Opinions needed? BSGE Oxford centre care

[Amber83]

Hi everyone, I'll try to keep this brief.

After a long journey like we all seem to have had or having I had a laparascopy in June 2015. Endo was found overlying ureter, obliteration of POD, iliac fossa and a few other places. I had a cyst removed but the rest was left?.  I pushed to get a referral to BSGE centre which I eventually got. I received an appointment to see a specialist. I ended up seeing her assistant who was lovely and had MRI scan. I was then refered to a diff consultant who was really nice and I felt like I was finally getting somewhere. The MRI had shown endo and I was told my bowel (sigmoid colon) was adhered to my uterus, there were also nodules found and adhesions. The consultant gave me his email and I was told to think about surgery and email him. I did so but got no reply, I waited but still no reply. I contacted his secretary who arranged for him to call me which he did.  I asked a lot of questions which he answered. He said he would arrange surgery but again I heard nothing so had to try and chase things up. I eventually became so desperate that I emailed another different consultant at the endo centre to which I got a reply and my surgery was brought forward, I was over the moon. 

Anyway the surgery date came round, I saw the first consultant I asked to see. She gave me the whole of about five minutes and briefly explained what she planned to do.  I went down for surgery around 2ish and was brought on to the ward about 5ish. The day nursing staff were okay. But when it came to the nighttime I felt the nursing staff really didn't care. I suffer really bad with panic and was a mess mentally post op. My partner had to leave me at around 12pm, when he had to go I was hysterical (I don't know why I was like this) I felt like I was a complete burden to the nurses and they just left me. I was worried about post op problems as I was told previous to the op that I had to have treatment to my bowel. I wasn't told what had been done and really just needed reassurance. i was awake pretty much the whole night as I couldn't stopped panicking and needing a wee every 20 minutes. The morning came and I had thought that the consultant who did my op would come and see me but a different doctor did. He again briefly told me what had been done and told me the symptoms I'd had were nothing to do with endo! I was extremely upset at what he had said, he made me feel stupid. I was soon discharged and told I would have a follow up 6-8 weeks later....a follow up phonecall?!? I'm now 8 weeks post op and I haven't heard anything, this is not what I expected from a specialist centre but I now feel if I say anything to them that I will be seen as a burden. I just want to know what they did and what happens now? I feel I want to know the details, is this normal? I don't know what to do but the whole thing has just made having endo even worse( if it can get any worse). My pain is better but the other symptoms still controlling my life. If anyone could tell me what they think I'd be grateful, thank you to anyone who reads this xxxxx

[xnanookx]

Amber, you've been treated really appallingly...Do you know Lindle? She's another user you can search for her, she many comment after me, she is amazing, she's who I would go to in your shoes...sorry I can't be much help but honestly she is very knowledgeable I'm sure she will be able to help you out xx 

[Tboag]

Hi, that's awful behaviour, yet again from professional s, 

Don't ever feel like your a burden, you are a patient, and deserve to know what they did with your body, ring the secretary and ask for a date for follow up and ask for a copy of your operation notes, ask her to email them to you, and to you gp, 

Although we shouldn't have to chase things up, we othen do, and can't be made to feel guilty about it, 

We only live once xxx

[JeanOsborne]

Hi Amber, I'm so sorry you have been treated like this, it is not acceptable, and you might want to consider putting in a complaint. 

 You are within your rights to request a copy of the surgical report which will tell you exactly what was done. Please search for Lindle on here as she will be able to help. Just click on her name then message. This would be a private message so you can be completely open with her. She really is the best person to talk to. 

I wish you good luck sweetie .

[Amber83]

Thank you all for your replies.

Lindle  thank you for your advice on this, I do really appreciate it. You are right I am worrying about the future and I do feel neglected and vulnerable.  

And again your right that they did follow procedure just perhaps not with good overall patient care. After years of GP's ignoring me and telling me it's in my head I felt extremely vulnerable but I fought to get the referral to an endo centre.  I had asked to see a particular consultant who I thought was specialist in endometriosis, as mentioned I saw her assistant who wasn't an endo nurse but she was very nice and explained to me I needed to be referred to the endo centre ( which is where I thought I was). I was referred to the correct place quite quickly.  I was seen by a new consultant who made me feel I'd finally reached the right place. From then on I'd expected that knowing they deal with endo, they would know how much of an impact endo has on a woman's life and the care would stay consistent, I thought there wouldn't be anymore chasing, I was aware I would still have to wait my turn and was happy with this as long as I was kept informed.  I understand they are very busy but at least expected my consultant to keep me informed. When I agreed to surgery he said there was no more hanging around for me and I would get surgery within a few weeks, from this I thought he would do the necessary to get my surgery booked in. I left it a few weeks and didn't hear anything when I contacted the theatre appointments they said they hadn't received any correspondence regarding my op. I emailed the consultant who didn't get back to me, as I say I understand they are very busy but even a quick email to say he's very busy would have been better than no reply. I ended up finding the lead consultants of the endo centres email and sent a message ccing my original consultant to it, this consultant replied within a few hours and said he would get back to me which he did and I received a call from the theatre appointments saying my surgery was moved to urgent, I can not thank that consultant enough. ( he provided the care I'd expected). When I went for surgery, it was the consultant I'd originally asked to be referred to? Again I understand they have limited time, she explained very little basically that I had nodules and she was going to remove them.  

After my op when the doctor came to see me, he asked what my symptoms had been to which he replied "that's not to do with the endometriosis".  The consultant that doesn't reply to emails had previously told me that my symptoms are caused by endo or things that endo have caused to happen ie: nodules and adhesions.

On my discharge form it just says excision removal of endometriosis from pelvic peritoneum. Discharge plan says: will have telephone follow up with endo nurse in 6-8 weeks.  I have recently has a letter again briefly explaining the op in two sentences: nodules over both uterosacral ligaments as well as nodule in pouch of Douglas. Superficial deposits of endo on uterine surface and in both ovarian fossae.  No mention of removal of endometriosis in the places found on my previous laparascopy. It's says at bottom of letter that they will follow up via telephone in 6-8 weeks.

Perhaps I am being hypersensitive but I feel after the whole journey with endo, I at least deserve consistency in care and maybe to know that they removed the endo from all areas it was previously found, I feel I need confirmation that they definitely looked everywhere and took it all, I want to know what caused me so much pain and ruined my life. I don't understand why I feel that I need to know all the details but I do. From reading others stories, most seem to have seen the surgeon a few months after and had it explained to them. 

Sorry to go on, one of the symptoms I still have is pain in my sides at a certain time in my menstrual cycle which is at its worst at night, it wakes me. The pain in my legs, lower back, hips and abdomen has calmed down and seems to only really affect me during ovulation and during my period instead of 24/7.  Fatigue and mood swings are still a big problem and I've had really bad bloating since my op (8 weeks) I look about 4-5 months pregnant. 

If you read this, I thank you again. This site and all the people on it have been a massive help. Sending you all massive hugs xxxx