First post...help please

Hi All...

This is my first post on here as I just joined today. For everyone who has posted their stories and advice you are all truly inspirational. I cannot tell you what weight has been lifted from my shoulders knowing I am not the only one out there going through such a rough time.

I have been on this horrible road for 5 years now. 2 years ago I was the luckiest girl in the world to meet my other half and we are getting married next year. I know how lucky I am to have somebody who accepts and tries to understand all of this but it must be so hard looking in.

I have had 2 laparoscopys and 1 laparotomy. Have a Mirena fitted and have been on a 6 month course of Decapeptyl injections (hell). Unfortunately nothing I do or try is getting this sorted... I am slowly loosing the will to fight.

All GP's and consultants do is think I am over exaggerating because every treatment is not touching me. I have been referred to the pain clinic as I am now being told that I need to learn to live with it and not end it.

I am looking forward to the next step in my life with marriage etc but I am also panicking that I will not be able to give my other half everything he deserves because he really is the best guy in the world and as much as he says I don't.. I can't help feel like a burden to him.

I'm wondering if anyone has any tips/advice on day to day life, other pain management, relationships, or if there is some other treatment that hasn't been offered to me that I could ask for.

Thanks everyone - sorry it's a long one - felt good to get it all out though!

xxx

9 Replies

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  • Hi Hun,

    First of all I would to say a huge congrats on your engagement :-) and secondly I'm sorry to hear bout what your going through.

    I was told that at first and with the help of my mum got to the right doctors on the right ward. And they actually referred me to Arrowe Park in the Wirral. I too have the coil been told I should be able to have children but like you am worried I can't give my partner a family.

    I had an appointment a little while go at the hospital and advised to take nurofen plus which has ibuprofen and codeine as tramadol and Oramorph are strong for a pain killer. Luckly nurofen is helping. Which you get over the counter at your pharmacy.

    With you going to pain team have they spoke to about gabapentin? I had this a few years ago and it helped me but I know everyone is different and what helped me doesn't mean it can you. But worth asking them about it.

    I can give you a link about gabapentin if you wish?

    Regards

    LauraLou xx

  • Thanks for replying - when writing it all down it is so hard to remember everything that has happened... I have tried Gabapentin and Amitriptyline (both high doses) and unfortunately I am allergic to all NSAIDs (ibuprofen nurofen diclefenac etc). I am using Tramadol and Co- Codamol regularly which seems to work most of the time and then Sevredol when it's really bad. I just don't want to be a "Pill Popper" for the rest of my life.. especially with the really strong ones.

    ....exhausting.

    xxx

  • I know that feeling. I was on Oramorph all the time, everyday I was in pain and took it and if I didn't stop taking it then I would have been addicted to it :-\ not good at all.

    Not to sure what else you could try to be honest Hun. I know it is not nice to have and feel the pain, hurt and upset.

    Try talking to you gp and consultant bout it all and tell them the pain relief you have been given doesn't work.

    I think when the pain relief didnt help me is because my body was so used in taking them all.

    Have you tried diclofence? Xx

  • Someone had just mentioned to me today to try aloe vera juice. Its worth a try x

  • If your taking mostly codeine, I would strongly advise that it is a good idea to take something like Fybogel sachets or Lactalose with it (at least alternative days). The reason I say this is codeine is notorious for causing constipation, which in itself can cause pain and discomfort, bloating, piles etc.

    Hopefully, your Gp has given you this alongside codeine based painkillers. Prunes are also good and spinach and bran flakes to keep bowel moving whilst taking this and of course lots of water and exercise can all keep things on the go.

  • It might be worth you asking to see the physio at the pain clinic. I also have hypermobility syndrome so it was obvious to get the physio to see me first at the pain management clinic. When us ladies have a lot of pelvic pain we stop using the correct core muscles in the pelvis, a physio would be able to help you strengthen those muscles. I've now done these and have moved onto hips and it has helped my pain tremendously xxxx

  • I'm 46 and have fought the pain for a long time, I know your all going to moan at this cos I did lol, but walking, excersize and healthy eating help me enormously. My weight fluctuates, but when I'm at the lower weight I'm not in as much pain. Tramadol for me was a life saver as was the pill. Also you need to ask if it's worthwhile having surgery for the removal of the endo not your organs. Sorry started this back to front, hate to hear of the young ones starting down this road, firstly congratulations he's got a little brave diamond and secondly if it was your fiancée in the same situation would it bother you my love. I'm sure the answer is no! Stay strong this is a fantastic site for support and remember you deserve the correct treatment and answers! Good luck luv xxx

  • Hi there. Congratulations to you on your engagement! It sounds as though you have had the most awful time. Just wanted to encourage you on the relationship front. I do very much understand how you feel. I got married last year. I had some problems with pain at the time, but was mainly well then. After getting married my health got progressively worse until I was in intense pain all the time and so tired I couldn't get around on my own. I recently had a laparoscopy and was diagnosed with endo. I'm better than before but still struggling with exhaustion and pain. My husband is faced with the possibility that he may have to carry most of the financial responsibility, as work is really difficult. I know it's pretty hard for him. I've also been told that my fertility levels are really low too so having children may be difficult. It's affected every area of our relationship, right at the start of our marriage.

    But I actually think this horrible disease has been good for our relationship in some ways. We are a stronger unit now than we have ever been and I think we better understand what love is. Life is not straightforward and I think sometimes even the things that are most awful can turn out to be a blessing of sorts. Probably controversial to say that! And I know that it may feel different when you've been dealing with it a number of years. I'm not saying that it's all been good - at all! It has caused arguments too and some really difficult times already. But a strong relationship (of any kind) is so much more than the good times. I know he is the most incredible gift and I am so thankful for what we have. My husband agrees and I think he means it! Xx

  • Hi everybody - after a particularly hard day it was very heart warming to come home and read the replies. It helps so much just knowing I am not alone.

    Thank you everybody.

    xx

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