New diagnosis

Hi,

I have recently undergone investigatory surgery in which they found I have endometriosis. I was surprised to find this out. I have been on the pill for about 6 years due to suffering from difficult periods and the pill I am on means I do not have any bleeding and therefore no problems. I had stomach pain for 8 months prior to the surgery. Basically I have been given no advice or Information. I assumed that because they lazered the endometriosis off that I didn't have it anymore. I am really confused and upset that I havnt been given more support and keep having so many different problems that the doctor just says is normal.

Any advice anyone can offer would be greatly appreciated

Lydia

7 Replies

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  • Hi Lydia

    Period problems will usually accompany endometriosis because both are caused by the same abnormal hormone activity. But they are different problems. Taking the pill is usually the first course of treatment for endo because it balances the hormones and reduces the effect of oestrogen that endo needs to grow. But it is usually only effective in the very mildest endo. So the fact that you have already been taking the pill for 6 years (and therefore effectively a treatment for endo) is not a guarantee that you couldn't have it - which has proved to be the case. You probably already had endo before starting the pill as you were given it for period problems and hopefully it has kept it at bay.

    Lazer treatment can get rid of the mildest endo, but often it leaves some behind. You need to know what exactly was found, what stage it was and precisely what was done. This will be in the report sent to your GP by the consultant that will be in your medical records. So the first thing I suggest is that you get a copy of that, which you are entitled to.

    Click on my user name and have a look at my post on endo and its symptoms. As it is an immune system condition removing the actual endo doesn't cure the disease but aims to remove the source of pelvic pain. x

  • Hi, when they give you your laparoscopy did they say that they lasered the endo, most endo surgeons only use excision now, which cuts the Edno out from root, laser just gets above the surfaces, did they tell you where it was, what type of surgeon was it, gyne or general, ??

    When was your op,

    I've just been diagnosed with endo and adenomyosis which is similar but grows into the muscle of the uterus, my endo cut excised from behind uterus and ligament,

    Are you still in pain??

    If you can give a little more Infor and ask the questions that you need answers to, I or others will try to help you understand,

    How old are you?

    Xxx

  • Hi, thanks for replying. I am 21, they said they lazered what they found which was in my stomach. It was a gynae surgeon. My op was 5 weeks ago. I have still been getting pain. The gynae surgeon discharged my from hospital and didn't want to see me again and told my to see my gp. My gp said I need to wait till 6 weeks after my op to be sure if it has made a difference as the only symptoms I had were stomach pain and nausea. For months they told me I had Ibs though I had no bowel symptoms. since the surgery both my incisions have become infected but they are now better, I have had menstral bleeding which I have not had for many years and the pain has been less apart from the last 2 days when I had got a cold and the pain has come back with a passion . Before now I had stopped myself from researching too much into endo as I thought it would only make me more anxious. I basically thought that if they lazered it off that I was cured..(I realised that is silly now) I knew there was a chance it could come back but I didn't think that endo was something I would now always have and the other synptoms may stay forever. I have put my entire life on hold because of this and I am so worried I will never get it back.

  • It's certainly not silly to think your operation will cure you, and don't be too hard on yourself, but I would suggest you now do your homework, not enought medical professionals know about endo for us sufferers to live our care up to them, a very sad statement but very true,

    If you are still experiencing pain your GP needs to refer you to an endo specialists,

    You need to be strong about this and tell her that you believe that laser treatment isn't good enough to control endo and you should have been given the option to have it excised, you need to ask where it was lasered from and what stage it was/is.??

    I don't understand why your surgeon has sent you back to your GP without a follow up appointment, but that's some doctors for you?

    I've just had my first lap on sat, I had excision of endo behind my uterus and ligament, but mainly my problem seams to be adenomyosis, which is similar but grows into the muscle /wall on the uterus?

    If you would like to ask any questions, please feel free to, don't feel silly about anything you need to find an answer too.

    Make sure you stay stronge, amd if you are still in pain make sure you get that referral from your GP.

  • Thank you, I will ask my gp about it, I know they didn't find much scaring but the gynae surgeon never even mentioned the chance of excision. All I knew was that of the lasering hadnt helped that I would be sent to pain management.I was just hoping it would be gone and over with now. I am looking into holistic treatments. I am seeing a hypnotherapist and I have tried reflexology aswell. I just need to keep going and keep hoping. I am lucky in many ways so i will hold onto that.

    Wishing you well

    Lydia

  • Hi Lydia, I have just (this morning) been diagnosed with Endometriosis and I haven't had a period since my edometrial ablation 18 months ago, which basically scorched the inside of my womb. It was to treat my heavy painful periods, and it worked.

    Apparently you don't need to actually witness a period to get the condition. The cells in your body keep working as though you are having a period even if you are not bleeding. These cells can then attach to other parts of your body, cervix, fallopean tubes, lower intestine or bowel and cause excrutiating pain for 10 days or more.

    I have just been told i will require a full hysterectomy to deal with mine.

  • Hi thanks for replying, im sorry you are having surgery again though hopefully this will help you. I guessi am concerned that they havnt checked that area for endo as I dont have painful or heavy periods because I am on the pill. They just seemed to look into my stomach with the lap. Its worrying because I can't stay on the pill forever as I have aleady been on it for over 6 years And so I am worrying about my fertility.

    Thanks

    Lydia

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