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My doctor is talking about doing a full hysterectomy because my endometriosis pain is so bad and nothing else has helped. I've heard that a hysterectomy isn't a cure and the endometriosis can come back. Has anyone had this happen or did your pain get better? Also did you experience any symptoms not related to endometriosis after the hysterectomy?
I had a full hysterectomy and oopherectomy with bowel resection via open abdominal surgery in Jan. I had been in severe pain all the time. Was taking morphine/ pethidine/ dihydrocodine at home along with the gnha analogues to induce menopause which had helped previously but I had developed a 9cm ovarian cyst. I think it is your own decision to decide what is best for you. It has now been 7 mths since my surgery and I now have no pain. I don't have to take any painkillers so far. I am not sure if this will last but so far this has been the best decision I have made. I am now able to function like a normal 31 year old, I even did a bungee jump last mth to raise money for endometriosis UK. I did alot of research into a partial or full hysterectomy. I hope this helps a bit with ur decision and happy to answer any questions if u have any x
Hi all
Firstly thinking of you and sending love x
I suffered with Endo and Adenomyosis -I had 20 surgeries along the way ...many hormonal treatments one of which was Zoladex (25 yrs ago) which was awful ...made me hormonal unbalanced and gain 2stone within a couple of months... I had no HRT with this treatment either something I believe then offer now However without this treatment I won't have got pregnant so blessed !
Unfortunately I had to have c sections so this undid all the good work the pregnancies did!
I ended up in such pain they were concerned it maybe something else and did a CA125 test to check for ovarian cancer ....my bladde r,bowel and womb were stuck in a big lump so didn't want to just whip me in for surgery...so they kept a close eye on me -10mths of CA125 tests every 6weeks..... Levels slowly increasing .....
In March 2010 I ended up having a sub total hysterectomy ...ovaries fine. ... My womb was riddled with Adenomyosis....Endo was all over but worse on right side of pelvic cavity, pouch of douglas and so many adhesions every where ... Kept my cervix ...advised if healthy to keep as helpful for sexual pleasure...
- I did end up with slight damage to my bladder which was repaired but now been mainly pain free got my energy back,can now stand up straight -adhesions made me bent over ,can go to the toilet properly as due to adhesions-I struggled to pass a motion and can now have sex with no pain.All in all best decision I've made!
However it came with a lot of soul searching....weighing it all up ....oh for the benefit of hindsight!!!!
I was so scared before hand. My hysterectomy took over 5hrs and I had to have 6 incisions (small) still keyhole due to all the organs sticking together. But it's given me my life back!!
Make sure you give yourself ample time to rest ....lie flat so when healing nothing sticks together....pace yourself ...this is your time. You deserve this ....you need this as part of your recovery ....plan this as this is equally as important as the op it's self .....you need to commit to the process....we are not good as woman at asking ....we have had to be warriors to survive this!!! No one knows until they truly know how hard living with Endo/Ade is!!! But now is the time to ask ...this is your survival ....do not rush this ....if you can please take the time....I am now 10 years on ...50 years of age
Endo/Adenomyosis really affected my life ...first op at 20 yrs old .... And for 20yrs the impact was huge .. in total I have ended up with 18 ops - laps/cutting the uterus sacral liigaments etc....then 2c sections ..1hyterectomy and a repair. My abdomen as taken a hit of 22ops ...not a pretty picture but I have survived ..
My horrendous monthly pain, fainting, vomiting etc totally stopped after my total hysterectomy and b.s.o .. the pain or symptoms never returned HOWEVER I am childless not by choice and that pain never stops... make your choice wisely x
@A MyEndometriosisTeam Member I had a partial hysterectomy 2 years ago and sadly it did not help the pain at all, in fact it is worse. I had my cervix, uterus and fallopian tubes removed. I chose to keep my ovaries because even though I won't be able to carry my child I'll still have my own eggs to have biological kids. Of course a hysterectomy is never a cure and the pain won't just go away in most cases. I only did mine because everything you can think of to do I tried and I was at my wits end. I kick myself in the ass everyday for doing it but one way or another it would have happened at some point. I had 1 symptom that started bothering me after surgery which was pain in my mid back from where I had an epidural. Whatever the anesthesiologist did he hit a bundle of nerves and caused them to become super sensitive. Other than that nothing but my normal endo pain. I am in no way trying to discourage you from having a hysterectomy but make sure you think it over for a while and know it's something you'll be okay with down the road. Perhaps a partial hysterectomy may be a better option or something to think about? Either best of luck to you! ;D
It won't allow me to post all of my message so other half is on here some where xx
Take care and good luck!!!
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