Very Desperate to find help - Laparoscopy Post Op pain 2yrs on - Not Getting Proper Medical care - Need Good Gyne/ Endo / Bowel Consultant

[moonwish9]

Hello,

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.

Summery:

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.

Kind regards,

[LeyaC]

Hi there,

After reading this post I definitely think that you should contact that specialist I told you about, he is really good and I think he'd help you. Please go see him, I dont want you to be feeling this way anymore, its awful how they left you. My hospital (Stafford, you know. The one on the news messing things up and causing deaths) lefty my stitches in and didn't let me know they weren't dissolvable so they're still there. Its disgusting how we all get treated unless we're paying privately or we see an accredited centre for Endo. Good luck with this one hun, I wish you the best of luck and I'd love to know how you get on. Please stay in touch.

Take care,

Leya xxx

[moonwish9 in reply to LeyaC]

Hey Leya,

So sorry for the belated response, my daughter (21 yr old) was in hospital for a few days and I’ve been looking after her which has put a lout of strain on my energy and health…

Thanks for the continued support & I will stay in touch. I think I’m going to make an appt to see the person we spoke about but I just have to get the money together first!

Yes I know about Stafford as it’s been in the news so much .

I honestly can’t understand *WHY* no info is coming out about the hospital that did this to me as I know I’m not the only one…just such a big web of silence letting them get away with it

I will definitely keep you updated as to what happens…

Sorry to be a bit brief but I’m not feeling well enough to type a long detailed reply tonight as I have migraine starting again.

Best wishes & thanks again. xx

[marybeex4]

I have just read your post and felt so very sad for you. I have no medical background but found this site to be very supportive. What I have learned is to to keep on researching yourself and the importance of finding the right person to deal with your problem.I was pushed around the circuit and eventually ended back where I started. I was at the end of my tether but thanks to listening to others also suffering i was able to get better medication and am waiting now for an appointment with an expert in my field of pain

I hate to think of you suffering so much and just wanted to let you know there are probably people around somewhere that can help you. Just keep on looking and learning and listening...I hope you get sorted soon. All good wishes to you.

[moonwish9 in reply to marybeex4]

Hello Mary,

Thank you for taking the time to respond to my post .

Yes I do research constantly and have been doing so for over 2 years although I seem to have chosen the *wrong* consultants to consult with privately & wasted a lot of money.

I’m very glad you found someone to help you in the end as I just have been from pillar to post myself…

If you would like to inbox my your specialist details it might be of some help dependent on location?...

Sorry to be a bit brief but I’m not feeling well enough to type a long detailed reply tonight as I have migraine starting again.

Best wishes & thanks again.

[Orangeflower]

Hi- if I were you I would firstly change GP, and possibly hospital trust as well. You can search for a GP nearby specialising in gyne issues using the NHS website. You can also see ratings and recommendations there. You don't need to tell your current GP you're moving, just fill in a form at the new GP.

Then get a referral to a different trust hospital, you can ask for this via Choose and Book at the new GP. Tell the new GP of your symptoms and how they are affecting you. The bloating and pain could be adhesions issues which would need investigated by possibly a gasto / colorectal surgeon and maybe you need a gyne referral too. You shouldn't have to be paying for these privately, unless you have insurance of course which you may wish to use. Good luck.

[Orangeflower]

PS That's awful they said on your discharge summary to 'seek help in the private sector'!! I have adhesions too and although the surgeons seem a bit confounded by treating it (as they can reform) they are willing to help me. I have had a laproscopy to remove adhesions for example, on the NHS.

[moonwish9 in reply to Orangeflower]

Hello Organgeflower,

Thank you for taking the time to respond to my post however I actually *have* changed NHS G.P’s and I have looked VERY hard to find help with another NHS Hospital Trust hence the fact that I consulted privately last year although I do not have insurance.

I kept being refused referrals by the NHS G.P’s that’s why I changed last year and if it wasn’t so worryingly scary it would be farcical because the new G.P’s are even worse than the last. They do not want to help at all.

They won't step-up and say “My patient is in pain and should not be in pain”.

I do know it is my right to get help on the NHS however I’m suffering from stonewalling and less than honest opinions from the so called medical professionals as all roads seem to lead back to the same hospital trust and they all know each other…and the G.P surgery’s in our are are affiliated with the hospital trust in question.

This is why I want to look outside of London for help as it’s been going on too long now and I’m becoming increasingly unwell and very scared.

Sorry to be a bit brief but I’m not feeling we enough to type a long detailed as I have migraine starting again.

Best wishes & thanks again.

[Orangeflower]

That's awful. I do have a similar experience and know where you're coming from- I had a very poor experience at my local hospital and ended up with emergency surgery and poor aftercare- bad adhesions and bowel obstructions. I moved GP and the new ones were also not very helpful. It just happened to be that we were at a wedding miles away when I had the last one, and had to go into A and E and have an op again where they sorted out the adhesions (a 6 hr op) they wanted to transfer me afterwards to my local hospital and I said no way!

I had trouble with the new GP giving me a referral too- they knew I'd made complaints at the previous GP and the hospital and they weren't happy (one of the GPs actually asked me why I'd wanted to 'make a fuss') they also told me they 'still had a duty of care towards me' but I could tell my how it was said it wasn't willingly.

So after the last emergency op, I asked for a referral to a nearby trust for follow up, they kept telling me I couldn't, that I'd already been referred to the local trust via Choose and Book so they couldn't alter it. This turned out to be a lot of rubish as I actually contacted the Choose and Book line myself and got advice. they told me to get the secretary at the surgery to take the local hospital off my 'choices' and add some new ones. So, finally they did this and I got a letter through with a referral to other places. It was a battle though.

Do you find, the GPs are OK at diagnosing you with other stuff not related to the op, but when it comes to anything resulting from the poor treatment they are wary? I think they tend to cover for each other and it makes them apprehensive. It is worrying though as you do need treatment, as I did (in fact I'd so grateful for having been in another place when I last got ill- I don't want to think what might have happened otherwise)

Adhesions can cause serious problems especially bowel obstruction you need to get seen at hospital ASAP (esp vomiting and severe pain). You don't have to go to the one you went to previously, you can go to any A and E.

Good luck. I have since changed GP again to a small one nearby as the other one just seemed to be passing me on from one GP to the next and doing things like saying they'd ordered an x ray and I'd get to the hospital and they'd say the GP hadn't, this happened a couple of times and I was just getting fed up with it. I think it may be better a practise which is smaller perhaps. The newest GP's has called me in for an appt when I joined to go over my medical history and I feel more positive.

You do have the right to choose your NHS treatment so try with Choose and book, hope it helps x