MRI result: no appointment set to discuss my results over two months later. Looking for private consultant recommendations in Surrey area

[MoominBabe92]

Hi everyone,

It has been two months since I was emailed a very brief description of my MRI results. I have yet to be given an appointment to discuss them. Everytime I ring the gynecologist I am told an appointment has been "requested", which is what I was also told two months ago. The MRI has shown that my ovary is attached to my womb, yet I was repeatedly told on the phone by a receptionist that "cancer patients are being seen first" as if I was personally responsible for the wait list.

I'm now 31 and have suffered since age 11 so I am becoming increasingly frustrated by the lack of support or care. My GP knows what is going on and has not helped, she refused to answer a single one of my questions regarding tbe MRI and told me to ask the gynecologist who won't give me an appointment. I am also currently unemployed

I still have an IUD that they refuse to remove with adequate pain relief, the MRI showed potential endo in my vagina which explains my PTSD from having an IUD inserted while awake.

I have been trying to get it removed for two years.

I am at the end of my tether, and I'm having increasingly suicidal thoughts as it feels like a losing battle that I don't have the energy to fight, with absolutely no support or concern for my wellbeing by Dr's. Endo has already taken my 20s and my career.

I am looking into a private consultation with an endo specialist who may be able to advise me on the MRI. I am based in Surrey but am willing to travel to London. Please do let me know if you've had any success with a private consultation. Thank you endo community 💘💘💘

[megiiva]

Hi Gorgeous, sorry to hear that you're struggling, but I found that NHS doctors just brush you off,and many of them work privately as well,so they getting their money for you even if tgey don't see you. I'm 43 and been struggling with all Endo symptoms for over 6 years, but though as they look like so many other (IBS,Sibo,perimenopause, gastritis and so on) that every single time when I go to my GP they were telling maybe I'm depressed:)hahaha...anyway after pushing via my private insurance found that I had a fibroid, which was removed last year,then had Sibo and then Ovation cyst (which burst) and did blood test, CT scan,ultrasound, nothing shows Endo,so they said maybe I have IBS (but got it too badly..haha tight).I insist for Laproscopy so they can take biopsy from the cyst and bam,turned I have stage 4 Endometriosis, both ovaries,tubes and my bladder. The doctor did it is Nitish Narvekar,amazing. I have videos in my Channel @megiiva if you want to check I'm post 3 weeks after my Endo Laproscopy and still bloated and bit painful, but hoping by week 6-8 to get better if no then I may have IBS,as they ussually goes together plus Sibo. Check if you can book an appointment to see him...All the best

[FiBeee in reply to megiiva]

my nhs gynaecologist told me I was imagining it 18 years ago. Turned out I had stage 4 all over my bowel. Still suffering after a full hysterectomy but at least they understand endo at Guildford.

[Felma]

is it possible to know how long it took to get the mri done in nhs after you saw the gynaecologist or did the gp request it?

[MoominBabe92 in reply to Felma]

Hi Felma, the MRI happened pretty quickly after I made a complaint to PALs, but I also have an IUD which has been causing increasing pain, so they were also looking into that. However, I had to wait 6 months for a telephone appointment to discuss the results, which my gynecologist seemed unwilling to explain after I asked her if she was referring me to a specialist. I am basically still in the dark after waiting all that time and I wish I had just gone for imaging privately while I could still afford to. Good luck, I'm here if you have any more questions x

[FiBeee]

Simon Butler Manuel at the Nuffield in Guildford has looked after me. But it might be worth going to a specialist endometriosis centre in one of the London hospitals. That way they cover all bases. Best of luck.

[nanomyous]

Hi! I'm sorry you're having such a bad time. Do you belong to the Endorevisited group on Facebook? You can get women's experiences of consultants which is not allowed here. It is very useful and has a mass of details about endometriosis. Don't lose hope and good luck with your appointment!

[CryBaby91]

Hi MoominBabe!

My gosh you sound like me, I'm also 31 (32 this year) and have lost so much due to being ignored! Have you got Facebook? Nancy's Nook could absolutely help point you to a decent specialist, which there's quite a few in London! Even on NHS! You are entitled to ask for a referral on the NHS to ANY hospital in England, so please don't think you have to go private to get decent care. Though obviously, the waiting time is also an issue.

If you don't have Facebook like me then Twitter is also fab! I have used The Endo Informer to help gather information and find a specialist. The person who runs Nancy's Nook is also on there she is a retired nurse who has endometriosis and got her life back after getting proper specialist excision xxx

[LaraBo]

Hi - I can recommend one of the best endo surgeons in the UK, Dr Peter Barton-Smith of Endometriosis Clinic, London. He collaborates with Prof Jurkovic who is top in imagistics. Please write to Dr Peter and he will arrange everything for you and is offering a 1 hour long consultation to discuss findings. Price was 390 for ultrasound with Prof Jurkovic and 390 for consultation with Dr Peter. Hope all goes well.