🥺😡😱

[DAML8]

I know my body and I know that my pain is not phantom. After suffering with endo, adenomyosis and pcos for 6+ years and having 5 operations in 4 years.... I definitely know the difference between endo pain, post op pain and other pains. It’s so upsetting and embarrassing to be accused of having phantom pain ☹️😒 gutted is an understatement!

[angiecxx]

Omg that's absolutely shocking!!!! I would be going to see the specialist appointment or no appointment and i would go mad at them 😡😡. They can see by your records that you have endometriosis. I wouldn't leave it. You must be so angry and upset and I feel so sorry for you. I remember for year's before diagnosed with endo how many different Dr's and specialists and even family and friends didn't believe that i was in so much pain so when i had a lap done and i was told i had endo i was so relieved, little did i know how much it was going to have an impact on my life. I really hope you take it further. Take care and stay safe 💛💛

[DAML8 in reply to angiecxx]

I was so shocked at first I didn’t quite register it but as time went on I realised just how awful his words were. My endo pain has always returned within 6 weeks of all my previous operations (5) and his was no different but he was having none of it! My gp and family have been amazing though and very supportive. My gp has already referred me for a 2nd opinion as he cannot believe their attitude and lack of duty of care. X

[Moon_maiden]

What will they come up with next!

I hope you manage to ignore them. Yesterday I was looking up neuropathic pain and endo, came across an article, part of it sums my symptoms in a big way

‘She described the pain as: aching, sharp, tight, pulling, and constant. The pain score intensity range was (lowest-average-highest): 3, to 5, to 10/10, aggravated by prolonged sitting, standing, lying, touching, stress, driving and/or riding in a vehicle, vacuuming, and pulling. The patient found some relief from “self-determination,” pain medication, rest, heat, cold, and lying down in a fetal position.’

I don’t know if any of this relates to the way you are feeling.

The gynaecologist said after lap that nerves could be involved. I’m considering seeing the pain consultant privately, I think the one that’s part of the endo team is the anaesthetist that was there at lap. More savings spent potentially, but thinking it could be worth it.

[DAML8 in reply to Moon_maiden]

I had my appointment with the pain specialist (nhs) and he just reeled off a list of nerve blocking pain meds for me to try (none of which have worked). He didn’t really ask me about my condition, my pain or give me a ‘plan b’ for if the meds dont work!

I hope you have more luck 🤞🏼 x

[Anastasia17 in reply to DAML8]

You could push your pain specialist for acupuncture. Lady physio, CBT :these are within the Pain Management Department. They usually don't offer. They prefer to dish out ADs/SSRIs that are used in pain management but these have consequences on the rest of the body. x

[Moon_maiden in reply to DAML8]

Gives me an idea of what to expect on NHS, unfortunately.

If it’s the same anaesthetist as the lap he seemed really nice. The nurse said he’d called during the evening to check, my BP has gone up, usually goes down with op she said.

[Moonglo]

Pain is pain 🤨 It’s irrelevant whether it’s ‘phantom’ pain, you still feel it?!

[Nicjane]

That is disgraceful I am in shock, im very sorry you must feel distraught! We need better treatment and recognition! Keep fighting show them who is right (which is oyu you know your body) x