Going crazy

2 years ago I had my diagnostic lap and they got rid of my endometriosis. I was pain free for 6 months and it was amazing. How ever it came back with a vengeance. I've had every tablet every painkiller and every treatment available nothing worked so they agreed to send me for another lap. I had it yesterday. I have been so excited thinking I was finally going to get my life back. Go back to work and hopefully get out of this depression. For a while now I have been self harming as a way to relieve myself it's hard to explain but I've been trying to get help. So when the doctor came round after my surgery they told me there was no signs of endometriosis this time and they think it's because I'm constipated. I explained to them I take cocodamol all day every day to ease the pain I'm already in so of course I'm constipated. But this is obviously not going to be the reason I've been in chronic pain for a year and a half. As I've only been taking cocodamol for six months. They looked at me as if I was stupid. I spent the rest of the day crying my eyes out because I haven't in fact got my life back I'm actually back to square one trying to find out what on earth is wrong with me. To make matters worse they would not give me any painkillers for my recovery "for fear my depression is too severe to allow this". I was sent home with a lovely discharge letter stating that I need to go to my gp and get help for constipation and self harm.

I have honestly never been so upset in my life. I don't know how to get through this or what on earth is wrong with me but all I know is I can't do anything normal 21 year old's do.

10 Replies

  • I'm so sorry to hear this has happened. I was misdiagnosed several times with Ibs before my new surgery got me sorted and diagnosed correctly and it was endo. I have been doing trial and error for the past 3 years as nothing seems to work long term but I think this is normal for endo. One thing I've learnt though don't just go with what they say! I did this and really wish I didn't. Talk to your gp and be honest and frank and get a plan put in place for alternatives to find out what else may help pain relief wise and find out the route cause for the pain if it's not endo. cocodamole is known for constipation as it's a side effect for taking it but the fact u are taking it shouldn't shadow you were taking it for a reason!? Definitely speak to your gp if they feel cocodamole is not the answer they need to help you find what is. It is upsetting and may not feel like it now but you will get through this. Keeping logs and diaries really helped me at your age especially food diarys this way I could look for patterns and triggers and help the doctors to ensure I was not misdiagnosed again. It's easier said than done but don't give up. Give your gp the chance to talk you through the options it will take time but you will find what does and doesn't work and you will find a balance to cope with it. Wishing you all the best x x

  • Thank you. It's really lovely of you to reply.

    That''s what I tried to say to them about the cocodamol but they just looked at me like I was an idiot. So I gave up.

    I have started to keep a diary sort of thing mainly for me feeling as a way of not letting stuff build up to the point I break down. So I will definitely try it with what I'm eating and what triggers the pain.

    I just hope my GP understands that I really need help xx

  • It sickens me how some GPS treat the people they are responsible to help and look after. But not all GPS or consultants are like these it's usually the ones exposed or affected by this illness directly that understand as a lot of people I know have never heard of endo let alone what it does. Paulass is right a specialist center may be more suited as endo is not easily found or detected.

  • I agree. No one really understand how hard it is. I have been fired from two jobs because of it and I can not work due to the pain and my mental health atm. Which makes me even more unstable because I hate not doing anything all day :( thank you for your help x

  • Sorry to hear you're having an awful time. Were you treated at a BSGE centre? I'm waiting for my first lap with one but have read so many stories of women being having bad experiences being treated by General gynaecologists because they're not always skilled enough to spot it. If your symptoms continue maybe it might be worth asking your gp to refer you to a specialist centre?

  • I'm guessing I wasn't as I don't know what bsge is! It was through the NHS. This first time was private but it was the same gynaecologist for both operations.

    I have an appointment at a specialist endometriosis centre next month. So hopefully they will be more helpful than the rest x

  • I'd never heard of them either till I started looking on here! The BSGE is the body that accredits specialist endo centres, they have a list of centres here bsge.org.uk/centre/ There's a lady on here called Lindle who was posted lots of really useful info, run a search for her name and they should come up.

    It's great that you've got an appointment next month, fingers crossed you have some more success this time around. X

  • sorry to hear you're having a rough time x

  • Thank you x

  • JoanneCrow,

    I am so sorry to hear you are having such a rough time of it.

    While I have not self harmed, I have had a lot of experience with it, and can understand it in a way, as many I know have said it is something they can actually control when so much else seems uncontrollable.

    I so recommend you get the book The Period Repair Manual.

    Depression is one of the symptoms of endo, but not everyone gets all the symptoms.

    The book has been a massive help for me.

    I am 43 and have always had horrendous pains.

    But, as the start of this year they were unbearable - like child birth pains.

    The author of the book is my sister-in-law, a world leading naturopath doctor who specialises in endo, pcos, hrt, etc.

    She suggest I follow the diet in her book (which I had already bought as I had wanted to try and fix my periods).

    I have been following the diet and supplements for 11 weeks and am having huge success.

    She has successfully treated hundreds of women with endo, and I now count myself as one of them.

    I will happily stay on this diet now for life.

    I have suffered from depressive episodes in the past, due to terrible life events, but endo has not helped this.

    Endo is inflamed lesions - by changing diet and lifestyle to not have foods etc that themselves cause inflammation, the lesions stop being inflamed.

    It can take a little while, but I noticed a difference by the first period I had.

    The last period, I could take one dose of paracetamol and the pain stopped!

    For me and my history that was a miracle!

    I also have less fatigue, less pain at ovulation and less depressive episodes.

    I can not recommend it any more highly, in fact, as with others on here, I recommend it so much that if you want to try it, I will happily email you menus and recipes to get you started. I will also email them for as long as you need them.

    You really are what you eat/drink/etc.

    I hope you have a much better day today

    All the best and praying for your health.


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