Reluctantly and entirely due to my complaint via PALS, I was swiftly booked in for an MRI to check the position of an IUD that has been causing me tremendous pain for over two years (and to look for endo etc)
The gynae was defensive and frustrated with me, she tried to use waitlists against me for wanting an MRI before going on the laproscopy waitlist. However, I refuse to be bullied by medics who have gaslit me my whole life anymore. I'm nearly 31 and I've had enough. I was also recently laid off from a freelance role i had for nearly 2 years, another precarious remote job thar I was forced into due to my pain and lack of support.. so I have time to focus on my health again.
The appointment was two weeks ago. Yesterday I had my MRI! The gyane originally booked my next telephone appointment for two months time... she clearly did not think the MRI would happen so fast. I enquired about the endo lead at the hospital and said inwpulf expect to be treated by him in the future, regardless of wait lists, so I do wonder if he has caught wind of my situation.
I can't even get in touch with the gyane's secretary so I'm not sure when I'll actually get to discuss the results.. however
Half way through the MRI the assistant asked me if I'd ever had surgery on my uterus... I have not.
I assume this means they have seen scarring? If anyone has any experience with endo showing o MRI please let me know 🙏
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MoominBabe92
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I know thank you! I really feel for people at the very start of their endo journey because so many people can't even seem to get an appointment right now x
Well done you for standing up for yourself. Sadly getting proper treatment for endo seems to be a case of having to fight for it every step of the way. If I were you I would try to get a refferel to a different gynae, any gynae who has suggested you have a lap before you have a scan is a very poor surgeon and not following correct procedure at all.
The MRI should come witha full written report to explain everything and a copy should go yo your gynae, you and your GP. If the gynae is unhelpful try the GP. It sounds as though your gynae is defnesive , maybe she knows she has screwed up putting in other IUDs ? otherwise why the desperation to stop ypu getting the MRI and checking the situation out properly?
Have a look online and see if there are any gynaes who specialise in endo in your area, try to get a refferel to a proper endo specialist. Non specialist gynaes often make a mess of endo ops and you end up needing another op to put things right.
Thank you so much for your reply! Yesss this is what I have heard but I would have had no idea about advocating for a endo lead if it wasn't for this community 💘💘
I was very adamant I want to see the endo lead in my appointment (he seems very good) and she used wait lists against me and looked so utterly offended... she also name dropped that she does cancer surgery to try and convince me.
My results just came in and she even said "just ring the receptionist if you wanna go ahead with surgery (with me)"!! After my 20s and teens were sacrificed to pain with not even a prescription painkiller given to me by Dr's that laughed me out of the room, I refuse to let them mess up my insides anymore x
Hi - Mine showed on MRI, endometriomas and adhesions preatty much. It's also important to have a specialist reading it... Many time a radiologist without experience in reding endo, won't be so accurate. Also I encourage you to properly get assessed by an endo specialist surgeon as well, before habing any type of surgery. The NHS tends to waist time by putting women on waiting list for laparoscopies to diagnose, with non endo spesialists who many time don't find anything... Or you end up haviz dozens of surgeries due to them not wanting to refer you to a specialist. NHS also has specialist endo clinics, but they are very few, therefore, it's extremely difficult to get there, and even if you do, on the day of surgery you end up being operated by whoever is available. Overall, I encourage you to at least get an assesment privately from an endo specialist. There is Dr Peter Barton-Smith at the London Endo Clinic who is an expert in this disease. The prices I received were 390 per consultation and 390 for the scan. This way you'll have a proper assesment which you can then use on NHS if they still refuse to refer you to a specialist. All the best
Thank you so much for your reply Laura and confirming my gut feelings about the gynaecologist!
Yes this is what I have heard but I would have had no idea about advocating for a endo lead/specialist if it wasn't for this community 💘💘
I was very adamant I want to see the endo lead in my appointment (he seems very good frim his website) and she used wait lists against me and looked so utterly offended... she also name dropped that she does cancer surgery to try and convince me.
My results just came in and she even said "just ring the receptionist if you wanna go ahead with surgery (with me)"!! But she also noted that she hadnt had the time to answer the questions I gave her about laproscopies in Feb... 🥲
After my 20s and teens were sacrificed to pain with not even a prescription painkiller given to me by Dr's that laughed me out of the room, I refuse to let them mess up my insides anymore!
Thank you so much for the recommendation, I was just laid off last month but I will definitely keep the doctor in mind for future when I've saved up again x
so sorry that all this bullshit with medics has happened to you too.
My Endo was seen on an MRI around the pouch of Douglas on the right and left side.
After my lap, Endo Specialist said there was none around pouch of Douglas and I assume the Zolodex and tibilone actually made a difference. I don’t know.
Good for you pushing for scan 👍😀 it’s hard work. Call the hospital and ask to be put through to Gynae sec, explain the scan happened quickly and can they bring appointment forward to discuss results. If you’ve already gone through PALS they’ll be aware of this and hopefully jump 😂 if they haven’t switched you to the specialist already and MRI shows Endo make sure you say that’s what you want to happen, and follow up in writing the conversation.
Not much showed on my MRI, but lots of Endo and inflammation.
Good luck, it’s worth pushing for what you need. 🙂
hi you have had a tough journey. I had my MRI 2 weeks ago after they found cancer in my womb during a partial hysterectomy and hysteroscopy sample from womb lining.
The MRI attendant said my results would be with consultant in about 3 weeks so hoping to hear something for follow up appointment late next week.
I have kept a written diary of everything as my journey began 15 months ago and l am approaching my 77th birthday, so having that with me at appointments does help also consultants are only human as we are so if things are there in black and white l have found it helps.
I hope you soon get the answers you are hoping for, stay strong 🌸🌸 Alexa
Thank you for your sweet reply Alexa, your journey also sounds so difficult. I am thinking of you and sending love. I also hope you are recovering well after your surgery! 💕
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