Please Help!

Hi,

Just wanted to ask for some help. I am in imense pain and have lost over 2 stone in the past few months. I am struggling to eat, I feel sick all the time, suffering with reflex syncopy and am being tested for suspected crohns and lupus as well as the endo.

I am at the end of my tether and cant cope anymore. My GP has been great but there seems to be nothing more he can do. As usual all referels are taking forever to come through. My Gynae doesnt think any of this is endo related.

Has anyone else been in this situation. I am feeling so bad and not sure how much longer I can cope.

I have looked at being treated privately but I cant afford even the basic tests I need.

Sorry to rant but I just feel so alone. I have been off work for 3 months and nothing seems to be getting any better. My life feels like its at a stand still.

Has anyone got any advice on how to manage the pain, what sort of foods I can have that a gentle on the stomach and anything else that could help me??

Thankyou all in advance. Xxx

6 Replies

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  • Hi

    Whilst I've not had the other problems you are having I have Endo and pcos. What struck me was I just feel so alone. I had a lot of complications during my first lap, losing 6.5 pints of blood and critically ill. Had to have another op 2 hours later to save my life. afterwards I hit rock bottom and 8 courses of antibiotics for a resistent infection. You are not on your own, I promise. No one understands what you are going thru but you will have family/friends who i'm sure will support you.

    Really hope you get answers and quick. Thinking of you. X

  • OK firstly, what medication are you on because I suffer from reflux and after taking tramadol for 4 months I couldn't stop being sick and ended up in the acute medical unit of my hospital on a drip. Hormones can also play a massive part in sickness and nausea so I have no idea why you've been told its not endo related :/ I do know exactly how you feel, I get acid in my mouth sometimes randomly which started when I was born!! I've also had boughts of sickness when I've been constipated, I'm assuming I got so backed up that I literally could fit no more food in :( The drs eventually gave me some strong anti sickness drugs that they give to people having chemo which helped a lot. I had all the test for chrones and celiac disease which came back clear and it was put down to my pain levels.

    If I were you I'd go back and see your gp and ask for some anti sickness meds. I really feel for you, gimme an inbox message if you want any more advice xx

  • Another common symptom - I lost my gallbladder too. I can't see where the link would be, and I know that gallbladder problems are common generally, but the number of endo ladies who have gallstones seems incredibly high to me. Maybe it's a result of all of the pain medication?

    And it was 18 months from diagnosis to surgery for me too, I was literally in the last week where they would have gone over their target for waiting times. It's so annoying, because in the end it was such a quick op with no complications.

    That gallbladder pain was worse than any pain I have ever had with endo. And that's saying something, as all endo sufferers will know.

    Purple, I have a friend with Crohns and it does sound as if your problems are more digestive system related than gynaecological. But it doesn't matter what's causing the pain, it's rubbish that you are in so much pain and feeling so low. It's good that your GP is being helpful, could you ask him to put an urgent request on the referrals?

    Lots of love xxxx

  • Cholesterol is made up of oestrogen and cholesterol causes gall stones. I found this out as I had my gall bladder removed when I was 20, 15 years ago. I suffer from SOD now, whilst on zoladex I had no pain in that area, no I have finished it I am getting pain! I personally think it has a lot to do with hormones. But I am not a doc, this is just my opinion after years of pain.

  • Hey, I am sorry you feel so alone. It makes me so mad how the health system makes people feel like that and wish joint up care was possible, am sure would save the nhs money and diseases from advancing so far.

    You most definately not alone, this site has given me strength to trust in my instincts and take action and the support you will get from other ladies has helped more than words can say...thank you all.

    I am currently being investigated for endo and don't have the other conditions so my advice comes to you as a nurse in surgery and gastroenterology.

    Loosing so much weight so drastically is not right at all and a sign of a crowns flare up. Your GP should be worried about this and asked for an urgent referral to gastroenterology where you should request an urgent OGD (scope down throat) and colonoscopy (scope of bowels). They will be able to see if you have crowns immediately but will also do biopsies at same time. Because of the weight loss they should refer you to a dietician and if you can't keep anything down it maybe you need fitting with a nasogastric tube that goes through your nostril into your stomach and fed a specialist milk that is broken down elements of feed already so it is easier to digest.this would have to be in hospital at first, but you can go home with it. This all depends on your weight etc before, whether you could afford to loose that weight or not it shouldn't be that quick and needs your nutrition to be maintained. You can also buy things like skandishakes, extra calorie powders from boots.

    I had something similar when I was 17, lost a stone in 1 week and they thought I had ulcerative colitis. I had exactly same symptoms so know how you feel. They lost my notes so I never got scoped but after 4 months it just calmed down, I'm sure now it was a flare up of endo/ Ibs symptoms.

    Try and eat small amounts five times a day and if you are not keeping fluids down, not even 20mls of diarolyte (rehydration powder used for sickness bugs) you need to be in hospital.

    Medication wise you def need to be on anti-sickness medicine, there are lots if one doesn't work ask for another...ondansetron is good and they can be injected into you once a week if you are struggling.

    You should be on omeprazole or ranitidine for reflux and you didn't mention your bowels but domperidone can be added it speeds up gastric emptying so you are less likely to be sick.

    Meanwhile the GP should have done a lot of blood tests so when you arrive at a clinic appointment they don't send you for those before doing anything. These should include crp, esr, u and e's, lft, fbc, TFT and immunoglobulins. Ask your gp what he has done and if not these request them.

    Also ring the secretaries every couple of days to chase up, say you are happy to fill a cancellation appointment and your not trying to be a pain but it's ruining your life...most are sympathetic and will do what they can.

    Good luck and hugs xxx

  • Thanks all for your words of wisdom and encouragement! Im finding it so hard at the moment and just dont know where to turn! My friends and BF are trying to be there for me but its hard to include me when I cant drink and barely leave the house!

    I am currently on the following list of pills!!

    Mebeverine

    Tramadol

    Paracetamol

    Pre Gablin

    Naproxen

    Calcium

    B12

    Folic acid

    Iron tablets

    I have also just finished a course of Prostap injections about 6 weeks ago. I have been on mottillium for the sickness previously but my GP is wary of letting me take it for a long period of time.

    I find it so frustrating as I am sure that all my problems are linked and probably genetic! But all of the consultants want to treat everything seperately!

    Thanks for all your kind words it helps me no end! Xx

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