Fed up of pain!

Hi all

I have be diagnosed with endometriosis for about 2/3 years now, when I was first diagnosed I had a laparoscopy and then put on a course of injection every 4 weeks. Everything was going well I had no periods I had virtually no pain. I then came to the end of that treatment and had the marina coil fitted, everything was going well with that for the first 6 months then everything changed I was on my period constantly and in unbelievable amounts of pain again, I had the coil removed in June of this year and went back in the injection, everything went okay until I started getting serve migraines and had to stop the injection. I then got put on the mini pill called cerazell, I have been on that for about 2 and a half months and since then I have had 3 periods. Nothing seems to control my pain I have been put in co-codamol to try and help with the pain, and it helps as long as I take it religiously. I have been in contact with my hospital consultant who has just said to try some different medication, I am yet to go and see my doctor regarding this.

I am getting to the point where I feel like nothing will ever work for me, I have medical conditions which stop me from going on certain medication and make it hard for the doctors to decide what they can put me on.

I am really stuggling with the pain and I don't know what to do. When the pain is that bad It stops me from even going to work and even doing the simplest of tasks like walking down the stairs.

If anybody has had anything similar and has managed to get help or get it sorted, or has any advice this would be much appreciated!

Thank you!

6 Replies

  • Hey, I know it can be so frustrating to find effective treatment for 6 months and then suddenly it is back! Try and persevere, endo is really a case of trial error and try again! Check out the endo resolved website which has lots of information on taking control of the illness esp holistic therapies. I found acupuncture and massage really helped me, along with the endo diet, taking peppermint tea and cutting back on pain killers that made the bowel worse (ie cocodamol). Ended up on tramadol and paracetamol though I know there's a lot stronger opiates too.

    I've had relative success from prostap but that's been about the only thing that has cleared the pain to a manageable degree and it was short lived. Now preg and very comfortable, just tired and sick rather than in pain as well. Intend on having more surgery/poss hyst if pain returns when baby's born.

    Sorry I don't have a cure as such but there are lots of thing you can do yourself to make your situation better. X

  • Hi thank you for the comment!

    When I was first diagnosed before my operation I was on 2 tramadol 4 times a day due to the pain being that bad, my doctor doesn't want to put me back on tramadol, but also doesn't have a better pain solution.

    I have tried the endo diet, it didn't help I did it for about a year after being diagnosed by recommendation from my hospital, unfortunately that didn't help me. But thank you anyway! I'm going to get a second opinion, I think this may be the best route to go down.

    Thank you! Xx

  • I was on the same dose completely wired to the moon and had a bit of a rough withdrawal! I can see why the doc doesn't want to put you on it again, but don't know why they won't do anything else for you - second opinion both at gp and gynae definitely a good idea. Good luck x

  • Yeah I had a rough withdrawal from it too.

    I don't know either, it's frustrating me and my mum as nothing seems to help, I've had 2 periods this month and I was in so much pain not even the co-codamol helped 😔.

    Yeah I'm going to talk to my gp about it xxx

  • Unfortunately there are a lot of us ladies like you, that havnt found away of keeping our pain under control,

    I had a lap with removal of endo, in March then a hysterectomy in July for adeno, the only pain mess that help me is oral morph and I've only had that a few times whilst in hospital,

    I believe that our only option is total excision surgery, I'm now under an endo specialist, who is sending me for MRI and then I will push fir another lap, and total excision,

    Your gyne, is he a specialist on the BSGE list, if not go to your GP and tell them you need a second opinions and want to see a specialist, if you are in England you are totally within your rights to ask for a referral to a BSGE SPECIALIST

    When you had your lap did they remove any endo, or leave it??

    Also where is your endo


  • Hello

    Yes they removed endo when I had my lap, I have it around by my ovaries and in my Fallopian tubes, that's the only place they saw it, they removed it from around my ovaries but unfortunately couldn't do anything in regards to my Fallopian tubes.

    I'm due to go and see my doctor on the 6th January so I will speak to her and ask for a second opinion and see if I can get referred to a specialist endo clinic. Thank you!

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