Endometriosis

I woke up in pain what I can only decide as labour like pains, my partner and I thought it was maybe my appendix so I was rushed to hospital, I was giving a ultra scan ct scan mri scan internal scan and then they performed key hole surgery, as they thought I had a twisted cyst on my ovarie but the op had to be stopped during it because as the consultant told me your a absolute mess in there!!! It seems yes I do have a cyst 4 infact but the worse thing is I am completely concreted with endometriosis to the point that my bowel and bladder both are covered inside and out and my bowel has attached to my womb. I was discharged from hospital awaiting a specialist who can deal with bowel and bladders. But meanwhile I am in absolute agony 24 hrs a day the morphine doesn't even help now . It's just funny I had no signs or pain of the endometriosis or cyst before now x

Thanks Nichola xxx

7 Replies

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  • Oh Nicola. In so sorry to hear you are so unwell. I know there is nothing I can say to make you feel better. But we are thinking of you and hope you get some relief very soon. Xxx

  • Wow, that is incredible that your insides are so messed up like that and yet you didn't even know until you went to hospital. Other people are in tremendous pain with only the slightest amount of endometriosis.

    I hope you get some relief soon. Make sure you get plenty of rest, being in pain all the time is so draining.

    Lisa xx

  • A similar thing happened to me Nichola last yr. it all started after I came off the pill. Within 6 months I was a regular attendee at a and e in so much pain. Finally got my surgery in dec last yr but apart from removal of one cyst my insides were that stuck together they didn't dare do anything else without speaking to me 1st. They have said that it would be major surgery to try and unstick my bowel from my womb with the possibility of damage to it in surgery. I could also end up loosing my ovaries as a result of surgery too. As we haven't got kids yet I have turned down extensive surgery and opted to go on decapeptyl injections for 6 months which worked wonders for pain as it puts you into a temporary menopause. I have since come off these to try for a baby and yes my pain has come back although not to the extent of last yr x hope you get sorted soon xxx

  • I was exactly the same. I went to the walk In clinic with a pain in my RHS they thought it was appendicitis so admitted me to hospital, an ultrasound scan later I was transferred to another hospital and told I had an ovarian cyst pushing on my kidney which was causing me the pain. I had a lap and was told the cyst was 15cm diameter and they had drained it but the rest of my insides were all stuck with endo. The consultant asked me if I had been suffering with symptoms - I asked her what the symptoms were and she listed them and my response was no to them all. She told me I was very lucky.

    I then had further surgery in April 13 to 'clear' the endo and it resulted in the loss of my left ovary as the endo was that bad on it. I was then put on the GnRH injection for three months - best time of my life, no periods, no pain! I had an ultrasound in November 13 - this showed 2cm and 3cm cyst back on my right ovary, but they were going to monitor them. Dec 13 - first period in 6 months - OMG, this was absolutely horrendous, went to GP who told me everything would be fine as its my bodies way of getting back to normal. Jan 14, I collapsed and was taken to hospital via ambulance due to the pain, this time the GP referee me back to my consultant.

    Consultant said it's more aggressive than we thought, I ended up having an MRI, barium enema and a referral to another specialist. I was told that it looked like the endo wasn't on my bowel, but it was that bad how did I feel about a hysterectomy. I said yes.

    October 14 - I had a complete hysterectomy, plus bowel surgery, plus my appendix removed. The consultant told me it was a complete mess in there but was happy that they got all the endo (fingers crossed). I don't have children (I never wanted them), I'm hoping that I'll be able to live me life to the fullest now and not have to worry about periods etc. I'm 6weeks post op now, started driving again - woohoo, and I feel good. I'm about to start HRT (a very mild dose) just to stop the hot flushes - hopefully fingers crossed I will be pain free.

  • Dear Nichola, sorry for what you experience. I have been experiencing the same, not until I got referred to a specialist Dr. Lang brekke, at Ulleval hospital, in Oslo.Norway. First, he gave me zoladex for some months. I had an operation on 17.11.2014 ( last minday). Everything went well. Now am feeling much better. If you have any chances of being referred to Norway, I can give you the contacts. Good luck :)

  • I am so sorry to hear that this cruel condition has affected you in this way. How are you now?

  • Hi Nichola, so sorry this has happened. Sometimes endo can be silent for years except for pain during periods - the rest of the symptoms you may pass off and not realise you're progressively getting worse as it happens gradually. Also the amount of pain felt relates to where the endo is, not how extensive it is ie. Some people with mild endo can have a lot of pain if it is situated near nerves.

    Make sure you are seen at an endo centre and that they carry out excision surgery

    bsge.org.uk/ec-BSGE-accredi...

    Hope you get referred and treated quickly. Feel better soon xx

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