does any one have any advise?

This may be a bit too much information but i am getting to breaking point. I am 20 years old and have had endo for years. I had my laparoscopy in January in which they found webbing and lazered it off. Since then i have been on my period almost constantly and the pain is no better (go figures), I can't have sex as it is so intensely painful (and i tend to end up crying and bed ridden). Also i have accute back pain , i have been laying on a hot water bottle when i go to bed to ease this and i also have a wheat bag on my tummy but i have noticed that i have now burnt my skin without realising and it looks horrible! Every geini or doctor i see gets embarrassed when i try to explain my problems and have no desire to help me. Also at my age my mother was diagnosed with cervial cancer and they refuse to give me a smear!!! The only option to get one is if i pay a stupid amount of money or i will have to wait until i am 25!

Is there anyone else my age in the same situation that has any advise for me?? much love Becki xx

7 Replies

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  • Hi Becky , sorry to hear your like this. I am 22 and was diagnosed with the same thing 4 years ago. I have the same symptoms as you except the back problems, sex is agony for me and I'd rather not have it I nearly always end up crying also. I can't cope with it either. All I keep getting told is to stay positive and try to keep going. I am sorry I have no advise for you but I am exaperiencibg the same the drs will not give me a

    Smear either until 25, it's rediculous . Take care hun xx

  • Hi Becki - I am sorry to hear what you are going through. From the pain you describe, it does sound like you could have endo in what is called the pouch of douglas, sometimes described as recto-vaginal. This is the space between vagina and rectum. It can be extremely painful, particularly re sex and cause a nasty ache and stabbing pains. Personally, I would badger your GP to refer you to a specialist endo consultant (not a general gyneae).

    All very best wishes x

  • Hi Becki,

    I am 21 and got diagnosed when I was 17 but problems started from when I was about 12 or 13. I seem to have tried nearly every pill going before my doctor would refer me to the gynae and unfortunately it was a long process. Like you I was in unbearable pain and missed a lot of school as I was virtually bedridden and your pains sound exactly the same as mine.

    When I was took for a 1st lap op, it turned out that my bowel has fused to my stomach and there were a lot of adhesions. After that the pain was a bit better but the best thing I had was Zoladex injections for 6 months. There are some side effects but since then I have had a 2nd lap and my adhesions has mostly gone. I now don't take any hormone treatment (in the last 12 months) as I found it was starting to mess with my head and even though I get some pain, I am generally ok and I now just have a normal cycle but with more pain for about 3 days a month which I find is much better to cope with.

    If possible, speak with your doctor and see if they can look at Zoladex as I was put on it 3-6 months after my 1st lap op and think that helped.

    Alternatively if your doctor is rubbish (most seem to get embarrassed which is never helpful or think you are exaggerating), then look at a specialist. I visited Dr Mellor in Macclesfield and he is very helpful.

    Hope that helps and feel free to message me if you want to chat!

    Xx

  • I know exactly what you mean about the burn marks, I've had them constantly now for about 3 years. Apparently they get to a point where they'll never fade and you'll be stuck with them like me. I don't really care about them any more, I'd rather look nasty than be in pain and a really hot hot water bottle is one of the only things that helps xxx

  • thank you guys! you've been such a help and it's no nice knowing i'm not the only one going through this! xx

  • All I can add to this is that when I was in load of pain in my back I found deep massage very helpful. It got to the point where I got my boyfriend to basically pound my back and massage it really hard and that gave me momentary relief.. then I'd go and have a nice hot bath.

    Sounds like you may need some help managing your pain, you could tell your GP that you want to be referred to a pain clinic (the fact that you are so desperate for relief that you are resorting to things which are damaging i.e. burning should be enough for them to consider it)

    good luck xx

  • my advice keep on to the doctors mine was mis-diagnosed by specialist for years my ovaries were adhered to my bowel now its my bowel bladder and stomache with adhesions now there worried as its affecting the nerves in my leg , persevere try and go when your in the worst pain you can cope with unless others have been through it they have not got a clue

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