Feeling lost in it all

Having had endo since I was 16 I'm now 35 , I have been told now it is stage 4... Which in itself is tough to deal with .

I also have to deal with my left overy being fused to my bowel a twisted Fallopian tube ontop of ashermand syndrome, recently been told I have nk cells and a mutated blood gene also. Have also had early stages of cerverical cancer... Some would say I'm like a car crash I would say welcome to my life buckle up its a bumpy ride.

I take tramadol.... Diclofenic ... Naproxen ... Ibuprofen 600mg and that for when I bleed which at the moment is for about 12-14 days and then it happens all over again within about 13 days of stopping .. That doesn't include the lovely mid month bleeding.

I've had four operations multiple hsg tests internal scan external scans .... I've recently asked for an elective full hysterectomy only to be told I'm to young and I don't have children... This angers me as I am classed as infertile due to the nk cells and can not carry full term (lost 7 babies since I was 21) yet I am being denined something that will give me a quality of life I have never had......

This disease is life changing and as much as we smile it's hard to explain the pain and the life style changes we have to make to people who don't understand ....

Any help on pain management or anything would help as I am feeling lost in all this

Thank you for replying in advance


4 Replies

  • Hi Helen,

    I'm really sorry to hear you are having such a rough time with it at the moment. Having just been told I am stage 4 myself on Thursday following my fourth laparoscopy I know what a hard pill that is to swallow. I had the same (near continuous) bleeding cycles you seem to be describing until I tried the coil. At first I put it off due to all the horror stories and it has taken a while to settle but I am really glad I tried it. I am now not housebound for one week per month due to bleeding and don't have to worry about scheduling around long periods.

    I also am firm believer in the endo diet. There is a great website called 'endo resolved' which is a really helpful starting point. The endo diet helped to manage my pain and help with a lot of the fatigue associated with the disease. I have been eating really badly the last couple of months and it has definitly caught up with me.

    I hope you find something that works for you soon,


  • Gosh it sounds like more than a bumpy ride, heart breaking in fact. I hope you've managed to get some good support along this journey. I can imagine it feels pretty insulting and patronising to be refused a hysterectomy now after all you have endured but I've read several posts on this forum that support what my gynae said to me (also have stage 4) that a hysterectomy isn't the answer often due to it not necessarily stopping the endo. I was told that incision surgery following treatment on Prostap for a period to 'dry it up' was the best course and this is my experience (pain still gone 18 months post surgery). Make sure you see a certified endo specialist though. Maybe there is a local endo support group who could recommend a surgeon. Fundamentally it's wrong you are still suffering these symptoms on top of everything else. If you don't get any joy, complain in writing to both your nhs trust plus commissioners and your local mp - that soon kick starts the 'system'. Sending you lots of positive thoughts xx

  • What area do you live in? X

  • Hi Helen,

    It sounds like you have enough to cope with, without the endo on top.

    In my opinion, I can't recommend pain management enough. I went in March & from then till now, I've returned to work & started living a "normal" life. Don't get me wrong I'm not completely pain free, but now I'm on amitriptyline & pregabalin. I can do a lot more now. I've seen a physiologist & physio.

    Hope you get the support you need. X

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