Hysterectomy for Endometriosis

Can anyone tell me if they have had a total abdominal hysterectomy for Endo? I really would like to know about your experiences good and bad and if there were any complications?

many thanks in advance

Just to update why i asked this

I have endo and pco - have had since early teens now 41. I had been asking for a hysterectomy since i was 29 and now they have finally decided to let me have it.

So far I have had four laps done all diagnostic and laser, the last found my ovaries stuck to the wall, alot of scar tissue and adhesions. The last op i went in for was lap,luna,fentons repair, should have been a day surgery but ended up in there for about 8 days. Post op fever due to to what they called an aveolar collapse i think the other name for it is (Atelectasis) partial or full collaspes i think of the avioli in the lung? 4 days later i had breathing difficaulties where they then suspected a clot on the lung and started my on clexane (sorry if spellings are wrong) thinkfully this was fruitless and i was allowed home when i felt better.

My biggest concerns

1. because of my current health conditions i.e ME, fibromyagia, arthritis, cervical spondylosis to name but a few, i'm finding it very difficault to get myself fit enough and at a level which i would be happy about before going in.

2. I have not yet seen much evidence of anyone having a tah and ovaries removed who have not had any further complications during surgery with the endo being stuck to other areas that could complicate things further.

3 I am scared that i could end up worse off after the op than i currently am.

4 I cant beleive I am also going to say this but even though I have not been able to have sex I can help myself to get to an orgasm, (though sometimes this could be painful and if they take my cervix away etc would I still be able to feel this and be able to reach an orgasm

Its really hard when I am feeling so well at the moment as far as my endo goes and I do know its only because I have been on Zoladex for the last year.

My history of the endo and how its affected my life:-

I have been unable since about the age of 22/23 to have any kind of sexual relationship. When i try to have penetrive sex its like a feeling of being cut inside with a knife, i'm not sure also that when i had treatment for abnormal smears wether any damage was also done as they had not numbed the area fully before burning the bad cells away and as you can imagine i hit the roof and screamed - the comment made from one of the nurses who attending me when i had to go back again was 'I can see where you have been man handled' what a thing to say to someone dam.

I have had really bad pmt/pms what ever they call it its like going into a major depression once a month, i only thought about it recently and said to the consultant ive been treated for depression all these years when i am now certain it was this all along

I do get stomach cramps low back pain and heavier bleeding than I ever used to get (i have to say though there are alot more people who suffer from more bleeding than i do) but nether the less for me its still too much. I was told by a consultant once you dont have to have alot of endo to have pain, often those with small amounts can have terrible pain where those who have quiet alot sometimes dont always have as much pain.

Sorry if i am rambling but I think I have already talked myself out of having this op done. I just wish I could stay on the Zoladex indefinately but I know thats not possible wich is a shame as I know this has been the one thing that has helped so many women.

15 Replies

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  • Hi love i had a TAH for endo,adnemyosis and fibroids 27th nov,ask any questions you would like i will try to help.x

  • Hi there thank you for your reply can you tell me if you had any complications with the op and the endo maybe being stuck to areas like the bowel or bladder? please be as honest as possible.

  • Hi, yes I had a Hysterectomy 13 weeks ago and so far feel great, If you decide to have one you just need to be aware that it is not a CURE for endometriosis but if you are considering one I'm sure you are aware of this. If you have it done you need to make sure that it is done by a specialist who will remove the endometriosis thoroughly at the same time as well - good luck :)

    connect with hundreds of other sufferers on Twitter using #endosisters #endometriosis or follow me at @_EndoHappy

    ????x

  • Hi there thank you for your reply can you tell me if you had any complications with the op and the endo maybe being stuck to areas like the bowel or bladder? please be as honest as possible.

  • I had endometriosis in my bowel, the surgeon had done an MRI preop so was prepared for it. The endometriosis had formed into a nodule on my bowel so there was another surgeon present who did that part if the surgery. I lost alot of blood during surgery and had to have a blood transfusion but that is it really.

    When you are talking about complications what are your main concerns? Do you have endo on your bowel/bladder? Have you had an MRI? x

  • My consultant here would be going in blind. I moved to my current location 2 1/2 years ago all she knows is what ops i have had done and she was writing to my precious consultant to get confirmation of my previous post op problems like i mentioned above.

    This consultant has done no tests at all to see if there is anything else going one around anywhere else. Saying that i have been having cameras etc because of problems i have been having with my bowel which thankfully have been fruitless at present but having two extremily high flammation stool tests we are not quiet sure whats going on there.

    I was looking at contacting the consultant this afternonn to see if i could see her about getting some tests done, well ones that they can, but sadly i do know the only way endo can be seen is via a lap

  • Yes I would contact them, Endometriosis can be seen on an MRI scan, I wouldn't want to get an operation without one? Is your consultant an endometriosis specialist? :)

  • Ive just read the gold standard that someone has posted on here before I replied a lap is the only way to diagose endo in the pelvis areas unless its found in other areas which i'm guessing this means can then be seen. I know from my own past experience this was the only way they could diagnose mine. The MRI and other test would prob be okay if they see the endo as associated nodules like previously mentioned. In my case it would be the other tests to see if its anywhere other than in the pelvic region which may help me decide further.

