hystrectomy

I am 30 years old and been suffering from endometriosis for about 8 years now. Like majority of people i get pain in lower abdo, my lower back, too of my thighs, sometimes i get pain during intercourse, and i get pain on my left side under my ribs down to my overias. I had a lapo to diagnose the condition and my gyne said there is endo present but not a great deal,but doesnt mean it dont hurt as much, she continued to say that even if u have a bit the pain can be severe and sometimes u can have loads and not be in much pain.

I have tried every pill tablet and that didnt work, within a hour of taking it, it were coming back up. I had the pill injection and went from size 10 to 16 in under a year so stopped that, tried the implant and that just made me aggressive. had the gosling injection in my stomach and it just caused my pain to be even more severe than it is, my bleeding were that heavy i didnt dare go anywere. Then had the mirana coil fitted, and that were just like the gosling injections and after 4 months of naggin they finally took it out. I have been back and forth to my gp with the pain and he just gives me tramadol and codine all the time, even though i have told him it dnt work.

My stomach swells up and it looks like i am 8 months pregnant, i get bloated, cnt eat a great deal and not sleepin for more than a couple of hours at night cause of the pain.

My gyne has offered me a hystrectomy and i have accepted, but they cant guarentee that the pain will go. I just want my life back, i got 4 children and want to be a normal mum and be able to plan things with them and do them instead of sayin sorry but i cnt cause of the pain.

Has anyone on here had the hystrectomy and did it work for you?

6 Replies

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  • I am deliberating too, it is not an easy decision. From mountains of reseach I have done myself online and speaking to gp's and talk by an endo specialist gyne. The conclusion I have come to is I am afraid inconclusive! The one thing that seems fairly certain is that it is better performed by a specialist endo gyne surgeon if possible and that unless they deal with it aggressively ie get every single bit out from wherever it is, including adhesions their is a fair chance it can come back. One of the big problems with endo lesions and adhesions (scar tissue) often formed due to inflammation and made worse by repeated surgeries, is trying to keep the surgery performed to deal with it down to an absolute minimum ie only one op (if possible) and even more essentially, getting it 'all' out first time! This is why a specialist endo gyne surgeon (possibly accompanied by a bowel surgeon) if it has affected the bowel/bladder. That way you stand a better chance of getting it all successfully removed in one hit. I say this as I am unfortunately one of those who over many years has had

    repeated surgeries and years of problems and pain. I started with an ectopic and ongoing pelvic pain and then one tube removed damaged, then second tube removed damaged where small deposits of endo found in tube! Then yet more pain after that and a Laparoscopy and Hysteroscopy which a few years later found endo and adhesions had spread like a bushfire.

    Now I am at the stage recently into menopause where the endo should technically not be progressing due to starvation of oestrogen due to hormone changes BUT I am as Gps suspect

    left with adhesions and nerve pain probably due to endo being left from previous ops inflammation and adhesions which were made worse by each surgery! Now they say perhaps I should have a hysterectomy but I am so truamatized by the fear of more big ops and this one would likely be aggressive radical surgery as heavens knows the glued up mess that lurks within my pelvis and stomach (where last op found it had spread)! It is a head scratcher! and of course more surgery risks more adhesions so I am completely confused as to what is best. This is why I said what I said earlier - get the best endo specialist gyne to do the surgery and you stand a far better chance of stopping it in it's tracks hopefully once and for all. However, this endo, adhesion thing is a notoriously stubborn and awkward condition and no one can ever guarantee 100% success but at least you reduce your odds of further problems.

  • Yes i had a hysterectomy in July. I had severe pain that was debilitating. My days love around pain management and hoping i could get through each day. Having the op was the best thing i have ever done. O was only 29 when i had it. But it has changed my life completely. Hope you can make the right decision for you as it is not the best thing for everyone xx

  • I too am in your position, booked in for a hysterectomy on 14th Jan and i'm 27. I know that it doesnt solve endo etc, all that has been explained to me by docs. When i asked a question on here people seemed to think this was an uniformed decision, trust me i've read and read and researched loads like you. From this i was able to speak at length with my gynea and he has agreed to do a lap excision at the same time and repair areas of my bowel and bladder that have been affected (known from previous laps).In total 5 procedures being done in one op which does give more chances of complications but also greatly increases chances of success- we're goin in and we're goin in aggressive!! talk some more with your surgeon and see if they too can do a sweep removal of all traces and give your surgery the best shot you can if you do decide to go for it. hope things work out well for you xx

  • Thanks to everyone who left a message. My gynea has pushed and pushed me to have the hystrectomy for the past 4 years, and when i asked her if it will stop the pain and the symptoms of endo she said more than likely. she has tried to lazer it off but it didnt work.

    The pain seemed to ease when i changed my job (were a care assistant) and then late last year they all started again, but they didnt feel like endo symptons, these were just on my left hand side under my rib down to my overiars, and thats were the pain has stayed and still there. I went to see my gp and he said i think u might have overian cancer and sent me for a scan which turned out that it were a dilated kidney, i then got sent to a kidney specilist and he said nothing wrong with my kidneys. Went bk to my gp and cause it says on my notes that i have endo he just put it all down to that. When i told my gnne that this pain dnt feel like endo pain she didnt answer me and it were the nurse who said it could of attatched to one of your organs. I wanna make sure it endo first before i go through such a major op which has more risk than any other as i have copd as well. Need advice, really dnt know what to do, but i know that i want my life my back and want to live pain free.xx

  • Hi I have agreed to have a hysterectomy as soon as possible I have all your symptoms I see a prof who is a leading endo specialist and he told me that in 90% of patients it makes a remarkable improvement so I'm prepared to take the chance I can't be any worse surely? Good luck and take care

  • Hi Jozey82

    I had a Hysterectomy 6 weeks ago, And apart from the healing process i do think it has worked for me.

    I am 38 so they had left my ovaries, but following 2 clear laps they decieded it may be Andeomyosis.

    Like you said I just wanted my life back i have 3 children, and weekends were spent with Mommy in bed and the slighest thing would wear me out. Constant pain on my lower left side and heavy periods.

    Although ive not been running a marathon after my surgery i do feel that it has worked, the pain seems to have gone, and this weekend i actually did things that a normal family do Saturday and the Sunday!!!!!!

    My consultant did say that it might not work, and it was a massive risk, but for me it was a risk worth taking.

    Hope everything works out for you, this web site is marvelous i have had many a blog and advice on here!

    Good Luck

    Sarah

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