It pays to complain- met with endo speci... - Endometriosis UK

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It pays to complain- met with endo specialist at last

weekari
weekari

Hi Ladies,

Like many, I've had a looooooong journey- 4.5 years of crippling fatigue, bloating, abdominal pain and back pain, which has completely derailed my life, as well as 'IBS' from the age of 12 (I'm now 40). I had a lap 2.5 years ago by a general gynae which I was told was clear of endo but just had 2 fibroids and have been landed the labels of IBS and vague psychological causes. I then gave up on getting help medically and have sought a lot of alternative treatments, which have played their part. My full story is in my bio but in short, I had an MRI in May through orthopaedics and was told I had severe endo. The diagnosis was vague and even when I met with the gynae (the same one who did my surgery 2.5 years earlier), it all felt vague and as though I wasn't being given the full story. The treatment they offered me also didn't seem adequate.

I wasn't happy with this so I requested my medical notes and found out that they really hadn't been telling me anything- they couldn't decide what was going on inside me with the endo specialist team saying it didn't look to be a typical endo presentation and they were querying cancer and the cancer team saying it looked like endo. In the endo, I got left with the cancer team but offered zoladex for endo. They also had made an assumption that I didn't want surgery because fertility was a priority which is not the case and had never been discussed with me. I don't have children and I'm unsure if I want any but I would definitely forgo my chance at a family if it meant a return to good health and I could start living my life again.

So, I did some research, got some amazing help from another site and wrote a letter of complaint to the endo service. I got a thorough letter from on the the centre's endo specialist apologising and explaining that my case was very complex and he offered to meet with me to discuss my case and the treatment options available. I met with him last night, the consultation was almost an hour long and he explained everything to me, using my mri scans etc to do so. He took a full history of my symptoms starting from the beginning. Showed me genuine empathy and spoke to me like I was an adult. He explained that neither he or the endo team radiographer who is the lead in her field has ever seen anything like my case and they're really not sure with what's going on. But, we've decided on a plan of action, which is to do a exploratory lap and I've agreed to some treatment if needed but if it's looking like a 'pelvic clearout' (what a term!) is needed, they'd do that in another surgery so it could be agreed with me first. I felt it would just be too scary to go into surgery knowing that the outcome could be anything from a cyst removal with a tiny scar to a full removal of all my reproductive organs with a full abdominal scar. He is a getting another, even more experienced surgeon to join him in the surgery, so I really do feel I'm getting the best treatment I could. He's suggested that using zoladex for the next 2-3 months in the run up to surgery might help, as things could shrink and it could mean it's easier to remove and they're will be less vascular risks (I have fibroids too), so I'm going to start that ASAP. Yay hot flushes for Christmas! 😂

I think given the situation, I'm as pleased as I could be.

I'm of course angry that it's taken this long and I've had to go through SO much to get this and I've not even had any treatment yet but I do feel that, at last, I have been listened to, seen and someone is taking responsibility for me- he even said that to me.

It really ridiculous that I feel a grateful and surprised to be treated this way but that's due to my experience over the past 4 years.

This outcome has only happened because I trusted my instincts, requested my medical notes and realised something wasn't adding up. I got some help to write a letter of complaint, which I really needed- partly due to my extreme fatigue but also as I find it difficult to be this assertive and 'demanding' (it's not demanding to ask for proper medical help but it feels like that for me). I really can't explain just how bad things were getting for me. It really has felt at times that there was no point to my life but I'm hoping there is going to be something that can be done to help.

I just want to encourage anyone who is in that awful position of being fobbed off and made to feel that they are being a hysterical drama queen, that it really is worth complaining but to do your research first- get your notes (it's easy) and try to find out as much as you can about national guidelines etc so you have something behind your complaint. To anyone who is feeling that they're being fobbed off or not listened to, just don't give up, keep fighting. You are not a hypochondriac. You're not a drama queen. And you deserve to be listened to and treated with respect.

I am happy to share any info or pass on my letter to anyone who thinks it could be helpful- just contact me.

9 Replies
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Good for you Weekari!

Delighted for you.

Id have it written on my file that there are pyschological reasons for my pain/ailments I bet...fibromyalgia was mentioned and I hate to say it but there is a scepticism of that condition by some folk, it gets a bad wrap of an airy fairy elimination type of an illness. Which it shouldnt but peoples opinions are there arnt they.

Im actually post hysterectomy and battling with "slightly abnormal " thyroid results yet very heavy symptoms so again Im trying to get my Dr too see my symptoms not my blood results.

Good luck, I answered another one of your posts today.

Great you got a bit of validation.

There is also the PALS department of any hospital for your complaints etc.

