Losing my rag

This is both a rant and a question, so I apologise in advance.

I am 22 and have been diagnosed with endo for just over two years, suffered with it for three. First diagnostic lap was around this time two years ago, and they didn't remove anything claiming it was too risky. Cue zoladex, no HRT. Total failure. I then went on several different types of progesterone only pill, eliminated all soy from my diet and tried every painkiller under the sun, still in daily agony. I fought, even seeking a very expensive private second opinion, and got my third surgery, endometrial excision by a specialist and agreed to have the coil fitted.

Now I was initially told post surgery I got the all clear and they got everything, excising the most active patch and but I g it for good measure, and cauterising the rest off. However the next morning I saw his understudy person and she said I had endometriosis on my bowel and bladder and may need further surgery with a gynae and bowel specialist and there's a risk of a temporary stoma bag. Understandably I was distraught. However upon attending my next gynae appointment there was no record of what my surgeons understudy had told me in the notes nor in the photos taken via laparoscopy. Has anyone ever had this and what the feck do I do? It's been fourish months since I have had my coil fitted. I had a two month super light period coming off the pill and now spot almost daily. My pain has slowly been increasing, which is torture after being almost pain free for a couple of months. Is this because some pieces were left and othe burn off which means they can regrow? I just don't know what to do, I was told try the coil for six months which is fine, but what options do I have after that has failed? I don't want an oophorectomy, I don't know if I'll get another surgery and even the heavy duty hormone treatments failed. What can I do and where can I go with this?

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  • Hi love,

    Exactly the same thing happened to me, I ended up having the surgery with the colorectal and gynae specialist just over 12 months ago. Was an 8 hour op, I woke thinking why's has it taken so long?? Anyway it was because the whole of my lower bowl was stuck to the front organs with adhesions, it hadn't penetrated through to the inside of the colon which was positive and no stoma needed. 4 days in hospital (I went back to work on day 6 as I felt ok, got really shouted at by doc when he found out) it was all done laparoscopically so recovery time was fine. And I'm told majority of surgerys follow this pattern and only extreme cases require laparotomy and result in stoma. My consultant was an endo specialist make sure yours is if you decide on treatment.

    2 days after op doc does his rounds tells me they've got it all except one bit that is in a place they can't reach surgically and there's no more he can do surgically. Still In a lot of pain most days but not debilitating I have been back to appointments now under my 4th consultant who I have to say is a bit slow! And they've referred me to neuro center who have said my last surgery combined with many years of endo pain and other invasive procedures have left me with a neuropathic pain condition which is chronic I have to take medication for rest of my life; trigger point injections and physio once every 2 weeks. No magic resolve with a hysterectomy for me now :(

    My advice to you, try and keep to hormone therapies for as long as you can tolerate. Make surgery your last resort especially the bowl one its not a bog standered laser of endo

    Sending you lots of well wishes and I hope you find a medical resolve soon

    Xxx

  • Just going from experience with the coil yes the pain did get worse for me too, much worse. After6months to a year the daily pain faded but then I started developing worse pain around my period + started feeling nausea daily and towards the end of year 2 almost daily diarrhoea. I knew it was the coil and told the doc but she insisted I leave it in. A few months passed of them telling me to keep it in when I had finally had enough of being sick and then not being able to find another reason for it, I went against their wishes and had it removed and within a couple of weeks the nausea and diarrhoea stopped.

    I agree with Katie26 to leave it for atleast your 6 months the doc wants and if you can't stand it any longer get it removed, nobody should have to suffer from drugs that aren't working x

  • Ohmydayz!!!!!!!! These are the professionals we have have to trust with are life's are future are mental well being. Rant, rant all you want, because you are right!!! they wouldn't what the same care for them or there loved ones. It took me to get on this site for me to know what to do. I have now been seen by accredited endo specialist and I'm having another lap in the new year and I had a new scan and have found new endo cysts on left ovary. I started my periods really young at 10 I've had nightmare periods years of infertility.I lost a baby:-( they told me I had pcos all the time I had endo and now have endo scarring in several places ( but no notes to say where ) 30 years of suffering was enough for me then they just told me I had to spend the rest of my womanhood or lack of it ........ On strong pain killers I hit rock bottom I'm not gonna lie. I saw no light at the end. The coil was making me depressed my mood swings were of the chart , the bleeding was less but the pain was worse much worse. All the docters have been brain washed to say the coil is not responable for this but after I removed it after a couple of months I felt loads better. The coil does work for some women they love it but it did not work for me and I tried a year and a half I tried, and it nearly made me lose my mind and my partner. Keep on the fighting to get the right care for you. We will all be here for you on this site because we all truly know how it feels.xx

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