I’m new on this particular forum as my friend who is a Nurse suggested I may get some much needed support here.
Things are spirally drastically regarding my condition getting worse & I have no proper (NHS) G.P support, I have a great (NHS) practice Nurse but the G.P’s don’t listen to her recommendations regarding what I actually need.
I’ve just had 6 days in hospital via ambulance through A&E but been given no proper help as hospital is same Trust as hospital that messed up my op in 2011.
Also I was on an IV and vomiting with extreme abdomen pain - when the *senior Dr’s* saw this they advised me to “seek help in the private sector” & this is on my discharge summery.
They did not scan or MRI although I showed them information regarding my Edndo & possible ahesions.
They refused to discuss that my problem was post-op pain.
I’m due for a vascular op & showed them the letter but they did no pelvic or vascular checks.
I was in so much pain and frustrated at the biased unsafe care I discharged myself to get help from my G.P Practice Nurse.
I’m getting more scared as the months/years go on.
My situation worsens my daughter has been badly affected and frightened by the extreme pain I have been left in & how it seems impossible to get the correct, unbiased, compassionate help from a specialist in London.
I had a private smear test early 2013 and the doctor stated she could feel a ‘mass’ ‘bulky mass’ when she did a internal exam pre-smear.
I’m looking for a specialist Gynaecologist with good knowledge of bowel adhesions / damage & ongoing post-op pain getting worse with stomach swelling > caused by a laparoscopy / bladder bi-op & cystoscooy in 2011 (*performed by a locum).
…just to give a bit of balance to the situation - I had a Laparoscopy in 1999 which was fine. I had no post op pain or medical issues following that particular surgery & was back home the next day living a normal life…
Since the surgery in 2011 I have suffer ongoing worsening pain in my abdomen and left side bowl (*port site), the post site on the left side is still extreamly painful.
I have been left on laxatives (Medical) for over 2yrs *un-monitored as my bowls have not worked unaided post surgery.
The laxitives make me feel very nauseous and don't really work all the time now.
My abdomen has swollen drastically (*I was size 10 pre-op & now am abdomen size 14/16).
I cannot bend my abdomen or sleep flat post surgery 2011.
The pain is so intense it often wakes me from sleep.
I have been unable to have intercourse for 2yrs as it is too painful.
Due to the ongoing pain have developed Adrenal issues trigged by the pain and I also suffered a bad relapse of my Chronic Fatigue Syndrome - pre-op I was walking a lot and doing 2 dance lessons & Pilates per week.
I have been left more or less bed bound and have been walking with stick since early 2013 as Vascular issues triggered by pain caused painful fluid swellings in my legs & ankles.
I Was under the care of an Endo/ Gyne at London hospital for over 3 years who although a very pleasant woman consistently misdiagnosed issues and put me on meds that contravene my outstanding medical problems (Pancratitis, history of Stomach Ulcer, Endocrine issues).
Also her *take*on my ongoing symptoms was always to *leave it* for 3 months,*leave it for 6mths* ect & she failed to diagnose that I have Endometriosis even though I have diagnosed PCOS & had past lap which found polyps and endo in 1999.
I had a very good Gyne Surgeon at the same hospital who removed my fibroids TRF in 2010 and wanted to do a lap to look for Endo however she was leaving the hospital trust to focus on private practice so passed me over to the Uro-gyne Dept to do the Lap, Cystoscopy & Bladder bi-op in *2011
It was a very brutish, bulling locum who ended up performing my op in 2011 & he messed up my Laparoscopy leaving me needing my umbilicus repositioned and with extreme bowl / abdo pain directly post op having to take daily laxatives for 2 yrs as my bowel suffered damage from the procedure.
Apparently he drained a cyst but left a fibroid on the outside of my uterus but I had an inflamed bladder wall which was left untreated.
This Laparoscopy (2011) that went *very* wrong has left me in extreme daily pain and has transcended into a Vascular issue that was flagged up by my Osteopath/Acupuncturist & the Practice Nurse at my new G.P surgery.
I’ve been left to organise my own pain relief via Acupuncture & Osteopathy but although relaxing therapies - Acupuncture does work but is expensive & has very short term results.
I’m now 80% bed bound and my circulation is worsening ditto blurred vision, fluid build up in abdo & legs, sweating & shakes.
The pain often wakes me from sleep & it often doubles me up if I am walking or in a queue.
I cannot sit for long in an upright position.
In *2012 I had a suspected TIA which was *then* stated was not a TIA but issues trigged by intense pain however the G.P I had then did not follow this up and the new G.P’s I joined seem very happy to just let me continue to pay for pain relief without finding the route of the issue causing it.
Sorry if this all seems a bit garbled but I find it difficult to type now due to the vascular issues & muscle weakness in my hands also I know I’m limited as to what I can/ can’t say in a public post.
I’m desperate and just need help as I don’t know where to turn next and have already spent a lot of money last year speaking to the *wrong*private Dr’s who end up being *linked* to the hospital where my op was messed up and then they trust me in a very biased way *AFTER* they have initially taken my money…
Therefore I’m grateful for any recommendations as I’ve been choosing *VERY* badly when it comes to paying for medical help (private G.P‘s & Consultants) have basically been ripped off (*apart from my Vascular Surgeon who I initially found privately) also I’ve not got PH insurance so I have to self fund.
I know that Dr’s cant be named in postings so please PM me if you have advice
*Please note: If you do reply to me, I’m not online everyday as I’m not always well enough, so I wont be able to respond straight away - but Thank You anyway! J
Thank you in advance.