Best Wishes

Helly.

Hey!

Yes, in my notes there is a lot of me referred to as an 'anxious lady'. It's ridiculous. If course I'm anxious, I've been ill for 4.5 years and have had to end my career, go on benefits, declare myself bankrupt and I lost all my friends. If this didn't make someone feel anxious, I think there would be something wrong with them! 😂 But having anxiety, or any psychological experience, doesn't mean you don't also have a physical condition. It makes me so angry!

I know what you mean about people's perception of fibromyalgia. It is a real condition but a lot of people, including some doctors, don't have a good view of it.

It sounds like you've really been through it. Was your thyroid OK before your surgery? Hopefully you can get everything balanced soon so you can start to feel the benefits.

I'm in Scotland so we don't have PALS we have another system which is run by the citizens advice bureau, which I've not had a good experience of in my area. That's why I decided to just take it on myself. If you want a job done right, do it yourself! 😂

Xx

Flip Im in Northern Ireland its maybe not PALS here either 🤔 Ive always just went on what was said on here lol!

Yes - anxious ladies, hypochondriac, etc etc it all springs to mind.

Ive lost everything you have including bankruptcy status in 2012,

Friends just cannot get their heads around you canx plans and always being in pain.

My thyroid may have been thrown off by the new hormone levels it probably was never 100% Weekari as my sister and mother both have went Hashimotos (hypothyroidism) underactive so this was almost bound to be in my medical pipeline....

The 9 mpnths post hysterectomy have been really tough. Physicall recovery, pain levels, Adjusting to hormones and now thyroid issues, also still suffering chronic back pain and reduced mobility, more associated with endometriosis of my bowel than my 3 bulging discs I think 🤔....its just been alot. Its been the toughest time of my life to date.

Sounds like Christmas is gonna be fun for us eh!

Weekari Im only breaking through my back pain in the past 3 weeks having been on Pregabalin about 5 weeks now, 2 x 75mg a day from week 3, upped from 2 x 50mg per day.

If its not something you have tried its really working to turn down that searing gnashing pain in my flank area?

Good luck fellow long haul sufferer.

I still remember at about 18yrs being put on metformin for polycystic ovarian syndrome and chucking up in a hedge on the way to work, an absolutely horrendous drug for me!

Helly.

I was the same recommending pals on here and then when I went to use it myself, that's when I found it is not the same in Scotland! 😂

9 months post op and you're still going through all this?! I really feel for you. We just hope these huge interventions will be the big fix and it's so difficult to go trug that and still suffer. Have you had any improvement?

It does sound like you were bound to get hashimotos eventually. Just a bit unfair you're whacked with it now!

I've actually just started on cbd oil, 5 weeks ago now and it's the first time I've managed to get my pain to a level I can sleep and function. I'm still struggling but it's a huge improvement. Im a bit of a 'go natural' as much as possible type.

Were you treated in an endo BSGE centre? That's what I've been fighting for. It's been some fight!

Xx

Good for you Weekari! I am so pleased you have finally got some answers and have a plan for your treatment etc.

Best of luck and thank you so much for Sharing x

Wow, I empathise with everything you say. I have also tried to do the same by complaining but by myself without help and I have given up for now as I miraculously became pregnant whilst still dealing with 12cm cyst in there to be careful of plus all the adhesions and bowel obstructions throughout the pregnancy.

Thank you so much for sharing. I hope you can start the new year feeling a bit more relaxed that they are going to do something for you soon! I know it's so hard.

If possible could you contact me with the details of who helped you to make your complaint? Are they a service that may be available to others?

Thank you again and sending you lots of best wishes xx

Thank you. I definitely do feel a sense of peace knowing that sometimes taking responsibility for me know and the consultant actually said that to me, that he was aware no one was doing that and that he is now going to. I felt a little emotional when he said it. Its a weight off my shoulders for sure.

I will message you about how I got help.

Xx

Hi, I’m so glad u have got somewhere. I understand I’m 43 and was diagnosed at 21 but that was with a fight! I’m suffering now as been on zoladex for over 20 years. I seen my consultant in jan as I just can’t cope anymore. Hearing your story has made me feel more positive about them not just fobbing me off this time. 😊

weekari
weekari
in reply to Elhems

Wow, you've been on zoladex that long?! I thought 6 months was the maximum? Are you being seen at an endo BSGE specialist centre? As far as I've read, endo can still develop while in hormone treatment, just maybe a bit slower & helping with the symptoms.

I would really encourage you to complain, living in pain and on inadequate treatment, really isn't good enough. From what I'm gathering, it seems that trying to see a endo specialist is really key in getting the right treatment.

Good luck! X

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