telling me but what can you do!

You’re definitely not alone with feeling fed up with doctors. ( if that is any consolation)

Definitely pursue this further & you have the right to make a informed decision on what feels right for you. It’s your body & it’s your choice . All the best xoxo

[becky1985]

Hi I’m very sorry you have to go through this. I too suffer from severe bloating. I’m quite concerned they have said zoladex is a little injection!! I don’t want to scare but it is a rather big needle into your stomach. Have they mentioned the side affects? I only ended up having too as I had a reaction to the hrt. Hormones are not my friend. I wouldn’t accept having zoladex as your answer. Especially if he hasn’t advised the side affects. Glad you have a good doctor. What they have advised is a good option. Clearly the gyno you were seeing doesn’t seem to know much. I hope you get the solution that works for you and the actual treatment you deserve. Xx

[weekari in reply to becky1985]

Oh god I didn't know that about the needle! Lol! He totally minimised everything about the treatment - he said if take low dose hrt so I wouldn't have any side effects (which I know isn't the case for many) and now I know he's lying about the needle size too! I went to the appointment to hear about surgery he told me I needed so when he told me everything about the fibroid etc, I was thrown and didn't really have as many questions as I do now. He spoke to me like I was a little anxious about getting my blood pressure taken.

I'm just waiting on the endo centre's reply to my request to meet with the consultant there (the secretary told me she thought it was unlikely) and if I don't get this, I'm writing to pals. I've had enough.

I get the impression the gynae didn't know that much either. His speciality is cancer. He probably describes that to his patients as 'just a tiny lump'.

Have you stopped the zoladex? I've decided I'm going to try alternative treatment and use bio identical progesterone cream to try balance my hormones. No side effects and it can be used long term. Have you looked into it? It sounds promising 🤞🏻