Change of hospital

[Tboag]

So I had a phone call today saying I can change to a private hospital, still with same bsge surgeon,

Because nothing has shown up o. My MRI scan, and there is no evidence of endo on bladder or bowel, I would have any other surgeons on standby at tge first hospital any way, has they only do that if evidence is there, apparently,

My appointment for my lap will be quicker,

But now I'm worried that if anything is found on areas that need another surgeon I'll be back to square one, awaiting yet another laparoscopy

The lady that deals with appointments for my surgeon dosnt even know anything about bsge centres,

It's so bizarre

So confused, and annoyed with it all

X

[dawntildusk]

hi tboag. really sorry to hear of your frustrations. i can completely understand why u r unsure of what to do for the best. my mri didnt show any endo on bowel and bladder yet my lap revealed my bowel was completely covered and i also had it on ureters amongst other places too. an mri isnt conclusive. can they not give u an idea on the difference in time if u wait for the nhs op? is it worth just checking if a colerectal and urologist would be available if u go to the private hospital? u must be tearing your hair out

[Tboag in reply to dawntildusk]

Thank you for your reply, it's si frustrating that the si called professional s can't even help, makes no sense,

Emailed secretary of consultant and I'll ring in morning,

X

[Marcia71]

I appreciate the frustration and waiting game but if you are on list at BSGE centre then I'd wait for that just to be safe. And hopefully might mean only one surgery rather than several.

I was always told no scan shows up endo - even MRI so don't bank in that being right.

I too have found very few medical professionals even know what a BSGE clinic is - even had a consultant tell me she was endo specialist and didn't know what BSGE centre was so don't worry and stick to your guns as you know what's best for your body.

[Mrss25]

Hi there, just reading your story is like reading my own.

I've had a hysterectomy with ovary removal and still have the same debilitating pain. Pain in bowel, urethra, with sex and afterwards, sitting down and I could go on!

Now as I have no ovaries they say I can't gave endo or anything wrong with me. I used Ovestrin hormone cream as they said I was dry and thus pain has come back with vengeance, but they see no problem.

I never had a true diagnosis. They gave me Decapetyl for 6 months before the hysterectomy and it was great. No pain etc wonderful. Now as I understand that's used for endo, but they will not say that's what I gave got. I'm sooooo confused.

I'm now depressed, sad alone and feel so unwomanly.

I can't afford to go private and my Dr won't refer me outside of our area.

Can you let me know how you get on

Take care and good luck.

[Tboag in reply to Mrss25]

Hi hunny, sorry for late reply, busy six weeks holidays, lol,

I didn't have overies out but that's what he will do now along with hunting down anymore endo,

Was you seeing a bsge specialist, and what reason did they give you for the hysterectomy, or was it just based on the injection you had, have you got you theatre details, it might say something on there about endometreosis, if endo is missed and it often is by general gyne, it can still course pain and continue to grow after a hysterectomy, it can be self feeding and our bodies do produce small amount of estrogen without overies.

I would suggest persevering with go and get referred to bsge specialist centre, you can get a consultation privately for about £200 then go back on nhs with same consultant,

Good luck and let me know how you get on xx

[Mrss25]

Hi my dear,

Thank you for your kind reply. My first op was done by a general gyn, hysterectomy and ovaries removed in February 15 and my cervix removed feb16 at bsge hospital. My consultant is adamant I can't have endo as I have no ovaries, but since using the het cream he prescribed my pre hysterectomy pain has come back. I have been cleared with 2 bowel camera tests, but on both occasions they were pain in one spot on the left side. My area of burning pain is deep in the vagina, bowel and the urethra all on the left side. Feeling very nauseous a lot, extreme tiredness as before hysterectomy and have constipation a lot. Any internal examination leaves me in pain for at least a week.

My mother had extensive endo and total hysterectomy etc at 36, and both my 2 daughters have got it aswell.

I'm at a loss as I thought the consultant I saw would be the one to sort it, but even though he's lovely he refuses to believe anything wrong as I have nothing left and I have no ovaries. I understand he is more a obny gyny.

I keep being told that my scans etc are not showing anything, but my 2014 Mri said abnormal pouch of Douglas with cysts. They never went through it with me and said not to worry about the cysts they were normal. My husband questioned the word abnormal and the registrar said its because there were cysts but it wasn't serious.

Can you get transferred from the private to NHS as my go is saying no I can't. He is not very helpful with referrals.

I feel like I'm going mad and I'm being made to feel it's all in my head. I've not got alot of fight left

Sorry for so much waffle.

X x

[Tboag in reply to Mrss25]

Hi hunny, sounds very similar to me, although I'm feeling abit better at tge minute, and no idea why, 😉,

The gyne your under now is he on the bsge specialist list,???

I think you need a second opinion as it sounds like something was missed,

Do ask for your theatre notes, and also there is a lady called Lindle if you havnt all ready ask her for some advice she is very informative,

I'm just hoping that my next op will sort me out,

You can get a consultation with a bsge specialist and then be transfered back to NHS,

Xxx

[Mrss25 in reply to Tboag]

Hi Hun, I'm glad you are feeling better at the moment.

My last consultant was a bsge listed specialist. He is lovely but he has the opinion of no ovaries no endo, it's impossible, so I believe him, but something is still wrong. My previous consultant would not release my operation notes to him either. We feel there maybe more to this aswell. My operation with this consultant was to remove the cervix only, and my original hospital had to pay for this procedure, as it was them who referred me on my request. My dr told me that my original hospital pay for the operation, so maybe restrictions were there due to money, but who knows.

This would be a 3rd opinion and I'm embarrassed. I feel I'm becoming a hypercondriac. Someone mentioned recto vaginal endo to me a while ago but I don't know much about that. She told me that my symptoms seemed to point to it.

We are going to try and get my surgical notes and see what happens with that.

In mean time I have to try and source another consultant, but I'm lacking confidence now, as I feel i'll be wasting time doing it as its not been very good so far, and never a diagnosis in a shape or form.

I truly thank you for your kind responses and time, and I wish you so much success with your surgery. When is it?

Take care x