On trial again with another gp...

[BJ13]

Diagnosed 2015-cervix ovaries,bowel. Severe pain starts w/ovulation and builds till period. Sometimes I can't even walk. Pain has spread and increased down my legs etc. Was devastating initially, fought hard bt had to give up teaching (employers couldn't even say endometriosis and I had no energy to fight what was unfair discipline over hospital appointments etc). Now I'm a carer and work part time, live back with my mom after I couldn't cope in my relationship. Sounds depressing but I'm much happier. Just had to accept that I couldn't change the endo so had to change the rest of my life. Wasn't what I'd planned for or worked for but I'm in a better place and try to be positive despite everything. But I have to see a different gp each month for my prescription medication that gynecology and the pain clinic put me on after a disastrous year of being prescribed fentanyl from gp (w/out knowing what it was!). Yet despite all that its like I'm on trial every month having to justify why I need the medication (mitazipine,amitriptyline, pregabalin,zapain, mebeverine &sumatripan) and explain why I haven't been 'cured' with surgery or the pill and convince them that my symptoms and diagnosis are genuine. They don't even read my notes which evidence everything. It's so distressing and disheartening and leaves me feeling very low. Its hard enough staying positive living with this condition and all it would take is a bit of empathy and research for the gps to know that nothing fixes endometriosis and how devastating it is to have a chronic condition.

Does anyone else feel they're on trial even with definitive diagnosis etc.? I saw ANOTHER gp today who was particularly bad and its really knocked me 😢

[Lindle]

Hi -were you operated on by a team in a specialist endo centre back in 2015?

[BJ13 in reply to Lindle]

No

[Lindle]

Since 2008 severe endo should only have been operated on by a specialist team in tertiary care, but a detailed treatment specification for complex cases was issued by NHS England in 2013 an the latest NICE guideline issued in 2017 makes this clear. There really is no excuse for doctors to not know this.

Trouble walking is typical of deep rectovaginal endo (cervix glued to bowel) and is the hallmark of severe endo. Other symptoms usually include lower back pain, pain with/after sex, pain/difficulty with bowels, shooting pains generally.

You need referral to a specialist centre. I run my own group that guides women through all the guidelines. Will pm you. x

[Horseyjules in reply to Lindle]

Hi just read this and it was like a lightbulb moment. I have had these symptoms but never been diagnosed with endo. Bowel consultant just keeps saying he will see me again in so many months (6years+now) and I have a irrigation system at home and bowel meds. Had a total hysterectomy in Oct after gyny tried zoledex injections and other meds. During the op he said he removed adhesions from my left side but no mention of them in my op notes and he couldn't tell me anything else when I asked him. I hadn't had any previous ops to cause them. Syptoms eased after op but have now come back slowly over the last 2 month. I was gutted as thought I was fixed everything was working so much better after the op. I seem to be just stuck as well. Xx

[Lindle in reply to Horseyjules]

Rectovaginal endo predominantly affects the left side. Will pm you. x

[Afrohair]

That’s awful and I can relate a lot to the not reading notes part it’s vile I’m 10 month into a confirmed diagnosis but specialist is 95percent sure I’ve had issues with walking etc and now facing issues. With work and g.p it’s putting me in depression I’m sorry your relationship didn’t work out I know it can change my partner is struggling to come to terms with the new me and so am I but good job your mum is their for you .sending hugs

[Scottoe]

Are there any GP’s in your practice who you like and feel like they understand? If so, could you ask them for a repeat appointment for the following month? I’m not sure why you have to go see them every month though and why your meds can’t be on repeat prescription, with medicine reviews maybe 6 monthly? Maybe worthwhile asking if this is a possibility?

Alternatively I’d look into changing GP surgery if you feel like you’re not getting the help you need. Sending virtual hugs as know how frustrating and horrible some doctors can be. I’m lucky just now because I always see my own GP and she’s amazing! Fingers crossed she doesn’t retire anytime soon xx

[BJ13]

I used to have a regular wonderful gp when I was considered high priority but since I've learnt to manage things better and made changes to my life I've come to terms with it and am on medication that helps so that doctor is very hard to get to see. I'm taking my mom with me next appointment as an advocate as its very hard to say what needs to be said when I'm already anxious and upset about the last few times. Some of my meds are controlled drugs so I don't know if they will let me have them on repeat but I'm going to try and push for it. Thank you all for your support and feedback. It helps knowing there are other people who know what it's like. Endo can sometimes seem like a very lonely road especially when things knock you xxx