Anybody else in same boat?: So, i was... - Endometriosis UK

Endometriosis UK
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Anybody else in same boat?

Heloo85
Heloo85

So, i was diagnosed with endo back in late 2015 early 2016. I was then sent through to BSGE as priority. After plenty of stalling I was given excisional surgery in december 2016. I was diagnosed stage 4 sub-type agressive. I have since been under my BSGE hospital on 3 monthly reviews. I have bounced between Zoladex & the pill. Neither of which have been even slightly a bit effective. My Endo is so severe i get PIP. My GP was waiting for them to come up with a game plan, but it turns out, 2 years of umming and arring as resulted in me being left with nothing! They have decided further surgery would be too dangerous. The game plan niw is to try and prevent all surgery where possible. Im still very much under 3 monthly reviews, but other than to have me paying carpark charges, what is the actual point? Wouldnt that appointment be better used on someone they could possibly help, if theyve decided they cant help me?

9 Replies
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Sorry to hear of your struggles. If you are at a standstill maybe you should ask for a second opinion? Or at least a specialist pain clinic? It’s difficult to keep fighting, but you should feel that your condition and symptoms are addressed. Best of luck.

Heloo85
Heloo85
in reply to ChloeV

Hi. Thanks for your reply. My GP mentioned getting a second opinion but is of the belief herself that because i have such serious pathology, and various other factors, that it would be pointless as the outcome would be the same! Both me and my GP waited 2 years for end game, just to find out they dont have one, and likely never will. My GP manages most my symptoms, digestive issues, pain ect so i think pain clinic would just be a waste of time, and again, taking up a spot! Xx

ChloeV
ChloeV
in reply to Heloo85

Just make sure you look after yourself. You deserve all the space you need in this chaotic health system. I had a hysterectomy and bowel excision in December and already feeling better. There should be some options for you too. All the best.

Heloo85
Heloo85
in reply to ChloeV

My first 2 surgeries was balls up to say the least. My first one, diagnostic, possible treatment, under a general gynea lasted 5 mins. He opened and shut me back up. He sent me to BSGE under priority but never quite explained why i was priority as he never took no video/photos. He mentioned something about a 5cm cyst. That was it. My specialist was actually reluctant from start to operate! Eventually he agreed 'intermediate' surgery. Sent me off to a colon guy, who didnt do any more testing either, so effectively they both went in unplanned. It was only once they opened me they realised the extent of my endo and the damage it had caused! (I also had a huge massive infection caused by endo for 3 months before they realised and treated me, which took 6 months of antibiotics). They patched me up, best they could and at that point had decided surgery was never going to be an option again. Not a hysterectomy, nothing! All because they chose to ignore me! Ah well. Not my fault. So now its bounce between Zoladex and Pill and praying they can prevent any surgery. Wont even address what damage the disease has already done, or likely to do. Just to monitor me and pray. Xx

ChloeV
ChloeV
in reply to Heloo85

I’m sorry. This is terrible to hear, you have a lot to accept that seems unacceptable. Have you got all of your reports, results etc? Would it be worth seeing a specialist for a private consultation to make sure there is nothing to be done? The head of the an NHS BSGE centre in London also sees people privately. He could potentially see you privately and then transfer you onto the NHS system if he think he can help. I had all of my Endo excised and given a hysterectomy by a surgeon specialised in gynaecological cancers, so he was used to trickier surgeries. The first Endo “ specialist” also opened me up for 10min and closed me up again as it was too complicated for him. Message me if you want any of the names I came up with in my research.

As a fellow Endo patient I would never begrudge you taking all of the appointments you need to get as comfortable as you can. So whenever you have the energy for it, keeping knocking on doors for options. All the best.

I had only 4 eggs poor quality only had 2 in end used both now I have a lovely amazing 18 month old girl I’m was blessed xx

Hi I am in a similar position I have been told suregry is too risky I am considering a 2nd opinion and i asked for a pain clinic referral I don't think its wasting a spot if you have chronic pain. I have had support from the endo nurse as well which has been great as the consultant doesn't have time to answer a lot of questions.

I am thinking of asking his opinion about the research cited on endo uk website about complex endo and surgery. Sounds like you have a great GP. I am struggling to come to terms with the possibility of never having excision surgery. I appreiate that the risks may on occasions outweigh the benefits. I'm sorry I'm not sure what PIP is ?

I feel similar when I go to consultant appointments people say to me good luck but I know there won't be any new answers or ideas. Take care xx

I cant fault my GP shes brilliant and has helped me all along. Offers advice above my consultant and talks me through the risks of the treatment options. For example im high risk for stroke on the pill. High risk for sudden death on Zoladex, so she monitors me closely! Really cant at all fault her in the slightest!

But im sorry you are in the same boat. Its so frustrating! Especially when we are made to believe that Drs can make us better, to then find out, that actually they cant! I had excision surgery thinking it was going to fix me. My disease returned within weeks! To then find out that the only thing proven to have a chance to work on my type of disease, which is surgery, cannot ever be attempted again. Its a bummer. PIP is disabilty benefits. Xx

I agree endo is rubbish and no cure !! Your Gp sounds amazing glad you have her support. I had a lap and they didn't remove my endo as it was done by a general gynaecologist and no one has attempted to remove it. Sorry to hear excision sugery didn't help.

I wondered about acupuncture for pain, but it is very expensive and I hoped to get it through the pain clinic. Take care and if you want to share again please do. I am happy to share anything I find helps xx

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