Need some advice

Hi, I've recently found this site and was hoping that anybody could offer me some advice if they were in a similar situation.

Im 19 years old and have been suffering with immense period pains worsening over the last 3 years. I was diagnosed with endometriosis last year resulting in a laparoscopy at the beginning of last August. Previous to that I had been repeatedly fobbed off by the doctors with either no help whatsoever or various medications that haven't helped in the slightest.

I have tried so many different types of painkillers including tramadol which only resulted in giving me the headache from hell with no real pain relief for the endometriosis.

While under anaesthetic for the laparoscopy, the consultant inserted the mirena coil, which doesn't seem to be giving me any pain relief whatsoever, however it has lessened the bleeding but I am still getting some form of period each month. Immediately after my surgery I was also placed on Zoladex which is an injection stopping the function of the ovaries. This treatment nearly eliminated my periods but the pain carried on. I was on this treatment for 6 months and I made the decision to come off it because of the negative impact it was having on my hormones.

I am at the stage now where I am completely fed up; I feel "normal" only about a week of each month with being in pain the rest of the time. I have tried so many types of treatment and am now starting to be fobbed off by the hospital again.

Just wondering if anyone is in this same position or if there is anybody who can give me some advice on what to do now.

Sorry for the long post!

Thanks

5 Replies

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  • Hi ellie.. Im new on here too so i cant offer much advice but possibly support. I hear u and the pain is so awful. I have been reading the tags for the endo diet on this support group...seems to help with quite few ladies. Im going to give it a try too . Hope u get a solution soon hun. Sorry i wasnt much help but theres loads of lovely helpful ladies on here and im sure ull get plenty of helpful ideas. Take care x

  • I cannot believe in this day and age, the lack of sympathy/expertise regarding Endo. I was your age in 1987 and felt confused/misinformed regarding the pain and distress but nowadays, I would have hoped things had moved on further..... disgusting.

    Firstly, don't think you are going mad like I did, you need to find a sympathetic doctor or change to a different one at least.

    Although you say you have been given medication, which is not working, you did not state if the gyne operated on you whilst having the laparoscopy? Hopefully they did as this should give you at least a couple of years relief (shorter by what I am hearing on here). I have tried meds and no, they do not give any relief.

    Being as young as you are, I understand you want to be pain free and 'normal' - well, at any age you would want that (my average age must be 90 by now, cos that is how it makes me feel) Gather loads more information and don't get fobbed off by the doctors.

    I went back to my GP 10 months ago and she was just going to prescribe vitamin D and up my anti depressants when I told her my symptoms. It was only when I told her to look back at my files and to actually listen to what I am saying, did she refer me back to a gyne.

    Bottom line then, don't wait for the GP to advise you, advise/insist that you need treatment/pain relief that will work. I take Co dydramol which can make you feel a bit 'floaty' but seem to work sometimes.... Tramadol and Co dydramol are both opiates so these might give you a headache too?

    Good luck and remember you know your own body....

  • Hi I'm sorry to hear your in such bad pain so often. I have pain most of the time, which I think is mainly due to nights out and the alcohol (but at 23 I don't want to give that up completely) as well as my cycle but I find it manageable and try not to let it stop me doing anything. I take my contraceptive pill 3 months in a row and have also been prescribed amitriptyline which is meant to be good if your pain is anything to do with the nerves in your pelvis. I also take tramadol (taken with paracetamol can be effective) and mefenamic acid when the pains at its worse. I tried Chinese medicine also with no luck, but seems to work for some so may be worth a try?

    Someone's recently mentioned to me a type of yoga which is meant to help with chronic pains called iyenga yoga. I haven't tried it yet but hope to if I an find a class close to me.

    Hope some of this helps you xxx

  • Hi Ellie,

    I'm so sorry. You need to get with a good doctor from the beginning. This is a very misunderstood disease that is "mis"-treated as a result. Get with someone who knows what they are doing. Where are you?

  • Its nice to know that there is support available, thank you for the comments :)

    I have taken a look at the endo diet and I think I might find it a little restrictive as I am a vegetarian so have limited choice when it comes to food anyway!

    Silverandglass, yes I did have surgery with the laparoscopy and to be honest, I was hoping that it would have benefitted my health more than it has done!

    I have tried tricycling with taking 3 months of contraceptive pill at a time and found that, although it was nice to not have a period for 3 months, that it still led to a painful period as it seemed to be building up!

    Kathleen, I am located in herefordshire, what about you? I felt that I was alone in being constantly fobbed off by the doctors, but this website has shown me otherwise! Thanks for the support all.

    Sally34, can I just ask what kind of painkiller is the amitriptyline? I have found that I have actually twisted my pelvis and caused my hips to come out of alignment in a way of overcompensating for the pain I am in, which in turn is adding to the pain I am suffering with the endometriosis...

    Thanks x

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