Any help please

[corrine]

After 7 hours of surgery they managed to unstick my left side lower intestines bowel and bladder I do feel more relief however they have now told me that they won't be able to operate on my right side as it's one big mess and future operating is a no go this has left me bewildered and scared I had hysterectomy 3 years ago and never had symptoms of endo or even knew what it was until after I got rushed in via ambulance straight to theatre... I don't know who or were I can go for help advice other than here can anyone advise me please all they said to me when I was in hospital for the week is i would need regular pain relief and hrt other then that nothing

[sbactive]

Oh poor you! I was in the same situation, unfortunately for me my bowel, due to bowel disease, is no longer viable so am having surgery I jan to have my pouch removed ( had large intestine removed as a kid) a hysterectomy and I have to have an ileostomy bag. Before the bowel issue they told me the same as you, learn to live with the pain. And we will not operate so this is your life.

Sucks to be told that and I was angry for sure!

They really mucked around with how they managed my pain. And treatment and I would like to spare you the same,

Firstly, make sure they send you to a pain consultant, and always talk to them about changing the dose etc, my gP cavalierly kept upping my dosage and now I am addicted to high levels of opiates and will have to do some sort of controlled come down. Instead of just upping your dosage the pain consultant will try different combinations and find what works for you, it may be a process but persevere and you will find a combination for you.

I try and do pilates even if I'm feeling low and tired etc, whatever works for you. You have. To keep hold of some things in your life, I may drag myself there but after class or whatever Works for you I feel so much better. I teach pilates, or did, and will get. Back to teaching again, but right now it's great to just be on the doing end. Little steps, but steps nonetheless.

They gave me CDs of music to help me meditate, I want to learn to meditate but I need to do just that, learn how to do it! They don't tell you that but I have heard from people on this forum that it helps so I am going to learn. I have heard great things about this but it may not be your cup of tea, the thing is to find out what is and do it.

Make sure you are managing your appointments and all this, not it managing you. I find the admin at the NHS is sloppy at best so if you haven't heard about an appointment or have questions, find your consultants secretary's number and call. They will be happy to speak to you, well mine is, so try it.. The worst thing is feeling like you have no control, you do, you just have to keep on top of it and call and ask questions or why an appointment hasn't come through etc.

My memory is mush due to the zoladex to put me in menopause. And the pain meds, write everything down! Especially when you see a doctor or it's something important.

I also have adhesion releasing massage, the therapist is a structural integration therapist, they work on the fascia and I have found it has really helped, you can look online, at KMI I honk the website is called or message me and I will look for you.

Obvs this is after you have really healed. My therapist Tanya is great at releasing adhesions etc in the abdomen and I feel so much better after, unfortunately they are not cheap so cannot have it done as often as I would like but gosh, she works for me!!

Sorry about the long rant, I have found so many failings during this past year of the NHS, and I know they are under pressure so I'm not knocking them, but just found it better for them and me mentally to take more charge of my treatment etc and stay on top of things, it's helps me. In my mind as well as I feel I'm doing something for my treatment myself.

If you have. More questions or I have forgotten something, highly likely, please message me anytime. You are not alone by a long shot so remember that.

Love and hugs

Steph x

[Mabes]

I am not sure where your emergency surgery took place. Were you been seen at a specialist endometriosis centre?

Here's an example of what they offer:

In summary we offer an integrated service provided by a multidisciplinary team comprising of gynaecologists and nurse specialists in the first instance when a decision about treatment choices is discussed and decided upon. Where the condition is severe, joint surgery is carried out with laparoscopic bowel surgeons and/or urologists. There is also specialist input by the gastroenterology team where necessary. At follow up residual pain is treated within the pain management service. There is nurse-led follow up clinic to enable long-term outcomes to be assessed. (Taken from UCLH'S website).

I would definitely want to be seen for a second opinion at one of the accredited endometriosis centres - they are the most adept at dealing with the very advanced stages of the disease when it involves organs outside the reproductive system.

[corrine in reply to Mabes]

Thank you so much for replies I was scene as an emergency at gyno I had 4 specialists in the theatre

I have Tried asking my gp to explain in detail to what went on in more detail but she said there's nothing to tell other then I've been very lucky

I have started getting pains in my tummy and lower back again

Am just frightened I think and the unknown doesn't help

[Mabes in reply to corrine]

Yeah it doesn't help. It's really scary. I do suggest you push for a referral to one of the specialist centres. You can find a list here:

bsge.org.uk/ec-BSGE-accredi...

Even if they are not able to operate, they should be able to offer you some support and advice over pain management and symptom management. They have specialist nurses you can speak to as well, which can be helpful as they may be more accessible than the doctors.

TBH, the GPs (unless you are really lucky) are generally not very useful as their knowledge is patchy rather than in depth and they don't have enough time to really offer much support.