Help please

[Liseann]

I don't really have a question just a plea for help. My story is very complicated and to go through everything would be too much for you all to read. After appalling treatment through West Herts Trust. I was told after emergency surgery that I had stage 4 Endo and it was in my bowel. Ovary with an Endo cyst was also stuck, engulfed it was being strangled,. I was told they did what they could with adhesions but didn't want to touch bowles as it was so bad they didn't know where to start They also said they weren't qualified and they would have to find a specialist to do the big op which was very dangerous and could end up going very wrong or I'm left with a Stoma. Ti's was end of Aug 2023. I have been in and out since then, they did drain the cat but 2 wees later it was back to 11cm (it was 13cm during emergency op). I discharged myself aftertaste the weren't giving me my Epilepsy meds even after asking multiple times. I've been in hospital a further 3 times all with a discharge not of (to be seen x6 weeks) I still haven't been see. Very spoken to consultants sec multiple times with a promise f an app but still nothing. I'm in terrible pain, can't really eat prob due to toilet problems. I'm in Codeine and morphine for the pain nd I'm getting nowhere. This is just 1 of many many problems I've had. I don't know what to do!!!?

[Gabby353]

Hi,

In regards of your medication, I don't think that codeine and morphine will help, as they will just constipate you, rather than cure any lingering pain. Its fine to take in short term periods, but not together. Usually, consultants will prescribe something like Gabapentin, for neuropathic disorders, like shooting pain, burning, stabbing, etc , if there's been any nerve interference. Start with the lowest dose, and monitor any side effects closely, I could only take 300mg of it for up to 2 months continuously.

It sounds like they drained the cyst from your ovary, causing torsion(twisting), I had that when I had endo surgery four years ago, not as an emergency case, but under referral, and it was bad then, and luckily I got it sorted quickly so I didn't have a burst endo cyst as well.

I had deep endo, but the only thing they did from a bowel point of view, was eliminate a nodule from the rectum, which had been creating bowel difficulties.

In terms of bowel surgery, it would be very complex to do, from what I've read up on, and any trusts would be reluctant to operate. As you need two surgeons, one bowel, the other a leading surgeon for endometriosis, who can offer laparoscopy procedures.

I have noticed that the trust you're referring to, has few surgeons in this field and is a non profit and teaching hospital. Is it your local A&E? could be why they didn't give you your epileptic medicine either, unless they were waiting until after the anaesthetic had worn off and if they'd given you a strong painkiller.

I copied and pasted a link that I could find under a different area of the trust, that deals with complex endometriosis cases, and advises that you go and speak to your g.p and ask that you want to be referred to them. Maybe bring someone for support.

enherts-tr.nhs.uk/services/...

This link is for the north and east Herts trust, and deals with anyone living in Hertfordshire.

Quote-

"Women suspected to have endometriosis can be referred routinely to general gynaecology to East and North Hertfordshire NHS Trust by the GP.

For specialised and more complex cases, referrals can be made directly to the Endometriosis Clinic at Endometriosis Hertfordshire."

Contact us

If you wish to be seen in this service, please ask your GP for a referral to Endometriosis Hertfordshire, Lister Hospital Stevenage.

Existing patients with concerns regarding their ongoing treatment should contact the Endometriosis Hertfordshire secretary on 01438 285508. We can only respond to queries if you are an existing patient.

Good luck and I hope you can get the help soon.

Gaby