    (For a definitive diagnosis of endometriosis, visual inspection of the pelvis at laparoscopy is the gold

    standard investigation, unless disease is visible in the posterior vaginal fornix or elsewhere.) copied from the gold standard regulations

  • good luck :)

  • Yes..they missed my End for years with MRI as was behind cervix..lap gold standard

  • i had mine 8week ago.Iwon,t lie it was rough i had endo on bowel and bladder,but no complications as removed succesfully,i still have my ovaries was on deceptyl for 7month and i think my ovaries are just begining to kick in.The only real complication i had was a hematoma which i had to squeeze out daily through a gap in my stitches which put my recovery back a bit.At 8week i feel very tired still this week i went out alone for the first time but i feel it will be a while before i return to work as i can,t stand for the hours required.I am 35 with no children,i am saddenened and tramatised by all this but much of that was the illness before my hysterectomy and i do not regret my decision so far.

  • Hi little star, I am similar to you in that I have no children either and like you it is very sad, I was heartbroken really - I actually had a huge hematoma too which is now just going after 13 1/2 weeks. Be patient with yourself, if are managing to stay off work then do it, I am returning in 3 weeks which will be nearly 17 weeks off but I needed it to recover fully mentally and physically :) you are really not alone, if you are on twitter then please follow me at @_EndoHappy to connect with hundreds of people in a positive friendly way. Perhaps you may also benefit from an antidepressant for a short time, just to aid your recovery :) you can contact me anytime on here if you need a chat - hugs :) x

  • Hi, I had a sub-total hysterectomy because of endo four years ago. It was performed at my local hospital, the surgeon said he couldn't remove the cervix as it would have been too large a hole to repair. I had pain at pre-op levels again within about six months.

    In 2010 I found a new surgeon, Mr A K Trehan in Dewsbury at a Centre of Excellence for the Treatment of Endometriosis. He told me that the best treatment would have been to cut out the endo - the hysterectomy wasn't necessary. I had a lap which showed I had stage IV endo with frozen pelvis. In Nov 2011 he operated to remove the omental peritoneum - the membrane round the pelvic cavity - and all the endo and adhesions he could see (incredibly he also found ovarian tissue, which makes me wonder if my hospital had just stripped me out like a chicken!). This operation helped for another six months but once again I have the pain back every day. I can't go back to Mr Trehan as he went private so I'm on the waiting list at another Centre of Excellence.

    If I knew before my hysterectomy what I know now I would not have gone ahead with it. Endometriosis should be dealt with by specialist consultants. I'd recommend anyone wirh endo (whether considering a hysterectomy or not) to get referred to a Centre of Excellence and find out what your best options are.

    I hope you get some help soon, good luck x

  • Gosh this really has given me food for thought ! I was diagnosed about 11 yrs ago. I've had all the lotions, potions and pills etc all to no avail. The only time I have ever had any relief is during pregnancy (I have been blessed with three children- amazingly the endo never affected my fertility despite one of my ovaries being all twisted and stuck to the wall of my insides !) so I count myself as very lucky. My first was born by c-section and there is a big school of thought that that kind of surgery can aggrivate endo- by creating scar tissue. Anyway, my next two were totally natural. My youngest is now 5 and up until about a year ago my symptoms were 'managed', now I have gone into freefall so I'm starting from scratch with all the treatments etc. My consultant is one of the best (Mr Pugh, Cardiff ) I have seen him both on the NHS and privately (when I've been desperate !) My pain levels are off the chart and I have bled constantly for several months now. I am finding it hard to even function some days. I have, up until very recently, been a full time carer to my elderly Grandmother (she's now been moved into a nursing home, which has absolutely broken me) so I think all the added stress has made things worse. I was told back in Nov after a hysteroscopy (?) and more examination that it's likely I have adenynmyosis (spelling all off sorry !) as the pain along my c-section scar tissue is horrendous. My uterus is also severely bruised (always nice to know!). I also have IBS and an elongated bowel (again, sounds chic doesn't it ?!) I saw a registrar last week and she wasn't in the same league as my consultant. She was really not keen on giving me a hysterectomy because of my age (I'm a practically a teenager of 37 !), though said it was 'totally cure my endo'...ummmm...no it won't ! Well, you can't guarentee that ! Also, the HRT they give you after a full Hysterectomy encourages endo growth doesn't it ? I don't need or want my bits any more. I want the pain gone but if I went through another op and all the recovery etc and it came back..I'd be devastated. So, I'm having the mirena fitted (first time I've had one as the thought of it really didn't appeal before and I'd heard such horror stories !) I guess I'll have to try and will report back ! xx

  • Thank you for your reply, please keep us updated with how you symptoms are after having the mirena fitted. Thank you also for sharing your story.

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