help! Is anybody else at a&e twice a week on IV morphine?

I am posting for my sister as she is not to good with words, a little shy and mostly unwell.

It's a long story but thought it best I list it all.

Her pains started with a kidney stone in dec 2006, she was 17. They discovered she had a pelvic kidney. She had a few months pain free and then the pain was every 5-6 weeks. She would end up at hospital and the only thing that would take the pain away was IV morphine. It gradually got more frequent until it was monthly. A doctor in Guys in London said it could be endo and she was referred to gynae in woolwich. My parents decided to send her to a private hosptial and mr hill did a laparoscopy and found endo in about June 2007, they lasered it but the pains returned 6 days later. The episodes got closer and closer until it was every 6 days. Again she would be at the hospital screaming in agony and only morphine would help. She had another laparoscopy in 2009, and they said it was all clear. The pains continued so they decided to remove the Pelvic kidney in 2011 there was nothing for 3 months but the pain switched to the right hand side. Throughout all this time she was advised to take the yasmeen pill with no break. Early 2013 she stopped the pill and fell pregnant, as her pregnancy progressed the pains were getting worse and again she would end up at the a&e screaming and prescribed iv morphine. The pains used to only be in her back, but now they start in her groin, shoot down her leg and go to her lower back where her right kidney is. Thankfully the baby was born healthy with no effect from the large doses of morphine, yet since she was born on 21st Dec the pains are worse. It is now every 4 days, and the morphine dose has had to be increased as the pain will go for a few hours and then it comes back. On Friday it took 60mg of IV morphine before she was out of pain. Although the pain down her leg carried on. Strangely enough she took ill again Saturday which does not usually happen. When she has the morphine she cannot stop vomiting and has to be prescribed iv cyclizine (May be spelt wrong)

When she has an attack she literally cannot do anything, she is screaming with the pain and writhing in agony. She cannot speak or walk.

She hasn't been able to work for years and is now missing out on precious time with her baby. When she is with the baby on her own she is having panic attacks as she is worried the pain will

Come on her.

None of the doctors she has seen have suggested this could be the endo back , as she had a clear laparoscopy in 2009?

Has anybody had clear laparoscopy's, or had pains come back so soon after endo being removed? ( 6 days )

Has anyone had a baby, with the pains getting worse in late pregnancy and after the birth? Does anyone else have to have such high doses of morphine? Forgot to mention she has a lot of water infections where her urine is literally full of blood.

Also can anybody recommend a good doctor in London? Either private or nhs?

Sorry for the long story and so many questions but just desperate for help. X

4 Replies

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  • Your poor sister! I cant relate to her symtoms I'm afraid but I can help by sign posting you to where you can get support. The Endometriosis UK charity run a help line & I really think they would be able to help. The same charity have support groups around the country - mine has been a great so I'd really recommend checking the website to get both the helpline number / opening times and also search for your local support group leader. Even though your parents paid to go private it may not have been an actual endomettiosis specialists that saw your sister

    The endo centres are fairly new and aren't as well known about as they should be. Look up the BSGE website and then have a look at the lists of the accredited endo centres - there are loads in / around London. The BSGE website also lists the centres that are aspiring to be endo centres although it does sound like your sister could do with seeing an already accredited specialist ( most are NHS and some do private too). I do hope your sister can gey the treatment she needs soon xxx

  • I am so sorry to hear your sister is in so much pain, I have had Undiagnosed pain for 4 years and I am on a mixture of tablets, and a fentanyl patch constantly which is a morphine kind of patch.

    I have also been looking at private doctors and I have found a specialist online, who is based at Harley street hospital in London. He boasts 30years experience but is very expensive, try googling it you should find him.

    I couldn't afford that so have made my gp refer me to a specialist I found on the BSGE website and now am awaiting an appt. totally worth a look!!

    I know just how much the pain can take over your life, and before the fentanyl patch I was given oramorph, an oral morphine, might be worth asking your sisters gp if you can get this rather than keep going to a&e? Good luck to her and I hope she gets the answers she needs xxx

  • Hi concon11,

    I would echo what the posters above have suggested and get your sister to an accredited endo specialist and make sure that the specialist uses excision to remove endo and not laser.

    Laser does not always get to the root of the issue and excision has a better chance of success.

    Also, while a lap in 2009 was 'clear', unseen endo could have been missed. It can depend on who conducted this lap. A general gynae is not as skilled as an endo specialist in discovering endo.

    Accredited endo specialists here bsge.org.uk/ec-BSGE-accredi...

    Aspiring endo specialists here bsge.org.uk/ec-BSGE-provisi...

    Endo can infiltrate the bladder and in rare cases lead to blood in the urine during period or in chronic cases at any time. I am not a medical person and do not know if this is the reason behind your sister's difficulties and the kidney/blood in urine could be a separate issue.

    E-coli is also an issue for many women with endo who seem to be more susceptible to infection by this bug. It can manifest itself as a urinary tract infection (UTI) and in some cases it can cause blood in the urine. She needs to be tested for this if she hasn't been already. There has been plenty of recent discussion on e coli here on the forum. Put 'coli' in the search box top right and the threads will come up.

    I really do hope that your sister gets the help she needs soon xxx

  • I am very sorry to hear your sister is in agony, I had lap in 2009 which said everything was ok only to end up in hospital 3 months later with severe pain and I ended up having scan and I was diagnosed with the worst endo ever. I think your sister needs to consider fentanyl patch as a constant pain relief rather than waiting till the pains send her to the hospital. I was always in hospital too before I went on the patch which helped me kept out of hospital. I wish you and your family good luck

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