21 years old. Need help please. Lots of pain :(


I am new to this and this is my first post. I was diagnosed with endo when I was 18. Since then I have had 2 laporosocpy and one set of 6 months zoladex. I have recovered from my surgery and my pain is back and even worse than ever. My pain killers have been increased and they still arnt working. It is affecting mine and my long term partners relationship. I dont feel normal I cant go walking or to the gym. I have tried herbal remedies and a tens machine nothing seems to work. Any help you can give me on what the next step for you guys were and what helped you I would really apprichate it. Thanks in advance.

Sorry for the spelling.

Cara xxx

3 Replies

  • Sorry to hear this. Two things I suppose... Firstly, what painkillers are you taking? It might be that there is something stronger or a different combination that works better for you. Secondly, do you have confidence in the consultant who operated on you. Did they specialize in endo? How severe was the endo they found. Severe - in the sense of was in deep and infiltrating? Obviously, even a few patches of superficial endo can cause a lot of pain - but they might be easier to treat than infiltrating disease. For deep and aggressive endo you may need someone with more skill.

    I understand how difficult and frustrating it is. I have daily pain despite heavy pain meds, various surgeries, past hormonal treatments etc, etc. Some people find a change of diet can help a little or a lot. Although a complete endo type diet did not help me massively, there are certainly some foods that flare the endo that affects my bowel and bladder (wheat, citrus, chocolate, certain vegetables). Some people cut red meat out. I can't comment on whether this would have made any difference to me as I've been a vegetarian for over 30yrs anyway.

    Consider trying to find an endo specialist if you have not already - and get a 2nd opinion. If you put a post up asking for people to send you pm recommendations for your part of the county, you might get a response. We are not supposed to name consultants here (though, it baffles me why sometimes) but people might send you a pm.

  • Thank you. I am on 60mg of dihydrocodine daily at the moment I have been with my consultant 2 years and have confidence in him. He found adhesions and a lot of endo also my ovaries had traveled into my back an attached to some tissue he said it was sorted for me but I am still in pain and feel awful telling him it hasnt worked.

  • Do not worry whatsoever about telling him it has not worked. I appreciate it is difficult when you have built up a relationship with someone. All I would say is keep your options open. I spent 5 years under the care of a consultant who I liked tremendously, who was very caring, who, as it turns out, was OK with endo up to a point - but was not really capable of dealing with the level of my severity of endo. I still think he's a great bloke. He's undoubtedly one of the best fertility specialists out there but he was not as good at endo as he thought he was. It was all a bit tense when I told him I was getting a second opinion (in fact I got 2 at the same time to be safe), he did not really like it - but he lived with it. Medicine is a very competitive world.

    As far as your pain meds are concerned. Try in the first instance to ask your GP for a prescription strength anti-inflammatory to go with your DHC (diclofenac has always worked better for me than the others around). Endo creates a lot of inflammation - you need to get that under control. If you are not on the slow release DHC ask your GP if you can try it (Continus DHC) - this should mean you get less peaks and troughs in pain levels. If this doesn't work, ask your GP about adding paracetamol occasionally. Paracetamol has an agent in it which sometimes helps some drugs perform better. If all else fails you might have to ask for something stronger. Of course, no one likes taking lots of pks and hopefully it won't be a long term solution for you but if you can get on something to give you a bit of relief it might give you some breathing space until you can decide on another course of action. Good luck x

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