had my lap on monday. when i came round was told i have stage 4 severe endo and that my bowel is stuck to my womb,that would explain the pain i've been having in my back passage. i was fitted with the mirena coil and was told this would help with the heavy bleeding but not the pain as endo was severe. hysterectomy was mentioned i feel so scared, i'm lucky ive got 3 beautiful children but the thought of having such a major op at the age of 40 scares the living daylights out of me. Does having a hysterectomy cure endo and what are the side effects of going into early menopause. x x x
No it doesn't, but if most of the endo is on or around the ovaries fallopian tubes and outside of the uterus then it might help a lot, but with severe endo, it could be and probably is on most of the neighbouring organs by now too.
The bonus of a hysterectomy is that it stops you ovulating and stops the endo from receiving the oestrogen it feeds on, but because you are now without ovaries they put you on HRT which does add back oestrogen.
Don't be too hasty, if you can manage a few more periods till the mirena kicks in, it could save you having a hysterctomy for a few years yet and really help with symptoms.
It worked a treat for me. 16 months without a period (I'm mid 40's) and then last week all change I had a proper period with pains and sickness and I felt and feel like death warmed up again.
I hope it's only a temporary glitch and the mirena gets to work again. If it doesn't then I will have it replaced and try again.
I'm stage 4 endo on everything too. Not had kids though.
I am minus one ovary (don't miss it at all) and it wouldn't bother me to have a hysterectomy either to be honest, other than it is the one place than can hold a mirena, so I'm keeping it in me for as long as I can just so I have a thing to put implants in, such as the mirena and perhaps try out any new ones that come on the market.
Hi, I understand u feeling scared of hysterectomy - I am also 40 and was offered one 3 years ago and I turned it down. Damn, wish I hadn't - adopted for more a and it worked for 2 years and bizarrely like the other lady, heavy period came back with chronic pain. Now am begging for hysterectomy - the endo has gotten worse and am in constant discomfort whether on or not. Seeing an Endo specialist for 1st time Monday and am sure he will say its on my bowel too - I shall tell them that they R welcome to even sell my womb on eBay :-).
I have exactly the same a d I am 30 got that exact same talk when I woke up from my op 7 years ago although they said for some reason Mirena was no good for me x I know how you feel. I am engaged to be married next year, and no children. I'm just praying!
Hi, I'm 29 with 2 boys. I've had the mirena coil for just over a year and it hasn't helped at all, if anything it's made things worse. I'm awaiting a hysterectomy now. I had the decapeptyl SR injections for 6mths and felt like a new woman x
Hi Twinny, I would just say that make sure you are armed with all the information before making any decisions. After my first lap in Oct I did not find the gynae very informative or helpful at all. I had stage 4 endo with lots of organs stuck together. Because I didn't think he was understanding me or my symptoms very well I pushed to see a specialist endometriosis gynae.
I have just had a 2nd lap with the endo specialist, a very good one, and he was able to cut away all visible endo, releasing all organs including the bowel. So technically, I am not classed as stage 4 anymore.
Just make sure you really do know what your condition is like and what the options are to treat it before making any radical decisions. Push to be referred to an endo specialist to make sure you are offered the best and most up to date treatment. Good luck and best wishes. xx
I have no answers for you re hysterectomy etc but I just wanted to say that I am pleased that you have found out what is going on and you have been given some answers. Hope it all settles down for you soon.
I read these blogs often and find alot of comfort in the fact I'm not alone! However, I have never written on here myself before now. Your situation sounds very similar to mine - only its a few years later.
I was diagnosed in 2004 with severe endo and my bowel was stuck to womb (I think) :/ I had a lot of the lesions lazered/cut away and I was told at that point that I would find it difficult to have children, so opted to not have any treatment whilst I took it all in. I was pregnant six weeks later on my follow up appointment and have since been lucky enough to have two children. After having my 2nd child, I started to struggle almost immediately (particularly with abdominal pain and horrendous migraines) and as a result I had the mirena coil fitted (the gynae said my only other option was a hysterectomy, which was not practical as a new mum). Whilst the above symptoms stopped, they were replaced with other symptoms, but at least I could function as a Mum with two small children. I went to see the gynae again last week as I'm struggling again and am due to go back in 4 weeks, but she is saying my best option is now to be put through the menopause, as with any surgery there is a risk they might perforate my bowel! I know people who say that a hysterectomy is the best thing they have ever done re: endo, but there are others that say that the endo continues. I suppose it depends on where the lesions are, whether you have a partial or full hysterectomy and what your quality of life is like now. As others have said, make sure you know all your options. I think I'm a bit of a chicken and going to try the induced menopause route first. However, if the gynae said a hysterectomy would stop the endo and was my only option, I'd be there like a shot!
This disease is so debillitating and yet non-sufferers just don't understand how much it can limit your life. Best wishes with finding your way through this minefield of information.
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